HI - I do have both epilepsy and fibromyalgia and perhaps I understand better than others, how hard it is to have both epilepsy and fibromyalgia, and to have to choose between pain and seizures. I hope any of this helps you, even if it is only encouragement.
Also, I wouldn't take Neurontin if you paid me! It totally destroys your memory AND makes you fat and who wants that?!?
First, PLEASE DO WHATEVER IT TAKES TO STOP THE SEIZURES. Please remember that each and every seizure causes more brain damage, each seizure is potentially FATAL, and there are other options for pain control. There are times when I have had to take narcotics in the past for the fibro, and no, it wasn't ideal, but it was better than seizures. If you are aware of the risks, you can plan to taper off slowly as you change to other meds - that is what I did and it worked well for me.
Personally, now I take Paxil for my fbromyalgia - and have for 11 years because it actually works. It doesn't help 100%, but it helps enough that I can get along with gentle exercise, a hot tub, and occasional Skelaxin (a non-sedating muscle relaxant) and Ibuprofen. Personally, after years and years of horrible constant Fibromyalgia pain, I am THRILLED that all this works so well. I also got a treadmill and my dh made a treadmill desk to sit on it and hold my computer. If I walk slowly an hour or so a day, my pain levels go way down. Of course, I have to have a flat screen computer to avoid seizures, but that purchase was well worth every penny.
I also have a VNS implant, and I will probably get an RNS implant as soon as they are no longer in clinical trials. If I were you, I would seriously consider RNS clinical trials for your seizures because they are having awesome results with the RNS implant. RNS is a Responsive Nerve Stimulator, and works to zap the seizure before it happens - cool, no? I can't remember the web address, but probably if you google it you will find it.
Now, as for your pain control - I don't know what will help you, but I do know that there are still a lot of options out there, and that you may need to switch neuro's to find one who is more amenable to helping you. I have recently read about Gabapentin and Pregabalin - here is a paste:
Gabapentin and pregabalin inhibit Ca2+ currents via high-voltage-activated channels containing the α2δ-1 subunit, reducing neurotransmitter release and attenuating the postsynaptic excitability. They are antiepileptic drugs successfully used also for the chronic pain treatment. A large number of clinical trials indicate that gabapentin and pregabalin could be effective as postoperative analgesics. I also found that the VNS helped me with the pain control, which was a big, but very pleasant surprise.
There are more options, I just don't know them all. For me, I had to be less depressed to even be able to use the treadmill desk, but then it was a snowball effect - the more I exercised, the less pain I had, the more I exercised, the less pain, and less depressed I felt. I feel best if I walk on the treadmill for several hours a day - again at a slow, slow pace so I can still read the computer screen and not exhaust myself (and trigger seizures)
Blessings and I hope that any of this might help you,
genghiskim (my name is actually Barbara Kim, but I am trying to feel like a more powerful woman, so I thought I would change to Genghis for a while and see if that helps!)
