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 

28 comments:

  1. Chronic pain is a disease that occurs in cancer, fibromyalgia, etc. As no single cure for their symptoms can be treated with medicines such as pain as that found in findrxonline: Vicodin.

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  2. I don't take any narcotic medications for pain - they may work for cancer or other pain - but they do not work for migraines at all - at least in my case and as studies show. They may make you not care as much and hazy - I have been placed on some in the past but I'd like to keep my mind.

    Yes, that means pain - and I do have a rescue shot - Toradol - that I take twice a week to get some short relief.

    But, everyone is different and everyone's pain is different. It is finding a way with a team (yourself, your doctors, your therapist, your network of loved ones and your support group) that you find a way.

    Best of luck.

    Elizabeth

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  3. I have a problem called myoclonus where your muscles will have a myoclonic jerk just when ever they please and it can knock you down or make you throw whatever is in your hand etc. depending on which muscle groups jerk.

    I was very worried about other people seeing this until the time I THREW a gallon pitcher of sticky homemade lemonade during a party. Then I decided God has to have a sense of humor to give somebody something so unpredictable.

    People in general like to help someone who is having difficulties! I found this out when I had to start using a cane. I doubt they are thinking you are a junky, most likely they are thinking you are in pain. And you are!

    So sorry you are having so many problems. Hoping for better days ahead with your new meds!

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  4. That's so funny! You are right to have a sense of humor attitude and I need to try harder to do that - I do laugh at myself when I'm trying to do things and it doesn't work but my husband doesn't think it's funny and doesn't think I should joke about it - he's just really worried.

    I know I can't know what others are thinking but it's difficult when you can detect body language.

    For the most part, I had a happy ending by having a good experience.

    Thanks for well wishes and back at you Winny.

    Much love

    Elizabeth

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  5. This was such an interesting read for me! I feel for you - being in constant migraine pain is ... it's horrible. There are no words! And I know what you mean about the sidelong glances, etc.

    But what was most interesting to me was learning about tremors - yours specifically, but also the pathology of tremors in general. I don't know why I have tremors, but I do. Generally just in my hands and arms. Most of the time it's just annoying or humorous. But I have dropped a sharp knife, etc. I'm worried about cutting myself as I cook. I will talk to my doctor about this more the next time I see her.

    I always assumed it was the result of some medication or combination of medications - which may well be the case. But if it's possible that it is something else...I need to know what's going on.

    Best of luck for this medicine trial - I hope it improves the tremors and helps you!

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  6. Great Emily! Thanks for the compliment and I'm glad it got you thinking. As you say, it may be only the result of medication but it may be something else. You can do some research online - the essential tremor website I had thought I put in the post but it is - www.essentialtremor.org

    My husband has tremors but he has never had diagnosed. My mom also. My husband sometimes jerks too.

    I hope you find what you are looking for and I hope that your doctor can help.

    Elizabeth

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  7. hello, i am a almost 32 year old woman who was diagnosed with uncontrolable tremmors of the hands and migranes at age 13 and have recently been upgraded to ET with migrains so i know where you are coming from. i also have fibromyalgia, rods, screws, bolts, and plates in my back, major knee, ankle and sholder surgeries i live in chronic pain at all times i have a great support group and yes i shake all the time i read your story and was touched my prayers are with you as you try your new meds i myself have recently started a new med for my ET with migrains. my mother is my best friend and my husband is the worlds best without those two i don't think i would make it day to day.
    God Bless you in your journy.

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  8. Amber,

    Thank you so much for sharing and helping me feel not alone. I am so sorry for you and my prayers will be with you as well.

    It's quite a rub when you don't want to feel alone but at the same time you don't want someone else in the same situation - makes you feel bad and good that you aren't alone. I hate that anyone else deals with these things but so many of us do as I have found out.

    I too have the most incredible husband in the world - don't know what I would do without him.

    By the way, although the meds haven't helped migraines yet - my Essential Tremor is less bad - not in my legs and such, but it is in still very bad - mostly in my left hand and arm but both sometimes. And I found out that the doctors have seen it in my head and neck and voice - which is a concern.

    http://www.essentialtremor.org/SiteResources/Data/Templates/t1.asp?docid=514&DocName=Home

    A great website that gives great information from a non-profit.

    Best of luck - and Amber you are in my prayers.

    Elizabeth

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  9. i am doing a little better the migrains not so much either but the tremmors are better in my legs and not so much in my hands and neck and head they are slowly getting better though so i am hopefull. i just saw my nueologist again the other day and he uped my meds again so i am hopeful and so far so good so just keep faith and trust in the Lord. only He knows

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  10. Amber I keep you in my prayers - seems as we are in the same boat. Saw my Neurologist today and was so bad with migraine and tremors my husband drove me - thankfully he had the day off work! - but even he was trying to grab my arm as we went to the weighing and then room because it was going like mad. He doesn't take me very often and doesn't realize that they are used to that - it was kind of sweet and kind of funny he was trying to help.

    As for my tremor, we aren't changing anything yet again as to meds - I'm on high dose of Primidone for it and at least it generally isn't all over any more - but is sometimes - seems to sit and stay in my left hand and arm and that's not changing but we have gotten better like you in my legs. They hear it in my voice box though. I don't know.

