Short post as an update. Pain is still really bad. Tremor is doing - well about the same - but not worse.
I'm just tired of being in pain and I feel lonely. I feel like people are pulling away from me, but in reality they are just living their lives and I am not functional enough to be out there and involved.
A friend told me not to take things so personally, but it's hard when you feel alone and yes, I know my friends/family are thinking about me, but I want to be involved! I want company! I miss my life!
So I go day by day...
But, although I know I have anxiety disorder, I have total reason to be anxious right now.
My short term disability is over Nov 1st unless it is extended and runs out Nov. 15th. I've provided all paperwork as have my doctors but I have no answer yet on extension or on approval of long term disability.
I'm praying tomorrow will bring answers because how much longer can I wait to hear? I thought I would have heard last week!
I am told to relax and trust that everything will be okay - but I like control - some semblance of it! And I am totally out of control without this knowledge - I can't budget or anything! Hard to do meditation and yoga right now. I feel like it will all be okay but without knowing and it out of my control it is very difficult.
Pain got worse after my annual woman exam and then a little better and now stress seems to be making it unbearable!
I wish I could go back to work and then know money was coming in and health insurance covered, but I am simply too disabled to work - I couldn't if I pulled all my strength together.
I have to trust and have faith. As hard as it is to do right now.
Thank heaven for my husband although he's pretty stressed right now too. But he is so good to me.
Faith we will make it through. Dear Lord, please let me hear what's what tomorrow!
Hope this finds you all well - Best Wishes
Elizabeth
Monday, November 1, 2010
Friday, October 22, 2010
Narcolepsy and Chronic Migraine
I went to see my sleep doctor the other day as I do every six months to keep up on things.
I was referred to her from my neurologist for having sleep issues - one keeping me from having a good night's sleep - my neurologist thought it might be a contributor, never getting a good night's sleep, to my chronic intractable migraines.
I had no idea - this was almost 2 years ago. I thought she was right that I didn't get good night's sleep but I thought was due to two things: 1) being in pain even while I slept; and 2) one thing I had experienced most of my adult life - "sleep paralysis with hallucinations" - I called them night terrors but have been corrected as night terrors are a different phenomenon.
Apparently, night terrors are not something the patient remembers and occur in deep sleep.
Sleep paralysis with hallucinations on the other hand (SPH I'll call it) can occur to anyone at any stage in their life but generally don't stay or reoccur often. I had been having them nightly or almost nightly for years. I would go sometimes weeks without them but they came back and would stay night after night keeping me from sleep.
SPH - basically occurs when you become conscious during REM sleep. See, your body puts itself into a kind of comatose state during REM to keep you from acting out your dreams - running, etc). So, when you become conscious (not what I knew was happening) you can't move and you have a terrified feeling. You know you are in bed and what's around you but you can't move and start struggling to wake up. With hallucinations, I can only describe my own, I would sense a presence, hear someone opening the door and coming in and toward me while I struggled to scream or move and couldn't, or a lot I would see a figure at the bottom of my bed and then moving toward me - coming at me - and I would struggle to scream or move and couldn't and was terrified. I have had someone tell me they have seen two figures before so could be different. It's a faceless figure and it is terrifying. I would fight and fight to wake up and scream and eventually would get a little scream out and finally "wake up" and scream - alarming my husband as I bounded up to sit up. I would be terrified, lie back down and go straight back into the same thing - over and over and over again for sometimes hours before I slept.
Sometimes I would only think I had woken up and laid back down when I hadn't and it would start all over again - or pick up where it left off. Needless to say - terrifying and then I would just try to stay awake.
As I said, this can happen to anyone. But when I explained my chronic pain and these events when I slept - or tried to - my sleep doctor - who had worked for five years at the Michigan Head & Neurological Institute where I had been hospitalized so she knew those doctors and a lot about migraines - she said she thought it could be something else - Narcolepsy. What? I thought there is no way I have another disorder. She talked to me about that it may be true I am having trouble with the migraines because I don't get a good night's sleep - more to the point that I wasn't getting enough deep sleep. But the only way to truly diagnose Narcolepsy is through a sleep study in the hospital. I had other symptoms, excessively tired during the day, more of a night owl, confusion and I would fall asleep when I didn't plan to when I thought I was staying awake - which annoyed my husband. But I did not fall asleep in my soup or while driving, etc. It wasn't like the movies - and she said rarely is. Some of that and other is called cataplexy - so I was diagnosed after the sleep study with Narcolepsy without Cataplexy which is just as common as Narcolepsy with Cataplexy. They actually couldn't determine if I had cataplexy unless an event occurred. Ruling out my NCS as Cataplexy episodes.
The sleep study in the hospital was no fun as you are hooked up to all these wires and told when to sleep and when to be awake and when to take naps, etc. I thought, I will never be able to sleep like this! But I did, and they recorded all my data. ONE of the primary ways to diagnose Narcolepsy is that you spend most of your sleep in REM and hardly any in deep sleep - causing the being tired during the day - and the wires and all record what state you are in. The other is how long once you fall asleep it takes you to go into REM.
Apparently the average person goes into REM sleep after about 90 minutes of sleep and then into REM again shortly before waking. Having vivid dreams which I have always had - always felt like I dreamed all night - I thought that was normal - but other things also can cause this. I didn't know that you really don't spend all that much time in REM. Except for Narcolepsy - and me. During the test I spent almost all night in REM and every time I came out of it and into deep sleep - the restful sleep - I would jump back out of it and back into REM.
As I said, narcolepsy is diagnosed also on how long it takes you to fall into REM. In my test - I went into REM within 5 minutes of falling asleep all except twice in which it was still less than 10 minutes. That's a diagnosis.
When I did research on the subject myself and the information packet they gave me I could tell that even though I had migraines, before my chronic non-stop migraine, I had these symptoms. I just never added them up? I thought I was tired because I was a single mom, working, going to school, then working 60+ hours a week and trying to take care of my kids and life, etc, etc, etc. I thought the SPH - which I called night terrors were just a fact of my life because I had had a hard time as a child and it was a scar following me around.
As we waited for the diagnosis I told my husband there was NO way I had narcolepsy - he disagreed and said he thought I did. He had teased me about it often but that was teasing. Turns out, I have narcolepsy.
There isn't anything they can do to stop the sleep cycle or force me to go into and stay in deep restful sleep. The medication though has stopped the sleep paralysis with hallucinations - except one time I forgot to take my second pill and it happened again for two nights and when I was on a lower dosage it was happening according to my husband as he woke me up from screaming but I didn't remember it.
I still have vivid dreams but am so relieved to not be scared to go to sleep. I am still tired all the time, fall asleep when I don't mean to, etc.
This is the best we can do right now. They have suggested a medication that only one pharamacy in the US has - it's that regulated - but I have said no and my neurologist says no also. Due to my past, etc. It would keep me asleep - maybe - but I wouldn't have any control - the street name is GHB but of course this prescription would not have most of the bad side effects of a street made drug. But, it is possible if I am woken up I could do anything and not have memory. That is terrifying to me.
I know there is a medication on the market and I was prescribed but never took that is similar and I have friends that have taken it and found that they woke up and ate or other things and had no memory of it. This is different than that in some way as that is available in all pharmacies.
So, one thing is good that I don't have the SPH - what I called night terrors anymore if I stick to my medication. I still don't get enough restful deep sleep which absolutely contributes to my migraines and not being able to get a break away from the pain even while I'm asleep. I am on disability now, so my sleep doctor suggested I take scheduled naps and go ahead and stay awake when I need to at night - basically - sleep when your body wants to.
Makes sense. Sometimes I can't sleep because of how bad the migraine is but then I will feel like I lost time and find that I did go to sleep for awhile. I'm tired but meditation helps that a lot. Really a lot, when I can do well. I have had trouble lately getting into a good meditative state due to the constant ringing in my ears and migraine and a couple times I have accidentally fallen asleep - narcolepsy. But, when I do which is several times a week - have a good meditation and get into a good meditative state - when I have the time and no interruptions to take all the time I need - I feel rested and I can relax and then I can do a great yoga stretch as my muscles need it so badly. They are so tight from the pain and without the meditation the stretch doesn't work because the pain is keeping the muscle bound and tight.
So, I guess I wanted to talk about my narcolepsy and give some support for others in that state. Express my fear of sleep due to the "night terrors" which are not night terrors. And show how multiple chronic illnesses can compound on each other. Because of my narcolepsy I have more trouble with my chronic intractable migraine. The pain, constant pain, that I tend to put first and foremost - because it screams the loudest. Especially now that I'm not screaming in my sleep :)
Best wishes to all and take care of yourselves!
I was referred to her from my neurologist for having sleep issues - one keeping me from having a good night's sleep - my neurologist thought it might be a contributor, never getting a good night's sleep, to my chronic intractable migraines.
I had no idea - this was almost 2 years ago. I thought she was right that I didn't get good night's sleep but I thought was due to two things: 1) being in pain even while I slept; and 2) one thing I had experienced most of my adult life - "sleep paralysis with hallucinations" - I called them night terrors but have been corrected as night terrors are a different phenomenon.
