Treatment for Dystonia (Baclofen)

[Emily007]

BACLOFEN

Baclofen made my body get larger and larger. It's gone down a bit but I am left with a spare tyre at the bottom of my abdomen. The rest of it looks like I'm pregnant! Will it ever go down or am I stuck with it? Has anyone had a similar problem?

[eviedotty]

can I ask is all dystonia now being seen as FND if you dont mind me asking...I have generalised and Baclofen made me retain urine so I spent a week in hospital with it

[Emily007 in reply to eviedotty]

Hi, I had the opposite effect. Baclofen made me urinate A LOT! They try to say it is functional but Dystonia is a condition on it's own. Mine was caused by a reaction to medication. I was given Baclofen for spasms but it made my body go up like the mitchelin man.

[eviedotty in reply to Emily007]

mine is caused by a cavernoma in my brain at the basal ganglia area which is the area of the body that controls movement. It bled and caused dystonia then an anti sickness drug I had to cope with chemo spread it and made it generalised but they are now even with MRI scans etc trying to say mine is FNDI have 3 cavernomas that are rare and are or can be best described as the baby cousin to an aneurism in that it will or may grow/shrink/leak or bleed in a significant way but it belongs to the smaller blood vessels called capillaries

So even with the evidential scans etc they are now trying to call it FND

[Emily007 in reply to eviedotty]

Hi. I sympathize with you on this. They use "functional" on many occasions even when they know perfectly well what it really is. It's to do with "cause". If they give the condition it's real name then they are afraid someone might say "what caused it" and they don't want to implicate anyone. I hope you understand. I am in the same situation.

Best wishes and I hope you keep well, Emily

[eviedotty in reply to Emily007]

I have that covered mine is caused by a cavernoma in the Basal Ganglia area of the brain that bled so essentially they are disrespecting the neurosurgeon team and not just me....this was established so many years ago and it was given as a reason for making the FND diagnosis difficult as the issues I have do show up on scans and blood work and are therefore validated already...

[artisin]

Baclofen did not help me when I was first identified with cervical dystonia. The docs tried about 32 different drugs for me and ultimately what is working best for me is Klonopin. But remember, this is not a recommendation it is just a personal experience of what seems to be working best for me. I went off about five years ago and my dystonia got worse. Started back on again a couple weeks ago and I am seeing my old self come back out. I was tired the first two weeks but now feel back to self. Baclofen made my head feel like I had water in it and I was clumsy, etc. It did not help me. You could at least ask about this option. I wish you well. Having dystonia is a journey and certainly finding help is not a race even though we would like it to be.

[Emily007 in reply to artisin]

Hello. Thank you so much for your advice. I wish you well to. Emily