May have to take Baclofen -scared.

Saw neurologist today who has diagnosed segmental dystonia and suggested I try Baclofen which is a GABA Agonist.

 

Really don't know what to do as very disabled by constant movement disorder stuff.

I would do your research on some natural remedies or give it time.

 

I’ve heard gabapenton prevents the formation of new synapses,  so it would be harder to effectively heal.  I’m not sure about baclofen but they’re similar.  I’d be cautious.  I got baclofen online here too after trying hard to get it from doctors,  now I am staying away. 

 

I haven’t seen this medicine mentioned here often,  so can’t be sure if it’s safe. 

 

Ajusta -- I am sorry to hear you are having such a rough time.  In my opinion, natural remedies can be as problematic for some people as other medications.  I don't know how severe your movements are but in my opinion I cannot see the downside of trying the baclofen or half of one.  I do know someone in benzo w/d who started baclofen after two years from a c/t and who thinks it is beneficial.  I also have it for my lower back pain and take it very sparingly....maybe a quarter or half of a tablet once every two weeks.  But it sounds like you would be taking it regularly.  The downside that I find from it is that it can cause some DR for me and some rebound anxiety about two days later.  And so generally, for me, the juice is not worth the squeeze.  And then there is always the concern that it is a medication that could or might impede recovery.  Did you read the Wikipedia article on it?

 

I do know that once you take it regularly that you CANNOT c/t it.  It needs to be slowly tapered.  So that is a major reason why I don't take it regularly.

 

Please continue to post and let us know how you make out.

 

Carol

Thank you both!

 

The movement is quite bad - it is constant and very painful right the way down my back and neck and across my shoulders and my abdomen.

 

I'm still not sure it is Dystonia myself as it seems related to a spinal problem.

 

Carol i is reassuring to hear that someone else on hear is taking it and that if I have to take it it may not completely prevent healing from the diazepam.

 

The neurologist has said to start on half a tablet at night so I could try it and see if it helps.

I took 5mg baclofen last night. Didn't notice much but woke up with severe pain in right shoulder and down arm. I can hardly use my arm..

I can't cope with this on top of everything else.

That pain will probably move on out.  You may have slept on that side.  I get intermittent shoulder pain like that.  It is usually gone in a day or two.

 

I know you are suffering.  Just get through today.

 

:thumbs:

Carol

I hope so.

 

I have taken baclofen and methocarbamol and it has not reduced spasm throughout my body at all which is frightening.

 

I have taken naproxen and co codomol and pain is still severe.

 

Do you notice the spasm gets much worse when baclofen starts to wear off?

I don't have spasms.  I have lower lumbar pain.  It was prescribed for that.  I don't find it to be a very effective pain reliever. It does reduce my anxiety some.  However, I do not like to take it very often.

 

If it is not working for you, then don't take it.  I think Flexeril is good for muscle spasm but you can't take it if you are on an AD or Trazodone because it has a serotonin enhancer.  Maybe speak with your doctor about trying an alternative?

 

Don't worry about the pain, though.  It will go away unless you have a structural issue like joint disease.

 

Carol

I have severe degenerative disc disease.

Where? I have it in my lower back and neck.  When I mentioned that the pain should leave soon, I was referring to the shoulder and arm pain.

Hi Carol.

 

The shoulder pain has reduced which is a relief.

 

I am frightened though because the Baclofen is not doing anything to reduce the hypertonic muscles throughout my back, hips, neck and head.

 

I was in such a state yesterday I took a small dose of diazepam and that also did nothing.

 

I have degeration throughout my spine, hips and sacroilliac joints.

 

When I stand I sway back and forth from the waist and my head moves back and forth on my neck.

 

Most of my spine feels rigis apart from a few places where it feels incredibly unstable.

 

I don't know what to do.

 

 

Ajusta -- yes, you were very worried about the shoulder pain but that is resolving.  It is possible the baclofen is not helping and if you have taken it for under a week in my opinion you should stop it.  And speak with your physician about another muscle relaxer if you want to try another one. 

 

Unfortunately, a lot of these withdrawal symptoms do not respond to other medications.  From your signature it looks like you were on a variety of meds for a long time.  As was I.  Although it is terrifying to have severe withdrawal, symptoms will subside and be less severe after a while.  I would not recommend using a benzo prn although I can certainly relate to feeling desperate enough to take one.

 

You can pm me if you like.

 

Carol

Ajusta -- yes, you were very worried about the shoulder pain but that is resolving.  It is possible the baclofen is not helping and if you have taken it for under a week in my opinion you should stop it.  And speak with your physician about another muscle relaxer if you want to try another one. 

 

Unfortunately, a lot of these withdrawal symptoms do not respond to other medications. From your signature it looks like you were on a variety of meds for a long time.  As was I.  Although it is terrifying to have severe withdrawal, symptoms will subside and be less severe after a while.  I would not recommend using a benzo prn although I can certainly relate to feeling desperate enough to take one.

 

You can pm me if you like.

 

Carol

 

Carol, that is the first time I've ever seen that, and I believe it is absolutely true, at least in my case it has been. Thank you for pointing that out!!

 

Ajusta, I wish you all the best!!!

 

 

Thank you!

 

And right back at you both!

 

Pain down arm is still there when I move it but not as bad which is a relief.

 

The only drugs I am finding helpful atm are Ibuprophen or Naproxen and sometimes co-codomol for pain.

 

Occasional Cinnarizine for vertigo type stuff - that's a difficult one because it can cause Parkinsons in some people so I am trying toonly take it when things are very bad. It is interesting that it seems to help with other brain symptoms. I don't know if thst is because of it's nootropic fu nction or it's action on dopamine or just because it has a sedative effect. Also it is

 

Promethazine try to help with sleep as no sleep is very bad for ME/CFS.

 

Both Cinnarizine and Promethazine are anticholinergenics as well which is very interesting in relation to withdrawal and dystonia.