Migraines, Seizures, Meds

[mkoven]

I've posted here about migraines as well as some weird late nite neuro episodes.

I'd been put on keppra, an antiseizure drug, as a migraine preventive. At higher doses, it made me really apathetic. At a lower dose it just killed some of my interests in things I typically enjoy, but not an overall depression.

Anyway, I'd told my migraine doc I wanted off it. I didn't think it was helping the migraines, and I wanted my enthusiasm back. She said if I could get cleared that I wasn't having anything seizure related (up in the air) I could taper off.

Well I just saw a very arrogant neuro, who thought I wasn't having seizures, but variants of sleep starts related to a sleep disorder, and could taper keppra. that was good news, but his whole demeanor and attitide were something else. that's another story.

So I've dropped down another 125mgs on keppra. I feel somewhat better mentally/emotionally, but have had some killer migraines with rather spectacular (and not in a good way) aura--spinning, numbness on my face, confusion, vision blurring (my typical aura, just worse). They are miserable, but I actually choose migraines over flattened mood. I like having my mind and personality back closer to baseline. I hope the migraines will let up once my body adjusts. It's also been superhumid here which may be contributing. He said I could stay at the lower dose for two weeks , then taper more.

Apparentky a lot of antiseizure meds (also used for migraine prevention) are mood-killers. I guess that's why some who are bipolar take them. But I'm not bipolar. If I get a burst of energy, it's not mania, it means i want to clear off the dining room table of junk mail, nothing more extreme.

So who knows what my migraines will do. But sometimes the "cure" IS worse than the disease.

Anyway, just an update.

Michele

[Rachel]

I hope your body adjusts soon to the new lower level of keppra and that the migraines lessen for you. How is the tapering going? How are the migraines?

Thinking of you,

Rachel

[kitchmill]

I take Topamax (also anti-seizure) for migraine prevention and also hate it. It didn't do enough to prevent the migraines for me, so I ended up trying acupuncture which is helping more. But what I found was that I needed to wean off of the Topamax VERY slowly to prevent more migraines from coming back. So although I hate the side effects, as long as I take it slow with each step down in dose (and know that there IS an end in sight), my migraines stay under control. Instead of going down by one dose each 2 weeks, I actually will alternate doses daily for 2 weeks and then step down to the next dose. My acupuncturist (who is also an MD) suggested this since I was getting the rebound migraines each time I stepped down.

I hope you find some relief soon. For me, the migraine pills that I took when I have a migraine had side effects that were just as bad as the migraine itself, so I really needed to find an alternate method. If you can handle the RX for the migraines when they come on, then no problem.

[mkoven]

thanks, you guys. the migraines continue. I had a doozy on Saturday. Even when the pain let up, along with the dizzies, I felt like I had the flu for the whole day.

YEsterday, no migraine! Just little waves of premigraine pain, telling me to stop what I'm doing-- i.e. staring at a computer screen, standing, keeping my head in an awkward position.

But I am starting to feel more like myself, as I come down on the keppra. I generally have more enthusiasm and interest--even if more headaches. Interesting idea about alternating taper days. And interesting about acupuncture.

I don't know what we will do about a migraine preventive. I've tried several, and just don't tolerate them. My doc wants to keep pulling from the antiseizure class, but I really hate the side effects. I don't tolerate beta-blockers, because of a history of anaphylaxis, and have had an allergic reaction to four tricyclincs. We tried a calcium-channel blocker, and it bottomed out my bp.

Cpap for apnea is helping generally, but I can still get awful migraines. As I get older and closer to menopause, they've worsened. And I have a way to go. I read over the weekend that effervescent aspirin is sometimes as effective as triptans, I may ask about that. I can't take triptans, because of the type of migraine I get with all kinds of neuro symptoms--increases chance of stroke.

[gertie]

I went thru basically the same thing with Neurontin. I was taking what is now considered a toxic dose & still had migraines & seizures. The last neuro I went to is also obnoxious. Her answer to everything from migraines, seizures, & passing out is, "don't worry about it". She has even made snide remarks about patients with "migraine personalities". I didn't ask what she mean't because I didn't want to know. I have yet to find a neuro that I didn't think was nuts.

After menopause my migraines were not everyday usually once a week so I didn't feel I needed massive doses of meds. With help of my family dr I gradually came off Neurontin. It took me several weeks. When I have a migraine then I take Neurontin as needed. I was afraid I would have more seizures but I didn't. I have much more energy & my thinking is better. Of course I don't sleep as well not being full of meds but I can live with that. I told my neuro what I was doing & she said it was fine. I'm not suggesting anyone do this but it worked better for me.

I hope you find something that works for you.