    As for migraines, no help so far - but I will do my second Botox treatment in March - they think with my level of constant chronic migraine, it may take 4-5 treatments to see if it will help or not.

    It did relieve tension in my traps - muscles between neck and shoulders. Hopefully next some more relief there and then into my neck and my cervicalgia - occipital lobes and then hopefully migraines, but if it only helps the other, worth it. They may increase dosage and number of injections next time - they did a lot last time so who knows?

    Best of luck and best of health you can have - my prayers are with you Amber.

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  11. as my prayers are with you as well. i seem to be doing a little better now that the holidays are over i am not under as much stress just in a lot of pain of course with my back and what not i have had a lot of surgeries especially on my left side, ie... sholder, knee and most recently ankle. i also have hardware in my low back so i have as of today found a pain managment dr. to accept me if i can just get my regular dr. to fax a referal to him. i got them to understand that i don't need the pain meds all the time just on a as needed basis so he seems like he is willing to help. the tremors are staying about the same but the migrains are doing a little bit better. of course if i get the least bit stressed out at all i have a full blown migrain like i did last night and dealing with an autistic nine year old son does not help. lol... but we are all learning to cope. he is throwing one of his hourly fits right now so i am deleting alot lol...

    my legs are not shaking as bad these days as you said they seem to do better with the higher doses of meds. i take topmax. i am up to 400 mg a day now. started at 25mg a day. less than two months ago. if i could just get my eye balls to stop shaking and my upper body to stop. lol... all i can do is laugh about it if i don't it really gets me down.

    my prayrs stay with you and your husband. may God give you both streangth.

    God bless our husbands and Families.

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  12. I want to thank you so much for this post. I've been seeing doctors for years displaying your symptoms which have progressively gotten worse. I've been subjected to test after test and no one has been able to give me any answers. Your experience is my own... thank you for giving me the answers no one else could. I have 2 styles of shades depending on lighting, live in the dark at home, limit my daylight activities, can't work more than 30 hours per week, go to school and raise 3 beautiful children. Today I spent in the ER because of loss of muscle function with a migraine... pupils dialated unevenly. Doc said it was an atypical migraine and to follow up with my neurologist. Part of me thought that maybe I was going crazy... its so good to know I'm not. :) Thank you again so much... you've brought me peace that no one else could. Bless you.

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  13. Hi, I have a son who is 14 and has had a constant painful migraine for the past three months, day and night, without cease. He gets tremors (and jerks and muscle spasms) with the pain, as well as numbness in his legs and sometimes hands. His eyes and face are red and flushed. The medication (codeine initally, now Naproxn) he has been given seem to be making the pain and symptoms worse. He has missed so much school, and I am desperately trying to help him return, but the doctors here don't really seem to know what to do to help him. There was a period where he did not take any medication and the headache lessened in severity down to about 3/4 out of 10, which made life more bearable for him and he returned to school, but within days the severity returned again and he has been off since then. I don't know what I can do to help him. Any advice greatly appreciated.

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  14. He needs a good pediatric neurologist. There aren't a lot of them around but the good ones are very good. Chronic migraines, which can manifest like this, can rebound with codeine. He needs a complete diagnosis and preventative as well as breakthrough meds specific to migraine. Did he experience some kind of head trauma before his migraines started? A regular doctor, or emergency room doctor really doesn't have the training to deal with a headache problem of this severity. Get referrals up the line to a specialist in migraines who is a pediatric neurologist. It can take a while to find the right one. Don't take no for an answer on the issue of referral to a regional specialist. He or she should be able to help.

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  15. Elizabeth,
    I am 70 years old and have been trembling since I was a teenager.

    A few months ago I literally had to drop out of society because it was "totally off of the charts".

    I recently had a laser holmium lithotripsy too remove a urinary bladder stone the size of a lemon. A rather painless procedure, but my acid urination pain was killing me. So,I scoured the internet and found that sodium bicarbonate is actually administered intravenously to control blood serum pH.

    Having taken sodium bicarb occasionally for acid stomach (heartburn) since I was a child, I decided to drink two glasses of water each with a teaspoonful of sodium bicarbonate mixed in. Within two hours my acid urine problem was gone, so I started taking the bicarb twice a day, AM upon arising and PM before retiring. Low and behold my tremors have subsided by 90%.

    The sodium has caused a rise in blood pressure, but by searching the web I have learned about Magnesium Bicarbonate. 90% of the population is deficient in Magnesium and it is essential as an electrolyte for nerve communication.

    I have long felt that my nervous system had been "short circuiting". I plan to make some Magnesium Bicarbonate this weekend and I will let you know how it goes.

    You can google Magnesium Bicarbonate for more info.

    Best wishes

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  16. For an artist it must be frustrating on different levels to be unable to paint with a steady hand. You should try supplements for ET. They may help you.

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  17. are you sure you arent experiencing migraine medication induced parkinsonism?

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  18. I am so excited for you. It sounds like the two of us have found gems. Keep us posted on how you do.

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