Migraine

I've been on 20 mg namenda since the middle of February. (so 2 1/2 months) So far I can't tell if it's helping or whether the lifestyle changes I've been doing is helping more. I am having about the same number of migraines but they aren't as intense and they don't seem to be lasting as long. The last 3 day migraine I had was March 20th so I've gone over a month without a major 3 day migraine. That's improvement. But I'm also sleeping more, minimizing exposure to fluorescent lights, minimizing the amount of time in direct sunlight, and staying away from citrus (which is turning out to be a major trigger. I want to talk to my doctor about going up to 30 mg to see if that makes a difference. Glad to hear it's helping Diana and Heather. Thanks for the update.

I'll definitely keep you guys updated on my status. I hope the improvements keep coming along for you guys.

Diana

Figured I would put my update here too. I had no relief at 20 mg, but started having slight symptoms. My migraines were still daily and increasing in severity. My doc tried to up it to 30mg. I tried that for 2 days. I felt like I was in a TOTAL stupor. I felt dizzy and disoriented, weak, and basically like I was very drunk!

I lowered it back down to 20, then back to 10, with no change in my migraines. Finally we went right off it, and it had been making NO difference good or bad for my migraines. I figured whats the point of paying so much for a med that didnt help yet didnt hurt.So no new refills, im totally off it. So we have since upped my Depekote, which has finally gotten me mostly out of the daily migraines I have had for a month and half. Now Im down to about 3 a week.

Hope It kkeeps working for yall though!

Tawsha

I'm not sure what to think now. I went about 11 days with no migraines, then they were back full force and as bad as ever. Perhaps it was just a fluke. I'm hoping it is a streak I can recreate by continuing to get weekly massages, taking my meds, eating well, and getting out for walks as much as possible. It's hard not to be down about the streak ending, though. I feel so silly, but I had these fantasies that maybe I was finally going to be turning a corner. It's hard to keep hoping and not have anything change for the better.

Diana

Sorry to hear it, Diana. It IS really awful when a good streak ends. I always find I'm in a bit of denial and don't want to believe my head is really hurting--and if it is really hurting, that it's actually a migraine. But since I rarely have head pain other than migraine, there's not much else it's likely to be in my case.

Has anyone else had weight gain or shortness of breath on namenda? Recently I 've been having this feeling like something heavy is on my chest. I get winded real easy all of a sudden and have gained 20 pounds in 3 months. I also get coughing spasms and I haven't had a cold/flu or anything. I am also on bisoprolol and have been for two years so I don't think that is causing the problem although I suppose it could be. I went to the web page to see what the side effects are and the heavy chest/shortness of breath thing is one but it doesn't mention weight gain or coughing. I will have to talk to my doctor about it.

I haven't experienced either of those side effects while on Namenda, but I usually tend to lose my appetite and lose weight as a result of meds rather than the opposite.

That shortness of breath definitely doesn't sound good. I hope your doctor can suggest something to help with or at least explain that.

Thanks for sharing your experiences with Namenda. My nero gave me a sample pack of this drug, but said not to take it until I do some research and we talk more about it at my next visit.

I am a little apprehensive about it. I read that it was on the market for alheizmers, but I suppose its now off label use for migriane?

I had to wean off namenda last week. The heaviness in my chest was getting really bad and I was getting winded with very little effort. I've been off it a week and the heaviness has completely gone away. It's frustrating. So right now I'm on nothing preventatively, just my triptans as needed. I'm sure my doctor will want to try something new when I go in in June. But until now, namenda is not for me. Good luck to everyone else.

quote:

Originally posted by hearts:
I read that it was on the market for alheizmers, but I suppose its now off label use for migriane?

You're correct. It's FDA approved for alzheimers, but is being used off label, experimentally for migraine prevention.

A recently released study seems to indicate that people are having success with it for migraine prevention, so it might be a good option for you if you feel comfortable with the possible side effects.

I personally haven't experienced any, but some people do and everyone is different.

I'm sorry to hear it didn't work out for you Hoopsky. Sounds like you're definitely right to move on from it, though. That is a scary side effect!

I'm moving up to 40 mg this week. I just saw my doctor last week, and he feels comfortable continuing to bump it up so we can know for sure whether it is or is not a viable option for me. I'm not ready to jump ship either, so I was glad he saw things the same way.

As always, I'll keep you guys posted.

Diana

I too have started going off Namenda. After 3 months, there was no reduction in my migraines and the side effects were too much. I was never able to get past the morning fog it put me in. I wasn't able to concentrate enough to drive until early afternoon. Plus I was having some weird vision side effects. So now I am down to 10mg/day until I can see my neuro next month.

I haven't updated for a while, so I thought I'd check in with my Namenda buddies. Assuming anyone else is still using it!

I'm up to 60 mg now. Not sure what to think. I think it could be having a small positive impact when combined with the helpfulness of the supplements I've started taking (Magnesium, B2, CoQ10, Taurine and Huperzine A) and the Ketamine nasal spray. But it's definitely not been any kind of monumental change. Still, the side effects have been non-existent, so I'm sticking with it and continuing to take a higher dose for the foreseeable future.

I spoke with someone in the Live Journal Migraines community who is on 200 mg and getting benefits, so I'm willing to take it up that high, over time, and see if I might see improvement, too.

Diana