I'm afraid I'm developing seriouis and permanent dystonia at 11 months out

[Guest [Pf...]]

I know some people have had dystonia's from benzos, so I hope they can shed light on how they might develop.  I would have thought that it would have developed sooner.

 

During tapering in 2010, I would get these episodes that involved high blood pressure spikes.  I know realize that the spikes were just one symptom.  I was getting extreme eye and head tightness that also included the blood pressure spikes.  Eventually I was able to get off benzos in May 2011, by using doxazosin, and alpha blocker that prevented the spikes.  As I got off the drug, I would still have these episodes, but without the blood pressure spikes, they would not be terrible.  I would get episodes where my eyes and head would get tight, but I would push through.

 

These episodes were periodic in the first few months and for the most part seemed to improve over time in terms of frequency and intensity.  In late July, I got hit bad.  The episodes would occur even without stimulation that typically caused them.  I sat in my house for a week.  For the first time, I got episodes where my neck would tighten on it own without any particular activity.  The episodes also took on a moving quality -- eye tightness, then neck tightness, then stomach tightness and back again.  After about a week, this let up.  And overall my condition improved.  It continued to improve throughout the rest of 2011.  Even so, certain activities would cause these symptoms to kick up.  Certain lighting woudl rev up tight and blinking eyes, whereas talking might cause my neck to tighten.  Occassionally stomach would tighten, as would arm or leg or both.

 

By January of this year, I had improved greatly.  I was at the point where I thought that the worst thing was that I did want to do things, but that soimetimes I would overdo it and symptoms would rev.  They always resolved once I sat down and relaxed.

 

At the end of January of this year, the episodes became more frequent, but still generally happened only in response to activity.  But now they are taking on a life of their own, with painful eye and neck cramps.d

 

Any thoughts

 

 

 

 

 

 

 

[[fi...]]

I would first get checked out by a neurologist.  Paxil caused Cervical Dystonia in me and I was given Klonopin to relax my neck (which it did).  Klonopin, however, caused other problems, so that's why I am slowly weaning off of it.  Whenever I have come off of Paxil, the Dystonia slowly goes away.

 

By the way, are you on Reglan or anything else?  Reglan can cause movement disorders.

 

At any rate, I hope things improve for you.  With Dystonia, however, I have found that stress does not play a part.  It is constant even if I am sleeping, so some of the things you mentioned about stimulation causing it leads me to believe it is not Dystonia, but a neuro could give you a more precise diagnosis.

 

Some common protracted w/d sxs are shaking attacks and jerks, according to this article:

 

http://en.wikipedia.org/wiki/Benzodiazepine_withdrawal

 

I hope things calm down for you.

 

Sincerely,

 

fg

[[On...]]

Hi Pfeff,

 

Y'know, I'm thinking that if you had just last tapered from all benzo's on May 4th, 2011, that you most likely have protracted withdrawal symptoms. I think it's entirely too soon to discount this fact, since many people have had withdrawals of various sorts for as much as two or three years and rarely are stuck with any real noticeable symptoms after that.

 

I realize there is nothing more reassuring that getting some medical tests that provide some "hard facts", so I don't want to dissuade you from seeing a neurologist as "fishingguy" suggested. But I was hoping to help with the unlikelihood that this is anything permanent. I know myself, a clean bill of health from a specialist carries quite a bit more weight than just what "some guy" on a internet forum told me.

 

I just hope you don't worry too much over this unlikely scenario.

 

Take care Pfeff! 

 

 

 

[Guest [Pf...]]

I actually saw both a general neurologist and a movement disorder specialist neurgologist this week.  They do not know what to make of it.  When I was at the specialist, I only had some blinking, which I have had for a while and which has been getting better.

 

He said that he had heard some things about benzo withdrawal.  He thought that psychlogical symptoms as opposed to physical symptoms were more likely to be long-standing, but he said he was going to read up on the Ashton stuff and then we will discuss again in two weeks.

 

I am curious of people on here who have developed dystonias from benzo use, when those developed.  I certainly have had some degree of this from the time before I completed my taper and it has been getting better over time.  I was wondering if anyone either developed dystonia 10 months out or whether it got worse that far out.  I would think that a dystonia from benzo use and withdrawal would manifiest itself at its most serious sooner than that, but only experience will tell.

 

I also had been on paxil and had dystonia from paxil but have not used that in years.  My MD had tried Seroquel with me for about a month in 2009.  I would not think that I would develop a dystonia from that drug 2.5 years after starting it.  I also would not think a month's use of seroquel has been shown to cause dystonia.

 

Anyone with experience with this?

 

 

 

 

 

 

 

 

[[On...]]

Pfeff,

 

I don't know by your post what tests they may have done, or if it was more anecdotal with the neurologist, but the fact that they didn't "know what to make of it" seems actually more encouraging, as my experience has so far dictated that the doctors can't see very little if any of these symptoms were having with tests, meaning that they are benign. I would highly doubt that only a month's use of Seroquel would do any long term damage anymore so than benzodiazepines or all the other anti-psychotic drugs.

 

I still think your issues are protracted and will get better with time in spite of your recent worsening. It can take a long time to get rid of physical symptoms as well, afterall it's all coming from the same area that causes mental symptoms too.

[[Ke...]]

Pfeff,

 

I don't have any personal experience with that but, given that you have seen doctors, I would attribute it to protracted wd symptoms. It is unbelievable how a messed up CNS can affect your body. You can't make this stuff up, it is so bizarre. Stunning, really. See if you can calmly and objectively discover any causality from you emotions, actions and the like.

[[fi...]]

I took Seroquel for about a month but then weaned myself off of it (with the doctor's permission).  I agree with the others.  It sounds like you are experiencing protracted w/d symptoms.

 

Sincerely,

 

fg

[Guest [Pf...]]

They've taken blood tests.  They also did a bunch of EKG etc before.  All pretty normal, except for elevated muscle enzymes, probably from the cramps.

 

I am going to have a muscle conduction study in a few weeks.  I don't think there are tests for dystonia -- I thought that it is based on observation and ruling out of other causes.

 

I doubt the dystonia is from seroquel but from years of benzo use.  I know that I have some, maybe temporary, but thought it was getting better.  Now it got worse.  I have a theory.  I will post that in a separate entry.

 

Thanks all.

[[fi...]]

I thought benzos were generally given to relieve Dystonia.  That's why Klonopin was given to me and it really did help out.  You're right, Dystonia is usually based on observation by a neuro, although I have had blood tests and nerve conduction tests to rule out other problems.  The tests were negative, by the way.

 

At any rate, I hope you see some relief soon.

 

Sincerely,

 

fg