Apparently, night terrors are not something the patient remembers and occur in deep sleep.
Sleep paralysis with hallucinations on the other hand (SPH I'll call it) can occur to anyone at any stage in their life but generally don't stay or reoccur often. I had been having them nightly or almost nightly for years. I would go sometimes weeks without them but they came back and would stay night after night keeping me from sleep.
SPH - basically occurs when you become conscious during REM sleep. See, your body puts itself into a kind of comatose state during REM to keep you from acting out your dreams - running, etc). So, when you become conscious (not what I knew was happening) you can't move and you have a terrified feeling. You know you are in bed and what's around you but you can't move and start struggling to wake up. With hallucinations, I can only describe my own, I would sense a presence, hear someone opening the door and coming in and toward me while I struggled to scream or move and couldn't, or a lot I would see a figure at the bottom of my bed and then moving toward me - coming at me - and I would struggle to scream or move and couldn't and was terrified. I have had someone tell me they have seen two figures before so could be different. It's a faceless figure and it is terrifying. I would fight and fight to wake up and scream and eventually would get a little scream out and finally "wake up" and scream - alarming my husband as I bounded up to sit up. I would be terrified, lie back down and go straight back into the same thing - over and over and over again for sometimes hours before I slept.
Sometimes I would only think I had woken up and laid back down when I hadn't and it would start all over again - or pick up where it left off. Needless to say - terrifying and then I would just try to stay awake.
As I said, this can happen to anyone. But when I explained my chronic pain and these events when I slept - or tried to - my sleep doctor - who had worked for five years at the Michigan Head & Neurological Institute where I had been hospitalized so she knew those doctors and a lot about migraines - she said she thought it could be something else - Narcolepsy. What? I thought there is no way I have another disorder. She talked to me about that it may be true I am having trouble with the migraines because I don't get a good night's sleep - more to the point that I wasn't getting enough deep sleep. But the only way to truly diagnose Narcolepsy is through a sleep study in the hospital. I had other symptoms, excessively tired during the day, more of a night owl, confusion and I would fall asleep when I didn't plan to when I thought I was staying awake - which annoyed my husband. But I did not fall asleep in my soup or while driving, etc. It wasn't like the movies - and she said rarely is. Some of that and other is called cataplexy - so I was diagnosed after the sleep study with Narcolepsy without Cataplexy which is just as common as Narcolepsy with Cataplexy. They actually couldn't determine if I had cataplexy unless an event occurred. Ruling out my NCS as Cataplexy episodes.
The sleep study in the hospital was no fun as you are hooked up to all these wires and told when to sleep and when to be awake and when to take naps, etc. I thought, I will never be able to sleep like this! But I did, and they recorded all my data. ONE of the primary ways to diagnose Narcolepsy is that you spend most of your sleep in REM and hardly any in deep sleep - causing the being tired during the day - and the wires and all record what state you are in. The other is how long once you fall asleep it takes you to go into REM.
Apparently the average person goes into REM sleep after about 90 minutes of sleep and then into REM again shortly before waking. Having vivid dreams which I have always had - always felt like I dreamed all night - I thought that was normal - but other things also can cause this. I didn't know that you really don't spend all that much time in REM. Except for Narcolepsy - and me. During the test I spent almost all night in REM and every time I came out of it and into deep sleep - the restful sleep - I would jump back out of it and back into REM.
As I said, narcolepsy is diagnosed also on how long it takes you to fall into REM. In my test - I went into REM within 5 minutes of falling asleep all except twice in which it was still less than 10 minutes. That's a diagnosis.
When I did research on the subject myself and the information packet they gave me I could tell that even though I had migraines, before my chronic non-stop migraine, I had these symptoms. I just never added them up? I thought I was tired because I was a single mom, working, going to school, then working 60+ hours a week and trying to take care of my kids and life, etc, etc, etc. I thought the SPH - which I called night terrors were just a fact of my life because I had had a hard time as a child and it was a scar following me around.
As we waited for the diagnosis I told my husband there was NO way I had narcolepsy - he disagreed and said he thought I did. He had teased me about it often but that was teasing. Turns out, I have narcolepsy.
There isn't anything they can do to stop the sleep cycle or force me to go into and stay in deep restful sleep. The medication though has stopped the sleep paralysis with hallucinations - except one time I forgot to take my second pill and it happened again for two nights and when I was on a lower dosage it was happening according to my husband as he woke me up from screaming but I didn't remember it.
I still have vivid dreams but am so relieved to not be scared to go to sleep. I am still tired all the time, fall asleep when I don't mean to, etc.
This is the best we can do right now. They have suggested a medication that only one pharamacy in the US has - it's that regulated - but I have said no and my neurologist says no also. Due to my past, etc. It would keep me asleep - maybe - but I wouldn't have any control - the street name is GHB but of course this prescription would not have most of the bad side effects of a street made drug. But, it is possible if I am woken up I could do anything and not have memory. That is terrifying to me.
I know there is a medication on the market and I was prescribed but never took that is similar and I have friends that have taken it and found that they woke up and ate or other things and had no memory of it. This is different than that in some way as that is available in all pharmacies.
So, one thing is good that I don't have the SPH - what I called night terrors anymore if I stick to my medication. I still don't get enough restful deep sleep which absolutely contributes to my migraines and not being able to get a break away from the pain even while I'm asleep. I am on disability now, so my sleep doctor suggested I take scheduled naps and go ahead and stay awake when I need to at night - basically - sleep when your body wants to.
Makes sense. Sometimes I can't sleep because of how bad the migraine is but then I will feel like I lost time and find that I did go to sleep for awhile. I'm tired but meditation helps that a lot. Really a lot, when I can do well. I have had trouble lately getting into a good meditative state due to the constant ringing in my ears and migraine and a couple times I have accidentally fallen asleep - narcolepsy. But, when I do which is several times a week - have a good meditation and get into a good meditative state - when I have the time and no interruptions to take all the time I need - I feel rested and I can relax and then I can do a great yoga stretch as my muscles need it so badly. They are so tight from the pain and without the meditation the stretch doesn't work because the pain is keeping the muscle bound and tight.
So, I guess I wanted to talk about my narcolepsy and give some support for others in that state. Express my fear of sleep due to the "night terrors" which are not night terrors. And show how multiple chronic illnesses can compound on each other. Because of my narcolepsy I have more trouble with my chronic intractable migraine. The pain, constant pain, that I tend to put first and foremost - because it screams the loudest. Especially now that I'm not screaming in my sleep :)
Best wishes to all and take care of yourselves!
Friday, October 15, 2010
Essential Tremor and Chronic Migraines
Today I would like to talk about my Essential Tremor and chronic intractable migraine. I have to input the migraine in there because it infiltrates everything as I have had the constant migraine for so long now. It is hard to remember not being in pain. I relish the days of getting 3-5 day migraines even twice or three times a month. I wake with it, I sleep with it, it is always with me. For a little while I had the pain management down so that even though it was constant it wasn't disabling completely but not now. And it along with my anxiety disorder seem to have kick started into high gear my Essential Tremor which is now disabling.
I was diagnosed with Essential Tremor or Familial Tremor about 15 years ago - maybe longer but I think that's about right. My tremors started long before but I didn't get diagnosed until it became a problem. Oh, how I thought it was a problem then? Being that it is so much worse now, I long for those days.
My mom has a tremor too as well as my husband. Not bad, like mine was in the beginning. And it could be that was all there would be for me as well. Essential Tremor doesn't always progress or may progress so slowly that you are much older when it becomes a problem. I thought since my mom's still wasn't that bad that mine also wouldn't get worse.
Let me back up. I put a link in for the International Essential Tremor Foundation - a non-profit organization that has a lot of information about what it is, etc. In the start my hands would tremble when I was trying to do something or if I wasn't paying attention but a small tremble. I thought it was weird but if I concentrated I could get them to stop. I practiced painting small figurines - something very precise - as an exercise to control the tremor. Sometimes I would hold the small paint brush and as I got close to the figurine my hand would start to shake and I would have to stop and concentrate and maybe hold the hand with the other hand and then work to paint my figurine.
Then, it got worse - I wasn't able to paint small figurines but it still wasn't too bad. But, it did cause me embarrassment at times. If I was putting on mascara then I found that my hand holding the tube was shaking badly and uncontrollably - like because I wasn't paying attention to it I thought. Embarrassing was when the same/similar thing would happen at work when I would go into my bosses office or another director or even colleagues office with papers in one hand and then start talking about something and not paying attention to that hand it would shake and the papers couldn't lie that it was happening - it was noticeable. So then maybe only when I'm holding objects I thought and not paying attention to that hand.
