Anyone dealing with Cluster headaches for many years?

Posted by Avion @benchi300, Sep 17, 2023

Have u found relief with preventive treatment. Is Verapamil a good treatment that keeps its efficiency over time? Thanks for your help.

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@coachgail29

I have had clusters just about every other year for 30 years. New headache specialist suggested a 3 doses of Emgality. I'm a little hesitant but not sure what else to do next time they hit. Mine are more cervicogenic, so they said, but I rock back and forth, bang my head and scream. The headaches no longer stop on their own (tried fighting for 2 hours) and they hit a couple of times a day. To stop them, I have to use the sumatriptan injections. However, I give myself half doses of 6mg vials (not auto injectors). I have the kind that has two vials and they clip into a blue container. I hook the injector onto a vial and spin to pop the dose up, and then spin it backwards so I can pull it the rest of the way out with my hand. I put the needle in my arm and use a q-tip to push the black stopper down halfway. The next round I use the same needle (only 3mg left) and push that into my arm with the actual injector. That gets me 4 shots out of the two vials. Can't use too many per day because they will rebound. To stop a cycle I have to get facet injections into my C2-3. Something triggers my muscle and it pinches the nerves. The spasm will only stop with a steroid injection. Not sure why these headaches exist but they are truly hell on earth. I also belong to the cluster headache website but not sure how to go about getting mushrooms. I heard years ago that it works but never looked into it. You would think with technology and medications today, we would be able to put an end to this hell.

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I have used the Emgality at the cluster dose. Didn't experience any problems from it at all. Honestly, not sure how much it worked or not, but worth considering if your doctor recommends it.

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@coachgail29

I have had clusters just about every other year for 30 years. New headache specialist suggested a 3 doses of Emgality. I'm a little hesitant but not sure what else to do next time they hit. Mine are more cervicogenic, so they said, but I rock back and forth, bang my head and scream. The headaches no longer stop on their own (tried fighting for 2 hours) and they hit a couple of times a day. To stop them, I have to use the sumatriptan injections. However, I give myself half doses of 6mg vials (not auto injectors). I have the kind that has two vials and they clip into a blue container. I hook the injector onto a vial and spin to pop the dose up, and then spin it backwards so I can pull it the rest of the way out with my hand. I put the needle in my arm and use a q-tip to push the black stopper down halfway. The next round I use the same needle (only 3mg left) and push that into my arm with the actual injector. That gets me 4 shots out of the two vials. Can't use too many per day because they will rebound. To stop a cycle I have to get facet injections into my C2-3. Something triggers my muscle and it pinches the nerves. The spasm will only stop with a steroid injection. Not sure why these headaches exist but they are truly hell on earth. I also belong to the cluster headache website but not sure how to go about getting mushrooms. I heard years ago that it works but never looked into it. You would think with technology and medications today, we would be able to put an end to this hell.

Jump to this post

I have used the Emgality at the cluster dose. Didn't experience any problems from it at all. Honestly, not sure how much it worked or not, but worth considering if your doctor recommends it.
Oh, I have always felt like my neck and the clusters were connected. But my C2-3 facets are fused so they can't do an injection there. They said they could try C3-4 but I've been afraid to do it. How long do they work for you?
Also, have you gone to Clusterbusters, I think it is clusterbusters.org. If you get an account with them you can check out all the "busting" details on their forum. I haven't tried it, but you might get the mushroom details you are looking for.

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Hi @seanmartin45699 @coachgail29 and @sanderson23,

Glad to hear you've found something that is helping your headaches, seanmartin45699.

In addition to the psilocybin mushrooms you talked about here, other members have mentioned alternative or complementary treatments in the Connect Headache & Migraine support group. I'm guessing you're aware it's always a good idea to talk to your doctor about complementary or alternative therapies you're considering and do your research about their effectiveness. When considering complementary or alternative treatments, be open-minded yet skeptical.

One article on the National Institutes of Health's National Center for Complementary and Integrative Health had some useful information on mushrooms:

-In the News: Diamond Shruumz-Brand Chocolate Bars, Cones, and Gummies
https://www.nccih.nih.gov/health/in-the-news-diamond-shruumz-brand-chocolate-bars-cones-and-gummies
coachgail29 - did you end up finding out how to get ahold of psilocybin mushrooms? If so, have you used them and how did it go?

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@seanmartin45699

I have been living with episodic cluster headaches for over 20 years. I have used everything a doctor can prescribe with little relief. I still have my Triptans (nasal) but I don't use them any more. I would research everything I say for yourself, I am no doctor. Saying that I will say this, at first sign of a cluster cycle I microdose Psilocybin Mushrooms, and follow up with another dose one week later. It breaks the entire cycle, not just one attack. I did this for the first time four years ago and it stopped the cycle in one attack, and I experienced the longest remission period (four years) in over 20 years. I again last week took a single dose and it stopped the cycle completely. ClusterBuster.com is a great resource. I pray this helps at least one other person get rid of the living hell that we deal with.

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@seanmartin45699
Are you still micro dosing as a way to control your migraines? I hope that it is continuing to help you.

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