Daily Cluster Headaches/Migraines

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New Member

Date Joined Mar 2007
Total Posts : 1
   Posted 3/20/2007 11:12 AM (GMT -6)   
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. =)


Veteran Member

Date Joined Jan 2006
Total Posts : 1308
   Posted 3/20/2007 2:24 PM (GMT -6)   
Hi Nicole,

Welcome to Healing Well. Sorry to hear that you are suffering. Just to be clear, are you saying you have been diagnosed with Cluster Headache and Migraine? Have you tried Oxygen as an abortive for your Cluster Headache?

Topamax can be given as a preventative for both Migraine and Cluster Headache. I share your dislike of it myself as it makes me feel tired too, and I do not like the cognitive side effects like forgetting stuff etc!!! I feel like a part of me is missing lol!!

You say Imitrex makes you scream, which I am sorry to hear, is that the tablets or the injections? What happens? I am asking this as the Migrinal works in a similar way!

Please feel free to vent anytime you like that is what we are here for! And to support you of course!

take care

Co-Moderator of the Migraine/Headache Forum

New Member

Date Joined Mar 2007
Total Posts : 10
   Posted 3/21/2007 12:21 AM (GMT -6)   
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...


New Member

Date Joined Mar 2007
Total Posts : 3
   Posted 3/28/2007 8:38 PM (GMT -6)   

I total understand what you are facing.  I'm 28 and never had headaches until about 1.5yrs ago.  I though I was going crazy.  I tried all the OTC drugs then went to my PCP for help.  After several meds and 2 doctors I decided I had a real problem.  I started looking for someone who specialized in headaches.  I am lucky to live in Houston and have some great resources at hand.  I ended up with a top specialist who let me know what I was feeling was a chronic daily migraine.  He let me know it may never go away or may come and go in and out of remission.  I have been on topomax with the same problems you are having.  It would work and then fade.  I ended up at 800mg...but the side effects were too bad to keep it up.  I had to take a medical leave from work to go cold turkey off the topomax.  Once "clean" I started on Depakote.  For me it has been awesome.  It keeps me feeling like normal about 3 weeks a month.  The only side effects it leaves behind are problems with speech and some weight gain.  One thing I can tell you is my Doc always gives me hope.  He tells me that this is not easy to treat but there are always new drugs that can help.  I am going to try Cymbalta (sp?) next.  There are even implants that help some and injections that help others.  The only regret I have is deciding to wait to have children.  I never considered that my health would be an issue.  I'm not sure I can stand to get off these meds to have a baby.  I am considering adopting but would like to experience being pregnant.  For now I try to stay focused on the positive and say a "thank you" everyday for some relief.

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