Let’s Talk About Drugs
There are many oral medications that one can take to help relieve or control some of the symptoms of torticollis or dystonia. Unfortunately, oral medications have not been proven to be very effective. In one early study on medications, they were found to control symptoms in only 40% of patients with adult-onset idiopathic dystonia. With the advent of botulinum toxin injections, there has been less of a need to emphasize these medications. However, a small number of people continue to be controlled satisfactorily with oral medications alone. The medications also have a place in controlling symptoms as the injections are wearing off.
The advantages of oral medications include their use as prn or as needed medications. If symptoms vary a great deal then being able to adjust the dosage of medications to the needs of the patient is beneficial. Barring any gastrointestinal distress, these drugs are not painful. They also wear off much faster than other forms of treatment. Oral medications are, in general, relatively more expensive than some alternatives including botulinum toxin and surgery. A disadvantage of the oral medications is that they usually must be taken every day.
These drugs are used for pain control. Their addictive potential is very high. The longer these medications are used the dosage usually has to be increased to get the same level of effectiveness. Their best usage is in short-term, limited severe control e.g., post-operative pain control. Overall, their use is discouraged if long-term pain control is to be achieved.
These drugs have less dependency than the narcotics associated with them when used to control pain. However, they can be abused in other ways. If the non-steroidal anti-inflammatory drugs (NSAID’s) are used chronically for a period of time, then when these drugs are discontinued, there can be a rebound reaction with increased headache and other symptoms. When used sensibly, these medications are a useful additional tool to the ST/Dystonia patient especially when there is a concurrent component of arthritis, cervical disc disease or bone spur formation.
This is another category of medications that has some abuse potential. Perhaps the most addictive of these medications is Valium. The drugs with the least abuse potential in this family include the shorter-acting medications Xanax or Klonopin. There is no scientific evidence that one benzodiazapine is better than another. Therefore, it seems prudent to use the shorter-acting, least abusive choices. However, when appropriate, and when other drugs have failed, the more traditional use of Valium needs to be considered. When a decision is made to stop these medications, they should be taken in smaller amounts or less frequently (tapered). Even the shorter-acting drugs should be tapered down in dosage when they are stopped due to the withdrawal that can occur with their discontinuation.Under no circumstances should these drugs be stopped “cold turkey” or just discontinued.
Antispasmodic and Muscle Relaxant Medications
These medications represent a relatively mixed bag of medicines. Even though many patients have very tight muscles, it has been my experience that many of the muscle relaxant medications e.g., soma compound, Skelaxin, and others do not ordinarily help many patients with ST/dystonia. Many of them also have a profound effect of causing some drowsiness. Medications such as Baclofen and, more recently, Zanaflex, may have some role in helping control the “spasms” of spasmodic torticollis. The Baclofen may need to be titrated up to very high dosages in an effort to get some clinical usefulness. This has prompted its use directly into the spinal column with a pump mechanism. With the direct application of Baclofen into the spinal column, less peripheral side effects are experienced. Some patients will use these medications between injections as the injections wear off.
Many of the medications that are used in the treatment of ST/Dystonia have other applicable uses in other movement disorders. Instances where medications help in the treatment of Parkinson’s disease or tics may also prove to be of benefit. Many of the drugs used in other movement disorders will cross over and find a place for use in the treatment of this disorder. These drugs can be grouped into anticholinergics, dopaminergics and dopamine antagonists.
Anticholinergic medications have been used for a number of years to treat the symptoms of ST/Dystonia. The use of these types of medications dates back to the early 1900’s. Unfortunately, many side effects are seen with anntcholinergics. These side effects are often dose-related. The higher the dosage, the more side-effects are seen, conversely, the lower dosage, the less side-effects are noted. It is the higher dosages that are usually effective in treating symptoms of dystonia. Dry mouth and blurry vision are common with their use. More forgetfulness, confusion or even hallucinations or behavioral changes can be seen. These side effects more often occur in the older patient. These medications include trihexxphenidyl and others. It is important to note that the benefits of taking this medication may not be immediate and several weeks to months of therapy may be required to see some improvement.
There are a small number of patients who have dopa-responsive dystonia. This means that when they are able to take a pill that supplies their brains with the same medication that is deficient in Parkinson’s patient’s their dystonia improves. In other patients, the use of L-dopa may worsen 30% of persons with dystonia. Overall, there may be some benefit for some 10% of patients with ST/Dystonia. However, the potential improvements with L-dopa is cost-effective and the side-effects relatively benign, that some consideration should be given to a short term trial (several weeks) on the medication for most patients.
On the other hand, there is another larger group of patients that seem to respond better when the brain chemical, dopamine, is decreased or had its metabolism increased (increased breakdown). These drugs include tetrabenazine, reserpine, haloperidol, pimozide, and phenothiazines. Granted that these drugs do the opposite of the dopaminergic medications do, but this is further evidence that treatments need to be tailored and adjusted to the individual patients and not by some standard recipe.
Other medications that have been used to treat ST/Dystonia include carbamezepine, alcohol, clonidine and lithium.
It is my hope that providing this outline of different types of medications will allow you to have more fruitful conversations with your physicians.
James Auberle, M.D.
Medical Director, ST/Dystonia
My mom and I wanted to thank you for hosting such a great symposium this year. This was our third year and we are looking forward to next years. E. Mathews