Tuesday, April 13, 2010

Stability vs. Stability...

Since I've stopped the medication, I've noticed a marked decrease in stability, as well as a miraculous increase in stability... Confused yet?

Me too...

While I was on the pills, I noticed that my joints were more stable... as in they weren't dislocating as frequently.

When it got bad, and I was in the hospital, I had truncal instability, as well as a lot of "shimmying." It was horrible, but I wasn't dislocating anything... I just couldn't stand still, or stand straight... No balance, relearning how to walk with every step, etc.

When I was first off the pills, I still wasn't dislocating like I usually do, and the twitching wasn't so bad, but the longer I'm off them the worse the twitching gets, and the more unstable my joints are... I'm dislocating everything all the time again. Add the dislocations to the once-again-violent twitching, and I'm in a world of pain.

I don't know what's worse...

Not being able to walk, while keeping my joints in place, and having pain levels around 3-4 out of 10... Or being able to walk, while continuously dislocating everything, with my pain around 6-7 out of 10.

I just want to move only when I want to. And only in the direction I intend to move in... Without dislocating things... Not being in pain would be nice too.

I hate how the choices are between bad and different bad...

Right now my hips hurt so much... It feels like someone hit me with a sledgehammer... They keep subluxing. And my shoulders keep dislocating from the twitching, and I still have no balance... But I know where my feet are, and apparently that's enough.

I'm miserable... Like depressed-miserable... I just want to curl up in a hole.

Upon further thought, another thing I prefer about drug-induced truncal ataxia is the fact that it's predictable; I knew I was going to have to teach myself how to walk every time I stood up, I knew I would not be able to stand still... Whereas the twitching comes and goes... I can be fine for up to a couple of hours, and then BAM! I'll throw a glass of water across the room... Or hit myself hard enough in the face with a file/stapler/ruler/pen/coffee cup/phone at work that I dislocate my jaw...


Achelois said...

This is so confusing for you. I am no doctor yet so many things come to mind. Have you been assessed for tourettes at all. Just a minor thought. There is a good site on movement disorders which I will try to remember so bear with me on that one.

I am sure I wrote here somewhere a while back that at one point I was on a medication that caused terrible twitching but it was a long time ago and I can't remember what it was I am afraid.

Have you always twitched?

it took ages for the doctors to realise that it was a med that was causing the problem.

I am not saying this is the cause for you I just really really feel you could do with some answers and really undersstand why you are understandably fed up. Have the doctors thought of an anti depressant for a while just to take the edge of all of the awful stuff you are having to put up with.

I wonder whether also holistic approach would help at all. Like meditation, relaxation techniques, hypnotherapy, reflexology etc. Only thinking out loud as usual.

With regard to the dislocations so frequently, a tip I was given on an injury prevention course was to 'think' about each potential movement before I take it sort of telling the brain what you are about to do before you do it. No sharp movements and instead of turning to the left or right quickly, using a technique of circles so that if a step to the right for example to go out of the kitchen door instead of turning right take a small detour via a circular movement. I haven't explained it well but it can really help with dislocations.

I also wonder whether some water therapy would help over here its called hydrotherapy so that you could build up core stability and muscle strength without weight bearing. Also it has the benefit of being relaxing.

Well thats enough from me, please do not feel obliged to answer all I have talked about I am just trying to think of possible options that means that you can live with the condition rather than the condition control you.

Please take care and keep posting and talking.

BubbleGirl said...

Thank you, as always, for your comment.

I've been slightly twitchy for many years. Bit it was only once or twice a day. Now it's almost constant, and it's a lot more violent.

I've been on antidepressants before, and they never seem to help. I haven't been to the doctor since they let me out of the hospital, and I'm still waiting for a call with my appointment time.

I've thought of trying water therapy before, or just swimming, but I haven't gotten around to actually doing it. I used to swim a lot when I was a kid, but I haven't been in a few years.

elise said...

Honey, you are in my thoughts and heart. It's awful that you are going through this.

Just for curiosity sake, check this site out and see if anything sounds similar to what you are experiencing.

An antidepressant or anti-anxiety, as Achelois says, might not be a bad idea. Drugs are not always the answer, but it might help in the short term (I'm on the long-term plan). ;)


BubbleGirl said...

It's impossibe to find anything that "fits" all of my symptoms.

It looks a little like MS, a lttle like epilepsy, a little like tourettes, with some dyskinesia, ataxia, and 17,000 other things thrown in...

I'm going crazy.

I think not knowing is the worst part. If I knew what it was I feel that I could do something constructive with the information... The speculating is going to give me ulcers...

It also looks like a lot of the drugs used for mood disorders would have a negative effect on movement disorders... I hate not knowing.

Anonymous said...

Just reading your blog since my daughter has Ehlers Danlos and ataxia. My sister has Primary Orhtostatic Tremors. She feels like she will fall if she is not sitting or moving. She has to hold on to something if she isn't moving. She also has lots of tremors so I am not sure if that is different from "twitching" but thought I would mention this. It took docs a few years to figure out her problem.

BubbleGirl said...

Thanks for the comment!

It started out as jerky movements which happened once or twice a day for 12-ish years, then over a course of days I started having tremor-like movements, until I couldn't sit still. Then I started my first medication, a dopamine agonist, which made the tremors turn into the jerky movements I had before, but more frequent than before they got worse, and more violent. Eventually the drugs gave me ataxia/dystonia and I was weaned off those drugs, and the ataxia/dystonia has mostly disappeared, but I am still violenltly twitching, with a bit of twisting thrown in. (This is with me on new medication, which has the added bonus of making me moody, depressed and bitchy).

Most of my falls occur when I am standing still. I don't seem to be falling while I walk (often). I also prefer to have something to steady myself on while I walk.