ThatHurtsMyHead

While I don't have any personal experience with the practice Jade333 is discussing. Jade333 has been around a while and contributed positively to the board. I always like to temper my understanding of alternative treatments with the idea some years ago that Psilocybin and LSD could help us. Those treatments were treated very harshly by many in the public years ago (and in many places are still banned to discuss). It's been a long time coming, but Psilocybin, LSD and other treatments have been proven without a doubt to help us. While I don't personally think some experimental treatments are helpful. As long as they aren't harmful, I'm perfectly ok with letting there be open and positive discussion around them. Love all, J

Thought I'd post this on the public forum for all to see (as well as the bot scrapers. https://www.yahoo.com/news/colorado-voters-decriminalize-psychedelic-mushrooms-155152202.html The word on medical use for mushrooms is getting around!!! (Please don't share any personal information in this thread so we can keep it public Love All, J

I love my family... All you guys and gals here. I've been more away than here lately. I just had to say I actually (like really) got a tear in my eye reading the thread. Titan, You have the rock stars of CH on with you! You'll get some pain free time soon. Keep hanging in there. Sleep deprivation really sucks... J

Introduction This forum is a dedicated space for open discussion about New Daily Persistent Headache (NDPH). This forum is moderated by NDPHaware, a new organization and website sharing information and organizing advocates around NDPH. NDPHaware.org is starting as a project under Clusterbusters. The primary objective of NDPHaware is to find and promote treatments that will help people to effectively manage their condition. The NDPH community will work collaboratively with the broader headache disease community to support research, education and advocacy initiatives. By working and advocating together, we will be stronger and more effective in reaching our shared goals. There is some anecdotal evidence that psychedelics (Psilocybin, LSD, and others) can help with NDPH. NDPHaware supports further research into psychedelics as potential treatments for NDPH and other pain conditions. The "NDPH Psychedelic Discussion" Board is a log-in required space for open discussions about psychedelics as treatments for NDPH.

Shaun, So sorry to hear. Sending you positive thoughts. J

Hi Everyone, The board will be down for a short period on 25 April 2022 starting at 2pm et. We're hoping some of the odd errors many of us get will be resolved by the software updates. Cheers! Jeff

@Fcharp When in cycle diving is a definite no for me. I've tried it twice and never again. The descent is fine on air or EAN36. As soon as I break the surface I get hit with a k10 and scrambling to get back on the boat and the onboard 100% O2 ASAP. Do you do a deco stop with a high O2 for Nitrogen washout? or 21% all the way down and back up? J

I actually have on my "to do" list 3 projects down from where I'm at now... Is to start manufacturing a purge regulator for SCUBA compressors. I've already designed and tested it, just need to get to the part of queuing it up for manufacturing. A very small button adapter would easily turn it into a demand valve. J

I concur with CHF. A demand valve couldn't use and more or less O2 than a bagged regulator. The demand valve will definitely be faster to huff when first getting on the O2. Now, if a person had their flow turned up a lot higher than they were breathing with a bagged regulator, then there would be waste. (once the bag is full, it will leak out from around the mask). Simple solution is simply turn your regulator down to the rate you're breathing and there would be zero waste. J

I think most of us get what we call shadows from time to time. Depending on the person, they can range from a bad feeling, to tightness in our head, to mild headaches, to regular headaches. What you describe as spikes don't really sound like shadows though, but could be. I only get shadows, and full blown CH attacks. There are some other flavors of CH that have different attack patterns. Maybe try to document when and how they come. That should help with a diagnosis. J

BoscoPiko, Our biological clock is something odd. The docs don't know much about our CH, but one thing they can see on scans during an attack. The Hypothalamus in our brain freaks out during an attack. The Hypothalamus regulates most anything that's on a cycle for our bodies. Wake, sleep but also sex, hunger, temperature some emotions and other things that follow a rhythm. New doc definitely sounds in order. I've learned over the years that we're our own best advocate. It's rare that a doc actually listens J

and 4th it....

Ditto what Ganuchi said... (I had to lookup what a Henckels was. ha ha. J

BoscoPiko, Odd as it sounds, we get you. I try to be soft, yet I know my natural state is pretty gruff. I figure if I practice nice long enough that it'll become my natural state. I don't know if it's CH or other things in life (or the combination). I don't recall if you're busting or not? I've found (as most others I think), that busting comes with it other positive affects on our personalities. I haven't really felt happy in a long time. That seems odd to say. Get through this cycle and I promise you'll feel better. Your horse is ready for a long run when you've kicked your CH beast to the corner. Cheers, J

I saw someone post a link a few days ago that Amazon sells them for under $20 now. Definitely a great investment in killing your beast. J

