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!

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,