Baby Moth

This is really helpful. Thank you! I think i going to skip the $600 price tag

Has anyone used / had success with GammaCore (https://www.gammacore.com)? I am thinking of getting a prescription, but it's VERY expensive and not covered by insurance. Wanted to see if anyone had experiences with this in the community. Thank you!

Just wanted to say that my heart goes out to you. This is a long and sometimes lonely road. @BoscoPiko knows a lot! There is also a lot of resources on this site and in the community. I know it can be hard to read through sometimes, perhaps there is someone who can help you read and organize all the protocols and experiences. That was really helpful for me b/c reading and being on the computer was really hard sometimes. I have found that meditation and learning to deescalate my fear cycle has been really helpful. There are some good resources / apps such as Balance (free for a year) and Curable (also has a lot of free resources). Those were, and continue to be helpful for me.

Hi - wanted to share another resource I have found helpful. Curable is an app that pulls together a lot of info on chronic pain. I have found it helpful in understanding how pain works when "your pain is real, but you are not sick." Wishing us all the best and pain free nights and days.

I found it <3

Yes, I actually haven't used it for an attack yet (last one was on Thursday) but have practiced with it a few times. I hope that it helps as an abortive. Yes I plan to stick around : ) this forum is the most help I've received for this disorder yet. Do you all know how I find the support group?

Yes, I have that as well

Small Victory!! I got my mask!! Not from the doctors / insurance but from Clusterbusters.com <3 Came 100xs faster then then Apria delivered.

Hmm not great lol - I don't know if that's what it is either. I appreciate you sending.

Hi - Thank you. Yes, I've read that a few times. I tried ginger yesterday and today I'll try one of the other ones. I'm also getting together the D3 regimen and started taking most of them yesterday and all of the vitamins today (in some form, I don't have it exact yet). It's a very helpful article <3

Thank you - I still don't have the correct items, but hoping to soon (most likely Tuesday) and I am going to ask for a script for some smaller portable tanks. I had to get a new PCP b/c the one I was working with has been downright awful. She thinks I'm just having "headaches" and has messed up my request twice now. Question: Is it part of CHs to have headaches / head pain / pressure all day? I feel pressure behind my eye and in my eyebrow and sometimes below in by cheek bone area. I feel like I could almost handle the attack knowing it will end for a while, but this consistent pressure and pain (with spikes throughout the day), is really wearing me down. Thanks again for all your help. It really means so much

Thank you for following up. The attack came back last night and today I have pressure (shadows) on my right side. I actually knew it would come back last night b/c I felt the pressure come back around 9pm. Attack at 2am. I chugged water, just stuck the O2 tube in my mouth and did push-ups. It did stop the attack from taking hold. Lasted only about 30min. Okay. I will start the Vitamin D. Thank you for the extra push. The micro-doses have been about .25 of a gram, and I do feel it for about 30min. I am worried it will wear off. Okay so a larger dose 5 days apart. I actually did a larger dose (1 gram) recreationally two days before this started. The attacks started 2 days later. Which is weird/odd timing. I am not using Triptans. Stopped on the 21st. And yes, they messed up the mask multiple times. Agree it's almost inhumane to give me the O2 with no way to use it properly. It's a big tank about 3 ft tall. It does look like I have a regulator but they just dropped it off an never told me how to use it. I ordered a mask online from a link on this site.

darn its the wrong one

Ah yes

@BoscoPiko Thank you - I guess Im trying to figure out if it's placebo or not.

@BoscoPiko Do you know of others that have been helped by sleeping outside? It also helped me one night before i did the microdoseing. Slept outside, no attack. Next night slept inside, attack and pain in the morning. Then microdosed AND slept outside, no attack. Two nights in a row now. Im nervous that it's going to come back, yet my body seems to be slowing coming back on-line, if you know what I mean. I can still feel facial pain, so I don't think it's over.

Thank you @BoscoPiko!! Yes, I have one ordered now. I specifically asked for the rebreather after looking it up here on this forum. I'll keep trying to get it today.

Two days ago I micro-dosed psilocybin based on reading on this forum and some other research my partner did. First day it took my level 7 head pain that was ramping up in the morning and took it down to a level 1-2. Slept outside that night in the tent (for circadian rhythm balance / exposure) and had no attack. Did that again yesterday with a smaller dose. Head pain level 0-1 and then slept outside again, and took a night time walk both nights to watch the sunset, and again no night attack. This morning work up 0-1 pain. My hunger came back the first night of mico-dosing. Slight but there. It feels like my body is starting to return to me. I can't even believe it.

Thank you! I wasn't able to get on here for a few days b/c I had too much pain. I was experiencing nightly attacks as well as level 7 pain from when I woke up to night time. Basically non functional. Unable to drive, no appetite, and suddenly depressed as hell. Basically I had been experiencing symptoms for a month and then they seriously picked up and it scared the shit out of me. They prescribed nasal spray triptans and sent me an oxygen tank - but didn't give me the mask so I couldn't actually use it. This was really disappointing b/c I had attacks after it was delivered. I STILL don't have the mask.

Thank you so much for your response! Okay great, I'll start there and look into the D3 regimen. Really appreciate finding this group

Hi Community, Was just diagnosed with cluster headaches. Had the first cluster about two years ago and never got much help for it. This time did a lot of research and was able to receive a diagnosis, medication, and oxygen. My questions revolve around will this get worse? Is there any way to know if it will still give me breaks? Or will it get more frequent? Can it go from episodic to chronic? Is there anything I can look look into right now that is most helpful? Reading a lot an honestly it's making be more nervous.