ThatHurtsMyHead

I get several weeks of VERY vivid dreams a few weeks before my CH comes back. Bad dreams, like pretty terrible stuff. Always first person. When I'm PF, I either don't remember my dreams or have normal dreams. I've spoken with a few others that have a similar experience with their CH. J

Sadly Verapamil while likely one of the most prescribed drugs for CH, has terrible efficacy. Through data compilation of Dr's Halpern (etc) Verapamil has shown to have about a 5 percent efficacy. I'd suspect diet and a simple termination of peoples cycles are more the cause and not the Verapamil itself. The first year I tried it, I thought it was a miracle drug. The second year it didn't work at all and instead It gave me heart palpitations (PVC's). Glad it's doing good for you. J

JohnCluster, Sorry to hear you're back in the throws of the beast. A low tyramine diet should definitely help reduce your attack frequency and intensity. Busing is definitely the best cycle terminator around. PFW, J

JohnCluster, Sounds like you're going about it the right way. Try one thing, then another. Keep good notes. On Tyramine: It's the chemical created when food breaks down. Anything fermented is high in tyramine, alcohol, fermented cheese, aged and preserved meats etc. A person could eat a really... really fresh steak and be just fine, but have one that's close to it's expiration date and it'll be high in tyramine and would be a trigger. Bananas are the same. Eat them when they're almost green and all's ok. Eat banana bread and watch out... I think that's why some people find some odd foods are triggers, but the same food isn't a trigger for another person. It's more about the age of the food, not necessarily what it is. But again, anything that's fermented or aged, is going to be high on the trigger list. Cheers, J

SwiftLaw must be a sailor. I don't think anyone else would get that. ha ha... Always Reef Early. That, and make sure you watch the wind direction. Never had an accidental jib, and don't want one either. (ok sorry, I'll get back on the thread subject, ha ha) J

JohnCluster, I don't mean to be a downer, but it sounds like your cycle just came back, regardless of diet. I can say diet can make a positive impact to reducing the severity and frequency of attacks. (Staying away from any foods with tyramine in them). If you look at any common trigger list, you'll see the worst triggers are always the highest in tyramine. Tyramine being a trigger for individual attacks, but not a trigger for the core cause of our condition. It's good you had such a long time pain free. Diet can definitely make a positive difference. Our cycles change over time. I've gone 2 years without a single attack, then out of the blue I had 2 cycles in one year. It constantly changes. (as does our brain chemistry). PFW, J

CatCha, For me, the symptoms you describe pre CH starting are spot on. I snap at people for no reason. I don't feel like myself, but there's no specific reason for it, etc. J

I'm still looking for that Florida conference. ha ha... Might try to make this one. Long drive... Anyone posting room shares yet? J

You might want to send a PM to BostonHeadacheDoc. He's a headache specialist that frequents the board and regularly speaks at CH conferences. He's helped many of us with CH. J

FunTimes, Hmmmm, only steak for your wife. Maybe Lobster. mmmm, now we're talking. Glad to hear you made it through a rough one and out the other side. ; ) J

I'm glad you're getting some pain relief. I don't want to be a buzz kill, but Chiropractic adjustments have been debunked over and over and over. It's more likely your cycle has just changed on it's own. It happens quite often. I know we're all looking for a quick cure, but chiropractic adjustments isn't it. Just like I thought Verapamil was a miracle drug the first time I took it. I took it for a few weeks and POW.. My CH stopped. I thought WOW., this stuff is awesome... It's a miracle cure!!! The next year (when I was episodic) I went back to the neurologist and got another script for Verapamil. This time it didn't to anything. Not even the slightest help. Instead I got PVC's (Premature Ventricular Contractions) (Heart palpatitations). They took about 2 years to go away after stopping the Verapamil. Again, glad you're getting some pain free time, but I can guarantee you, the chiropractor didn't have anything to do with it. People have tried it over and over. J

Oh, and any foods high in Tyramine are trigger foods for most of us with CH. Anything fermented or high in preservatives. Alcohol, Cheese, preserved meats, over ripe fruits or vegetables etc. J

MaskedMarvel, Also never heard of CH having anything to do with the Liver. I'm thinking someone is toking a little to deep on that one. : ) As moxie mentioned, for busting our CH, it's best to stick to 5 days. For some reason the medicine is less effective with shorter or longer time spaces. PFW, J

Mit12, Yea, over the years lots of people report more or worse attacks when they're relaxing. Vacation, home from work etc. J

CHF, Yea, I remember reading an article years ago. The prevalence of CH is greater the closer to the poles you get, and less the closer to the equator. J

One VERY important key to using O2 is get on it before the pain kicks in. As soon as you feel the attack coming. Slam the energy drink, and get on the O2. If you can do that before the pain kicks in, I'd bet you the O2 will work better. For me, if I can't get to the O2 till the pain starts, it takes 45 mins to work, if it even works at all. J

CHF, Interesting read, though it seems the article may be grabbing at straws when it comes to CH. There's only a handful of individual cases and the writer's terminology uses "may be responsive" several times. Just based on this article and others that have tried it, I'd guess the responsiveness is no better than placebo. IMHO. J

Elrik, I'm unsure if your doc doesn't know what he's doing or he's trying an experiment on you. Indomethacin doesn't work on CH. That's not opinion, just fact. It does work on a similar condition called Hemicrania Continua. Some doctors use a short script to see which condition the patient has. If it works you don't have CH. If it doesn't work, then likely it is CH. https://en.wikipedia.org/wiki/Hemicrania_continua If he says you definitely have CH and prescribed Indomethacin then he's not done his research. J

The company that just took over for VA outpatient oxygen here is similar. They won't do anything unless it's on a script from the VA. It's cheap and easy to buy your own non rebreather masks off amazon. I think someone posted a link recently that they were about $6 each for a basic mask. Also, make sure you do as Jon above recommended. Tape over or install one way disks (if you can) over the open holes on the mask. J

BOF, My oxygen co, prefers E tanks because they're easy to transport, both in the truck and around your house. I keep a rack of 10 in my front hall closet. Then transfer 2 at a time to my "CH Chair". Then I put the empties in a rack on the front porch for the O2 guy to swap out whenever he comes around. You can easily carry an E tank, but the M and M60, not so easily. J

Oh, about forgot the VA gave me Amitriptyline some time back as a last resort sorta med. I read the side effects list and decided not to take it. A friend of mine is a nurse and his hospital uses an off brand of the exact same stuff called Elavil. The nurses nicknamed it Evil.... Because most people that take it, become manic when they give it to them... J

I need to meet FunTimes one of these days. His process of getting extra O2 tanks is exactly what I've done. Often the drivers have no accountability for what they have on the truck, and don't report what they pickup or drop off other than what's on the drop off sheet. When they come to drop the 2 tanks. Say you really need another to get through to the next drop off. I've had guys pushing me to take 2 or 3 extra tanks before. The company just wants to get paid from the insurance co., and have to spend as little in gas exchanging tanks as possible. If you call every two days for refills, I'd bet they'll start leaving extra tanks. J

Cheryl, I'm not opposed to it, but it doesn't seem like something that would help. Everything from treatment, to symptoms etc, etc are exactly the same regardless of gender. It's educating the doctors that's the real issue. J

I might try to look for that option in the software and see if I can default it to a link. J

Quite funny.... Here's a repost of the link for a regular browser. https://www.youtube.com/watch?v=FblD-PAEzNI&feature=youtu.be J