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I was diagnosed with focal dystonia about a year ago. The only part of my body affected is my left back region, the trapezius muscle just below my scapula and the deep paraspinal muscles just left of my spine in the same general location. Some days I walk with a noticeable lean towards the left with the classic "tics" that accompany dystonia. I seem to be the only person on earth with dystonia in just this particular area. I have had 400 units of BOTOX injected during the last two months with my next appt. 9 July. The Doc will probably go to 500 or 600 units to see if it works as the 400 units barely relieved my spasms. I take 10mg Valium every evening at 6:00 and then 2mg of Klonipin an hour before bedtime so I can get good sleep. I take no medication except 20mg Paxil in the morning, so I can say that life is at least manageable compared to some of you here. I think DBS is the final step for me, but does anyone really think this will work for me? I am currently an active duty Coast Guard medic in school, and the drugs don't really hold me back as I take them mainly to get tom sleep. Any info will be greatly appreciated. Thanks in advance, "Doc"
Posts: 116 | Registered: Jun 2006
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Dear Doc, I have had a more serious case of right rotational cervical dystonia with both retrocollis (when more stressed) and anterollis for about the last four years. I was finally diagnosed about 2 and a half years ago- with the Botox treatment really not doing a lot- although I notice more improvement with time. Right now, I would say that the Botox gives me 5 weeks relief (with perhaps a 40% decrease in symptoms at 380 units of Botox) during the three months I have it within my system. I have heard others report much better results (up to 80 to 90% improvement)- with the treatment sometimes taking up to two years to work its full effect. I notice that you only take oral meds that are Benzodiazepines (except for Ativan- which works well for me). The actual first line medications are anticholinergics (eg., artane, cogentin). Tetrabenazine (although, expensive and experimental), muscle relaxants (eg., Flexeril, Baclofen, Zanaflex, Soma), anti-convulsants (eg. Tegretol), and Anti-Parkinsonian meds used to bring relief to focal dystonia, as well. As far as DBS is concerned, I believe that it is used fairly often for Generalized Dystonia, but is at a very experimental stage for the Focal Dystonias.
Hope this helps!
Robert T. Zozus, Jr., Ph.D. Clinical Psychologist
Posts: 28 | From: Wilmington | Registered: Jun 2006
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Thanks for the quick reply, Dr. Zozus. I should have added that I have taken other meds such as sinimet, baclofen, zanaflex (which made me feel sick...LOL). None of those meds worked. I told the Doctors at Balboa Hospital, in San Diego, that I didn't want to take any meds that would affect my memory as I was taking a year-long advanced medic's course. Artane was out of the question. The Docs at that Hospital were practically clueless about dystonia, so I requested to transfer to a civilian Body Movement Disorder Specialist who is injecting the BOTOX. I will transfer to the San Fran Bay area this fall, so I'm hoping more experienced doctors or BMDSs are available. I may inquire about the other drugs that you mentioned. Can you give me a clue-brief of course-to some possible side affects of the meds that you mentioned? Thank you for your time. Chief Petty Officer George, USCG....
Posts: 116 | Registered: Jun 2006
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Here are the medications that I suggested may be used. I will let you know from my memory and experience what I remember about drug interactions and side effects. I will also provide you with some internet sites which will give you more info. about these meds. Hope this helps!
Medications Used to Treat Dystonias:
Sinement (Anti-parkinsonian, especially for those under 30; some miraculous responses can occur to dopamine responsive dystonia)- Didn't work.
Botox (and Dysport in Britain- can use only every three months for fear of anti-bodies developing to drug. Usually start doseage low and increase to therapeutic effect, for same reason. Some neurologists could increase to 500 to 600 units without fear of anti-body development, although many hold that 400 units should be the maximum, Works because temporarily destroys nerves causing excess muscle stimulation) Trying maximum dose. Make sure he is using an EMG meter guided needles for maximum effectiveness.
MyoBloc another type of Botox. Given in higher doses, but also with three month period between shots). May be particularly useful if develop Anti-bodies to Botox A. Could be useful in your case. I've had no side effects from Botox.
Artane and Cogentin (Anti-cholinergics- must watch for Serotenergic effects when used with anti-depressants and/or Flexerill. Serotonergic effects include: blurred eyesight, extremely dry mouth, severe constipation). Appparently helps by sedetative qualities) For you, I would engage trials of Artane, then Cogentin. Unfortunately for me, I could not take the Serotonergic effects and neither could be of help.