Then, it was happening other times and places - embarrassing. I taught a lot for my national firm classes with people from all over the country in our firm. The subjects were sometimes basic - a class for first or second year CPAs on completing basic returns - and sometimes very technical - higher level CPAs and in depth technical tax topics as my specialty is. It didn't seem to matter. At this point I had been diagnosed. I knew my hands may and probably would shake because they did that - it wasn't under my control. I would try to always hold tight to a bottle of water and not papers. I had to hold the remote for the slides - although I was always happy when it didn't work and I would have to go to the computer to move forward the slides. I didn't have to hold notes in my hand because thankfully I seemed to have a gift for talking and when I used detailed notes it didn't feel right for me - I was better on the whim and I knew my subject and I could recall real life examples - new ones each time so it didn't get dry.
Then I found one time teaching a few students watching my hands - yes they were shaking - but it was a distraction - generally this is lower level classes but still. I needed them to focus on the material and my words and not look at my hands OR think I was nervous which would lose their confidence in me.
So, I began starting classes with my introduction telling them that I was not cold nor nervous, I simply had a tremor that was genetic and no big deal and would happen and not to focus on it. It was a great help! I found people stopped looking and wondering and paying attention! It only took a sentence at the beginning and no long explanation. I remember one time part way through another teacher/organizer who had come in to the class room to listen asked in the middle of my presentation if I wanted the laser pointer and I said oh, no with the way I shake the students wouldn't know what I was trying to point at and better I go to the screen and touch it (something like that) and there was a laugh and then we moved on. I was so happy.
I love to teach. The tremors got worse and I never knew when I migraine would happen. Or better to explain after I had the chronic constant migraine but low enough pain (or enough adrenaline because I loved teaching) I could still teach classes, but now I had to have sunglasses and be wary of students wearing a scent that could send me reeling! I thought and was right, what worked before would work now. I started off with the tremor sentence as before and then without going into "I have constant migraines" I just simply stated that I was prone to migraines and had light and smell sensitivity and that I would try to teach the class without my sunglasses on if we could lower the lights but even so, please be patient with me if I need to put them on. Again, worked great. Although NOW, during times classes were working on problems or during breaks especially someone would want to talk to me about my migraines and since these were students and worked for my company I didn't feel comfortable revealing all. Of course some would want to say I have them too sometimes and a lot would want to say "have you tried..." This was off topic and something I am very sensitive too since I have tried it - whatever it is - I haven't had anyone come up with an idea I haven't tried so it gets tiresome and aggravating and I can't express that in this situation. So, as politely as I could I would weave my way through these conversations using distraction mostly to change the subject.
Okay so if it's happening teaching of course it is happening everywhere - client meetings! And needing sunglasses at client meetings. I tried the same thing as I did with classes - just say it quick and move on. Here I am, a tax manager with high technical expertise working with clients on international tax/business transactions and other high technical matters. I was mostly a consultants for colleagues' clients as my area was so technical based and brought in when their clients had issues - some of which meant my involvement for months or multiple times during the year and/or annually for a certain area so even if not my clients, I got to know them well. Which worked out well when my disability due to migraines got so bad that I needed to reduce my personal client load and work from home, etc. Being a consultant for colleagues worked great.
It worked the same with clients as with teaching - clients were able to quickly move on and take me seriously and not think I was nervous from tremors or weird for sunglasses and we didn't focus or spend time on it and got down to business. A lot of clients would automatically turn off or down the lights in the conference room when I was coming so I could have my sunglasses off and handy and not a word needed. Now, clients that got to know me did often ask how I was doing, but I kept it short and we moved on. Staff of clients - rather than the CFO or similar positions - on a smaller scale but when worked with me over a period of time did also want to offer suggestions and the like or send me emails asking how I was doing. I was able to handle.
Then to my surprise I received a review from my Team Leader and our Head of Tax Department (I worked closely with my Team Leader as my supervisor and someone I worked with often and who honestly I think had some problems with me personally because I wasn't the person I used to be working 80 hour weeks and always on call since I had a few months earlier put in official (I had done unofficial but I thought was official requests) requests for special accommodations for my disabilities - only working 40 hours a week, working primarily from home, etc. Well, they sat me down and told me that it was inappropriate for me to tell clients that I had any disability. I asked well, isn't it better than them thinking I'm shaking because I'm nervous or that I'm wearing sunglasses because I'm "shady?" They didn't care, they said I shouldn't tell anyone. Oddly both of them had been present separately but on numerous occasions at client meetings where I did this and then we drove back to the office together and never once had they said then it was a problem - I just got praise. I still have no idea where this review came from or why. I can make assumptions or judgments but without knowing what goes on inside the head of someone else and without them telling you - you can't know. I asked why they never mentioned it when they heard me do it numerous times before and I just got change of subject that it wasn't professional and that clients had complained. I asked which clients but they wouldn't say - none of the clients ever acted that way toward me but perhaps someone felt uncomfortable and said something.
The same they said for my dealings with staff members - well I can't hide that I keep my lights off in my office and all the staff saw me go through the change and the doctor visits and all that - I only got questions and caring remarks. Whatever. But then also they said when having conference calls with clients or even working back and forth with clients on an issue and phone calls and emails that I shouldn't be telling them that I work from home. Well, I never thought that would be a problem. I simply told clients I worked primarily from home so they would know to call me on my cell if they wanted to get a hold of me. I didn't say why I worked primarily from home - although some may have deduced. I was being reprimanded for saying I was working from home? I was supposed to lie and say I was in the office? Still don't know.
Anyway, back to the issue and away from that drama my chronic pain and anxiety problems kick started my tremors much further. Into my hands wildly and uncontrollably and added jerking, into my arms, into my legs at times - generally driving or standing and nervous - and it is bad.
Now, I can't eat a sandwich because I shake all the food out of it and have to set it down and put everything back in and try again. But then eat with a fork and then my hand will shake so bad uncontrollably against the plate that my husband says I may shatter it. I have to carry drinks with two hands and have a lid and straw or not fill a cup so I don't splash it everywhere. Shaving is my legs is hazardous to say the least. Trimming fingernails and toenails is a joke. Seeing me put on makeup looks ridiculous as I lean my arms against things to steady them to do things. Jewelry - bracelets I figured out although it takes some time I can hold one arm against the wall and the other somewhat if I am in a corner and I can get it done. Earrings I try to keep simple and it takes a long time if there is a separate backing. Brushing my teeth - again funny looking as I try to steady things. Contact lenses - I may have to stop - I wear 30 day/night contacts which I tend to wear longer than a month but I have good eyes and no problems - yes hard to get in sometimes with shaking - takes time - BUT the last time I took them out it was too long and I jabbed myself in the eye with my hand jerking that it was ridiculous and I'm nervous about putting back in. I usually go a couple months contacts then a couple months glasses - if my tremors don't get under control, contacts are history so I don't damage my eyes. Oh, so many other activities I could tell you about but you get the picture.
So, then there is the public, as I said, it's bad now, really bad and I can't control it. I am on short term disability and was when it got this bad so no client issues but when I go to a store and I'm shaking so bad it isn't my imagination that many people look at me like a junkie. I already don't look great with losing my hair from my hypothyroidism, sunglasses inside and maybe a hat due to migraine pain and I look weary - pain does that to you. Then, I'm shaking and I see it in their eyes. I say I have a tremor like Katherine Hepburn and it's no big deal, but apparently there are a lot of people that don't remember her - young generation - and they take a step back/sideways glance and I can see they still think junkie. I try to explain further but with my constant pain the more I talk sometimes the less sense I make and it makes it worse. I hate that so much.
But I had a good experience the other day. My husband was at work and I had to go to get something copied and faxed and something expressed mailed. So, off I went - I thought maybe I can do the copy and fax machine myself but my hands and arms said NO. So, I mustered my courage and went to the clerk and said "I have a disability and I know you have self serve but I can't use them and here's what I need." I explained no further what my disability/disabilities were or anything else. And the clerk saw me shaking uncontrollably as I tried to hand her the papers and she saw me need to sit down and cover my head but she didn't ask and she helped me! Then, the post office - I had courage now, although I also had severe pain now since I had been out doing things for over an hour - too long. But, I knew that the express mail label needed to be filled out there and the papers put in the envelope. I waited in line and went when called and said "I have a disability and I need help - can you put this in the envelope and then fill out the express mail card for me please? I know I should generally but I am not able." I said nothing else and she also helped me without hesitation or further questioning. And neither asked me to tell them more or anything. It felt great although I did have to come home and take medication and rest for hours to be able to move again - first thing Meditation as soon as I was able to concentrate again. Then yoga stretching and more rest.
I hate that two small errands takes everything out of me and more but the great news is I succeeded and I got help and maybe other customers looked at me strangely but I don't know, I didn't pay attention to that because the clerk was helping me and didn't do so. It was such a success and such a lesson for me.
My neurologist says that it is the anxiety more than the constant pain that kick started my Essential Tremor to accelerate. I think pain too - because I have anxiety about pain and fear of pain. Anyway, I did some research and it showed that anxiety can be a cause of an Essential Tremor accelerating to next level. Bad news is it also said that once accelerated it is hard to stop and very unlikely to reverse. Bad for me that one of the next levels could be head and neck tremors which my migraine would not handle well as head movement of any kind causes a lot of pain. I have to be careful and always slowly move my head. If I turn my head at a noise - sharp increase in migraine pain. So I do not want an uncontrollable tremor to end up there.
