Awitcher656

Does the caffeine keep you awake after the hit is over? That's what I'm worried about if I'm slamming caffeine at 2 in the morning. As it is right now I can usually fall sleep when it starts to come down. I just have to ride the devil for an hour or two first. Sucks, but at least I can sleep after.

My wife used to work at the clinic I go to about 4 years ago so we know a lot of people there, and I've known my doctor for probably 5 years. If I show him good information I think he will take the time to look at it. Getting an appointment is difficult because he is usually booked two weeks out. I wouldn't see anybody else at that office, it would be a waste of time.

Jon, Ive definetly noticed that staying calm and not thrashing around is helpful. I let myself get worked up sometimes and I just end up waking everyone up, smashing into things, and generally just making it worse.

Thank you guys for the information. I really appreciate all the work everyone does here to help people figure this thing out. The shocking lack of public awareness to this condition is really pretty amazing. I was shopping neurologists this week looking for the right doctor and I would ask the schedulers who they had who specialized in treating cluster headache. And of course the response every time was "well all of of our doctors can treat headaches." And I then very politely told them that was not what I asked. Finally found my way to the recommended doctors list here and found a neurologist that had confirmed positive experience with this. Of course he can't see me until the end of October. I was originally going to go to my primary who diagnosed me 4 years ago and go back on verapamil which worked pretty well for me in past cycles, but in the last year or so I have become more wary of doctors and there obscene over reliance on prescription drugs and would like to avoid them if possible. Things like oxygen and vitamins sound like a far better way to go if they work. Should I see my primary and just bring him the information he needs to get me the right treatment. Seems ridiculous that people with CH literally have to educate their own doctors in order to get appropriate treatment. When I was diagnosed initially, there was no discussion about the various methods of treatment. It was verapamil and imitrex. End of story. I guess I was lucky that my GP was able to identify it at all since he had a patient that also had CH so he was at least a little familiar with it. I have a neurology appt on October 25th, but in the mean time I should probably see my Primary and do a test for vitamin D and try to get a script for oxygen, yes? If he will do it that is. I have heard people have had problems getting GPs to prescribe it. They look at everything through the "we have a drug for that" prism. Yea, I don't like doctors very much. This was kind of a rant, but thanks for listening.

So my attacks occur almost exclusively during sleep and I wake up at about kip 7. Does oxygen still work as an abortive in this situation when the attack has already been ramped up this high.

Thanks for the info. I'm not currently taking any medications for anything. Was on ridalin for a week or two but it was useless so I discontinued. And depression anxiety medications I took in the past came with so many side affects they weren't worth the trouble so I discontinued those as well. I have heard that caffeine can work, but since my headaches are always at night and I work in the morning I am wary of doing that. Right now I usually pass out after the cluster is done kicking my ass, which is nice so i get a little bit of sleep. Do u know what oxygen costs and if insurance covers it? I have private insurance through work and it is pretty comprehensive. Also, the only trigger I am aware of is alcohol and I immediately stopped drinking when I got the first one. I smoke, but that doesn't set them off. I sometimes get an attack while I'm watching tv, but it's not consistent.

Hey guys, this is my first post here and I just wanted to say hello. I started a new cycle on September 4th. This is my fourth time through it. First one started in 2009 When I was 21. I Was diagnosed with CH maybe 4 years ago by my GP who recognized it right away. They come every other day, always at night although each cycle is a little different. Earliest was on Thursday it came at 7 pm. Those are not as bad as the sleeping ones. Last night was the worst. It started around 3, but I feel back sleep, woke up at 5:30 and it felt like my brain was bleeding. They have always been about 45 minutes to an hour, but the last few were closer to two hours and they are getting more intense. Shadow lasts most of the next day, and then the day after a have a lot of tingling during the day before the attack comes on in the evening. It was cool to see a community of people that deal with the same thing that I do. Most people I know really don't get it at all. It's impossible to explain, people get this weird look on their face when u try to talk to them about it. I think I'm one of the lucky ones though. Sounds like a lot of you have it worse than me. I haven't seen my doctor yet, but in the past I have taken verapamil and that worked pretty well. I Took imitrex once. Never again, it was awful. I've never seen a neurologist and haven't had any brain scans done. I have also been diagnosed with severe depression, generalized anxiety, social anxiety disorder, and ADHD, as well as potential Central Auditory Processing Disorder. I took some tests a while back which showed severely impaired short term memory. All that it is to say, does anyone else have similar things a long with CH, and should a see a neurologist or just continue with my GP? I gave up on therapy because they were too patronizing. Sorry that was kind of long winded. Come say hello, and thanks for listening.