Hi everyone! I'm Sarah, and have suffered from chronic cluster headaches for, wow... 16 years. Wow, didn't realize how long it's been. took a long time to get a dr to admit that I was really suffering from clusters... because I'm female. I hadn't had a bout pain free time in over 10 years, except for the nights i drank myself stupid, until 3 years ago. I finally conviced my neurologist, to check my symptoms, do some research and let me know if I was wrong. He finally diagnosed me. It was such a relief to finally have someone on my side, helping me with what I was going through. my wonderful hubby, helps me a ton getting through them, but doesn't understand exactly how bad it is. The clusters started in 97, shortly after I lost my son. I was only 18, and it was already a hard time in my life. When they started, I didn't have a clue what was going on, but they came night and day.... I took a ton of ibuprofin, aspirin, tylenol trying to keep them at bay, nothing worked. I'm honestly surprised I didn't have kidney or liver failure lol. About 7 years ago, a friend of mine brought in a thing she had printed off about headaches. There were 4 main kinds, the more I read, the more clusters started making sense. I had had numerous MRI's and other xrays/scans, and dr's weren't helping me. I didn't have insurance, so I just lived with them. They got worse, being triggered by anything. Being too hot, having a beer, walking out of a movie.... it was terrible. I started using drugs, just to stay awake (they were worse at night). I got pregnant almost 6 years ago, and got medicaid for a short time. Having the headaches scared me so bad, being pregnant. My dr told me to go to a neurologist while I was covered, to try and get them under control. One visit, and things started getting better. He couldn't prescribe meds because of my pregnancy, but said they should lessen, because of the hormone levels. shortly, they did. It was the first time in 10 years I had a remission period. It was overwhelming! Shortly after my daughter was born, they came back... I was heart broken. A newborn, and my headaches... I wanted to die. I went back to my neurologist, who told me he still wasn't convinced they were actually clusters, because they are very rare in woman. Still, he prescribed verapimil and amitriptaline, with a weekly dose of prednizone to boost the remission. It worked! I couldn't believe it! Everything was awesome. It wasn't discussed however, that I was supposed to keep taking them, forever basically, so I had went off the meds and within a year, they returned. Paniced, I went back. He informed me i'm not to quit taking them, unless I was to get pregnant. shortly after, I was pregnant with baby number 2. I had to go off my meds and in 6 month, they returned. Dr didn't believe, rare in woman, even more rare during pregnancy... so he put me on a lighter dose of verapimil til she was born, then back on full dose of both. About 3 months ago, they came back, even tho I was still taking my meds. Couldn't afford a visit, so have been dealing with them. I went to see dr 2 weeks ago, and have been on a double dose of verap and amitrip, plus double doses of the steroids to try and kick them into remission. The CH seem to be worse this go around... I didn't think that was possible, but they are so bad... A few days ago, told hubby I didn't think there were people out there suffering the same way I am. I have asked my dr's, if they know of anyone else that has them, all of them don't know of anyone. I went to a clinic 50 miles from here, to have a backup, incase I can't see neurologist, and my first meeting was strange... When the nurse found out I was there for CH's, she went out and got the dr, who got another dr, another nurse and 2 pharmacists to come into my room. I felt like a teacher reading to her class, all of them staring at me, fascinated by my tale. They had read about CH's, but had never met anyone suffering from them. The people I work with don't understand either. When my hubby or I talk about my headaches, they respond with "oh yea, I have migraines too. Oh, you don't have migraines, they must not be that bad" I'm tired of people not getting it, which brings us up to date. I am so happy to have found others like me! I'm so sorry you, or someone you love is going through this... but I cried hysterically, just reading a few stories from all of you, knowing that someone truly understands what i'm going through... Thank you all so much for being out there!!!!

Thnk you! And I thank god for him everyday. I don't know how many nights he's been up with me, trying to help. Getting ice packs, running baths, rubbing neck/temples. He's such a great help. He's so far, the only one who even kind of knows what I go through. Adore him! And am so glad to have found a place full of people that understand!

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sarah,

Glad to see your with us... Had these Damn things over 20 years now...

I have made them very bearable, pretty much living a pain free life right now. If you glance to your left you will see the link to clusterbusters. It would be in your interest to take a read.

Best.
Coach Bill

Sarah, you do need a prescription for medical O2 and that can be helpful if your insurance helps pay for it. On the other hand, even without a prescription you can use welder's O2 (it's the same O2) but you need a slightly different set up. How to set one up using welder's O2 has been covered here quite a bit. You could search and find the threads. Given you've received little help from your docs I would encourage you to find one who is familiar with CHs. Also, read here on alternatives for a long term preventative, an intermediate preventative (like prednisone), and a choice of abortives. Make your list and bring it with you to your next appointment. You are and must be your own best and well informed advocate. Don't wait for the docs! God bless. lance

Hi joe I live in montana, near missoula. And I've been searching for others with this, disease... so far, none have come up. None of my dr's know of anyone else in the area with CH's. That's why I went searching for a support group. I have no insurance, thanks obamacare, so its been difficult getting on the right meds etc. I have not found anyone in the area, including my neurologist, that knows more about CH than I do. even the meds im on now, I suggested. So I appreciate all the info you all are giving