I think that's why my neurologist the last two visits has been intent on focusing on the tremor with the migraine. Now, there are medications I've tried before for Essential Tremor - propanolol (sp) and others but they all lower your blood pressure. Well, here's where my NCS comes in - I have low low blood pressure normally and lowering it causes NCS episodes - fainting, etc. So, those are bad.
My neurologist is working on medications that both show promise with migraine pain and with tremors. They don't want it worse. The first one didn't work for more than one reason and the second I am now on takes like a month to ramp up on so I'm still not yet on the full dose. But, I have noticed that for a little while after I take it the tremor isn't as bad but then comes back. I take three times a day but not at first and as I said not fully ramped up on full dosage. I still have all the problems I had before but I do see a time after I take the medication that it seems less and that it gets worse when I get more active or more nervous/anxious about something. So, I am hopeful. I don't expect it to reverse my tremors from the level it is at now, just hopefully keep it from advancing any further and my neurologist plan as well.
So, there's some information, some personal stories, some bad news and some good news.
For those with Essential Tremor or with a tremor that you haven't had diagnosed, as I said there is a link attached. But you should see a doctor. Some tremors are due to medications or may be another type of Tremor diagnostically.
Even if you have a tremor due to medication - I hope this entry gives you some feeling that you are not alone.
As always I hope you are all well and find something in here that you can relate to and that you know you are not alone. Chronic illnesses and disabilities are difficult to live with but we can do it and we can find hope and friends and support.
Take care of yourselves,
Elizabeth
I was diagnosed with Essential Tremor or Familial Tremor about 15 years ago - maybe longer but I think that's about right. My tremors started long before but I didn't get diagnosed until it became a problem. Oh, how I thought it was a problem then? Being that it is so much worse now, I long for those days.
My mom has a tremor too as well as my husband. Not bad, like mine was in the beginning. And it could be that was all there would be for me as well. Essential Tremor doesn't always progress or may progress so slowly that you are much older when it becomes a problem. I thought since my mom's still wasn't that bad that mine also wouldn't get worse.
Let me back up. I put a link in for the International Essential Tremor Foundation - a non-profit organization that has a lot of information about what it is, etc. In the start my hands would tremble when I was trying to do something or if I wasn't paying attention but a small tremble. I thought it was weird but if I concentrated I could get them to stop. I practiced painting small figurines - something very precise - as an exercise to control the tremor. Sometimes I would hold the small paint brush and as I got close to the figurine my hand would start to shake and I would have to stop and concentrate and maybe hold the hand with the other hand and then work to paint my figurine.
Then, it got worse - I wasn't able to paint small figurines but it still wasn't too bad. But, it did cause me embarrassment at times. If I was putting on mascara then I found that my hand holding the tube was shaking badly and uncontrollably - like because I wasn't paying attention to it I thought. Embarrassing was when the same/similar thing would happen at work when I would go into my bosses office or another director or even colleagues office with papers in one hand and then start talking about something and not paying attention to that hand it would shake and the papers couldn't lie that it was happening - it was noticeable. So then maybe only when I'm holding objects I thought and not paying attention to that hand.
Then, it was happening other times and places - embarrassing. I taught a lot for my national firm classes with people from all over the country in our firm. The subjects were sometimes basic - a class for first or second year CPAs on completing basic returns - and sometimes very technical - higher level CPAs and in depth technical tax topics as my specialty is. It didn't seem to matter. At this point I had been diagnosed. I knew my hands may and probably would shake because they did that - it wasn't under my control. I would try to always hold tight to a bottle of water and not papers. I had to hold the remote for the slides - although I was always happy when it didn't work and I would have to go to the computer to move forward the slides. I didn't have to hold notes in my hand because thankfully I seemed to have a gift for talking and when I used detailed notes it didn't feel right for me - I was better on the whim and I knew my subject and I could recall real life examples - new ones each time so it didn't get dry.
Then I found one time teaching a few students watching my hands - yes they were shaking - but it was a distraction - generally this is lower level classes but still. I needed them to focus on the material and my words and not look at my hands OR think I was nervous which would lose their confidence in me.
So, I began starting classes with my introduction telling them that I was not cold nor nervous, I simply had a tremor that was genetic and no big deal and would happen and not to focus on it. It was a great help! I found people stopped looking and wondering and paying attention! It only took a sentence at the beginning and no long explanation. I remember one time part way through another teacher/organizer who had come in to the class room to listen asked in the middle of my presentation if I wanted the laser pointer and I said oh, no with the way I shake the students wouldn't know what I was trying to point at and better I go to the screen and touch it (something like that) and there was a laugh and then we moved on. I was so happy.
I love to teach. The tremors got worse and I never knew when I migraine would happen. Or better to explain after I had the chronic constant migraine but low enough pain (or enough adrenaline because I loved teaching) I could still teach classes, but now I had to have sunglasses and be wary of students wearing a scent that could send me reeling! I thought and was right, what worked before would work now. I started off with the tremor sentence as before and then without going into "I have constant migraines" I just simply stated that I was prone to migraines and had light and smell sensitivity and that I would try to teach the class without my sunglasses on if we could lower the lights but even so, please be patient with me if I need to put them on. Again, worked great. Although NOW, during times classes were working on problems or during breaks especially someone would want to talk to me about my migraines and since these were students and worked for my company I didn't feel comfortable revealing all. Of course some would want to say I have them too sometimes and a lot would want to say "have you tried..." This was off topic and something I am very sensitive too since I have tried it - whatever it is - I haven't had anyone come up with an idea I haven't tried so it gets tiresome and aggravating and I can't express that in this situation. So, as politely as I could I would weave my way through these conversations using distraction mostly to change the subject.
Okay so if it's happening teaching of course it is happening everywhere - client meetings! And needing sunglasses at client meetings. I tried the same thing as I did with classes - just say it quick and move on. Here I am, a tax manager with high technical expertise working with clients on international tax/business transactions and other high technical matters. I was mostly a consultants for colleagues' clients as my area was so technical based and brought in when their clients had issues - some of which meant my involvement for months or multiple times during the year and/or annually for a certain area so even if not my clients, I got to know them well. Which worked out well when my disability due to migraines got so bad that I needed to reduce my personal client load and work from home, etc. Being a consultant for colleagues worked great.
It worked the same with clients as with teaching - clients were able to quickly move on and take me seriously and not think I was nervous from tremors or weird for sunglasses and we didn't focus or spend time on it and got down to business. A lot of clients would automatically turn off or down the lights in the conference room when I was coming so I could have my sunglasses off and handy and not a word needed. Now, clients that got to know me did often ask how I was doing, but I kept it short and we moved on. Staff of clients - rather than the CFO or similar positions - on a smaller scale but when worked with me over a period of time did also want to offer suggestions and the like or send me emails asking how I was doing. I was able to handle.
Then to my surprise I received a review from my Team Leader and our Head of Tax Department (I worked closely with my Team Leader as my supervisor and someone I worked with often and who honestly I think had some problems with me personally because I wasn't the person I used to be working 80 hour weeks and always on call since I had a few months earlier put in official (I had done unofficial but I thought was official requests) requests for special accommodations for my disabilities - only working 40 hours a week, working primarily from home, etc. Well, they sat me down and told me that it was inappropriate for me to tell clients that I had any disability. I asked well, isn't it better than them thinking I'm shaking because I'm nervous or that I'm wearing sunglasses because I'm "shady?" They didn't care, they said I shouldn't tell anyone. Oddly both of them had been present separately but on numerous occasions at client meetings where I did this and then we drove back to the office together and never once had they said then it was a problem - I just got praise. I still have no idea where this review came from or why. I can make assumptions or judgments but without knowing what goes on inside the head of someone else and without them telling you - you can't know. I asked why they never mentioned it when they heard me do it numerous times before and I just got change of subject that it wasn't professional and that clients had complained. I asked which clients but they wouldn't say - none of the clients ever acted that way toward me but perhaps someone felt uncomfortable and said something.
The same they said for my dealings with staff members - well I can't hide that I keep my lights off in my office and all the staff saw me go through the change and the doctor visits and all that - I only got questions and caring remarks. Whatever. But then also they said when having conference calls with clients or even working back and forth with clients on an issue and phone calls and emails that I shouldn't be telling them that I work from home. Well, I never thought that would be a problem. I simply told clients I worked primarily from home so they would know to call me on my cell if they wanted to get a hold of me. I didn't say why I worked primarily from home - although some may have deduced. I was being reprimanded for saying I was working from home? I was supposed to lie and say I was in the office? Still don't know.
Anyway, back to the issue and away from that drama my chronic pain and anxiety problems kick started my tremors much further. Into my hands wildly and uncontrollably and added jerking, into my arms, into my legs at times - generally driving or standing and nervous - and it is bad.
