Care4Dystonia, Inc. » Oral Medications

Oral Medications

A number of oral medications (pills) have been used to control and manage the symptoms of dystonia; the first being Artane in the early 1980s by Dr. Stanley Fahn, MD in children and adults. More often than not, it takes a a combination of several drugs to obtain a beneficial effect. Many of the following drugs do not work overnight. It often takes quite a bit of medication “juggling” to obtain a good benefit. Do not get discouraged. The key point is that with all oral medications that have been applied to controlling various forms of dystonia one has to the following:

Start at the lowest possible dose and increase the dose slowly, and
Use the lowest possible dose for maintenance therapy.

Management of patients with dystonia must be individualized. Currently given the lack of understanding of the pathophysiology of dystonia, no available oral medication has been specifically designed and no drug has been found to be universally effective. No medication for dystonia is curative; all are symptomatic treatments. That is to say, the goal of treatment is symptom-relief.

The only type of dystonia that should always respond to oral medication is dopa-responsive dystonia. We encourage you to visit drdcentral.com for more information on this form of dystonia. The drug of choice for Dopa-reponsive dystonia is Sinemet. Many patients with dystonia are placed on this drug initially as a way to “rule out” this form of dystonia.

Several classes of oral medications are used to manage dystonia symptoms. They include:

Anticholinergics
Benzodiazepines
Skeletal Muscle Relaxants
Dopamine Stimulating Agents
Dopamine Depleting Agents

The Anticholinergic drugs, such as trihexyphenidyl hydrochloride (Artane), may be the most effective agents for dystonia, but even these drugs work in only a minority of patients. It is important to start at a low dose and increase the dose very slowly to try to minimize the adverse effects, which can include dry mouth, blurred vision, urinary retention, confusion, and memory loss.

Useful further medication information:
Rx List - Artane
Rx List - Cogentin
Drugs.com - Parsidol
Drugs.com - Kemadrin ( Read Don’s Story on our Stories of Hope webpage )

The Benzodiazepines can be effective for focal, segmental, and generalized dystonia. No specific study has found a significant difference between the various benzodiazepines. Most movement disorder specialists prefer using clonazepam (Klonopin), starting with 0.25 mg at bedtime and gradually increasing the dosage to a maximum of 1 mg four times daily. The main side effects include drowsiness, confusion, trouble concentrating, and dizziness.

Useful further medication information:
Rx List - Klonopin
Rx List - Valium
Rx List - Ativan

The Skeletal Muscle Relaxants include Soma, Flexeril and the GABA-ergic agent Baclofen (Lioresal) with the starting dose being 10 mg at bedtime, and the maximum dose being 60-80mgs per day in divided doses. The main side effects include drowsiness, confusion, dizziness, and weakness.

Useful further medication information:
Rx List - Baclofen
Rx List - Flexaril
Rx List - Soma
Rx List - Skelaxin

The Dopamine Stimulating Agents include Sinemet, Parlodel, Permax, Mirapex , and Requip. The Dopamine Depleting Agents include Tetrabenazine (TZB) (see Prestwick Pharmaceuticals, Inc. for more information), Reserpine, and Metryrosine. Pergolide has been slowly removed from the market due to acute cardiac side effects ( 2007).

These drugs deplete catecholamine stores and can cause side effects such as parkinsonism, hypotension (low blood pressure), and depression. Tetrabenazine is probably the best oral medication for generalized dystonia but, unfortunately, it is not available in the United States. One must obtain it (by prescription only) via the United Kingdom or via Canada. However, FDA approval for TZB is pending as of 2007.

Additional oral medications currently in use for dystonia include the following:
Neurontin

REMEMBER: AS YOU READ AND LEARN ABOUT ALL THESE MEDICATIONS, BEAR IN MIND THAT THEY ARE BEING USED TO “CALM MISFIRING NEURONS” THAT CAUSE DYSTONIA SYMPTOMS.

