Hi CB forums.
Im a 33 yr old Male from Mass. Ive been watching this board for a few years on the recommendation of my Dr. to hopefully find some alternative options.
I was diagnosed with S.U.N.C.T. (SUNCT-Short-lasting, Unilateral, Neuralgiform headache attacks with Conjunctival injection and Tearing) for about 4 years now and have found no relief. I get about 15-30 attacks a day that last from 30 seconds to 4 minutes at a time located above my left eye and on extremely rare cases above my left eye. Ive been told that Cluster headaches are a close cousin to what I have and is more researched and common than SUNCT.
It began slowly around the age of 27 with an attack once every few months, then it became once a month, then everyday until I decided to speak to a Dr about it. It wasn't always 15-30 attacks a day, as it was less when it first started but hasn't increased much in the past 2 or 3 years. Its been pretty consistent at 15-30.
There is no "trigger" nor are they seasonal. These happen everyday, every week and all yr round. Temp changes, wind, foods, smells, light changes, elevation, sleeping or awake, these attacks come and go randomly.
Some times I will have 2 or 3 in an hr, sometimes 10. Sometimes I can go an hr or two, sometimes 3 without one attack. Occasionally I can tell when one is coming. Its almost as if I can feel my brain moving inside my head before an attack and within 20 seconds or so the pain comes.
This effects every facet of my life. My sleep patterns (haven't had 1 full night of uninterrupted sleep in years) are bad. I normally dont get more than 3-4 hrs combined of sleep a night for no more than 45 minutes at a time before attacks wake me. Thus my body is constantly tired and lacking energy and I was a very active sports player/worker before this happened. When Im not getting attacks my mind and body is so stressed from this "condition" that Im unable to calm down and sleep in the first place. It affected my job (driving) until I was put on full disability 2 years ago. Having my eye water and forcing the palm of my hand into my eye area over and over and not being able to speak clearly during an attack draws many strange looks from people who don't know me.
Ive been to numerous doctors in and out of Boston (Mass General, UMass Worcester, Brigham and Women's, ect) with little to no relief and even less answers. Ive tried over 40 different medications from O2, female fertility drugs from which I hoped to get a side effect to help which didnt work, numerous pain meds, which never stop the pain but only numb the body, Pregabalin, Gabapentin, Topiramate and Verapamil, $100 nasal sprays and Botox (twice) amongst many others. Im hoping to find an answer or help instead of having Neuro simulators installed in my head in hopes of getting some relief but even that procedure is another shot in the dark as Ive really exhausted most RX options it seems.
Ive also tried RC seeds as suggested by this site and its users to no avail. I began with 20 seeds and a week later I was up to 100 in one drink (that stuff is absolutely gross by the way) and didn't receive any effects, positive or negative.
Thus far the only relief Ive been able to find is from Marijuana and that relief is very little if any. If i happen to be having attack while smoking, the attacks aren't as intense, or painful. If I had to put a number on it I would say that it takes off maybe 5%-10% of the pain away. Just enough to notice but not nearly enough to be very effective. Mind you I am using "street" Marijuana which means I don't know how much measured THC is in each "bag" and Im pretty sure every "bag" is different stuff which doesn't help much.
So I guess this is my way of asking for help and my way of putting a small part of my story out there as it seems there isnt any1 else out there to speak with that knows about SUNCT other than Drs. Hopefully this post has helped some1 or maybe some1 may have a suggestion or two for me.
Thanks for your time!