Now, I can't eat a sandwich because I shake all the food out of it and have to set it down and put everything back in and try again. But then eat with a fork and then my hand will shake so bad uncontrollably against the plate that my husband says I may shatter it. I have to carry drinks with two hands and have a lid and straw or not fill a cup so I don't splash it everywhere. Shaving is my legs is hazardous to say the least. Trimming fingernails and toenails is a joke. Seeing me put on makeup looks ridiculous as I lean my arms against things to steady them to do things. Jewelry - bracelets I figured out although it takes some time I can hold one arm against the wall and the other somewhat if I am in a corner and I can get it done. Earrings I try to keep simple and it takes a long time if there is a separate backing. Brushing my teeth - again funny looking as I try to steady things. Contact lenses - I may have to stop - I wear 30 day/night contacts which I tend to wear longer than a month but I have good eyes and no problems - yes hard to get in sometimes with shaking - takes time - BUT the last time I took them out it was too long and I jabbed myself in the eye with my hand jerking that it was ridiculous and I'm nervous about putting back in. I usually go a couple months contacts then a couple months glasses - if my tremors don't get under control, contacts are history so I don't damage my eyes. Oh, so many other activities I could tell you about but you get the picture.
So, then there is the public, as I said, it's bad now, really bad and I can't control it. I am on short term disability and was when it got this bad so no client issues but when I go to a store and I'm shaking so bad it isn't my imagination that many people look at me like a junkie. I already don't look great with losing my hair from my hypothyroidism, sunglasses inside and maybe a hat due to migraine pain and I look weary - pain does that to you. Then, I'm shaking and I see it in their eyes. I say I have a tremor like Katherine Hepburn and it's no big deal, but apparently there are a lot of people that don't remember her - young generation - and they take a step back/sideways glance and I can see they still think junkie. I try to explain further but with my constant pain the more I talk sometimes the less sense I make and it makes it worse. I hate that so much.
But I had a good experience the other day. My husband was at work and I had to go to get something copied and faxed and something expressed mailed. So, off I went - I thought maybe I can do the copy and fax machine myself but my hands and arms said NO. So, I mustered my courage and went to the clerk and said "I have a disability and I know you have self serve but I can't use them and here's what I need." I explained no further what my disability/disabilities were or anything else. And the clerk saw me shaking uncontrollably as I tried to hand her the papers and she saw me need to sit down and cover my head but she didn't ask and she helped me! Then, the post office - I had courage now, although I also had severe pain now since I had been out doing things for over an hour - too long. But, I knew that the express mail label needed to be filled out there and the papers put in the envelope. I waited in line and went when called and said "I have a disability and I need help - can you put this in the envelope and then fill out the express mail card for me please? I know I should generally but I am not able." I said nothing else and she also helped me without hesitation or further questioning. And neither asked me to tell them more or anything. It felt great although I did have to come home and take medication and rest for hours to be able to move again - first thing Meditation as soon as I was able to concentrate again. Then yoga stretching and more rest.
I hate that two small errands takes everything out of me and more but the great news is I succeeded and I got help and maybe other customers looked at me strangely but I don't know, I didn't pay attention to that because the clerk was helping me and didn't do so. It was such a success and such a lesson for me.
My neurologist says that it is the anxiety more than the constant pain that kick started my Essential Tremor to accelerate. I think pain too - because I have anxiety about pain and fear of pain. Anyway, I did some research and it showed that anxiety can be a cause of an Essential Tremor accelerating to next level. Bad news is it also said that once accelerated it is hard to stop and very unlikely to reverse. Bad for me that one of the next levels could be head and neck tremors which my migraine would not handle well as head movement of any kind causes a lot of pain. I have to be careful and always slowly move my head. If I turn my head at a noise - sharp increase in migraine pain. So I do not want an uncontrollable tremor to end up there.
I think that's why my neurologist the last two visits has been intent on focusing on the tremor with the migraine. Now, there are medications I've tried before for Essential Tremor - propanolol (sp) and others but they all lower your blood pressure. Well, here's where my NCS comes in - I have low low blood pressure normally and lowering it causes NCS episodes - fainting, etc. So, those are bad.
My neurologist is working on medications that both show promise with migraine pain and with tremors. They don't want it worse. The first one didn't work for more than one reason and the second I am now on takes like a month to ramp up on so I'm still not yet on the full dose. But, I have noticed that for a little while after I take it the tremor isn't as bad but then comes back. I take three times a day but not at first and as I said not fully ramped up on full dosage. I still have all the problems I had before but I do see a time after I take the medication that it seems less and that it gets worse when I get more active or more nervous/anxious about something. So, I am hopeful. I don't expect it to reverse my tremors from the level it is at now, just hopefully keep it from advancing any further and my neurologist plan as well.
So, there's some information, some personal stories, some bad news and some good news.
For those with Essential Tremor or with a tremor that you haven't had diagnosed, as I said there is a link attached. But you should see a doctor. Some tremors are due to medications or may be another type of Tremor diagnostically.
Even if you have a tremor due to medication - I hope this entry gives you some feeling that you are not alone.
As always I hope you are all well and find something in here that you can relate to and that you know you are not alone. Chronic illnesses and disabilities are difficult to live with but we can do it and we can find hope and friends and support.
Take care of yourselves,
Elizabeth
Friday, September 24, 2010
Multiple Chronic Illnesses
As you may have seen I have changed the name of my blog and the info about myself. I had originally started this blog to talk about my chronic intractable migraines. But, I noticed that through my blogs my other chronic conditions interfere/interact/co-exist and shouldn't be denied.
Rather than simply referring to them all the time I need to give them the credit they deserve.
I was writing a post - that I have not published yet - and in doing so started some research on another of my chronic illnesses. I have been in so much pain for so long due to the non-stop migraine that I saw everything - even those illnesses that I had been diagnosed with previously - through the haze of the chronic migraine. I then took the time to start research on each of my chronic illnesses. I didn't come up with anything that doctor's hadn't told me but I also was lately the last few years also only hearing them through the fog of the chronic migraine. Somehow I had convinced myself if I fixed the one the others wouldn't be a problem.
In doing the research freeing my mind I found I cried and found that I came out of the haze and the fog and saw my illnesses for what they are. A part of me, and even if a magical cure which doesn't exist for my migraines came about, I would still have to live with these illnesses and their disabilities and I needed to recognize that.
Although it is sad it is also empowering. I have become stronger for it.
I live with Hypothyroidism - those of you living with it understand how hard it is and I did keep it separate as something I had to deal with. Every time you think you have it under control, it goes out of whack again. Yes, that is partially due to the interaction with my being in chronic pain. But, I have to live with the hair loss, the bouncing of symptoms when my levels go up or down with the thyroid hormone substitute and with how all interacts with my sleep cycle with pain, with other medications, etc.
I live with Anxiety - I have all my life. It causes the pain to get worse, it causes other conditions, like my Essential Tremor, to get worse. It interrupts and interferes with my life.
I live with Chronic Intractable Migraines - I have had migraines all my life - you can read the blog - and they got more and more often but always lasted 3-5 days or longer. It got to where I had them 3-5 times a month and it was extremely interfering with my life. Well, I thought that was bad. In January 2008, I got a migraine and it didn't go away in 3 days, in 5 days, in 2 weeks, in fact it is still here - it is here when I sleep, when I awake, when I try to rest, always I live with it and good days are still very bad pain.
I live with NCS - a type of Dysautonomia - it is also called vasovagal syncope. Technical term is Neurocardiogenic Syncope. It causes fainting episodes during which I have "seizure like" movements. But in research I found it affects me even when I am not having an episode. See my post from August 2009 on my top 5 most embarrassing fainting episodes as I tried to bring some humor. People that have seen it - like my husband while we were still dating - see it as extremely scary.
I live with Narcolepsy w/o cataplexy - it is so hard to describe because people automatically think of the amusing Hollywood interpretation - but it isn't like that and it is an invisible illness and people think you are find and can't understand what's wrong with you. Thankfully I had the sleep study that confirmed my symptoms and gave me a diagnosis.
I have Essential Tremor - some people call it familial tremor since it is hereditary. You may be able to go through most of your life with minor hand tremors that don't interfere with your life. For me, the chronic pain and the anxiety have kicked it into high gear. Although it was getting bad before that - I recognize that now. I thought that because my mother has tremors but they still aren't that bad that it would be a long long time before it became a problem for me. My Essential Tremor is now of great concern to my doctor's as it has kicked into high gear. It is embarrassing as people (strangers) look at me as if I am a junkie or something; sometimes my legs shake too much to drive. Writing is almost impossible now. But, the joke is trying to take out contacts or trim fingernails or eat a sandwich! I can talk more about that later.
I live with Tinnitus - a constant ringing in the ears. It started as a precursor to migraine attacks - like a warning - but when my constant migraine came so did the Tinnitus start and never end. This may seem small but for those who live with it you feel like you are going crazy - let alone it being hard to hear others, not being able to stand the silence because the ringing is all there is, and other things.
