Hemicrania continue with PPD testimonial.
First, a little background: I’m in my forties, but take after my Danish grandmother so people always think I’m twenty years younger than I am. I live a clean lifestyle, eat a very healthy diet with foods from local pastured-raised farms and Whole Foods, and jog and work out daily. It was unusual for me to have anything but a minor health issue. Then, on August 7, 2019 I suffered a concussion to the back of my head, and my nightmare began: as I write this I’m going on two years of daily hell. with hemicrania continua and PPPD.
After numerous MRIs, CT scans, and doctors of every specialty, I was diagnosed variously with mal de debarquement syndrome, persistent postural-perceptual dizziness, chronic migraine, and vestibular migraine with underlying hemicrania continua, all of which (except the chronic migraines) are rare conditions. It was so bad I considered suicide a viable option if I could not find a treatment that would work to free me of what was living in hell: there was no relief, from the moment I woke to the moment I fell asleep, nor during the nights. I tried everything: vestibular rehabilitative therapy (which did work initially on the PPPD), pharmaceuticals, cognitive behavioral therapy, chiropractic, acupuncture, meditation, herbs, supplements—you name it, I tried it. I gave each one a very good chance, spending months at each of them.
I looked up books with methods to commit suicide and put them in my shopping cart on Amazon. (Don’t judge anyone who commits suicide—it’s not about you, it’s about them trying to deliver themselves from a nightmare, whatever it may be. I have never been depressed, depression doesn’t run in my family, I worry very little and have an optimistic outlook on life, I laugh a lot, and still my condition almost drove me to suicide.)
My final effort yielded four possibilities: peripheral nerve decompression surgery (yes indeed, that’s surgery on my head), indomethacin for the hemicrania continua, treatment with medically studied psilocybin, which I found in news stories and on forums at clusterbusters.org: a website for cluster headache sufferers, and a very high-dose Vitamin D protocol specifically for cluster headache suffers and migraineurs. I did them all.
The indomethacin was the first thing that showed a real result. By taking a high dose (225 mg) of it daily I was able to improve my functionality by about 50%. It was still a nightmare, but at least it was a better nightmare.
I met Jessica on the clusterbuster forums, where she generously gave her advice to others on treating their extreme pain with psilocybin after she found it worked on her own hemicrania continua. All of our interaction was remote because of COVID, but perhaps we will get to meet in person soon.
Fast forward to today, about three months after Jessica began working with me. From a 225 mg daily dose of indomethacin, I’m now down to 50 mg daily, and anticipate coming off of it entirely.
Her guidance was immensely valuable. For one thing, without her, I’d have followed the standard advice on psilocybin dosing for cluster headaches, which would have been almost useless for me. With Jessica, I knew how much to take to be effective with my condition. For another, I was a complete novice, and Jessica helped me with (mind)set and setting, answering all my many questions very patiently and candidly. The first time I took a psilocybin dose, I felt very prepared and never had a negative experience.
What it’s like to dose with psilocybin for relief of hemicrania continua and vestibular migraine, PPPD, etc.? For me it takes about six hours for a regular dose and then a few hours after that to recover. The next day, my eyes tend to get tired by the end of the day earlier than normal. For a macrodose I do recommend taking about Zofran along with the dosage, as other anti-nausea medications were ineffective. My first few experiences with the macrodoses needed for my condition were neutral, and the next three were very positive: almost spiritual / cathartic, helping me in my healing in another dimension. Once I am completely symptom-free, Jessica recommended moving to a maintenance dose. (For a maintenance dose, I can take a single capsule overnight and never feel any effects.)
I never thought in my life that I would ever (a) have a condition like this or (b) a condition that requires medical psilocybin dosing to put heal it or put it into remission, but I do. I recommend Jessica without reservation to anyone who needs to heal and recover their lives from a chronic, refractory, and distressing condition like a constant headache and PPPD.