Anyone on Felbatol / Felbamate?

[Matthew74]

I'm increasing my dose of Felbatol, unfortunately I'm also getting up before dawn for work, trying to sleep when I get home (sometime around 11AM-2PM), and I'm really depressed. My seizures have also changed. Since I got out of the EMU I'm having a new kind of seizure, but less overall. It's hard to tell what's what. I'm having some things that could be side effects, but I can't tell because of what a wreck I am. I have never noticed side effects with Felbatol before.

What are the side effects of Felbatol that you have experienced?

 

[AlohaBird]

I don't know about that med but I do know that sleep deprivation is a recognized form of torture under The Geneva Convention.

It sounds like you need to reconfigure things so you can get some sleep on a normal circadian pattern.

That is probably easier said than done, I know, but if your sleep isn't right, nothing is going to be right in your life. It could be the meds affecting your seizures and making you feel depressed but it would be hard to sort out what is causing what until you get some sleep.

Which is what I need to go do now.

G'night.

 

[Dutch mom]

My son has been on felbamate 12 years ago. By then it was an experimental med and only used for patients with Lennox Gastaut syndrome who didn't react on many meds. Shortly after starting felbamate he got unconscious, he didn't react on anything anymore and had a mouth full of thick slime and breathing problems. We went to the ER and he was admitted in the hospital. We found out felbamate has potential lethal side effects such as aplastic anemia. There is a nasty list of potential side effects here http://www.drugs.com/sfx/felbamate-side-effects.html
We decided to stop the felbamate (his neurologist didn't agree) and decided to try the ketogenic diet instead of more meds. This appeared to be the best decision we ever made for him since the diet reduced his seizures and improved his EEG.

 

[Nakamova]

I haven't tried Felbamate myself, but dug up a few threads from the CWE archives that might be of interest. I hope you can get back on track soon.

http://www.coping-with-epilepsy.com/forums/f23/need-help-felbatol-5003/
http://www.coping-with-epilepsy.com/forums/f20/felbamate-vs-vns-help-please-14505/
http://www.coping-with-epilepsy.com/forums/f20/back-my-wonder-drug-12730/

 

[Matthew74]

My son has been on felbamate 12 years ago. By then it was an experimental med and only used for patients with Lennox Gastaut syndrome who didn't react on many meds. Shortly after starting felbamate he got unconscious, he didn't react on anything anymore and had a mouth full of thick slime and breathing problems. We went to the ER and he was admitted in the hospital. We found out felbamate has potential lethal side effects such as aplastic anemia. There is a nasty list of potential side effects here http://www.drugs.com/sfx/felbamate-side-effects.html
We decided to stop the felbamate (his neurologist didn't agree) and decided to try the ketogenic diet instead of more meds. This appeared to be the best decision we ever made for him since the diet reduced his seizures and improved his EEG.

I was put on Felbatol in 1994-5. I was almost off Tegretol, and felt the best of my life. I got the letter about it, freaked out, and took myself off meds completely because I couldn't face going back on Tegretol. I had some nasty seizures.

I tried the Ketogenic diet last fall, but my doctor and nutritionist didn't give me adequate supervision or assistance. It worked great, but I got sick, probably from inadequate nutrition. My hospital has a pediatric program, but not an adult program. It's a shame it's not used more. I am a fan, but it didn't work out for me. I really had no help whatsoever. Eventually I got to see the pediatric dietician, but it was too late...

I only got back on Felbatol by hounding one epileptologist, who wouldn't increase my dose. Then I got help from another, and we are bringing it up. It's helping, but I'm in a lot worse shape than I was in 1994. My life might have been very different if I hadn't freaked out and quit.

I looked into it and Felbatol is not as dangerous as they make it out to be. They make you think that if you take the stuff you are playing russian roulette. Yes, your chances of Aplastic Anemia and Liver Failure are greater, but you are not likely to get either to begin with. There have only been a small handful of AE cases in all the years people have been taking it. Almost all of them were in the initial group, and most of those were at high risk to begin with.

Thanks for the links Nakamova.

Aloha Bird, I hope the test goes well and that you have some seizures recorded, but they aren't bad. I was so happy being in the hospital and having someone take care of me for once, that my blood pressure went down 20 points.

 

[masterjen]

Hi, Matthew;
You mention that you BP went down 20 points when you were in the hospital. Is your blood pressure generally high or high normal? If so, then perhaps stress is a seizure trigger for you. I know from your past threads that finding a place to live and a job have been challenges for you and of course these issues would be stressful for anyone, but I hope you are doing what you can to control your stress levels. What this might be is different for everyone. For some it might be boxing to take out frustrations, swimming or other cardio, weight lifting, relaxing in a sauna, etc. etc. So explore your options and find what works for you. You may find that relaxation=less stress=fewer seizures=motivation to fight for what you need=better control over your life situation=lower blood pressure=better sense of well-being. Wishing you the best!

 

[Matthew74]

Thanks Jen! I'm doing my best. At least I'm not in Red Wing. That was like a nightmare! I'm still traumatized by the whole back thing. I really need a home and a family, but I'd settle temporarily for a comfortable job!

 

[Cint]

I, too, was put on Felbatol back when it was first on market in the early 90's. I could not tolerate that miserable medication. It gave me a consistent migraine headache, not just a dull headache, but a real migraine HEADACHE that wouldn't go away. I called my epiletologist and told her I was stopping the drug. Within a few days after completely getting the drug out of my system, the headache was gone.

And like many other AEDs, Felbatol can/does cause suicidal ideation. I didn't experience that one with Felbatol, but other AEDs have done that to me.

What are the most serious side effects of Felbamate?
On July 10, 2008, an advisory panel was convened by the Food and Drug Administration (FDA) to review data that the FDA had previously collected from drug studies showing an association between many of the antiepileptic drugs (AEDs) and suicidal ideation and behavior, which together are called suicidality. According to the FDA’s Alert, among the patients with epilepsy in these drug studies, 1 out of 1000 people taking the placebo (inactive substance) showed suicidality compared to approximately 3.5 out of 1000 people who took an AED.

Taking antiepileptic medicines may increase the risk of having suicidal thoughts or actions;
~Do not make any changes to the medication regimen without first talking with the responsible healthcare professional;
~Pay close attention to any day-to-day changes in mood, behavior and actions.
~These changes can happen very quickly so it is important to be mindful of any sudden differences.

Be aware of common warning signs that might be a signal for risk of suicide.
Some of these are:
-Talking or thinking about wanting to hurt yourself or end your life
-Withdrawing from friends and family
- Becoming depressed or having your depression get worse
-Becoming preoccupied with death and dying
- Giving away prized possessions
We again urge patients and families to contact their doctor before stopping an epilepsy medication because this may possibly lead to seizures and worsening of mood.

 

[Matthew74]

I've been getting headaches, but I think they're postictal with the seizures. I've been more depressed, but that could just be happening. My physical condition is going downhill, but I'm sure that's the work, especially now that I'm getting up before dawn.

For the next couple weeks I am scheduled to work without any days off (not my choice). I don't know why I can't get someone to hire me for something suitable.