I have low blood pressure - which apparently is common with a lot of people, but not all, with chronic migraines. Generally, I run around 101/72 - not bad - but is a problem because medicines for my Essential Tremor and other illnesses lower my blood pressure so I can't take them. And pain and anxiety lower it further - I was at the doctor on Tuesday and it was 82/60 - well what can I do about that. Be happy that I don't have high blood pressure, YES, but not be able to take certain medications and feel faint a lot - not good.
Lately - over the last 8 months about - I have started dropping weight significantly. I have rarely been overweight - pregnancy (I gained 80 pounds with my first and 60 with my second); and after having been put on high doses of steroids in the summer of 2008 I gained a lot of weight. But, now I keep losing. I was happy when I was back to where I was before the steroids, but it kept going and keeps going. So, we have to be careful with medications that may cause me to lose weight or be more nauseous than the migraines may already make me.
I do not think I have multiple chemical sensitivity but with my chronic migraines I am extremely sensitive - I cannot know when a smell will hit me unexpectedly in a store or wherever and my pain spikes so quick I go into a faint.
I plan to write blogs on each of these but the real truth is that every blog about any of them is affected by one or more of the others.
More later - much love and take care,
Elizabeth
Rather than simply referring to them all the time I need to give them the credit they deserve.
I was writing a post - that I have not published yet - and in doing so started some research on another of my chronic illnesses. I have been in so much pain for so long due to the non-stop migraine that I saw everything - even those illnesses that I had been diagnosed with previously - through the haze of the chronic migraine. I then took the time to start research on each of my chronic illnesses. I didn't come up with anything that doctor's hadn't told me but I also was lately the last few years also only hearing them through the fog of the chronic migraine. Somehow I had convinced myself if I fixed the one the others wouldn't be a problem.
In doing the research freeing my mind I found I cried and found that I came out of the haze and the fog and saw my illnesses for what they are. A part of me, and even if a magical cure which doesn't exist for my migraines came about, I would still have to live with these illnesses and their disabilities and I needed to recognize that.
Although it is sad it is also empowering. I have become stronger for it.
I live with Hypothyroidism - those of you living with it understand how hard it is and I did keep it separate as something I had to deal with. Every time you think you have it under control, it goes out of whack again. Yes, that is partially due to the interaction with my being in chronic pain. But, I have to live with the hair loss, the bouncing of symptoms when my levels go up or down with the thyroid hormone substitute and with how all interacts with my sleep cycle with pain, with other medications, etc.
I live with Anxiety - I have all my life. It causes the pain to get worse, it causes other conditions, like my Essential Tremor, to get worse. It interrupts and interferes with my life.
I live with Chronic Intractable Migraines - I have had migraines all my life - you can read the blog - and they got more and more often but always lasted 3-5 days or longer. It got to where I had them 3-5 times a month and it was extremely interfering with my life. Well, I thought that was bad. In January 2008, I got a migraine and it didn't go away in 3 days, in 5 days, in 2 weeks, in fact it is still here - it is here when I sleep, when I awake, when I try to rest, always I live with it and good days are still very bad pain.
I live with NCS - a type of Dysautonomia - it is also called vasovagal syncope. Technical term is Neurocardiogenic Syncope. It causes fainting episodes during which I have "seizure like" movements. But in research I found it affects me even when I am not having an episode. See my post from August 2009 on my top 5 most embarrassing fainting episodes as I tried to bring some humor. People that have seen it - like my husband while we were still dating - see it as extremely scary.
I live with Narcolepsy w/o cataplexy - it is so hard to describe because people automatically think of the amusing Hollywood interpretation - but it isn't like that and it is an invisible illness and people think you are find and can't understand what's wrong with you. Thankfully I had the sleep study that confirmed my symptoms and gave me a diagnosis.
I have Essential Tremor - some people call it familial tremor since it is hereditary. You may be able to go through most of your life with minor hand tremors that don't interfere with your life. For me, the chronic pain and the anxiety have kicked it into high gear. Although it was getting bad before that - I recognize that now. I thought that because my mother has tremors but they still aren't that bad that it would be a long long time before it became a problem for me. My Essential Tremor is now of great concern to my doctor's as it has kicked into high gear. It is embarrassing as people (strangers) look at me as if I am a junkie or something; sometimes my legs shake too much to drive. Writing is almost impossible now. But, the joke is trying to take out contacts or trim fingernails or eat a sandwich! I can talk more about that later.
I live with Tinnitus - a constant ringing in the ears. It started as a precursor to migraine attacks - like a warning - but when my constant migraine came so did the Tinnitus start and never end. This may seem small but for those who live with it you feel like you are going crazy - let alone it being hard to hear others, not being able to stand the silence because the ringing is all there is, and other things.
I have low blood pressure - which apparently is common with a lot of people, but not all, with chronic migraines. Generally, I run around 101/72 - not bad - but is a problem because medicines for my Essential Tremor and other illnesses lower my blood pressure so I can't take them. And pain and anxiety lower it further - I was at the doctor on Tuesday and it was 82/60 - well what can I do about that. Be happy that I don't have high blood pressure, YES, but not be able to take certain medications and feel faint a lot - not good.
Lately - over the last 8 months about - I have started dropping weight significantly. I have rarely been overweight - pregnancy (I gained 80 pounds with my first and 60 with my second); and after having been put on high doses of steroids in the summer of 2008 I gained a lot of weight. But, now I keep losing. I was happy when I was back to where I was before the steroids, but it kept going and keeps going. So, we have to be careful with medications that may cause me to lose weight or be more nauseous than the migraines may already make me.
I do not think I have multiple chemical sensitivity but with my chronic migraines I am extremely sensitive - I cannot know when a smell will hit me unexpectedly in a store or wherever and my pain spikes so quick I go into a faint.
I plan to write blogs on each of these but the real truth is that every blog about any of them is affected by one or more of the others.
More later - much love and take care,
Elizabeth
Saturday, August 28, 2010
Migraine, Migraine, Migraine - and Familial Tremors
Okay - so I have suffered from migraines almost my entire life. So what I think at this point. I have suffered from non-stop constant migraine with no let up since January 2008. Oh, I take that back. I did have a let up after my visit to the Michigan Head Pain & Neurological Institute where I was hospitalized for three weeks after having been hospitalized here and gone through so many other treatments here. Thank goodness my neurologist knows and works with them at MHNI.
But, the pain came back when I went back to work and dealt with that and was back in my normal life. As normal as could be. Now I live with constant pain at a high level - usually average daily 7-71/2 on a 10 scale with spikes up every day to 9 or above at times and when I take my medications the pain can get down to as low as a 5 or 6. But that's it. That's what I live with. I have been once again placed on short term disability and have been since May and am not seeing improvement.
I think I have gotten used to some of my medications and my doctor is making some changes to see if that helps. I'm not your normal even chronic migraine sufferer - like who is? - I can't take any normal migraine medications - the triptans - because I have vaso-spasms and they worry about stroke. They also worry that the longer I am in constant pain the chance of stoke goes up.
I also am hypothyroid severely and so I have to manage my thyroid with my migraine medications. I also have narcolepsy without cataplexy - meaning I don't nod off unexpectedly like they show in funny movies - which it isn't - but I have trouble - hah trouble, I don't reach deep sleep very often. I go straight to REM and stay there and awake and have what I used to call night terrors but actually is called "sleep paralysis with hallucinations" and is common with narcolepsy and can happen occasionally to anyone but was happening to me a lot. Basically your body puts you into a paralytic state when you are in REM sleep so you do not act out your dreams - good - bad when you become conscious during REM and then also have hallucinations and feel like you can't move or wake up - because you can't - and it is extremely scary. Too much on that one - the medication they gave me has helped tremendously with that. I also have NCS which is a type of vasovagal syncope. I pass out at unusual and bad times - see my post of most embarrassing fainting episodes.
If that isn't enough, my blood pressure runs very low normally. Apparently it is more common with migraine patients than I had thought. Anyhow, my other condition is a familial tremor. Not a big deal it was when I had a slight tremor in my hands that got worse now and again and was told that would get worse and move into my arms, legs and neck and head as I got older. I thought, Kathryn Hepburn rocks so no big deal and my mom has tremors and it's still just in her hands.
Well, the constant migraine pain kicked it into high gear. I shake so bad now that the doctors and my husband and grown sons don't want me driving because it shows up in my legs while I'm driving. I still drive to the doctor but everyone's at work so I have to. The tremor gets to where I can't control it at all and I shake all the food off my fork or out of my sandwich before I can get it to my mouth. Then, so bad I can't get my contacts out because the tremor decides to also become a jerk and I keep poking myself in the eye. I have to have people fill out paperwork for me because I can't write. And I have a hard time reading when I shake the book or paper and if I don't then the migraine causes a twitch in my eye - minor - but enough to cause major pain. The computer is better because I can make the words bigger. I miss reading.
