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.
Hi I came across your post after googling my own symptoms. How are you doing?
I also have a t3-t4 disc herniation, head pressure/pain and neck pain. It seems like my pain moves around often from day to day. Some days it also becomes more “white hot” and other days pressure. My neuro thinks it is a form of migraine but it doesn’t respond well to anything. Sometimes I also get “spacey” during the episodes and yawn a lot. It’s the worst honestly…
Hi, @slefman. Welcome to Mayo Clinic Connect. If I understand correctly, you have similar symptoms to the original poster in this discussion, @chrisc8450, and you want to know how they are doing. Hoping chrisc8450 will return and talk about how they are doing now.
Glad you found Connect in your internet searching.
You mentioned your neurologist thought you might have a form of migraine with the pain and pressure you are experiencing. Did they say what kind of migraine they suspected? You said your symptoms do not respond well to anything. Did your neurologist prescribe you medication for the potential migraine?
I would like to speak with others who suffer from cluster headaches and/or chronic pain in the thoracic section of the back. I am trying to find others who suffer back pain along with the headache.I have developed chronic pain in my back in the thoracic section between T3 and T5. The pain in the back mimics the cluster. It comes in stages, excruciating pain, disappears for anywhere from an hour to 12 hours, appears again. When I have the pain in the head, I never have the pain in the back. When I have the pain in the back I never have the pain in the head.
Hi I came across your post after googling my own symptoms. How are you doing?
I also have a t3-t4 disc herniation, head pressure/pain and neck pain. It seems like my pain moves around often from day to day. Some days it also becomes more “white hot” and other days pressure. My neuro thinks it is a form of migraine but it doesn’t respond well to anything. Sometimes I also get “spacey” during the episodes and yawn a lot. It’s the worst honestly…
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:
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 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.
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 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.
I’ve had migraines for 40 years and a recent diagnosis of occipital neuralgia when my neck became more involved.
I’ve used Verapamil for decades but Extended release tablets only and at night to prevent.
I’ve used sumatriptan to break through a headache but recently was recommended Botox when headaches became daily.
I also increased the verapamil from 180 to 240 mg at night.
Extended release matters for me as does the form - tablets instead of capsules. The dosage matters too. We’re each different.
I endured My cluster headaches for 20+ years before seeking Medical help; too scared to find out what was going on. After a triple/nine hour event I walked into a clinic when I felt able to safely get there. I was totally played out. I was given Oxygen at a nominal rate as I was being evaluated. I noticed it's effect after 15 mins or so. Post event pain and lethargy melted away. Prescribed Sumatriptan nasal 20 mg. Next day at first Eye throb, forehead sweat, pushed the plunger and had My first "oh My God " moment after 30 mins. Took two weeks to get an oxygen prescription so I was buying OTC bottles at Walmart. Got me through... A couple months later was prescribed VERAPAMIL 120mg twice a day. I went into remission within two weeks. My dosage was reduced to 120mg a day/AM. That was a year ago. I started a new cycle last month and am starting Verapimil again at 120mg 1x/day to increase to 2x, if necessary. I am confidant this will move Me into remission again. I have so much to say for the Oxygen Therapy. I cut WAY back on the rate; from 20 lpm to 2 lpm with only a cannula and if the eye starts doing it's thing, I employ it right away and am able to get by without the Sumatriptan !
I started getting cluster headaches around 2002, i'm 29 now and I hadn't had an episode in about 3 years up until about 4 weeks ago. This is by far the worst series of headaches I've ever had. Like most of you, I like to consider myself pretty tough and not a complainer, I've played sports all my life, I know what it's like to get pretty banged up...by these headaches literally make me want to die to make the pain stop and bring me to tears on a regular basis. It's excruciating to such a level that, well, I don't have the words, it's just ineffable. Usually I just thrash about on my bed or floor holding my head, sobbing/moaning/screaming in pain...until they go away, which lately has been around 1-2 hours.
