ThatHurtsMyHead

Sierra, Don't be too hard on yourself. Everyone deserves to enjoy some pain free time away. I seem to be doing it too often as of late. I really need to be here, helping more than I have the last few months. Your post is a very good reminder that we should always be prepared with a plan B. Keep enough busting supplies on hand, and an alternative. Just in case the first substance looses it's potency. I've been caught like that twice now. Hope not again though. PFW, J

Didgens, I don't think vaso dialation is the cause, it's just one of many triggers. Cause of CH remains ukn. J

Hamsal, As a first post how about telling us something about yourself? The information you posted is very informative, but seems sorta odd as a first post, as there are several people on the board here, that were the creators of the info you put on that website. Tell us about yourself and your history with CH? If you become an active member of the community here, there's always something to do on the board to help out. What languages do you program in? Have a great day, J

Mit12, I've been preventative dosing for over 4 years now. I've had 2 cycles come in, out of nowhere. Both were VERY hard to stop, and both started within a week of taking 2 doses of cialis. I'd be pretty confident in saying I would have been 100% pain free the last 4+ years, had I not taken the Cialis. I've read similar stories from others that have taken Viagra. Give the L-Arginine a try. It works pretty good. Not as good as Cialis or Viagra, but I didn't get any CH attacks or cycle starts when I tried it. A nurse friend of mine was taking it on occasion and told me about it. Just you can't take it for very long or it completely stops working. J

Great post DH... hmmm, I should spell that out DesertHeadache, (my humor is sorta bad I know) Keep us posted how the Verapamil does for you, cycle to cycle. I found it (seemed) to work great the first year, but the second year not so much. Instead it (or might have been combined with the Imitrex), triggered a heart condition called PVC's (Premature Ventricle Contractions), that took 2+ years to go away. Thankfully it went away on it's own, but I'll never touch that verapamil stuff again. Definitely glad it helps some people though. Again, great post. J

Ladies on the board, feel free to skip over my post This one's for the guys. Mit12, Good question. 1) First thing I'd think, is diet change. Reducing blood pressure (if you have high blood pressure), is the #1 cause of ED (is my understanding). 2) This might sound off, so apologies if it is, but porn? Something to rev the engines before engaging. 3) Another thing that only works short term (very short term), is an amino acid called L-Arginine. It helps if taken daily for 2 to 3 days ahead of an anticipated encounter . If you take it regularly, it'll completely stop working after a few weeks. ok, since I'm on a roll, here's another, that might seem odd. Vasectomy. When I used condoms, I had the hardest time keeping 'up'. Had a vasectomy a few years ago, and poof... No problems since. For me sensation when using a condom just wasn't there at all. Once I got that barrier out of the way of actually feeling the intercourse, it's been nothing but good ever since. J

So wish I could have attended this year. Doesn't it feel great to connect with others that 'understand'. J

Mit12, Keep us posted how you're doing. Feel free to ask any questions. There's a lot of history and knowledge with those CH'ers on here. J

Mit12, Looks like that's a calcium channel blocker. (I'm definitely no expert) - But I think generally the calcium channel blockers are ok, and don't block the m, but that's not set in stone. I think a few have reported m didn't help their bust when taking verapamil (also a calcium channel blocker), but mostly people report it's ok. What was your dose of m? I think many have reported there's a sweet spot just over the threshold of effects (called interestingly a threshold dose ). I'm curious if your m was too low, or you took too often or not often enough. (need 5 days between doses to squash the beast). J

That's a great documentary. He passed away 1 year and 1 day after my father. The day he passed, I read it on another message board, out of a pure coincidence. I decided to look for any memorabilia, and found a signed blotter art on ebay (just the art no chemicals. ha ha). It's hanging on my bedroom wall now. I'd love to have a signed copy of TIHKAL and PIHKAL. Those are somewhat rare and VERY expensive. J

Flutter on a pressure valve is usually caused by an incorrectly matched diaphragm spring. As cheap as those are at Harbor Freight, I'd just replace it. J

To be completely fair, I've been doing a LOT of research on Dr Shevel's patients. I'm finding about an equal count of people that it worked for, and it didn't work for. Finding quotes like this: " Last year she went to Dr Shevel in Johannesberg, had two operations, and was pain free for 4 months. Then they came back!!!!! We are beside ourselves as they are worse than ever." "August 29, 2015 My niece went back to JoBerg and stayed there for three weeks. During that time she had 3 procedures done but unfortunately it didnt work. When she arrived home in Australia she was worse than ever and it has been devastating. " Speaks loudly that this treatment is not a cure. It does look to have helped some people for creating remission of varying time periods. But CURE, it is not. With air fare, lodging and of course the Dr's high charges. Looks like the cost may be up around 25,000 to 40,000 US dollars. That's not chump change for someone to get temporary relief for a few weeks to a few months from our CH. I'll continue to post information I find, but so far the only reports of it working are short term help (accept for Deb's report). J

Here's a horror story from someone that got WORSE headaches after their visit to that clinic... http://www.mdjunction.com/forums/ndph-support-forums/general-support/11040564-surgery-at-the-headache-clinic-johannesburg J