I miss not feeling like a freak and I miss not being a part of the world - contributing like I used to. Now, I have to pat myself on the back for very small achievements. And that's okay. I am here and I will be okay. I will survive. I hate feeling like I wonder what others are thinking when they see me and I can't give my medical history to everyone that sees me because then they think I'm more of a freak.
And then I hate that the people close to me that care about me and understand go through periods where they don't understand and are tired of me. Not of me but they miss the real me - the old me - and want me better. I do too - but I can't force that to happen. I tried. It put me back on disability and with the knowledge that when it's medical - no matter how many other obstacles you've overcome in your life - you have to let go and meditate and relax and not push and force your way out of this one. It tends to make migraines worse.
That's all for now - been awhile since I wrote - I'm going to try to do so a lot more often. I'm looking forward to invisible illness awareness week and the free conference - see link - week of September 13th. Last year's I got a lot out of.
Love to all and take care of yourselves.
But, the pain came back when I went back to work and dealt with that and was back in my normal life. As normal as could be. Now I live with constant pain at a high level - usually average daily 7-71/2 on a 10 scale with spikes up every day to 9 or above at times and when I take my medications the pain can get down to as low as a 5 or 6. But that's it. That's what I live with. I have been once again placed on short term disability and have been since May and am not seeing improvement.
I think I have gotten used to some of my medications and my doctor is making some changes to see if that helps. I'm not your normal even chronic migraine sufferer - like who is? - I can't take any normal migraine medications - the triptans - because I have vaso-spasms and they worry about stroke. They also worry that the longer I am in constant pain the chance of stoke goes up.
I also am hypothyroid severely and so I have to manage my thyroid with my migraine medications. I also have narcolepsy without cataplexy - meaning I don't nod off unexpectedly like they show in funny movies - which it isn't - but I have trouble - hah trouble, I don't reach deep sleep very often. I go straight to REM and stay there and awake and have what I used to call night terrors but actually is called "sleep paralysis with hallucinations" and is common with narcolepsy and can happen occasionally to anyone but was happening to me a lot. Basically your body puts you into a paralytic state when you are in REM sleep so you do not act out your dreams - good - bad when you become conscious during REM and then also have hallucinations and feel like you can't move or wake up - because you can't - and it is extremely scary. Too much on that one - the medication they gave me has helped tremendously with that. I also have NCS which is a type of vasovagal syncope. I pass out at unusual and bad times - see my post of most embarrassing fainting episodes.
If that isn't enough, my blood pressure runs very low normally. Apparently it is more common with migraine patients than I had thought. Anyhow, my other condition is a familial tremor. Not a big deal it was when I had a slight tremor in my hands that got worse now and again and was told that would get worse and move into my arms, legs and neck and head as I got older. I thought, Kathryn Hepburn rocks so no big deal and my mom has tremors and it's still just in her hands.
Well, the constant migraine pain kicked it into high gear. I shake so bad now that the doctors and my husband and grown sons don't want me driving because it shows up in my legs while I'm driving. I still drive to the doctor but everyone's at work so I have to. The tremor gets to where I can't control it at all and I shake all the food off my fork or out of my sandwich before I can get it to my mouth. Then, so bad I can't get my contacts out because the tremor decides to also become a jerk and I keep poking myself in the eye. I have to have people fill out paperwork for me because I can't write. And I have a hard time reading when I shake the book or paper and if I don't then the migraine causes a twitch in my eye - minor - but enough to cause major pain. The computer is better because I can make the words bigger. I miss reading.
I miss not feeling like a freak and I miss not being a part of the world - contributing like I used to. Now, I have to pat myself on the back for very small achievements. And that's okay. I am here and I will be okay. I will survive. I hate feeling like I wonder what others are thinking when they see me and I can't give my medical history to everyone that sees me because then they think I'm more of a freak.
And then I hate that the people close to me that care about me and understand go through periods where they don't understand and are tired of me. Not of me but they miss the real me - the old me - and want me better. I do too - but I can't force that to happen. I tried. It put me back on disability and with the knowledge that when it's medical - no matter how many other obstacles you've overcome in your life - you have to let go and meditate and relax and not push and force your way out of this one. It tends to make migraines worse.
That's all for now - been awhile since I wrote - I'm going to try to do so a lot more often. I'm looking forward to invisible illness awareness week and the free conference - see link - week of September 13th. Last year's I got a lot out of.
Love to all and take care of yourselves.
Tuesday, June 8, 2010
Why am I still awake?
So, it's 5:10 am and I have been awake all day and all night. Not for work since I've been put on short term disability to rest and rest and rest.
I can blame the latest weather patterns and combined with the start of my cycle the storm of the migraine - constant already - has swollen to massive proportions.
Thus making it difficult to fall asleep.
I could use my shot which always works to put me to sleep but I only get two a week (Toradol) and I want to save it. Why? Because I have a therapy appointment at 9 am this morning and at this point if I fall asleep with meds I won't wake up. So, I will hold off until after the appointment and then get some rest.
Of course, that means I likely will be up tomorrow night - or tonight I guess.
I have caught up on some talking with other chronic babes at the forum - http://chronicbabeclub.ning.com - a great forum to share with other gals suffering chronic illnesses - most of all and importantly to lift each others' spirits and share advice - not a site for griping. Which is good - takes my mind off wanting to gripe about my problems when I am reading and trying to help others with how they are doing.
This was about a month ago, but my son is in JROTC - Raider Team and they took first place in all except one competition at the meet and first place overall. His team is ranked 1st in their 4 state region and when they went to nationals they took 11th place. Very proud mama and so glad I got to go to the meet and watch them.
They start the night before driving to the meet - at an army or other military base, then sleep in their bags in a room like a gym - then up at 5 am to get ready and start with PT tests - push ups, pull ups, sit ups, all that jazz. Then breakfast, then they start the different events - I get there around 10 am because usually first is the 10K and there's not much to see until then and I'm tired to do all day. So, there's a 10K, a surprise event - generally team building/carrying someone on cot and overcoming an obstacle with time limits, the navigation event, the test of memory for combat medical, the Raider challenge course (oh my - at this last one at the end after 2 miles of carrying rocks in their back packs and 20 pounds of sand on a cot up and over hills and many obstacles along the way and stopping for tests of skill, etc, at the end they put the cot in the back of an army truck and then pull it 50 yards with a rope at the front then take the sand on the cot out then down and up a huge hill!; and there's the one rope bridge which is so fun to watch and another that takes so much skill - here's a video of my son's team at that - http://www.youtube.com/watch?v=67KTTJ1QT_s
They eat army meals from in the field in between competitions when they have time. My son at the beginning of the day - after the 10K - and 2 other kids on his team gulp some water and then vomit it up and then drink more - while first sergeant says - you didn't work hard enough if you don't puke after that 10K - by the way their team beat 2nd place team in the 10K by 3 minutes and most others by 10 - 20 minutes. It was the first time they had won the 10K in a while.
At the end there is an awards ceremony where all the teams are their army best at attention. It is a grueling day - and some of the kids - mine too - have to get up the next day after the bus ride home and work on Sunday at their job.
I am talking about a grueling day of pushing themselves to the limit. Amazingly, soldiers on leave from Iraq and Afghanistan take their personal vacation days to be there and judge the events - love our soldiers and love to our soldiers and so much thanks! These are high school kids going through this. You know, my same son who when it isn't a meet weekend manage to sleep 15 hours straight and seems like the lazy teen we all know or remember. :)
So, why bring it up in relation to my not being able to sleep due not to insomnia, but due to horrible constant migraine pain - a disability?
Because it is a marathon and then some. Because we do go through obstacle after obstacle and then find we have to pick ourselves up and carry the load of our friends/family/stress/work/etc. And then after that more obstacles and we are pushing and fighting to make our way through.
I am so proud of my son and of all the JROTC Raider teams - they are amazing kids (of course I mean young adults) -
But I am also proud of myself and all I go through and even when I fall and end up on short term disability again (as I have) or feel like I can't go on but know I must keep pushing on because the team - me, my family, my friends - all my loved ones - need me to, I keep going. I get up and brush myself off and do my yoga and do my meditation and take my medication and root, root, root for my fellow sufferers.
Because I am proud of all of you out there with me fighting the fight - the invisible illness, the pain and the fight with so few spoons left in the pocket for the day, if any at all.
I am not by any means comparing us to our troops overseas, I mean only to compare to the JROTC Raider Challenge Meets these kids do together and all of the other team sports - be it basketball, football, baseball, wrestling or other team sport - or single person sport where these kids pull all their strength to reach a goal.
And that's what we do everyday.
So, without any sleep and it now 6:03am, I will do some yoga, stretch, meditate, go to my therapy appointment and then I will rest. It takes rest too. To take care of yourself, to "run the marathon," to fight the fight and keep on keeping on.
So, my fellow pain sufferers - migraineurs or other invisible illnesses or not so invisible - here's to you - we are going to make it and we should applaud ourselves for what seem like small victories because they are victories none the less and keep us going and keep us a beautiful part of this world.
And here's to my son of whom I am so proud! And also to my other son who is older and out living on his own, learning to work, budget, pay bills, and be a useful and productive member of society as he pursues his dreams.
