Leaderboard

Ok, sorry for the time gap, but as we all know, that when we have any PF time we take advantage of it. Yes I am a hot mess atm, but that's the life of a cluster head. lol So, before I get to what I've been up to, I will start by saying again, THANK YOU!.. Most of the time, it feels like no one can hear me (us) without misguided judgment. We are all fam here, even if we disappear for a spell or two. And CHFather, you are a guiding light of hope for so many here, I cant even imagine the amount of desperate souls you have given hope to. Kudos, my man. Ok, let's get down to brass tacks. Xboss, I feel for you brother, 100 days is a rough stretch. My first introduction to trex shots turned me into a chronic going from a lifetime of about a two month cycle to two years. Then I forced myself to back off of using them every time, tapered down to nothing and the cycle broke a week later. Now I use them sparingly, especially to avoid rebounds. Now, I had requested and old script of 02 with my new doctor, only to be told that he couldnt do it (stricter rules these days, I guess) and referred me to a neuro, who I was kinda rude to back in 2014 because I refused her suggestions of carbamazapine and some anti seizure meds, I guess I was expecting a better answer than the one I got. However, I will discuss nerve blocks, emgality, 02, and botox with her when i see her next week; aaaand possibly an apology I guess. Although, Im sure shes used to cranky CH patients, by now. lol. Ok, all of this is going on right as I am finally starting the career that I have been working towards for almost a decade, and I LITERALLY started my first day today, as a medical lab assistant here at our local hospital. Its my foot in the door, while I finish my radiography and imaging degree within the next year and a half. THIS lifelong torture demon we live with is my driving force to get into healthcare in the first place....and I finally made it! NOW, I DONT WANT TO RUIN IT BECAUSE OF MY DISEASE! Like many other jobs in the past. My manager really likes me and has the low-down on my condition, and I promised to manage it the best I can until the cycle is gone. I had restarted the D3 regimen minus a few ingredients, and It seems to raise my BP (Oh yeah, Ive become hypertensive in the last year) which then triggers one every time. So I backed off. I detoxed 5 and 5 for mm, and will again in a few days, BUT, I think I may have found something of interest. I stumbled upon some studies conducted on B1 (thiamin) deficiency and CHs, and head tremendous pain relieving results, with high doses tapered up to 750mg a day to break the cycle, and back it down to 600mg a day for maintenance. (with NO DETOX! I took 100 mg last night and 200 this morning (with food). Going for 300mg tomorrow, and have only had one little shadow. I will keep you all posted on my results. Thank you Vajenna, you are right, D3 really does work under the right conditions, because it has always done wonders for me in the past, until recently. But I plan to get back on a lighter regimen when this cycle is gone, along with properly spaced dosing of mm. Jon, I appreciate you! That, was a comforting response, and I thank you. And je3wook, OMG I felt this!!! Hang in there. I have weak points quite often in every cycle actually, but something else has always seemed to keep me going, even before I had kids. I wish you a painfree break soon no worries, we have some incredible and compassionate minds on the case. We will find a cure soon!! Love you ALL!!!

.....talk it out Brad...we're an understanding audience so ya don't have to explain stuff....but collecting and expressing your thoughts helps to focus the mind and relieve some stress...it's really good medicine....been there. best jonathan

@Bejeeber Admittedly, there have been very few clusterheads that have tried nitrous as an abortive so as far as working for other people we really don't know yet. But it works damn well for me

...well...that explains why the arrogant prick anesthesiologist blew me off when i PLEADED with him to forgo the epi for my own "head" surgery...he at least coulda told me the above.... .....good news/bad news from this clusterhead if ya can't talk 'em out of it: did NOT trigger a cluster cycle...did wake up to a one-off 6 hr kip 8+ hit ...you know it's bad when you are scaring ICU nurses.....drained the hospital O2 to no avail and they wouldn't give me triptans.... ....if i was yu i'd keister a Zomig....

Update on B1, still taking 300mg am and 200 pm and D3 20k daily. I had a bad ch day last weekend, stress related, to much going on with work and life. The recovery time was less than in the past. Batch had a post about coq10, curamin, vitamin c for more immune boosting. So, I added this to mix, seems to help increase my energy level in the evening. Amazingly, I’m still mostly pf, heat and humidity would have trigger before B1 and increased dose of D3. Hope your days are pain free, peace

1. I take 300 mg 6 am and 200 mg 1 pm and another 100 mg if needed barometric pressure or shadows. I take B1 every day. 2. 500 - 700 mg all at a once caused diarrhea, 300 - 200 easier on my system 3. I settled on a 500 mg dose for me, with some days adding the 100 mg. I did try 700 mg for 5 days, it did not make any noticeable difference. I was not sure about side effects to B1, so I started with lower dose, hind site 300 mg am - 200 mg pm a day should be fine to start with. I'm not sure what the dose for your daughter will be, but you can feel the difference when you take the extra 100 mg about 25 minutes later, most of the time the shadow went away. Hope this helps