By Silvia on Wednesday, January 30, 2002 - 06:45 am:

Hi Everybody,

I would just like to share a personal experience I've had with some pain medications, in hopes of preventing anybody to go through what I'm going through.

I've been dealing with a neurological disorder known as myoclonus. This means I get involuntary muscle movements. They feel like trembling sensations or twitches in different muscles in my body. The one symptom that bothers me the most is palatal myoclonus. This causes me to get muscles spasms in the roof of my mouth 24 hours a day/seven days a week. It's nonstop, and only lessens when I speak or eat. I have been dealing with this for about 7 months and in addition to the pain I deal with HMS, it is really making things difficult for me. The spasms make it hard to sleep sometimes and the ones I get in my legs cause me to get muscular pain. Prior to this I was only dealing with the pain in my joints.

Anyhow, about the pain meidications. Well I was given Oxycontin earlier last year and took it for about 2-3 months. After a while I started experiencieng trembling sensations in my legs and back. They were very mild at the time and my doctors told me they were just muscle spasms. Eventually I started getting other strange symptoms in my diaphragm that would cause me to gag for no reason. At this point the doctors told me it was unusual but didn't make a big deal about it. I guess they thought it was stress or that it was all in my head.

I looked up the side effects for Oxycontin but didn't come across anything like this. Anyhow, after about 2 months on it I decided to stop taking it, and was given Ultram instead. The trembling sensations continued and then I started experiencing a "clicking" sound in my right ear. I went to an ENT doctor who diagnosed me with palatal myoclonus. Afterwards I went to see a neurologist and asked him if it was possible that the Oxycontin I had taken could have caused this. He said no. He ordered a brain MRI and thank God it came back normal. However, the spasms in my mouth kept getting worse and my neurologist gave me 2 different anti-seizure medications but they really didn't help. I'm going to try botox injections in my mouth next, hopefully that will alleviate the palate spasms.

Anyhow, I have been doing a lot of research on myoclonus since getting diagnosed. I have been to many internet sites on myoclonus but never came across any articles stating anything about pain medications causing myoclonus. Therefore, I thought I had nothing to worry about regarding the pain medications I had been taking.

Last week, thank God, I decided to do a search on myoclonus AND oxycontin together, and was amazed about all the articles I found. I came across many articles written my medical professionals stating that pain medications, opiates, can cause myoclonus. They mentioned Oxycontin and also Ultram among others. I stopped the Oxycontin back in April but was given Ultram to take on an as needed basis. I was taking the Ultram only when the pain would get very bad. (I have never really liked taking drugs) And even when my pain ordeal started, I was in pain for about 6 months prior to taking Oxycontin. Prior to this they had given me Percocet but I hardly ever took it. But when I finally ended up at the pain clinic, the first thing they gave me was Oxycontin. I asked the doctor about it and told her how I didn't like taking strong pain killers. But she reassured me and said it hardly had any side effects and that she strongly thought it would give me a better quality of life. At this point I couldn't even sit down for long due to chronic hip and sacroiliac joint pain. Anyhow, I didn't even start taking it till about 2 weeks after getting the prescription. My primary care doctor really wanted me to take something because I was loosing a lot of sleep and weight. So I started taking it.

Anyhow, I've been doing Prolotherapy for a while now and it has really helped with the pain. But when I've been getting the treatments the doctor uses Demerol for anesthesia, since I get a lot of shots. Well, I came across an article that Demerol can also cause myoclonus. Since stopping the Oxycontin I have had 7 prolotherapy treatments, and 6 times I have been give Demerol via and IV. So now I think the Demerol might have contributed to the worsening of the symptoms.

Now I wish I had known back then about these possible side effects. In my search I also came across a neurology message board where several people posted messages stating they had developed myoclonus after taking pain pills. Another medication that was mentioned might cause myoclonus were anti-depressants such as SSRIs. And one of the girls on the message board said she thought her myoclonus was a result of taking St. Johns Wort.

I just wish I would have known about this earlier and I would have stopped taking these narcotic pills. Even though I'm doing better pain wise for the HMS, now I'm dealing with this neurological disorder that causes me distress all day long. And with my leg and back muscles twitching, now I'm dealing with muscular pain because of that. I never had muscular pain due to the HMS, it was mostly only in my joints.

Anyway, I'm only writing this to let you know about my personal experience; not to scare you off from pain medications. I just want you to be aware that these symptoms may be caused by them, just in case any of you ever start experiencing something similar. And if any of you had anything similar happen to you, I would like to hear about it.


thanks,
Silvia

By Silvia on Wednesday, March 13, 2002 - 05:59 am:

Hi,

I recently found out that it's not the pain medications that have been causing me problems. It's certain drugs that were used along with Demerol for anesthesia. These drugs are Compazine and Phenergan. They are know to possibly cause a condition know as Tardive Dyskinesia. When I found out about this I researched the side effects of Compazine and ALL of they symptoms I have experienced were listed as possible compazine side effects. In researching Tardive Dyskinesia I have also come to find out that my symptoms suggest this is what I am experiencing.

Just wanted to let you know.