Gabapentin for dystonia?

[Johndo666]

Hi,

My generalist and neurologist think I have slow onset generalized dystonia. I am 40 years old. I do not take any medication whatsoever. My symptoms have been getting slowly worse since my teens.

I have facial spasm, neck twisting, spasms in both hands and feet which prevents certain movements. I also have widespread myoclonic twitches all over my body, from head to toe.

My neurologist has just prescribed me 900 mg daily of gabapentin. He insures me that it will not make me drowsy and that it will stop the spasms, dysphagia, etc.

I am suspicious as evryone tells me that this medication usually does not heal dystonia and that it also causes drowsyness. Note that I am pain free most of the time except when I get dystonic storms and then do some bad movement.

Before I throw the prescrption away, an any one tell me if this treatment is what will get rid of all my dystonic symptoms and if it is trud that it does not cause drowsyness?

Thank you!

John d.

[p41oh]

My experience with dystonia is very similar to yours.  Treatment is a trial and error process that takes patience and time.  What works for one person may not work for another.  Your best bet is to work w/a neurologist who specializes in movement disorders.  If you don't get good results, find another doctor.  My doctor told me that even experts don't fully understand dystonia.  If you're worried about side effects from Gabapentin, ask for a smaller dose and work up.  There are a number of other drugs used to treat dystonia, including botox injections.  A lot of patients take more than one.  I take 4.  Don't give up hope.  It took a couple of years to customize my treatment plan.  I'm not symptom free, but I'm better.  If you live in metro DC, I know of a good doctor in the area.  

[allysonfinch]

Hi p41oh - I live in DC and feel like I have a good doctor, but would love to meet up with you sometime to discuss dystonia in general and how you manage your symptoms. Oh, I was diagnosed with dystonia in July.

[EmmyJN]

Gabapentin is a good drug for some things, and not for others. General side affects are things like headaches, stomach pain, dizziness, dry mouth, sleepiness---the normal things that can happen when you go on any drug. Most of the time, gabapentin doesn't have extreme ill affects on anyone unless you skip a dose.

I do know of people who say the drug can be addicted in high doses. Considering that you're just starting the medication, I wouldn't guess you'll be on a high dose.

I personally use gabapentin for nerve pain and control of motor skills in my arm. My neurologist told me that gabapentin isn't really a drug that "cures" anything, more so it helps with the neurological symptoms associated with some illnesses. I know my pain hasn't been "cured", but it has been made bearable.

I dont know a lot about dystonia, but I agree with ggreg, you should probably try the tranquilizers. From what I've read from the doctors on here, that seems to work the best.

[ggreg]

Well, gabapentin does make a person sleepy, but in time the effects go away.  It is used mostly to help with pain and sleep, altho it is also used to help people with other neuromuscular disorders like RLS.  But from what I understand, the best medicine for Dystonia, among others, are tranquilizers, like Valium and Klonopin.  I have RLS and take a low-dose mild opiate, it stops it cold, only have to increase dose every few years, but RLS is not the same as Dystonia, so your health issue may not resolve with opiates.  I also take tranquilizers, those are powerful drugs and have to be used responsibly.  And as for gabapentin, it is possible your doc thinks it may help it from experience in treating your condition, I don't know, but it is used for a number of things other than fibromyagia, including some muscle problems.

Instead of gabapentin, I take its cousin pregabalin, altho I've been on both.  I have severe lower back pain, it takes care of it.  Initially I was really sleepy, went on for a couple weeks, and eventually I got over it.  If you have doubts about using this stuff, unless the doc has used it on others who have Dystonia with good results, you could ask him for something more standard on account of you are wary of being too sleepy.  See what he wants to do.  I'm just sharing what little bit I know about my medicines.