Anyone dealing with Cluster headaches for many years?

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.

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.

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.

I have chronic migraine and probable cluster headache that is doing very poorly in the last year or so but especially the last several weeks. I also have lots of degenerative changes in my C-spine, facet arthritis and degenerative disk disease. I am very very VERY cautious with procedures, but I think I finally need to consider the spine injections they are recomending as I feel like the pain in my head and in my neck are in a feedback loop. Has anyone else had either MBB (medial branch blocks) or facet steroid injections? What level and how did it go as far as decreasing headaches? (I a not so worried about the neck pain, I am worried about how it triggers the migraine). Has anyone had a (RFA) radio frequency ablation? Again, what level and did it help headaches? Did anyone have the RFA flare up their migraine and for how long?

Last question, and I don't know if there are any rules about this in this foru. If this question isn't allowed, I retract it! I really need to go to someone I know is really good, I need that confidence and trust to move forward. Does anyone have a doctor they have had these types of injections with in Oregon that was exceptional and if so, can you give me their name and tell me why you think so highly of them?

Thanks so much for your help!!

@sanderson23 I'm sorry about your migraines, but you may want to consider what part your cervical disc disease may be playing in generating pain. Typicality, cervical spine issues cause muscles spasms that pull the spine out of normal alihgnmemnet. With lots of muscles attached to the vertebrae and connecting to the skull, that can generate pain when the muscles are stressed by a spasm that adds tension to them. You may want to see if physical therapy can help. If your spine degeneration is advanced, you may want to consider seeking a spine surgeon's opinion.

Injections don't fix problems, and just possibly mask dome symptoms. I don't have experience with ablations, but that may be a temporary solution or it may not give relief. You would need other opinions on that. I am a cervical spine surgery patient, and spine surgery calmed down the muscle spasms a lot. I can still have some spasms. but they are correctable with stretching. My surgery was a C5/C6 fusion which made my life better.

Thank you, this is helpful!

I have done PT 9 times for my neck! By nine times, I mean with 9 different PTs over 9 different times, full courses over 12 years or so. I do find the exercises help, but only somewhat and I have to be very careful or they can make things worse.

What was wrong at your C5-6 level that you had a fusion for, if I may ask? My neuro has cautioned me against surgery.....