Love all!
Elizabeth
I can blame the latest weather patterns and combined with the start of my cycle the storm of the migraine - constant already - has swollen to massive proportions.
Thus making it difficult to fall asleep.
I could use my shot which always works to put me to sleep but I only get two a week (Toradol) and I want to save it. Why? Because I have a therapy appointment at 9 am this morning and at this point if I fall asleep with meds I won't wake up. So, I will hold off until after the appointment and then get some rest.
Of course, that means I likely will be up tomorrow night - or tonight I guess.
I have caught up on some talking with other chronic babes at the forum - http://chronicbabeclub.ning.com - a great forum to share with other gals suffering chronic illnesses - most of all and importantly to lift each others' spirits and share advice - not a site for griping. Which is good - takes my mind off wanting to gripe about my problems when I am reading and trying to help others with how they are doing.
This was about a month ago, but my son is in JROTC - Raider Team and they took first place in all except one competition at the meet and first place overall. His team is ranked 1st in their 4 state region and when they went to nationals they took 11th place. Very proud mama and so glad I got to go to the meet and watch them.
They start the night before driving to the meet - at an army or other military base, then sleep in their bags in a room like a gym - then up at 5 am to get ready and start with PT tests - push ups, pull ups, sit ups, all that jazz. Then breakfast, then they start the different events - I get there around 10 am because usually first is the 10K and there's not much to see until then and I'm tired to do all day. So, there's a 10K, a surprise event - generally team building/carrying someone on cot and overcoming an obstacle with time limits, the navigation event, the test of memory for combat medical, the Raider challenge course (oh my - at this last one at the end after 2 miles of carrying rocks in their back packs and 20 pounds of sand on a cot up and over hills and many obstacles along the way and stopping for tests of skill, etc, at the end they put the cot in the back of an army truck and then pull it 50 yards with a rope at the front then take the sand on the cot out then down and up a huge hill!; and there's the one rope bridge which is so fun to watch and another that takes so much skill - here's a video of my son's team at that - http://www.youtube.com/watch?v=67KTTJ1QT_s
They eat army meals from in the field in between competitions when they have time. My son at the beginning of the day - after the 10K - and 2 other kids on his team gulp some water and then vomit it up and then drink more - while first sergeant says - you didn't work hard enough if you don't puke after that 10K - by the way their team beat 2nd place team in the 10K by 3 minutes and most others by 10 - 20 minutes. It was the first time they had won the 10K in a while.
At the end there is an awards ceremony where all the teams are their army best at attention. It is a grueling day - and some of the kids - mine too - have to get up the next day after the bus ride home and work on Sunday at their job.
I am talking about a grueling day of pushing themselves to the limit. Amazingly, soldiers on leave from Iraq and Afghanistan take their personal vacation days to be there and judge the events - love our soldiers and love to our soldiers and so much thanks! These are high school kids going through this. You know, my same son who when it isn't a meet weekend manage to sleep 15 hours straight and seems like the lazy teen we all know or remember. :)
So, why bring it up in relation to my not being able to sleep due not to insomnia, but due to horrible constant migraine pain - a disability?
Because it is a marathon and then some. Because we do go through obstacle after obstacle and then find we have to pick ourselves up and carry the load of our friends/family/stress/work/etc. And then after that more obstacles and we are pushing and fighting to make our way through.
I am so proud of my son and of all the JROTC Raider teams - they are amazing kids (of course I mean young adults) -
But I am also proud of myself and all I go through and even when I fall and end up on short term disability again (as I have) or feel like I can't go on but know I must keep pushing on because the team - me, my family, my friends - all my loved ones - need me to, I keep going. I get up and brush myself off and do my yoga and do my meditation and take my medication and root, root, root for my fellow sufferers.
Because I am proud of all of you out there with me fighting the fight - the invisible illness, the pain and the fight with so few spoons left in the pocket for the day, if any at all.
I am not by any means comparing us to our troops overseas, I mean only to compare to the JROTC Raider Challenge Meets these kids do together and all of the other team sports - be it basketball, football, baseball, wrestling or other team sport - or single person sport where these kids pull all their strength to reach a goal.
And that's what we do everyday.
So, without any sleep and it now 6:03am, I will do some yoga, stretch, meditate, go to my therapy appointment and then I will rest. It takes rest too. To take care of yourself, to "run the marathon," to fight the fight and keep on keeping on.
So, my fellow pain sufferers - migraineurs or other invisible illnesses or not so invisible - here's to you - we are going to make it and we should applaud ourselves for what seem like small victories because they are victories none the less and keep us going and keep us a beautiful part of this world.
And here's to my son of whom I am so proud! And also to my other son who is older and out living on his own, learning to work, budget, pay bills, and be a useful and productive member of society as he pursues his dreams.
Love all!
Elizabeth
Friday, May 14, 2010
Been Gone So Long - The Migraine Story Continues
Well, I apologize for being gone so long. I am a CPA and it was tax season. Per doctor's orders I was only to work 40-45 hours/week but then I got some reprimand that made me fairly sure that my job was at stake if I didn't "step it up" so I ended up working 75 hour weeks and my migraine is very angry about that.
This week my doctor put me on short term disability to try to get the rest I need to try to get back under control. So far, the pain hasn't let up and I am not doing well.
I know logically and truly that things will work out and I will get better and find my way. However, I am pretty depressed and angry at myself for not being able to overcome this obstacle - this migraine.
I have had SO MANY obstacles in life so far, and I have overcome them all or hurdled them and become successful. I have had this migraine since January 2008! and I have worked SO hard to overcome, to live with it, to be able to manage it, to hurdle it. I've had migraines almost my whole life and was having them up to 5 times a month - 3-4 days in a row, and I hurdled that. In 2008 I realized that I was going to have to adjust my definition of success and back down for my health now that my migraines had become a disability.
Without having worked, I took a shower and couldn't even get to shaving my legs before it was too painful, I got out and laid down and then got up and then fainted - my NCS - and then laid there for 1/2 an hour, and then got up and it hit me again - took me over an hour to recover from a short shower. It was the same while working so I guess I'm not rested enough yet. This is a true disability and this is just one example of how my disability has disrupted my life. When it takes more than 5 spoons just to shower!
It has gotten worse and worse and now I am finding I can't overcome this and I can't hurdle this. The migraine disability is winning and I am SO mad at myself for this. I feel like a failure. I know I am not and my doctors have told me that they are so proud of me and how hard I have fought. But, that I need to rest and let go and stop fighting so hard. I know that things will work out but for a little while I need to be depressed.
I need to be able to mourn the loss of my dreams, even my watered down dreams. I will make new ones and I will survive and be successful in another way, a new definition. I will be okay. But, please give me time to mourn.
To everyone out there in my situation and those in similar situations or facing trials of your own. Be strong, know that "This Too Shall Pass" and keep dreaming. But, also give yourself time to mourn and to feel your feelings - just don't let it go too long so you can pick yourself back up.
I'll pick myself up and will be strong, after my mourning period.
Love and good luck to all - more later and not as long this time!
This week my doctor put me on short term disability to try to get the rest I need to try to get back under control. So far, the pain hasn't let up and I am not doing well.
I know logically and truly that things will work out and I will get better and find my way. However, I am pretty depressed and angry at myself for not being able to overcome this obstacle - this migraine.
I have had SO MANY obstacles in life so far, and I have overcome them all or hurdled them and become successful. I have had this migraine since January 2008! and I have worked SO hard to overcome, to live with it, to be able to manage it, to hurdle it. I've had migraines almost my whole life and was having them up to 5 times a month - 3-4 days in a row, and I hurdled that. In 2008 I realized that I was going to have to adjust my definition of success and back down for my health now that my migraines had become a disability.
Without having worked, I took a shower and couldn't even get to shaving my legs before it was too painful, I got out and laid down and then got up and then fainted - my NCS - and then laid there for 1/2 an hour, and then got up and it hit me again - took me over an hour to recover from a short shower. It was the same while working so I guess I'm not rested enough yet. This is a true disability and this is just one example of how my disability has disrupted my life. When it takes more than 5 spoons just to shower!
It has gotten worse and worse and now I am finding I can't overcome this and I can't hurdle this. The migraine disability is winning and I am SO mad at myself for this. I feel like a failure. I know I am not and my doctors have told me that they are so proud of me and how hard I have fought. But, that I need to rest and let go and stop fighting so hard. I know that things will work out but for a little while I need to be depressed.
I need to be able to mourn the loss of my dreams, even my watered down dreams. I will make new ones and I will survive and be successful in another way, a new definition. I will be okay. But, please give me time to mourn.
To everyone out there in my situation and those in similar situations or facing trials of your own. Be strong, know that "This Too Shall Pass" and keep dreaming. But, also give yourself time to mourn and to feel your feelings - just don't let it go too long so you can pick yourself back up.
I'll pick myself up and will be strong, after my mourning period.
Love and good luck to all - more later and not as long this time!
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