swiftlaw

Joshua: Any Emgality update?

Fireface: Any updates on your Emgality?

I am using this to stay connected with the folks that just finished the Zoom support meeting, Faith, Eric. Charles and Jorge. Than you all so much - it was great for me and we will do it again. Respond to this thread so I know we have connected. TomSwift

Well Brian, I'm not going to go looking for those posts I'm going to ignore them. I refuse to believe it. Aging out is one of the great hopes and I won't allow you to destroy my vanity with the truth!!

Brain on Fire: Can you point to the debunking of the Aging Out theory. I just turned 70 been here for 30 years.

S.E. I live in the Northeast at ground Zero for Lyme. I have Lyme about every 2 years and am a CH for 30 years. It is no joke. The symptoms you describe sound exactly like Babesiosis - more and more common with Lyme diagnosis. I had it. It came on very quickly - bad body aches and serious soaking sweats high fever and headache ( not a cluster but bad) , It often resolves on its own after the symptoms dissipate but it is treatable and needs to be seen by a doctor who has the right chops ideally a infectious disease specialist. It has clinical similarities to Malaria in that it is a parasite in the blood cells. If you want to know more or discuss reach out to me https://www.columbia-lyme.org/babesiosis

Love this - My #1 is; Reef early.

Ugh. Interestingly, they have come back not gradually with an acendance to the peak of the cycle, but at full speed -full on - pedal-to-the-metal with its talons out and fully engaged, headbangers, KIPP 10 Screamers and just after the Winter Solstice. I was so happy I really thought I had it licked. It's the beast it's The wretched beast.

Well, here's my news. I've been taking the CBD religiously and as I've said before I've been paying free for a long time, but the beast is back is broken through whatever barrier I had going on and last night I had three screamers kip tans one two three in a row all night long. I should have known I guess, but still grateful for the pain free time. So as twisted melon said, I have no idea what was working and what wasn't. Next. Back to my acupuncturist for electro acupuncture with white laser on the neck. trying to stay away from the sumatriptan but sometimes there's nothing left for it with the cave in and take the conventional meds. So disappointed.

This is my post. This is an update since August when I first posted this. I said, "I have not had another attack since April. This is the first year in 10 or more years that that has happened." November now and still PF. I take the CBD in a dropper under my tongue every day - I simply leave it in my car and use about 1ml a day The strength of the CBD varies a lot so in one bottle a ML might be 250mg and in another only 50mg. Read carefully and adjust your dose till you are conformable. Front load the dosage - ie double up the first 3 days. The oil is pleasant in a natural surfactant like a seed oil and I spend approx $60.00 every month. Not only has this aborted the April 2018 cycle but it carried all the way through today. I am still skeptical a bit as the Beast has penetrated everything else over the last 30 years. I will become confident if I get through say, May of 2019. In the meanwhile again its been over 10 years since I had any relief and my cycles are like clockwork virtually to the week every year. CBD oil is working for me. My thought is that it may not break a cycle in progress ie when the talons of the Beast have already been embedded in your head, but with my experience when I was in the very first episode of an impending cycle - I have been completely PF for 8 months. I will check in again in a few months. Merry Christmas to all my Clusterheads.

Hello gang: I need to report in. I'm Checkin' in like Gunga Din. As I posted over a year ago: "However those of you who have let me whine here for the last decade or more know that I keep the [ triptan] injections handy - and I take a healthy dose of Verap. every day all year - I have the big big O2 tank in the hall all year - I have tried a visit to the Portuguese wizard, busting with shrooms, Chinese doctor and herbs - nothing but licorice water for a week, water water water, exercise rapidly, ice on the carotid artery, steroid dose pak, Cluster vitamin regimen, Opioids, benzos, advil, melatonin, a Shaman in the Navajo tradition, Hot water pads, every other god dam thing. In the end; every single cluster cycle required absolute submission to the Beast in varying amounts before I can see the light. " By chance, this year in April which is the inevitable early part of my annual cycle, my mother-in-law brought me a bottle of CBD oil made from Hemp - no cannabis no THC . Having tried all of the crazy stuff above I am open to anything. The beast came knocking one evening in April it was the first of the season that was more than a shadow. I assumed the position on the floor and got my ice bag. Then I took a full ml. of the CBD sublingual. The attack aborted in minutes. I used that small hemp oil vial in a bout 15 days. My research led me to understand the "Entourage Effect " of cannabanoids. (I don't like to drop links in this board so Google it) I got my medical card and bought a CBD compound which is "Whole Plant Medicine". Not enough THC to even contemplate the tiniest buzz, but medially, enough to keep the CBD in concert with the other the other therapeutic compounds in cannabis. I have not had another attack since April. This is the first year in 10 or more years that that has happened. I know CH Father has commented that the results and reports on CBD are all over the place and this I see as I have looked on the boards. However - having been here since the early days of the "old board" I just had to let you know of this amazing outcome. Now - I have felt the beast trying to break in on a few occasions, which to me only adds credence to the results I am having being attributed to the CBD. A PF summer -- who ever heard of such a thing ? I hope to keep reporting these positive results. Wishing you all well. TomSwift

Wow, I've hadclusters for 26 years.

https://en.wikipedia.org/wiki/Rapastinel Sounds promising but nothing official on its commercial release I could find.

Re visiting this issue. I have been careless with the Triptan injections. Here's why - I cycle once a year now - up to 12 weeks starting in early Spring. So, all last year I did not discontinue my Sumatriptan injection prescriptions. I stockpiled. The cycle started in late April this year (2017) in June I had a very rare chance to take my 14-year-old to London and Paris on a ten-day trip. I loaded up my suitcase with the injections and hit at least every day - sometimes 2 times a day and also used the Imitrex pill as a prophylactic - each for 10 days straight. The first rebound, when it came, was so horrible I could not stop myself from using another injection to fight back the rebound - then when the CH broke through the Imitrex barrier - it was like white light - I was screaming out loud - a new level of pain and I know it scared my son a lot. Stupid ? OK, but I did not want to have to bail on my boy while in the Eiffel Tower or interfere with his first trip to Paris. And I had not been thorough on these boards on the side-effects or actually read and digested Denny's post. Now back 3+ weeks and the rebounds seemed to dissipate after I took them on cold turkey with no meds for 2 days a break and then 2 more days. Now 2+ weeks later I have developed a nighttime hit every night at 2:30AM at KIP 4-5. These I can put down with ice on the carotid and maybe some caffeine, however I have developed a permanent all day shadow and a sore neck now for 10 days. I have not been taking the Imitrex but I feel like the medicine has me in a long-term downward spiral. This continuation of the cycle is terrifying me - it will stop right ?