ClusterHead1980

My husband drew a picture of cluster pain a while back...I think it's kind of cool! Pain

I'm a female, 33 years old, and I've been diagnosed with cluster headaches that are timed to my menstrual cycle. They started about two years ago and occur 6 days out of every month between 8pm-10pm for anywhere between 20mins-2 hours. I have migraines as well, but they are very well controlled and no longer bother me or effect my quality of life like they did when they first started. Untreated I have 2-4 migraines per week, but I am currently on a medication called Propanolol, which is a blood pressure medication, on this treatment I only have a migraine once every two weeks or so, and I can abort those almost completely with Imitrex tablets.

I have had 2 children and it is true, I would much rather go through childbirth again than have to deal with clusters. Mine are right sided and centered right behind my eyeball, and it is the most intense, sharp, focused pain I have ever felt - it literally induces me into a state of panic, even though I know what is happening. My eyelid on that side droops down and my eye and nose water horribly. I've dealt with them for two years and it still terrifies me EVERY single time it happens. My spouse is extremely supportive as well, which makes a world of difference. I thought I was going to die the first time I experienced a cluster and was in the hospital every night for a week thinking I was never going to make it out of there alive, he is the only thing that kept me calm and grounded.

At first my GP did not know what the headaches were, so I went to a neurologist that specialized in headaches and he knew exactly what it was right away. He prescribed Imitrex injections and oxygen to treat the clusters and that combination seems to work the best as an abortive. I pay around $120USD/month for the injections and I refill my oxygen tank every month for about $45. That is all after my insurance pays its portion.

For preventatives I have tried Verapamil and Prednisone, but stopped those due to some nasty side effects.

The best treatment I have found is Vitamin D and Melatonin. I take 5,000iu Vitamin D3/day (10,000iu/day the week before my cycle) with 500mg of Calcium, and then 9mg (three 3mg sublingual tablets) Melatonin before bed every night. I was deficient in Vitamin D and have regular bloodwork done to check my serum levels, but this seems to work the best out of everything I have tried in terms of lowering the intensity of the cycle.

Best of luck to you in dealing with these monsters!

Of course you can save it :)

That is so true. I tried a tri-cyclic antidepressant and Topamax before the Propanolol, and neither of those helped me at all - my Mom got great results with Topamax. Propanolol was a life changer for me, it was like someone lifted a ton of weight off of me and I was so relieved and happy because after a while, it feels like nothing is going to work and you're just going to have to cope with it forever. It took about a month for the Propanolol to start noticeably impacting the headaches, but once I was on the full strength dosage (I had to step up slowly because I have naturally LOW blood pressure) it was like night and day, I felt that they were finally controlled and I wasn't living my life waiting for the next migraine.

I really hope you can find something that works...it really does makes all the difference in the world.