Daily Cluster Headaches/Migraines

Hi everyone. I'm new to this forum.

I've been diagnosed with cluster headaches/migraines. They started in September 2006, and are quite strong. I get them on a daily basis, and very few rescue drugs work on them -- the triptans either don't work or make them worse (imitrex made me scream), so the only one that's been effective so far is migranal. After trying out all other options for about 3 months with zero success, I was put on 75 mg of topamax. It was effective for about 2 months, and then my headaches came back, just as strong as before. My neurologist upped my dosage, first to 100mg, and now to 150mg. It seems to be kicking back in, though I'm of course forgetting words again, and I'm back to being tired.

I don't mind the side effects of the topamax -- they're 1000 times better than the migraines, since I have those every day otherwise and cannot function. But frankly, I'm freaked out. I know my doctors were hoping originally that the cycle of headaches would break with the topamax, and they didn't. These headaches aren't going anywhere. They're going to be a problem for me when I want to conceive, because I have to go off all medication. And honestly, I'm not convinced that the topamax is going to work for the long term... I have a feeling that I'm going to have to go in another direction.

I guess I just feel out of control with my health right now. I'm not able to have a social life because I'm in too much pain. I have my own business, but it really affects my work. It affects my relationship with my husband. I just don't feel like myself, and I hate that.

That's all. Just wanted to vent. If anyone has any advice to share, please feel free.

Thanks. =)

Nicole

Hi Nicole,
Sorry to hear about your migraines. I have had a bad case myself since late Oct last year. I tried Topomax myself. I started at 25mg and ended up at 200 mg. until I gave up. hated it. I did not seem to be getting any better and decided to stop without the doc consent. I actually switch docs and neuro. since I did not feel that my old neuro was helping out my pain. He switch me about 5 dif meds from imitrex,zomig and honestly I can't even remember the other three. I was switch almost every 4-5 days since my case was very bad. I was rushed to the hospital once and was given a shot. boy that really helped the pain that day. Anyways three days ago I was given Butlbtl/apap/caff which is generic for foricet. since the migraines have started up again. I will be calling my neuro tomorrow morng. since it does not seem to be helping much. I happen to start my menstrual and I thought maybe the pain worsen from it. but now i have been constipated for the last two days. and have had pain in my stomach. at first I thought they were cramps but with my period done, I have no idea what it can be. I really do not know what is going on.
One thing that I did get from the meds is that I got a very dark stain on my palm by my thumb and index finger. Just now it is clearing up. The doc said since I tried many meds he would not be able to point on where it came from exactly. so keep and eye out for any skin discoloration.
My migraines come and go for the last 5 months now. but they seem to be getting worse during menstraul time how are yours? do you see a change during?
I am new at this site and I am glad that I can now share with some one who suffers from the same. If you have any ?'s feel free to send me msgs. I will try and responsd asap.
take care and hope to hear from you...

_BAM2007