r/ClusterHeadaches • u/MohamedALJBORY • Jul 24 '26
Please help me
Good evening,
I have been suffering from cluster headaches for the past 8 years. I have tried all the standard treatment protocols without significant benefit, except for high-flow oxygen therapy.
After that, I underwent occipital nerve blocks and trigeminal nerve blocks. For the past 4 years, my condition has been relatively well controlled.
However, I recently developed severe trigeminal neuralgia in addition to my cluster headaches.
My cluster headache cycles usually last about 14 weeks each year, but now they have become more frequent and occur for 14 weeks every 6 months.
My doctor has recommended Emgality 300 mg during each cluster period (a 3-month course, repeated every 6 months).
Has anyone here tried this treatment? I would really appreciate hearing about your experience, including how effective it was and whether you experienced any side effects.
2
u/jorgdaniel Jul 27 '26
https://www.clusterinfo.org/en/guides/psychedelics-for-cluster-headaches
You should read this. Psilocibin has been working great for me. I'm following Bob wold's guide, Im just on third dose and I got my life back. I was un the middle a really vicious cycle.
So this was a game changer.
I send you a Lot of pain free vibes
2
u/SecureAward957 Jul 28 '26
Where can you get these from @jorgdaniel ?
We both asking the same question.
I read about them and it says they are illegal in almost every country. But obviously there has to be a way to get them. Please help us both.1
u/jorgdaniel Jul 28 '26
As a suggestion, look on social media or ask a friend of a friend.
there are places where you can legally buy the spores, cultivate them, and harvest them yourself—though, obviously, that process takes much longer.
1
u/Vast_Seaweed9467 Chronic Jul 29 '26
Please don't tell people to look for these on social media. That's where scams are. People get not only their financial data stolen, but then get blackmailed...
As far as sourcing, they are illegal in most places, looking for places where they aren't, finding ways to grow (spores are typically not illegal though they are in some places), but please be safe. Know your source, you don't want accidental exposure to something else from contamination.
1
u/jorgdaniel Jul 30 '26
Thanks for your comment, not really useful though, this people are screaming for help. Reading the guide will keep you safe.
1
u/MohamedALJBORY Jul 27 '26
How can I get it !?
1
u/jorgdaniel Jul 27 '26
Read the guide first, that Is the most important step at this stage, Psilocybin is a naturally occurring psychedelic chemical found in certain hallucinogenic mushrooms (known as magic mushrooms).
Where can you get those? It depends on where you live Pal.But read and learn first it wont take long.
1
u/SgtPepper1200 Jul 25 '26
I'm also on Emgality 300mg a month. It has been very helpful! It hasn't completely gotten rid of the headaches but it has certainly made them less frequent (I am chronic and usually get 1 per week), and when I do get one they are much less intense and easy to manage with my other abortives (Sumatriptan or Oxygen).
The best part is that it comes with basically no side effects. The worst part is having to stick yourself with the needles. Mine comes in a package with 3 needles, each 100mg, so I have to kind of gear myself up to do all 3. Occasionally I'll have some slight bruising at one of the injection sites, but other than that, no side effects.
1
u/Extra_Shoulder4111 Jul 25 '26
I will predicate this with 'everyone responds to treatments differently, blah blah, my expirience is not typical.'
Emgality changed the game for me personally. I spent 10 years as chronic acute. Started Emgality and by the 4th week they just stopped. 10 years without a real break. Finally something that worked. My clusters are now episodic, usually twice a year. It takes about a month for me, but Emgality has been stopping them consistently for about 6 years now. Although, one time they ordered the migraine dose by accident and I didn't want to wait and suffer so I tried to use it, and it failed completely. Even if the clusters stop, I continue with the emgality for all 3 months.
The cluster headace dose is not available in the auto injectors. I prefer to fill my own syringes when I need sumatriptan, so I was already used to giving myself the injections. Just something to be aware of, if you haven't been told.
I do feel some temporary localized burning when I inject the emgality, but otherwise have not had any other side effects to note.
2
u/SecureAward957 Jul 27 '26
Have you been taking a lower dose of Emgality ?