Cymy Sue

This is some information on these medications I have been given by several Doctors and some experience.

I was given KLONOPIN in 1994, by my surgeon, when my disc replacements were failing and my face started to draw really bad. When I got the prescription filled, the insert said it was an anti-convulsant or anti-seizure medication. I thought there had been a mistake and called the pharmacist. He said Klonopin had been approved by the FDA for mild epileptic episodes, but like many other drugs, had been found to help other problems. Especially, muscle spasms in the facial area and it was precribed for many other conditions. He said this was termed "Off Label Practice".
Over the years, I have taken it quite a bite, due to severe muscle spasms and it works very well. I've seen several other Doctors in different specialties through the years and none of them have had a problem with me taking it. As time went on, I was told it would help the Trigeminal Neuralgia episodes and later the Tinnitus.

There are Doctors who will not prescribe it. They believe it is too addicting due to being classified as a benzodiazepine. I have read horror stories of people not being able to quit taking it. I have never had a problem stopping it, but I always took a low dose. It does help many symtoms associated with TMJD.

I was offered SKELAXIN by a couple of Doctors at different times and it didn't seem to help. My Neurotologist said that it did help many people with TMJD. He said it usually worked very well for muscle spasms of the small muscles of the face. He is very aware and knowledgeable regarding TMJD and the ear-jaw connection.
(I am probably not a good example for Muscle Relaxants. I have never gotten relief with any of them, they normally just make me feel drugged.)

A few months ago, my Neurotologist asked if I had ever tried BUTISOL (butabarbital) for the Tinnitus. I was waiting on my "Splint",(I didn't have a clue it would help the Tinnitus), so I checked in with him to see if there was anything new. He as always told me, he believed if the TMJD was treated appropriately, my ear problems would go away. He told me to try the splint a few weeks and if I didn't get any relief from the Tinnitus, we would try Butisol. I, at first didn't think I had ever heard of it. He explained it was a derivative of phenobarbital, but not as addicting or producing the terrible side effects. He said it had mild sedative and muscle relaxant properties and had been found to work very well for Tinnitus caused by muscle spasms. He said it could be addicting for some people, but he prescribed it in short term intervals and in small doses and had not seen any problems with it. This Doctor is conservative with medicine and precribes it carefully when needed by his patients.

I had such great results with my splint, I did not go back for the medicine, so I don't know how well it might work.

I realized after our conversation that I had seen butabarbital as an additive to other medicines. One that comes to mind is Pyridium Plus. The ladies of the group may be most familiar with this. (red kidney pills). A very small amount of butabarbital has been added to Pyridium Plus for a while. I've seen it added to other drugs, but I can't remember them right off hand. In very small amounts , it works wonders in conjuction with some other medicines. It certainly makes the Pyridium work better.

Since there has been a good bit of discussion about meds on the board and a couple of these in particular, I thought I would add to the information posted. Over the years, I've tried almost everything available at one time or the other.

Also, I had never heard anyone who has Tinnitus associated with TMJD mention the Butisol. I don't know if most regular ENT's would prescribe this, since they don't connect TMJD and Tinnitus. They might, I never ask.
However, I think if anyone is suffering with Tinnitus and you know it is muscle spasms related to TMJD problems, this might be something to ask about.

I'm not really sure what kind of Doctor might be willing to prescribe this other then a Neurotologist.
Mine has always been years ahead of other Doc's on information and drug therapy. If I had not gotten relief with my splint, I would have tried this medication without hesitation. I have known this Doctor for years and he is aware that I don't have problems with medicines that sometimes are considered addicting.

If anyone does decide to try it, please talk to your Doctor about any problems it might cause and get all of the information you can. Using it for Tinnitus is another "Off Label Practice" and we all need to be totally informed about what we're taking. (Butisol is normally used short term for insomnia and sometimes anxiety. Some of you may know of it in regard to these problems, I did not)


Take care all,
Cymy Sue



[This message has been edited by Cymy Sue (edited 08-26-2003).]