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As for Oxygen, you just need a Rx. Ask Dr. for it and a good respiratory/medical supply place and pay out of pocket, its super cheap ( mine are 7 bucks a tank, good for 4 headaches)..It is so worth it.

I'm not sure I'm following the significance of this question, and I'm not sure I completely understand the posts because they seem odd to me. To answer the fundamental question, my daughter has been through many years of cycles with no medications at all. She has never used verapamil or steroids, and she has maybe used triptans five times in the fifteen years. For a long time, she didn't have oxygen. A lot of people believe that such-and-such medication, usually Imitrex (an injectable triptan), makes cycles worse. My daughter's cycles got worse over time, just like it happens for almost everyone, even when she was using nothing. I am not a believer that meds/no meds makes any substantial difference, unless they are overused. She's doing okay now with the full D3 regimen and high-flow oxygen supplemented by caffeine. (The story of why she didn't have O2 for many years is a typical story of idiot doctors not giving a crap and the patient not knowing any better.) To endure CH without oxygen seems crazy to me. If you can't get a prescription, you can do what many many people with CH do -- set up a system using welding oxygen. To not do the full D3 regimen (not just "D3 and magnesium way more than normal") also makes no sense to me. What I know about treating CH pharmaceutically and otherwise, including links to the full D3 regimen and info about welding O2, is here: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

Hello all, I am 27 years of Age and was diagnosed as a sophomore in High School. Traditionally, occipital nerve blocks have worked for me in the past. I used to live in Upstate NY, where my headaches were cyclical with the seasons. I recently moved to Florida, and had almost 2 WHOLE YEARS of relief. I began showing symptoms of shadow headaches about 2 months ago, and a month ago fell into what I have known as a traditional cluster. I don't have insurance, and have received 2 nerve blocks in the past 2 weeks, 1 being 3 days ago. I have had 9 headaches since the latter. I use O2 at home. I also have sumatriptin pills 100mg. Those seem to help. Any suggestions on what could get me out of this cluster? And does anyone know of a good Neurologist in the Tampa Bay area. Thank you

I tried and failed with white wine at the conference Friday night. I got hit and learned that my low level constant shadows are an indicator of still being in a cycle.

The scan does not need to be done when you are in cycle. It is looking for other brain abnormalities. One and done unless something else happens. Yes. I have. Several times in the 'old days'. My hits were milder and shorter then. And then once with a 6 month cycle where I thought I was going to die. I didn't die, the cycle ended, and I found a Neuro. He helped as much as he was able to with the limited knowledge he acquired in school and practice. Then I found this site and became a person again.

This is my first time with CH diagnosis and I have been in cycle since July 4 (I may have carried this for years, thinking it was sinus headache - but this year has been almost unbearable). Can you experienced folks help me understand what you experience when you come to the end of a cycle? Does the cycle end come suddenly? Are there subtle changes? Can you normally sense when things are winding down? By the way, THANK YOU for all the great information and experience. I am finding some pain relief through this forum, as well as emotional strength through our shared pain!

For me, the cycle begins slow, like 1 every 2 or 3 days. Then it moves to 1 every day. At the peak of my cycle I am at 3 a day and then suddenly they stop. Mine don't taper off, they just stop. What I can say is that if you are in your peak part of the cycle, it is orobably on its way out. Also try and remember how long this cycle lasts, as well as, how long previous cycles may have been. My cycle is about 6 weeks, I'm at week 4 rn, so I should be ending soon. But I just keep track of time.

Hi 81007 and LKD06. And welcome to you both. I am at a loss why pills are being prescribed for clusters? They take too long to work for most people. If you get the injections you get much faster relief and you can take less than the standard auto-injector dose by monkeying with the stupid pen. Vials are much better. I don't think you are making a mistake in avoiding the meds if you can LKD06. There are other options that can help you. The D3 Regimen, energy drinks, etc. Sorry, I am not up to speed on your history. This community is working to solve the issue of no O2 for Medicaid or Medicare. There is a meeting in DC to bug the government to fix this horrible injustice. We call it Headache on the Hill. ATB

I would highly recommend getting oxygen to abort your attacks. No rebounds or side effects

