Comments on: Information on drugs that can and do cause dystonia

By: Joan

Joan — Mon, 16 Jan 2012 00:02:03 +0000

I have been diagnosed with Cervial and Laryengeal dystonia and Blepharspam. I get 400 cc’s of Botox every 12 weeks and take Baclofen and Tizanidine for the spasms. Nothing really seems to help. The botox only lasts 6 weeks and the meds help just a little. The doctors only want to talk botox and meds. Is there anything else out there that helps? Thanks.

By: Susan

Susan — Tue, 06 Dec 2011 20:22:19 +0000

I developed Dystonia and Dyskenisia after a doctor gave me an add on medication to treat my major depression. For 6 years I had over 40 medications from 14 doctors to treat me. The medications only made things worse. The doctors had no idea how to treat the Dyskenisia and treated me with disrespect, were insulting and humiliating. I was always referred to the psych department for treatment by the neurologists. I’m recently dealing with being called a fraud, that I could harm children, elderly and other vulnerable members of society because it is assumed that I took an anti-psychotic and are bi-polar. I have been banned from volunteering at assisted living, working with elderly, that I could harm my mother with Alzheimers. I’m 59 years old, a former professional woman and developed TD in 2002. My depression is so severe and any medication only brings on severe facial spasms. Recently I took Celexa and had to stop. I hope to find a new doctor who knows and understands.

By: Jo Anna Evans

Jo Anna Evans — Mon, 22 Aug 2011 17:22:38 +0000

I have Spasmodic Torticollis. This past week I was told I have a cancerous lesion that is not life threatening but, it does need to be removed. I need to know what to tell the surgeon which anesthetics that I cannot take. I know the twilight drug Versed is a “no no” and that Lidocaine/Xylocaine causes tremors.Does anyone else know how I might find out about this category of medicines in relation to Dystonia?

By: spage

spage — Tue, 28 Jun 2011 02:08:23 +0000

Both Paxil and Celexa have caused Cervical Dystonia in me. You may want to add these to the list.

By: Toni

Toni — Wed, 17 Nov 2010 19:45:36 +0000

Hi All,
After reading your miseries, I feel a little ashamed to be posting my small problems regarding dystonias, but am afflicted with spasmodic dysphonia and essential tremor of the head/neck. I take a low dose Clonazepam daily which helps with the ET, but does nothing for my voice. Does anyone know of a drug on the market which helps relieve the vocal shakiness/hoarseness of the voice?
Thanks in advance, and I wish each of you the best.
Toni

By: Gene

Gene — Thu, 01 Jan 1970 00:00:00 +0000

I have spent most of the winter months in bed, I am in terrible pain cause by severe muscle spasms. Botox does not work, it just made the situation worst! Clonozapam and Baclofen stopped working, I don’t know what to do.

Any suggestions.

Gene

By: Guest

Guest — Thu, 01 Jan 1970 00:00:00 +0000

http://www.neurology.org/cgi/content/abstract/38/3/391

My understanding is that Tetrabenazine (AKA Xenazone, Nitoman) is can actually be helpful to Dystonias- more than many other meds.

I have Generalized Dystonia plus a failed neck surgery (total of 3, first two involved screw breakage), a permanently dislocated jaw, chronic tendonitis/rotator cuff issues in both shoulders, two herniated discs in low back, and bursitis in left hip. All the damage is from head trauma induced Dystonia.

By: Diane

Diane — Thu, 01 Jan 1970 00:00:00 +0000

Dear Gene,

I have suffered greatly from dystonia. I was in 5 hospitals and was medicated with Clonazepam and Baclofen without results.

I hope this gets to you in time to help. My symptoms have mostly resolved due to Artane and Sinemet. I was very desperate and sick. My dystonia caused my head to constantly be pulling back, contorted my spine and basically affected all my muscles including my facial muscles.

Make sure you are not on any psychotropic medications as that can be a cause.

I feel your pain. You need a really good doctor as well as a thorough work-up including genetic testing and a test for Wilsons disease. I was in and out of the hospital 5 times and still was not better until I got in with a good neurologist. I saw the Chief of Neurology at Wake Forest Medical Center, Dr. Alison Brashier. She was great. I hear that Mayo clinic is good as well.

Best wishes. I hope this helps.

-Diane

By: umar

umar — Thu, 01 Jan 1970 00:00:00 +0000

Make sure you are not on any psychotropic medications as that can be a cause.

By: maheen004

maheen004 — Thu, 01 Jan 1970 00:00:00 +0000

thanks for providing us with such detailed information about the meds. I am a migraine patient and I have to take pain killers frequently but now I am feeling that it has weaken me and my nervous system is getting more and more weak day by day…
Can you suggest me something about how to deal with it???