Amy123, From my read of what you wrote, you are much more knowledgeable about CH than your doc. Great news, yet not so great. I'd throw it out there that you might want to find another doc that has experience with CH, but better would be to see a neurologist that's knowledgeable with CH. O2 script should be the first line of attack on the beast. You might get lucky, but most people on pred, our CH beast comes back toward the end of the pred taper. A few things of note: Check your diet. Remove anything that is high in Tyramine (aged meats, any natural cheeses, any fruits or vegetables not immediately fresh. Have you tried energy drinks for the attacks? Slam an energy drink at the first twinge of an attack (then get on the high flow O2). That should significantly help with the pain level and duration of attacks. Make sure when you get your O2 that you stay on it for approx 10 minutes after the attack stops. That'll usually help delay your next attack. My attacks restart very quickly if I don't stay on the O2 longer than just the attack. I'm sure some others will chime in here shortly with more and better info. J

BoscoPiko, I'm no doc, but that amount of Verapamil sounds scary. If your heart rate is too low, it can cause other very serious medical conditions. I'm a huge proponent of busting. It gave me my life back and many others on here. As FunTimes mentioned take a look at the new users info at the top of the page and the ClusterBuster Files section. Energy drinks can really help the individual attacks. For my night hits I keep an energy drink on the coffee table 24/7. As soon as I wake with a night attack, I slam half the can and get on the O2. Make sure you stay on the O2 for 10 mins or so after the attack stops and it'll help delay the next attack. I've never had an issue falling asleep after the energy drink. Post hit exhaustion and I'm out like a light (till the next one anyway (2nd half of the energy drink is for the next attack). Oh, on Verapamil. I know most docs script it as a first thing to take but... Studies have shown it's maybe 5 to 10 % effective. If you're in a really bad place a prednisone taper is an option. Definitely don't recommend that route for more than one (short) round though. When you're about 2/3rds away through the taper, CH comes back. From memory, it'll give you about 2 weeks pain free time. It's not long, but sometimes is long enough to regroup on your avenue of crushing the beast. Definitely don't do more than one round of pred though. It'll wreck your body. Staying away from foods that are high in Tyramine should reduce your frequency of attacks. Tyramine is a natural inflamatory and is present at some level in nearly every food. It's a byproduct of fermentation and aged foods breaking down. No fermented cheese, preserved meats or old fruits and vegetables. J

Ganuchi, I'm no expert on Vit D (but user XXX (batch) definitely is. Make sure you're taking the entire regimen of vitamins with the D. It's my understanding several other vitamins need to be taken with D, to aid in absorption, bio availability etc. will help get your D up more quickly. Cheers, J

Mike, Sorta funny, but you seem serious With all the MRI's that have been done on people with CH. I doubt very seriously every single one missed a big worm in their head. Cheers, J

I had covid back in Nov/Dec. For me it was just a case of the flu, not bad at all. Accept a few nights I did wake up short of breath. Was a little scary, but was fine after forcing myself to breathe deep for a while, then back to sleep. Didn't affect my CH, but damn have I had a ton of other stuff happen since. Exhaustion, mental fog, joint pain (sometimes pretty bad). J

Boston Doc Rocks! Tony, Gonna pepper you with a few questions: Can he do a prednisone taper? It won't fix him, but might get him some temporary relief till you guys find something that works for him. Was he sticking strictly to the 5 day dose schedule when using mm? Did he trip? Or was the experience muted? What does he eat? Anything with Tyramine can and will cause his attacks to be more frequent and more intense. Eliminate anything that's high calorie (no cake, pie etc) Eliminate anything that's fermented (no real cheese (the cheese whiz stuff in the can isn't really cheese at all, and is ok). Tons of stuff we eat on a daily basis are fermented or aged and are high in Tyramine. (soy sauce, any meat that isn't SUPER fresh, vegetables more than a few days old (high in tyramine). Anything preserved, also high in Tyramine. J

I attempted to remove the strikeouts, but they're stuck. Looks like it's something in the pasted email (HTML?). Try copying in the text instead of the entire email. Dunno, but it might help. Cheers, J

All, This is off topic and was brought up by someone on a thread from 2 months ago. For no purpose accept to restart what he successfully has restarted. Let's move on please. The discussion of virus naming isn't productive, nor appropriate on drebie's thread. J

Kluster, Couldn't tell you how many times I've done that. I regularly put my doses off till my beast comes back. Then it's always harder to get it back under control. I'm a huge proponent of preventative dosing. I went the majority of 5 years w/o getting hit as long as I kept to my dosing schedule. When I would get lazy, it always came back. J

Funny just pulled MindMed up. WOW 1.1 Billion valuation for a company that just buys psychedelic research from Switzerland and Denmark. (Sorry in advance, changing subject mid sentence... ) It seems to me like the stock market has completely lost it's mind (no pun intended). Valuations to stock price on everything is out of this world. Tesla has a valuation of 167X it's annual projected earnings. No doubt Tesla will grow, but to say a company is worth now what it's combined net income will be after 167 years is simply crazy... (ok now back to your regularly scheduled program, ha ha.). Cheers, J