Hi all, I am new here. I try to cut my story short.
I have been "living" with Cluster headaches from 80's. For a ten year period I was prescribed all kinds of different pain killers and finally I was operated by removing some blood vessels from my body in a kind of "let's try if this helps" surgical operation, it did not, it made CH worse. My CH started as episodic, cycle lasting 2-4 weeks.
In the nineties I read about CH in a magazine and took it with me to my doctor and got finally diagnosed. At this point I was eating hardest painkillers like candy. Of course they did not help (stop the attacks).
I told my doctors I had read about using oxygen for this attacks and I was laughed, told it would not help. Today I have o2 with me 24/7 - would not be alive without it.
(Sometime after year 2000 I also told I had heard of use of melatonin in CH, same response - lot of laughter, "don't be silly")
So. Mainly through the nineties I was on verapamil to prevent attacks and cortisone to end the cycles. By each passing year verapamil dose needed to be bigger as well as cortisone. They lost their effect slowly but steadily. At this point my cycles lasted for months.
After year 2000 CH got worse year by year, more medications, most of them prescription drugs. I think the medical field has tried more or less 50 different medications in me. A LOT of epilepsy drugs and hardcore painkillers. Triptans (Imitrex) came in the picture. Cycles were lasting half a year or more.
Then I finally turned chronic. At this point verapamil dose was 960mg per day. And may I point out my electrocardiograph was never checked. Triptan use was over the edge, since I received 6-8 attacks per day. I was on cortisone endlessly, for months in a row.
And at the end I ended up in the hospital. To receive cortisone in vein, 1mg at a time. All kinds of injections (occipital nerve blocks, ganglia stellatum blocks) and other treatments had been tried with no success. At this point I did not pretty much walk anymore with my own legs I thought I would die.
All the suggestions I got from doctors were - in my point of view - crazy; deep brain stimulator, dehydroergotamine or opioid treatment.
I had nothing to lose really, I went home and slowly stopped my medications and battled with just o2.
I had read about magic mushrooms, received them from my friend when I had been weeks without medications and they eliminated my Cluster headache. I was "cured".
(to be continued in the next post - not so short I see)