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.


  1. Not sure of your medication, but I was put on dilantin once for headaches and I had tremors and dystonia (writhing movements) from the medication to the point I coudn't hardly feed myself. Neuros are very good about giving neuroleptics but very bad at discerning adverse reactions. Wishing/hoping that your tremors are worsened by medication and not by your headache disorder.

  2. Elizabeth,

    I'm sorry you're dealing with so much. Thinking of you.


  3. Thanks Winny - I wish the tremors were medication related but they are not - I was long ago before my constant migraines and without a migraine diagnosed with familial tremors that run in my family - think of Katherine Hepburn in her later years. They said it would gradually get worse and it was getting worse before my constant migraine and all the meds. They think that yes pain contributes to more tremors but more so my anxiety contributes to them acting out more and getting worse faster. I remember 12 years ago thinking they were bad and now I think WOW I thought it was bad then? The worst part is the way strangers look at me like I'm a junky or something and you can't explain - well some people I say I have familial tremors like Katherine Hepburn and they go oh and look at me normal but fewer and fewer people remember her and most just go whatever in their roll of eyes and I know I shouldn't care what strangers think but I do.

    Jeanne! I miss you! I have been going through too hard of a time. Hope to be coming out of it soon and back so we can talk and catch up - I think of you often as well and of our talks.


  4. I just ran across your blog. I hope that things start getting better for you. It sounds like you're a fighter, so keep up the good work.


  5. Thank you Jamie - I am a fighter and I am sorry for the depressing blog but it just all came pouring out - I held back I thought but all the same.

    One of the things I am going to work on my fight back is to write more blogs more often so please come back and visit and I hope to be more inspiring than depressing!


  6. This comment has been removed by the author.

  7. You need to say "You Old Poop" to people and THEN they will associate you with Katherine Hepburn!! Or maybe they might REALLY think you are a junky? Wishing there was someway to fix it.

    I have gifted you with the One Lovely Blog award! Hope you are feeling better soon.

  8. Hi Elizabeth...I'm Jessica. I was just reading through your blog and saw that you had mentioned going to MHNI. I recently received a referral to go there. I am still doing research and trying to decide whether or not to go. Any advice would be SO helpful! Do you live in Michigan? I will be traveling from Florida if I do go. So I don't know if I'd stay in a hotel or the hospital???

  9. Winny - thanks for the advice - you are AWESOME!!!

    I am so far behind - I was writing a new blog, got sidetracked doing some research and now have a whole new idea AND I can only be on the computer for short bursts at a time due to the pain so I promise more is coming!

    Jessica - HI!!! Welcome - I loved MHNI and they were so helpful. I live in Kansas City and my Mom went with me. It is a difficult trip to make and I do have some GREAT advice for you on this - on where to stay, etc, and you have to make reservations early if you decide to go, because if they decide to admit you it can take a week or more to get into the hospital because of so many patients - but there is a great place to stay that has others waiting and they are SO awesome there - and families and all - but again takes an early reservation. I'll get it for you. One thing I have to say to you is that while I was there some patients had a very negative attitude and didn't get any help. Patients with a positive attitude got excellent help. The "complainers" tried to recruit others to their side - you have to have an open mind - they are formed to help you on every level - not just hospitalized in a room and medicate you - you go to seminars, see a therapist, may have other tests depending, and are expected to NOT sit in your room - they will only serve you breakfast in your room. They have SO many interactive "seminars" everyday to go to an interact with so many different ways to deal with your illness including everything from medications to arts and crafts as a therapy - they have may places to hang out and relax and you make many friends and don't feel so alone. And now I have doctor's here that trained there under Dr. Saper. They freely share medical records with your doctors at home and are so good. I'll get you more info and post very soon. Pain is horrible and I have to sign off - but I will tell you that when I got back from there my pain was very low and I thought I could take on the world - but they were very honest with me that it could come back and although it wasn't gone that it may never be completely gone and that I may need more visits - I would go back if my insurance would pay or I could afford it - but at least my doctors still talk to them.

    I'll get you the other info.

    Take care,