Pain Relievers incude :

MyoBloc ( specifically for pain associated with cervical dystonia )
Fentanyl patches
Lidocaine patches can be bought over the counter at your local drugstore.
Emla Cream can be applied 20 minutes topically ( on the skin ) to the areas where you will have botulinum toxin injected to help relieve needle phobia and pain.

To help with sleep :
Lunesta
Ambien
Restoril
Benadryl ( can be bought at your local drug store)
Klonopin
Tazadone ( low dose- can be sedating )
Zoloft or Effexor ( low dose )

Remeron is a new agent on the market being used for sleep.
Natural Sleep Aids include herbs offered by Naturopatch, which
produces scents such as lavender, chamomile and jasmine, which all aid in sleep disturbances that many with dystonia develop over time due to the bizarre postures and involuntary movements.

PLEASE BE AWARE THAT THE FDA IS ISSUING NEW GUIDELINES AND WARNING LABELS FOR SOME OF THE ABOVE LISTED SLEEPING AIDS THAT CAN ONLY BE OBTAINED BY PRESCRIPTION ( Black Box Warnings ) from your doctor.

Keeping Track of Oral Meds

A handout for monitoring medications prescribed to you by your physician ( dose, date started and stopped etc. )
Tracking Your Oral Medication Use over Time ( pdf format )

Oral Medication Side-effect Chart

You can compare side-effects of many of the medications used for dystonia in this chart.
Oral Med Side-Effect Chart (pdf format )

Downloadable Avoidable Meds Page is on Our Publication web page !

Dealing with Benzodiazepine Withdrawal and Tolerance:

This is a list of possible side effects from taking benzodiazepines; it should not be considered as complete. You should seek medical attention if you are suffering from any of these symptoms.

Drowsiness
Dizziness
Unsteadiness
Clumsiness
Weakness
Lethargy
Fatigue
Depression
Confusion
Memory impairment
Headache
Sleep disturbances, insomnia
Slurred speech
Anxiety
Increased nervousness, excitability, or irritability
Behavioural changes
Difficulty concentrating
Hallucinations
Muscle spasms
Skin rashes
Constipation
Nausea
Muscle weakness
Tremor
Changes in libido
Urinary retention or incontinence
Low blood pressure

“Tolerance” is a term used to describe the situation where your original effective dose becomes ineffective. For your medication to again be effective, you must do one of two things: either you supply your body with an increased dose of medication, or you must perform a taper - break - reinstatement program. In the first situation, your doctor would need to prescribe a higher dose of your benzodiazepine. This will result only in a temporary fix. At some point in time, your new higher dose will again become ineffective. Perhaps yet another increase in dosage will be suggested - where will it all end? In the second situation, you must taper off your benzo, take a break, and then reinstate your medication. Even if you were to attempt an accelerated withdrawal, break, and reinstatement program, it could still take months to complete….

Source : http://www.benzobuddies.org/buddiesguide

Additional Links :

http://www.benzo.org.uk/
The Benzo Group Support Site
Benzodiazepine.org
“The Diagnosis and Management of Benzodiazepine Dependence” ( article )
Prof. C. Heather Ashton. ( Powerpoint Format )
- 1st presentation (October 11, 2005)
  —Overprescribing of Benzodiazepines: Problems and Resolutions
- 2nd presentation (October 12, 2005)
  —History of Benzodizaepines: What the Textbooks May Not Tell You

Prescription Med Assistance :

Generic Drug Help :

Note : Care4Dystonia, Inc. Disclaimer:
The above content and links are not intended to be a substitute for professional medical advice, diagnosis, or treatment. They are not a substitute for a medical exam, nor does it replace the need for services provided by medical professional. Always seek the advice of your doctor before taking any prescription or over the counter drugs or following any treatment or regiment. Only your doctor can provide you with advice on what is safe and effective for you. Never disregard professional medical advice or delay in seeking it because of something you have read on the above Websites-Links. Nor should you titrate any of these oral medications on your own- it should only be done under the care of your licensed physician.