Deb, I don't think there's a debate here. One person in remission is not a cure. Your comments would have much more weight if you said you were in remission. When you say over and over again that you're cured. 99% of the rest of us, say BS, and from there out, all we hear is another crackpot saying they're selling a cure. Not to mention your repeated bashing the treatment that thousands (if not tens of thousands) of us use to put their CH into remission (That really works, and without cutting anywhere on our bodies!), speaks to your level of knowldge of 'busting', as really being non existent. Busting as well as O2, Vitamin D etc are VERY effective treatments if the dosing process is followed properly. Me personally, have been pain free for most of the last four and a half years thanks to mm (and I was eposodic turned chronic). Summary: You want to bash a treatment that thousands if not tens of thousands of people use successfully and promote a treatement ONE person has had success with. That sentence should tell you why people don't really want to listen. Remission does not equal cure. That's a simple fact of medicine. Again, glad to hear you're getting some well deserved pain free time. I'm genuinely glad you're PF at the moment, and genuinly hope you continue to be PF. J

Deb, One person is not a cure... How do you know you're just not shifted to being eposodic? You don't... There are lots of people that from time to time shift from eposodic to chronic and back to eposodic. Your claims are not in concert with rational cause and effect analysis. Those THOUSANDS of us that take low dose halucinogens are a VERY loud voice but can't speak of our treatment to 99% of others on the planet. You say that this site promotes some treatements over others? Yes... You're correct. Weight is given to those treatements that are PROVEN to be effective, and not a quack proporting to have a 'cure', which might have worked on one person. Enormous discussions on this board also include 100% O2 as the #1 abortive, Vitamin D supliments make a HUGE difference in reducing attack frequency and intensity, among many, many other treatments discussed here. Thousands of people that now take these low dose treatments are FACT that it helps reduce the frequency and intesity, or in many many instances are completely pain free. Are we cured? No... And I seriously doubt you are either, You're ONE person, that's in REMISSION.... Remission is VERY different than cured... In remission is NOT cured... It's great that you want to get the word out of being pain free, but saying over and over that you're cured is very missleading and quite frankly turns most of us off. Because there is NO cure. J

Just a quick update for everyone. We've found the issue, but the fix isn't a quick one. Bob is working on it though. We'll post updates here as soon as we can. J

DD, Thanks for hanging out. Your insight is MUCH appreciated my friend. I'm looking forward to a visit out to your neck of the woods some day. J

Happymeal, Being in Japan might add some small challenges, but as Bob mentioned above. O2 would be my first inquiry from your doc. 100% O2 with a non-rebreather, is the weapon of choice for the VAST majority of us with CH. I can usually abort an attack within 5 to 10 minutes if I get on the Oxygen at the first sign an attack is coming. Rarely does the pain go over a 3 (on scale of 1 to 10). You could order RC (Riveria Corymbosa) seeds for planting. If they get stopped at customs then you know they're not allowed. I doubt any harm would come from ordering (if the vendor would ship to Japan). Actually.... Tranceplants might be a great first stop. You can email Adam there and ask if he ships RC to Japan (for planting ). Adam has been a great supporter of those here with CH. He's even been known to add extra RC to orders from time to time. Here's a few more things to try in the meantime: 1) Energy Drinks - Slam one right when you feel the attack coming on. I keep mine room temperature so they get into my system faster. 2) Sleep in a reclyner - This is my #1 'go to' for the night hits. Keeping your head above the heart reduces attacks for some reason. 3) Melatonin at bed time (It doesn't work for me, but there are lots of people that swear by it. 4) Food log - Log what you eat / when you eat it, and when your attacks come. I've found over the years I can reduce my attacks by three quarters or more, just by eliminating certain foods. My list in order of trigger importance: Alcohol Chocolate BBQ Sauce (something in it) Fermented Cheese (Blue, Brie etc etc) Corn Sugar (it's in just about everything Bleached white flour - (I can eat wheat bread ok, just not white bread or pastries). Back to the O2. Make sure you get a non-rebreather mask and 15 liter per minute (some people need more, but 15 is the sweet spot for many of us). PFW, J

DD, Myself and others have found the first password reset won't work with either the old or new ID. It will only work with your original email address you signed up with. I haven't looked at the board on my phone as my eyes aren't the best at reading tiny tiny print with that tiny tiny browser Please stick around, everyone appreciates your mm insight (especially the food forages around the woods at your house J

Shahooty, You're a better person than I. Your reasoning is the exact reason I could never bring myself to partake of a drug trial. Hopefully someone does (and do) take part in trials, otherwise we'd never get closer to a mainstream treatment. Your and others sacrifices are noble beyond words. J

Moxie, I've always figured people were just munging terms incorrectly. J

crosstraining, I love that the vast majority of us Ch'ers stick together. Everyone steps away from the board for a break from time to time, but we always know someone is here if we need it. 8-) Have you tried stopping your CH with mm, seeds etc? (Glad to hear the beast only visits you every few years ) J

CH is commonly misdiagnosed as sinusitis (recurrent sinus infections). Due to the stuffy sinuses and drainage. I usually get a cold either just before or right after my CH cycles (but not always). J

Looks like Ricardo wins.. Hmm wait a minute, you've never tried Verapamil... ok got one on ya.. J

They can spend billions of dollars to transport oil all over the world, but can't put a pipeline for life giving water from the central US to CA. I guess water doesn't make people as much $. (J - Scratching head)...