I’m out of likes for the day =-( but @Dan32 brought up a very good point. There are mixed feelings here about verapamil. Most of the regular contributors here have tried it at some point. I was on 800mg a day until I stopped it months ago. It is important to get an EKG every time they raise your dose as well as check your blood pressure. I tolerated up to 800mg any more gave me blurry vision. I was about to wean it off when my Ch started to get worse I decided not to change anything. But i was fairly sure it wasn’t doing me any good. I now get hit all day and every hour I’m sleeping. But I did get a side effect called calcium channel blocker released peripheral edema. Additionally bc I was in such an “over dose” my cardiologists words ( my neuro insisted on a cardiology follow up after raising each dose when I got above 300+mg a day) I got anasarca it total body swelling. I knew my stomach was getting bigger but I thought the wet gain was from another drug. One day I looked down at my belly. Hopped on a scale and I gained over 15lb in a few months. Next day my legs blew up like balloons. Called my cardio we rapidly weaned the verapamil half way, then titrated it off over the next couple of weeks. Edema left w a little help of Lasix and I was back to normal in no time. But there are many folks it works miracles for. Like batches D protocol mentioned above. Everyone is different and our CHs change all the time. A little experimentation is in order. I should also warn you verapamil has been a potent blocker for some folks that try to bust. So if you want to try busting. Many of our first line treatments. Don’t start the verapamil yet. Don’t be afraid to discuss all these options give your doc this website and encourage them to take a good look. There is a busting/ mm study that just finished up at Yale. And a study in Switzerland enrolling patients for an LSD study. Busting is a safe (for most read precautions) and effective way to either prevent s cycle or abort one. Hit the blue button at the top of the screen...

Welcome to the community Willy!! Sorry you had the need to join us! Good to see that you have O2!! I'd suggest that you clue your doc in on the sumatriptin (imitrex).......for the vast majority of clusterheads the pills just don't work fast enough.....the imitrex nasal sprays work a bit better, but if you have to resort to the use of trex, the best option by far is injections. The best thing you can do in my opinion is read up on the anti inflammatory vitamin D3 regimen in our files section......you can start on it immediately once you have acquired all of the co factors but you will need to have some bloodwork done to establish your baseline levels.......we've watched this regimen work in folks life with ch for closing in on 10 years.....works well for about 75 to 80% of folks to either reduce the frequency and intensity of their hits or become painfree!! The originator of the regimen, Batch, is active on the forum so ask any questions you might have and someone will have an answer! The last option is busting and you'll also find extensive info on that in the clusterbusters files or the share your busting stories section of the forum. Dallas Denny

Thank you for that- I look forward to reading/learning more from the experiences that have been shared on this forum. I had the chance to speak by phone with Bob earlier today, and he seems like a great advocate (one with alot of insight and years of experience). He shared some really interesting stories with me. Some we laughed about, but others left me feeling really frustrated over the unique challenges faced by the CH community (like about those who lack access to sustainable prophylactic options and also score high on tests for PTSD, or elderly CH patients who struggle to access oxygen as a treatment). Following our call, Bob told me he would put me in touch with the clinicians at Yale running a CH psilocybin study, and that he would introduce me to the individual out here in California who I think Bob said holds the BOL-148 patents and is trying to put things together for some preclin efforts. I look forward to helping wherever I can and will post on the forum as things unfold. -J

Apologies for bumping an old thread, but want you all to know that CH has become personal to me. I am the CEO and founder of a biopharmaceutical company in San Diego, and, although the company is primarily engaged in developing antidotes for the U.S. Military+Emergency Preparedness, I am a strong advocate for underserved patient populations (where traditional pharma is unable or unwilling to help). We may have access to resources and partners that can push this compound to a place where you all can access it safely, affordably, and reliably. I'd love to continue the dialogue and see where I/we can be of assistance and get this drug in the hands of patients as quickly and efficiently as possible. Please email jfernandes@regenicabio.com if you're interested in discussing further. Strength and Optimism, -Jack

Welcome Andy! It seems that for some,they just peter out. Others wake up one morning and realize they slept all night. For me, I often still wake, to find that the hit is just a hint and go back to sleep. Instead of four 2.25 hour hits per night, I get three. It just winds down for me. Others are different. Mine start with one a night and then grow to the standard four. Often, I will still wake at 'hit time' and there is no hit. That does take a few weeks or more to stop. But hey, a glass of water trip to the bathroom and back to bed is GOOOOOOD!!!!! Stay with us! This is the best place I have found for CH. Gave me my life back.