Medication for Dystonia

[Cathy]

I have had dystonia for a little over two years now.  I have spasms all over the body, blespharospasm, and spasmodic dysphonia.  I also have tremors and ticks, and body jerks.  I have recieved botox 3 times.  That mostly helped with my SD.  Anyway, my question is very specific.  I was given Levadopa about a year ago.  When I took the medicine I went into constant spasm.  I tried it on 3 separate occasions, with the same results each time.  It was awful.  The last time I took a quarter of the pill with the exact same results.  Wouldn't this suggest that I am making too much dopamine?  He then tried me on reserpine in large doses and Tetrabenazine that I recieved from Canada.  I was not able to tolerate either drug, so was only on them a very short time.  Because he did not understand the unusual body spasms this last time that I went, he now believes it might be partly psychogenic.  Although, I have a firm diagnois of SD.  So the last 2 questions that I have are.  Would a normal person with no dopamine problems respond to the levadopa the way I did, or am I right in my assumption that I am probably making too much of it.  The second is, are there other drugs that reduce the dopamine levels?  My family Dr. is now working with me and is wanting to do whatever he can to help.  I have undergone numerous psychological evaluation for this and each time was told I need a neurologist not a psycholist.  In otherwords, I have no psychological problems in their opinions.  Thanks for any help that you can share with me.  Cathy

[CCF Neuro[P] MD, RPS]

Dear Cathy:

Before one begins with medication, it is best to know the etiology of the problem.  What is the etiology of your spasmodic dystonia?  Most of the time, we don't fully know the answer to this one entity.  The next question is what is causing the tremors, tics, and body jerks.  Are the body jerks myoclonic?  If the body jerks are myoclonic, then the benzodiazepines are a good medication for these.  Is there a relationship between an abnormal EEG and the jerks?  The tics, are they both motor and vocal, or just motor?  The medication for these are the neuroleptics, such as Haldol or Orap.  What did the EMG show concerning the fasciculations?  If there were no EMG correlations and you do not exhibit muscle weakness, then the fasciculations may not be related to a known physiological etiology.  In that case, you might have what is called benign fasciculations.  This is called benign in that we do not have any evidence that they do physiological harm (although they are certainly psychologically devastating).  The tremor, what type of tremor do you have?  There are many types of tremor from a variety of etiologies.  L-dopa seems to only help the Parkinsonian type due to basal ganglia dysfunction.  To treat the tremors one has to know the type of tremor.

I am sure I have only confused you.  But, the etiology of the problems need to be addressed to give a patient the proper help with the best medications.  This should be done with a good neurologist.

Sincerely,

CCF Neuro MD

[Cathy]

Thank you Dr. for your answer, but you are right.  You raise more questions than I have answers for.  I have had a MRI and an EMG and an EEG when the spasms first started a little over 2 years ago.  Nothing since.  So I have not had any tests done since the Tremors, or jerks began.  The SD ABductor type began a year after the first facial dystonias and spasms.  I was scoped twice by a speech specialist and had no etiology mentioned.  Maybe I should mention that 6 months prior to the dystonias I had a left vestibular neurectomy for what was diagnosed as vestibular nerve disease on both sides.  They also never had a reason for this.  After the surgery I developed a spinal leak and had a lumbar drain in place for a week which I finally had surgery to repair the leak a week later.  I guess I would still hope that you can answer my original 2 questions.  Whether or not levadopa would create that responce in a normal person and if there are other drugs that reduce dopamine.  Thank you, Cathy

[CCF Neuro[P] MD, RPS]

Dear Cathy

One could have symptoms of orthostatic hypotension, some dyskinesia, dizziness, insomnia, confusion, hallucinations, headache with dopamine agonist.  Yes, there are dopamine antagonist such as haldol.

CCF Neuro MD