r/clusterheads

I had my first cycle last year at this time, after finding this subreddit I realized that I was lucky because I only got one attack a day and the cycle lasted for one month before it ended after taking verapamil and predinsolone. In the past week, I have been waking up to this mild dull pain in the same side as my cluster attacks and it goes away after 10 minutes or so but tbh I'm terrified of starting another cycle...also I used to get the attacks as soon as I woke up just like this recent pain. I think anxiety will kill me

why would this happen?

Very very chronic (6 attacks a day)

D3 regimen seems to do absolutely nothing despite me taking it (not sure why i still do)

Been absolutely relying on 15lpm oxygen for about a year and a half and it now basically no longer works to get rid of the attack

Essentially now just go to the nuero every 5 days for a $300 nerve block out of pocket that insurance never covers and then 5 days they start right back up again full steam ahead (then ill use sumatriptan sprays maybe 3-6 of them in that day they come back) and then back to the neuro for another nerve block so i can live for 5 more days

Psilocybin like kinda workedish not sure, i was taking 1.5 grams every 5 days for over a couple month straight and periodically id get a few days relief but nothing that really makes quality of life anything to write home about

Emgality never worked

Fuck this disease, im just about done with it all, no point to keep going

Hello! After 3-4 years of remission, mine are finally back. I’ve kind of just tanked them in the past but I’m older now and have the means to seek out some better solutions. I just have questions, hoping for any response you’re willing/able to give.

I do have an appointment scheduled with a PCP to get a referral to a headache specialist. Don’t know when that’ll be available though.

- I tried oxygen for the first time last night using a 95% bottle I got at CVS. It was the highest concentration they had. It miraculously did abort the attack but rather than buying me a day, it just pushed the attack to 4 hours later after I woke up.
So, is Oxygen the best and most immediate option I should pursue? I’m reading online that I likely need an actual 100% supply and a proper mask/nose piece. Can that sort of thing be prescribed/covered by insurance?

- Mushrooms. What are we even talkin about here? I’m gonna be in Vancouver this week and am curious to try these. Do I just need one dose of psilocybin specifically? What size of a dose? Do people take a dose every time they feel one coming on and just trip out once a day? What do I need to know?

- How effective is melatonin? Read that cluster headaches are accompanied by a decreased level of melatonin and that taking supplements can help. Should I just be doing that?

- I take Lisdexamphetamine (Vyvanse) every day and I’m the only one in my family who does. My clusters started within a year or so of me starting Vyvanse like 10 years ago. I’m the only one in my family who gets clusters too. Dunno if they’re related but I’m curious if anyone else knows whether stopping my Vyvanse for the next month could possibly help reduce/prevent the attacks? Any experience there?

- Any other advice or suggestions? I’m lookin to try whatever this time, there’s just fucking gotta be something I can do to make these not so bad…

I’m not sure if this really fits the flair but I wanted to throw this out there in case anyone else wanted to try it. Back when I used to wake up to cluster headaches repeatedly, I would run to the kitchen and grab a frosted sugar cookie (yes, I know🫠) and a cup of coffee and consume them as fast as possible. Majority of the time, the cluster headaches went away. Let me know if you try this, I’d love to know the science behind it.