Diazepam, Ativan, and Klonopin (Benzodiazepines- much watch out for tolerance and withdrawl effects, sedation- may work because of muscle relaxing qualities) Would not increase because of concerns about concentration and memory retention from what you are already taking.
Baclofen (Muscle Relaxant- sedating effects, which do seem to dissipate with time) May be prescribed up to 80 mg., 20 mg.- 4x daily. May need higher doseage to be effective. Main side effect is sedation, which I have found to slowly dissipate with time. Should start at 20 mg., and increase at 10 mg. intervals weekly until reach effective does.
Tetrabenazine (expensive- more than a 1 per pill- up to 3 pills daily), an anti-dopenergic drug which reduces dopamine witholut deleterious movement side effects. Experimental drug- not sure if there are any active treatment protocols for it. It is expensive, otherwise.
Flexerill (along with Zanoflex and Soma- muscle relaxants- must watch sedation effects) Also, with Flexerill, may cause Serotonergic reaction (see above- especially if used with anti-cholinerigics and newer antidepressants). So, Zanaflex is a no go. Flexerill is perhaps used more for Dystonias, and Soma is another option to try.
Anti-depressants: (May help because of anxiolytic effects and reduction of pain)
Newer anti-depressants (with the exceptions of Wellbutrin, Trazadone, Prozac, & Buspar <mainly an anxiolytic>- which may cause dystonic type reactions mainly by increasing dopamine levels, it would seem)
Older anti-depressants (with the exceptions of <the Tricyclic Antidepressants> Surmontil, Vivacitl, Triptil, Aventyl, Pamelor, Elavil, Endep, Anafranil, Norpramin, Adapin, Sinequan, Tofrani and the <Dibenzoxazepine> Asendin)
1. Used by some physicians to reduce pain, as well as the depression effects that often co-occurs with Dystonia. Newer anti-depressants have less side effects (not only with regard to movement disorders, but also with regard to toxicity and dietary restrictions). a. The only older anti-depressants that could be considered in use with dystonic patients is the Tetracyclic (Ludiomil), the Reversable Monoamine Oxidase Inhibitors (Manerex), the Irreversible MAOI's (Nardil, Marplan, & Parmate- all which have very significant dietary restrictions).
2. Because of the more significant side effects associated with the older anti-depressants, usually the newer anti-depressants will be used first (including Celexa, Lexapro, Paxil, Zoloft, Luvox, Effexor and Remeron) Already using Paxil. If you are not depressed, and sleeping, then I would not change meds here.
Anti-hypertensive- (apparently help because have anxiolytic qualities) It may be helpful to try one of these meds, especially if you are already on an anti-hypertensive. However, do not take them at the same time, or in combo with other anti-hypertensives.
1. Catapress: (.2 to .6 mg.- rebound effect if discontinued, should not be combined with Beta Blocker like Inderal, below. Also, watch for serotanergic reaction and sedation).
2. Inderal (40 mg., 2x daily to start- up to 320 mg. per day for anxiety)
The following areURL's of Online Resources Medications in General (& Possible Drug Interactions):
Please know, Chief Petty Officer George, that my suggestions or comments about these medications are made solely based on my personal experiences and reading- not on my training as a clinical psychologist. I do help they provide a place to start, however. And, I would be sure to utilize the drug information sites I have given.
Best Wishes,
Bob Zozus
[ July 05, 2006, 07:28 AM: Message edited by: Lori at WE MOVE ]
Posts: 28 | From: Wilmington | Registered: Jun 2006
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Thank you, Doc. I will talk to my BMDS-Neurologist about your suggestions. Don't worry, I've placed a disclaimer on your behalf on all info that you have given me in case I wind up "break-dancing" in the middle of the interstate...LOL. Thanks again; you have been most kind to take the time to inform me of several options. Pleasant days to you, sir. "Semper Paratus"-Honor, Respect, Devotion to Duty....USCG motto and code of ehtics... Posts: 116 | Registered: Jun 2006
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Visit the WE MOVE Dystonia page for detailed updated information regarding drugs used in the treatment of Dystonia. Please remember that all information is provided for education and awareness and is not meant to replace a consultation with your treating physician.
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