Tim Hogge

I tell you what. I wish there was more data than this but my experience is unbelievably similar. I firmly believe that my ECH came back because of covid and have been milder than before based on my prevention tactics. Thanks for collecting the posts. There was so much info in there.

Honestly I don't know! I have been in remission for years but I'm going through it now. The ERs O2 mask doesn't sound like what you describe. Before, I used O2 concentration machine. There wasn't cylinders at all. Hell, am an aircraft mechanic so I even tried on board O2 that didn't seem to do anything as an abortive. My guess I haven't use the coreect set up. I appreciate the insight for sure. I am doing a lot of catching up on CH info.

I've been in remission for about 4 years. I recently had Covid that was mild but about 2 weeks later (presently) I've been experiencing shadows, twinges and full blown episodes. However, my CH are about a 50% pain scale than before. I'm in the military and applied for medical and religious waivers for exceptions because I terrified the vaxx would trigger a CH season. And of course there was no data on that but I can't take chances with my military service and CH. This current CH period had me curious if any studies had been conducted yet and there was only one. A weak one but interesting. I have attached the link. Has any in a remission period experience this after the shot or covid? Because for me, it's the only difference in my habits. https://pubmed.ncbi.nlm.nih.gov/35833226/

Make sure you're hydrating. O2 works best when you're well hydrated and electrolytes levels are good. It's hard to get water in during a episode but you need it to get it in. What you do between attacks is included sleep positioning. Maybe try elevating your head positioning (like when your sick) to reduce blood pressure and increase circulation.

What was she eating? Inflammation in general is often a trigger. Foods that cause gas and bloating could be setting things off. Everyone reacts differently to different foods so anything can possibly be a "trigger" food item. Just a thought. I just pray my kids don't get CH gene. Good luck.

My experience is very similar. I stopped eating gluten and I went years without CH. It's was key was sticking with it. Diet is the most difficult way to control CH I think. It took about 3 to 6 months for me get it completely out of my body and I avoid Gluten like the plague. I'd rather go hungry. It's been about 7 years now and I've only had one 8 week episode after being exposed (for about 3 months) to gluten in some seriously tasty szechuan sauce I was going in on at my work dinning facility. Stick with it and stay off meds as long as possible.

I only take Verapamil during CH period. I feel like a lot of people have good results with oxygen but it never worked for me as an abortive. My best and lasting results came from strick dieting. Neuro- inflammation from foods is my biggest trigger. Gluten in particular for me. I've been able to control CH for years by avoiding foods that cause bloating essentially. And you can't sneak a cheat meal in their. I'm just not a fan of pills and being tethered to therapeutics. Good luck

I had CH for about 17 years. I've been able to control and essentially prevent episodes/seasons by avoiding gluten. Although challenging for sure, I'll do anything to prevent an attack. I went from two CH seasons a year (about 6-8 weeks long, 8 headaches a day, 90 minutes average) to nothing for 2 years. Then I had a season after realizing I had a gluten accidentally in my diet. I went another 4 years without issue. Has anyone else tried this approach? It took about 3 to 6 months to get gluten free completely but it changed my whole life without meds.