Migraine Med Update

[mkoven]

Just wanted to let you all know the new migraine preventive. I'm switching from keppra to zonegran-- another antiseizure drug. I'm still on a half pill of plavix.

My head pain hasn't been too bad, but as usual the neuro symptoms are kicking my rear. Vertigo, nausea, and the feeling that one eye is very cold and achey-- with a mild headache. And I get unbearably chilled. My hypotension has also been worse with these, which makes me think the migraines and ncs are all part of the same ans mess. Since these are supposedly basilar migraines, I suppose that makes sense???

[mkoven]

Okay, this sounds nuts, but after last night's dose of the new drug, I'm completely unable to think straight. I'm supposed to be grading tests, and I can't process what I'm reading, and I can't trust myself to do the simple arithmetic involved in assigning grades. Am I crazy and non-compliant not to want to take another dose? This is not a symptom I've ever experienced before, so it's got to be the drug.

It's related to topamax, that I believe causes some cognitive problems in some people.

Anyone else on an anti-seizure drug with effects like this? How soon did they start?

I don't want to be labeled "non-compliant," but I can't tolerate this.

I'm just so frustrated trying to find a migraine preventive I can tolerate. Right now, I just feel like throwing all pills out the window. I hate being so hypersensitive to drugs, but I really seem to be.

I don't want to alienate my new doctor, who I know is trying to help. But is it reasonable to refuse to take another dose? I think I'd have to just take time off work if I stay like this, and I'm not ready to do that.

[flop]

Hi,

I don't know anything about zonegran but is it possible for you to take a smaller dose of the med? Sometimes we POTSies need tiny doses to get good effects. I have found that with some side-effects, dropping the dose to a tiny amount and putting up with side-effects means that your body can get used to the med and then allow you to gradually increase the dose without feeling totally spaced out.

When I started my SSRI I vowed never to take a second dose but a doc that I saw the very next day persuaded my to take 1/4 of the dose. I felt really weired for about a week but now I have been on the full dose for over 18 months and can feel the benefits.

It's worth talking to your doctor or pharmacist before giving up on another med.

Good luck - you'll find the rigth med/dose combo eventually!

Flop

[mkoven]

Thanks, Flop!

I wish I could split the pill. Unfortunately, I was given the smallest dose- 25 mgs- and it comes in capsules, not tablets- so I don't think I can split it, without getting some hard-to-determine amount of powder all over the place.

I really can't see taking another round of this stuff tonight. I have numerous deadlines that require a functioning brain. I hate it when the "cure is worse than the disease." i don't want to be a bad patient, but if I don't hear back from the doctor's office, the personal cost to me of being compliant is too high. I would seriously have to cancel my classes if I remain in this state.

[yogini]

Talk to your doc- maybe it makes sense to stop the med and restart it at a better time in your schedule. Many of us feel an increase in symptoms when trying a new med - often this calms down after a few days or weeks. You'll see a lot of posts on this as it relates to some of the more common POTS meds, such as birth control or SSRIs, but I have found it to be true in general. I think we have to take meds for longer than regular people to figure out whether they're working or hurting...

[mkoven]

i tried taking a half-capsule last night. It was better, but I still struggle to do basic arithmetic. I'm normally able to do basic addition and multiplication without too much effort! Once the drug wears off entirely, I'll have to go back through to make sure I added up points on students tests correctly!!

I emailed the doc and told them. If this is a side effect that would eventually subside, perhaps i can start again once the semester is over. I have too much to get done that requires my full brain right now.

If these are side effects that would linger, then we need another drug.

[flop]

It may be worth asking a pharmacist if the med comes in a liquid form (I can't seem to find one on the internet). If not ask if it is ok to mix the powder out of the capsules with water - if it is allowed then you could use a syringe to mix the powder with a certain volume of water then measure half or a quater of the dose from measuring the mixed liquid (easier than trying to measure powder). However you must ask a pharmacist's advice on opening the capsules in case they are some sort of special release or something.

Flop

[mkoven]

Heard back from the doc. No more zonegran. (I'd asked if the cognitive side effects would go away. and there response was to take me off-- so I guess there's an implicit response?). i'd been okay on keppra until we got me over 250. so back on 250 keppra until I see her. by then i will have had my follow up with sleep doc. maybe apnea treatment will help migraines? I wish i weren't so hard to medicate. I'm like the princess and the pea.

With all the back and forth on the meds, I had some odd neuro symptoms last night as I was falling asleep. A weird sensation swept over me. tingly leg. pit in stomach. feeling like i couldn't move and yet that i was going to twitch. not sure if this was some sort of aura of a mini-seizure??? I got up and took a tiny dose of klonopin. I was prescribed it for migraine associated vertigo, but had heard it can help this sort of thing. (even with the klonopin, I need a quarter to an eighth of the normal dose.)

Also when I reported that I've been getting strange metallic tastes in my mouth that make everything taste bitter, the doc said that sounded more like seizure than migraine aura?