Hi, my name is Danielle, I'm a 27 year old female who suffers w/ what I call 'cluster-f***s'.... I only found out about clusters last year when a cycle started again after a 3 year remission, but I did a LOT of research on the Internet and KNEW my headaches were clusters. Last year was the first time I ever had insurance so it was the first time I ever saw a Dr. The first thing she said after I told her what the pain was like was, "I'm nor going to prescribe you any narcotics." You see, I was a herion addict in the past, but have been clean for 4 years, (3 when I saw her), and she thought I was drug seeking, and I promise, I wasnt...
She thought they were occular migraines and gave me a script for immitrex pills, which didn't work for me. Next we tried maxalt pills, again w/ no success. This was in July of '11. In the beginning of September my headaches were gone w/ out finding something that worked for them. July 28 this year my headaches came back.
I just gave birth to my second child 6 weeks ago, and thankfully he is a good baby, he sleeps alot right now, I don't know what I would do if he was colic-y while I was having a headache, thankfully it hasn't happened yet, but I know it's only a matter of time. I have an appointment w/ my dis-believing dr. tomorrow morning, to get a referral to a neurologist. I'm nervous about it though. I've been reading about different acute medications, but I am breastfeeding my son and know that I can't take any triptans... Also my insurance won't pay for an O2 tank...
I am just glad I found this website so I can talk to people who know what I'm going through, any help anyone can give me would be greatly appreciated!!

Hi, Danielle, and welcome.  As you read here, you will find many stories of providers who are reluctant to believe that a patient might know something about his/her condition.  I am pleased to hear that you are pursuing a neuro consult.  My suggestion is simple, yet often effective.  If you arrive at the visit with a written description of the symptoms and the pattern you experience, your new provider may dismiss any preconceived notions about you that may have attended the referring provider's referral. Make the statement brief, maybe just bullet points.  Everyone here will be pulling for you to make contact with someone who knows CH and will help you find some relief.

Until the silver bullet is found, listen to these folks.  They are knowledgeable and experienced. 

TJ

Hello Danniell.. and welcome to Clusterville..

About the O2.. We've all had a little problem wiht the insurance on it, but it's cheap and most of us just pay for it. The cost is minimal and the results are extreme. If you can get a script for it  - it's definitely worth the cost.

We've found out that pain meds do not work with CH at all. A vaso-constictor is what does work. Most doctors don't understand this and have to be "educated".. keep up the research and educate the doc. Imitrex is the drug of choice around here, but INJECTIONS - the pills have proved useless for most.

Trex nasal spray works for some. I've used it some with fair results, but a lot of times a can of Red Bull (at the first sign of the headache) will abort it and I don't have to take anything.

Check out Batch's vitiamin regimen.. It's working well for several (me included).

We've got about 100 years of research on this board. READ READ READ. Nothing works for everyone, but by trial and error, hopefully you will find relief and get some PF time.

Keep us informed..  :-*

Really sorry to hear this Danielle, but glad you found this site none-the-less. Like Barb D said, probably 100 years of research on this site, and a wealth of info on how to combat the Ch's as well as support from people who understand.

I can understand why your doc would say no narcotics. There isn't a painpill out there big enough to take these out to fry - only o2 and triptans which, the aforementioned will cause rebounds! But I do hope you find a way to get o2, as that has been a lifesaver for many CHeads for many, many years.

There are new discoveries on the horizon though, so we may be closer to even bigger breakthroughs in combating and winning over the CH.

Peace,
Carl D