I'm a student and I don't have health insurance, but I did get some immitrex from a low-income health clinic. This medicine can help but only if i take it as soon as I feel the precursor headache or shadow headaches. Unfortunately, more often than not, I'm asleep when I get the headache and it's full blown when I wake up, at which point the medicine seems to have little to no effect.
I'm writing this rather long response for two reasons, one is that it's simply a bit therapeutic for me, writing out my feelings and frustrations (plus it's nice to know i'm not alone with this agonizing condition). Secondly I'm just wondering if anyone has any home-remedies or techniques they've used to manage the pain. Expensive surgery and MRI's are really out of the question for me, at least for the foreseeable future. Has anyone had any experience w/ foods that caused or helped alleviate the pain? Any kind of movement, exercise, or anything else that they've found helps?
If so, please share. Unfortunately I haven't really found anything myself. This is one of the worst parts about this condition, for me, is the helplessness I feel...
Also, to Batch, I take vitamins daily, the ones I take have 100% vitamin D, I'm assuming this is a good source of D3? You seem to have some knowledge about that so I thought I'd ask.
Anyway, this turned out to be quite the reply, sorry for the length, thanks for listening.
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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@seanmartin45699
Are you still micro dosing as a way to control your migraines? I hope that it is continuing to help you.
Hi, @slefman. Welcome to Mayo Clinic Connect. If I understand correctly, you have similar symptoms to the original poster in this discussion, @chrisc8450, and you want to know how they are doing. Hoping chrisc8450 will return and talk about how they are doing now.
Glad you found Connect in your internet searching.
You mentioned your neurologist thought you might have a form of migraine with the pain and pressure you are experiencing. Did they say what kind of migraine they suspected? You said your symptoms do not respond well to anything. Did your neurologist prescribe you medication for the potential migraine?
Hi I came across your post after googling my own symptoms. How are you doing?
I also have a t3-t4 disc herniation, head pressure/pain and neck pain. It seems like my pain moves around often from day to day. Some days it also becomes more “white hot” and other days pressure. My neuro thinks it is a form of migraine but it doesn’t respond well to anything. Sometimes I also get “spacey” during the episodes and yawn a lot. It’s the worst honestly…
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?
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.
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.
I’ve had migraines for 40 years and a recent diagnosis of occipital neuralgia when my neck became more involved.
I’ve used Verapamil for decades but Extended release tablets only and at night to prevent.
I’ve used sumatriptan to break through a headache but recently was recommended Botox when headaches became daily.
I also increased the verapamil from 180 to 240 mg at night.
Extended release matters for me as does the form - tablets instead of capsules. The dosage matters too. We’re each different.
I endured My cluster headaches for 20+ years before seeking Medical help; too scared to find out what was going on. After a triple/nine hour event I walked into a clinic when I felt able to safely get there. I was totally played out. I was given Oxygen at a nominal rate as I was being evaluated. I noticed it's effect after 15 mins or so. Post event pain and lethargy melted away. Prescribed Sumatriptan nasal 20 mg. Next day at first Eye throb, forehead sweat, pushed the plunger and had My first "oh My God " moment after 30 mins. Took two weeks to get an oxygen prescription so I was buying OTC bottles at Walmart. Got me through... A couple months later was prescribed VERAPAMIL 120mg twice a day. I went into remission within two weeks. My dosage was reduced to 120mg a day/AM. That was a year ago. I started a new cycle last month and am starting Verapimil again at 120mg 1x/day to increase to 2x, if necessary. I am confidant this will move Me into remission again. I have so much to say for the Oxygen Therapy. I cut WAY back on the rate; from 20 lpm to 2 lpm with only a cannula and if the eye starts doing it's thing, I employ it right away and am able to get by without the Sumatriptan !
One of my husband’s triggers is alcohol so he does not drink it anymore.
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1 ReactionI 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.