Migraine, Epilepsy, Psychiatric medication - the frightening facts of tardive reactions

I'm a little late for Halloween, but I wanted to blog about a skeleton rattling around in the medicine cabinet of many headache, pain, epilepsy, psychiatric and other patients, and the startling fact is, they don't even know it. Their nurses, pharmacists and doctors often don't know it. The skeleton may be affecting you and you might not even be aware of it, and it's likely that even if your doctor or nurses saw it, they wouldn't recognize it. Those who suffer it typically go undiagnosed. Those who eventually find a correct diagnosis average approximately 15 doctors and 5 years to achieve a correct diagnosis.

The skeleton's name is Tardive Dystonia and he and his fraternal twin brother Tardive Dyskinesia could jump out at any moment and without any warning, and change your life - forever.

Tardive is a word that basically means a delayed reaction to a medication.

Dystonia and Dyskinesia are similar, but actually quite different. Like fraternal twins, they come from the same source - a medicine you are taking for your Migraines. Like fraternal twins they may resemble each other in many ways. In this case, neuromuscular symptoms are the hallmark of both disorders.

Like fraternal twins, there are important differences you should know about. For instance - dyskinesia is the most easily identified of the two, and is the one most often seen by doctors. Dyskinesia most often (although not always) goes away when the medicine that is causing it is changed or withdrawn. The symptoms are annoying and often unsightly, but rarely painful. Dystonia however, is often permanent. The movements and spasms that it creates are uncoordinated and can be severe as well as excruciatingly painful.

What's more, these tardive reactions can actually trigger more Migraines in those who suffer them. This can result in a snowball effect:

**Migraine attacks resulted in the need for medicines
**Medicines caused tardive reactions
**Tardive reactions cause more frequent or more severe Migraine attacks
**More Migraine attacks require more medicine that causes the tardive reactions.

I suffered from these medicines for a number of years, and now my Dystonia is permanent. I was prescribed them as treatment for Migraine attacks. I went to several doctors and had extremely severe dystonic attacks in the hospital both with and without provocation by medication before I was lucky enough to run across a neurologist who knew what it was. Before that happened, I was mistakenly misdiagnosed as suffering from severe Migraine aura, epilepsy, psychological issues, and even drug seeking behavior. I suffered greatly at the hands of those who did not understand that my brain had been damaged and how to treat it. Unfortunately, I continue to suffer at the hands of physicians who are not movement disorder specialists yet think they know enough about Dystonia and tardive reactions, and I struggle daily with balancing the treatment of Migraine and chronic pain and keeping the medicines that would hurt me further, out of my body. As a health activist in many areas, I hear from patients all too often who are suffering as a result of these medicines, and don't know why or how to get help.

When your doctor prescribes a new medicine for you, do you ask about potential adverse reactions? Do you carefully read and double check for adverse reactions and contraindications by looking up new medicines online? What about the members of your communities? Has your doctor or pharmacist mentioned tardive reactions to you? If so, how were they explained to you? If you had a tardive reaction, would you know what to do?

This topic is extremely important, and rarely addressed, so I hope you will stay tuned next week as we begin to discuss the fascinating details of these reactions in more detail.

Additional reading:

Care4Dystonia tardive reaction medication list
WEGO Health's Dystonia forum
WIKI on Dystonia