Hello…My name is John Fletcher and I have had chronic cluster headaches (suicide headaches) since 1973…I was 14…
Kind of strange that I can remember my first attack like it was yesterday and it was a 10 on the pain scale. So incredibly intense was the pain that I was certain I was dying and had ruptured a blood vessel in my brain behind my right eye. I had no idea then that I was destined to live with these horrible headaches on a daily basis for over 35 years.I had a three year remission in 1979 and it lasted till 1982 then right back to being chronic again however I also did have a couple of years of 7 month cycles. Doctors and Neurologists had no idea that it was Cluster Headaches that I was having and was actually told I had some form of “Super Migraines”. Many medications and all seemed to make them worse.
These are just some of the meds I have tried over the many years to stop the pain…Lithium, Ergots, Codeine, Prednisone (steroids), Verapamil, Topamax, Depakote, Triptans and the list goes on. I just got to the point early on because no one could give me a proper diagnoses after a year of many doctors and tests that I just realized that I was either going to have to live with these things or not. I chose to live and by no means has it been easy.
I had a successful career as a commercial fisherman, commercial diver and a 100 ton master of oceans captain for over 30 years. I went around 27 years without seeing another doctor and no medication. That was so hard to do but I think working on the ocean saved my life in a way by making me cope with this kind of incredible pain. So many years of pain from daily attacks that are just so incredibly painful that I have suffered severe depression for many, many years. Battling daily one attack at a time to get through each day.
In 1992 I diagnosed myself after reading a great deal about all the different primary and secondary headaches and CH was spot on down the line with all the classic symptoms of watery eye, extreme pain in my right eye, drooping eyelid, plugged up sinus on right side.5 to 12 attacks daily lasting 30 minutes to 2 hours average, almost every day year round with very few days of relief a year. The feeling of a knife being pounded in and out of my eye with extreme force is as best I can describe them. Rolling on the floor, banging my head into the wall or door knob, pulling out my hair, screaming and crying are the symptoms of a cluster headache on a level of a 10 on the pain scale. I was diagnosed several times since by neurologists stating that I had chronic cluster headaches.
In the beginning of 2011 I finally went online to find out about cluster headaches and what I could do to stop the pain as I had given up on traditional medications because nothing ever worked for me. I found some great support groups that were very knowledgeable on CH and I was at my wits end as I was getting up to a dozen attacks daily and most were all 10’s on the pain scale. I found a regimen using vitamin D3 that stopped my CH in three days after 37 years of chronic CH but it eventually wore off after a year and a half and I was right back to getting a dozen attacks a day and very powerful attacks that my oxygen would not touch in most cases.
I had been reading about “Busting” from www.clusterbusters.org. website for a few years and had always been very curious about it as the success rates for stopping the pain are astronomical at over 90% and I had always thought that would be my next attempt to stop the beast and end the pain. Treating cluster headaches with hallucinogenics is proving to be the best most consistently effective alternative treatment known and is being advocated at the annual “Headache on the Hill” in Washington DC.ClusterBusters Org., patient advocates and some of the most respected neurologists in the country are also advocating for funds to research new and promising alternative treatments for cluster and primary headaches such as hallucinogenics, vitamin D3 and others as well as traditional medications and treatments.
I started the treatments about Jan 1st 2014 and used 1.5 gram doses of Psilocybin mushrooms and did this dose every five days and did it six times before I went completely cluster headache free again but it has been three months since my last dose and I have been completely CH free! This is only the second treatment in 40 years that has helped me and only the second to get me to a complete CH free level.
I just can’t say enough about it and being CH free has completely changed my life. I now for three years have devoted my life to helping sufferers and trying to make a difference with this horrific disorder.I keep reading so many great success stories of folks that have used one of the different “Busting” methods and now I am one of those success stories!… To learn more about busting treatments for cluster headaches and to bring yourself up to date with headache advocacy please see www.clusterbusters.org.
This is my website… http://www.clusterheadachefoundation.com
that was a beautiful story John and im glad you finally found a genuine place like clusterbusters that led you down the path to recovery and inspired you to help others as they did you.. im personally moved by your story and wish more people could read this story and understand what you and others have to endure each day that the rest of us take for granted.. wish you a pain free life from here on out.. glad I met you , your a really great guy and a true fighter whos spirit refuses to give up.. i wish they would do a national story on you so the rest of the world would finally wake up to whats going on out there and stop being so ignorant to the treatment of clusters with conventional meds verses things that actually work like magic mushrooms 🙂 you a wonderful person for doing your part … 😉
They did the same for me. I was a suffer for the past 10 years. 7 of which were chronic with up to 15 attacks or so in a 24 hour period. I wouldn’t wish these monsters on anyone and I hope people read this and can open their eyes to the different forms of relief. When I see people speaking badly of those who take this route it really upsets me. Anyone in this much pain will do whatever it takes to get that relief they need. I use to always “joke,” if someone told me eating dog turds cured their cluster headaches, I would probably give it a shot. LOL. Big drug companies don’t always have the best answer. Humans have found ways to medicate themselves far before any of them were around and will continue to do so in the years to come. Very proud of you. You look super happy in your picture and you deserve every pain free minute of every day from here on out.
Thank you very much and I am so happy to have helped folks with my story. A rocky road for sure and I still have the disease just being controlled very well with tryptamines.
What are you currently taking. Mine came back last week and I need to find a new doctor. I’ve already had 5 since you replied this morning. I was doing so well it’s so disappointing.
Usually 25 mg of sumatriptain knocked them out in 15 mins but I’m having to take 75 or more to get rid of them in an hour ?
5 MeO DALT, a newly discovered synthetic tryptamine that is very effective. Created by Alexander Shulgin (87% success rate) & the Vitamin D3 Anti-inflammatory regimen…84% success rate are a wonderful and very successful combination alternative treatment for cluster headaches. Study well…:))
http://www.clusterheadachefoundation.org/the-5-meo-dalt-process-vitamin-d3-anti-inflammatory-regimen-alternative-treatment-therapy/
You must be very careful Brandon with Sumatriptan and the max daily dose is 12mg. It was not even created to use that max dose every day and can cause serious heart & respiratory issues. It was created for Migraine which is not multiple daily attacks so it was never tested for every day long term use at that daily 12mg max. I always tell folks to use it for the bad attacks with consistent breaks…Use with extreme caution…
http://www.drugs.com/imitrex.html
I was assuming you used the injections . There are a few forms but please read up in detail on it’s long term use…:))
No pill. I don’t use it much anymore now that I take the natural route 😀
Wish you the best!
Hi John, im from Chile (sorry for my english). My wife is currently taking sumatriptan and I want to know more about the mushroom therapy. Do you have any webpage to consult about the mushrooms grow?
Well done! Most well- established people seems to have something against drugs, including my father who has cancer and refuses CBD- treatment.
Disappointing news from my end…Proving to be a refractory chronic. I have had CCH going on 43 years and this disease keeps finding a way around everything. I was refractory on all the traditional treatments none ever worked. Alternatives like the tryptamines such as psilocybin and 5 MeO DALT have both stopped working for me since last June. 5 to 10 attacks every day and night. Trying the D3 regimen again but I have not given up on tryptamines as I am going to take a break from them and hopefully will help me again like they have so well in the past.
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