Chloe Chriselle
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Hey everyone wanted to drop by here and also wish everyone a wonderful Christmas ! Also wanted to sneak in a very heartfelt thank you to all the mods and everyone who contributes here. I'm the partner of an episodic CH-her who was in the depths of hell last year over the course of a 15 week cycle (normally 4-6 weeks) usually with cycles every 18 months or so.. I came here in sheer desperation and despair and you all welcomed me with so much encouragement and guidance... it's been over a year and he seems to be doing well so everything crossed it continues. Here's to 2024 being the year where a genuine cure and/or readily accessible treatment is available to everyone here with this condition - you are all some of the toughest most resilient people out there.
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Thanks so much @BoscoPiko!! That's so helpful I'm always so interested hearing about other people's experiences and aside from those out of cycle attacks which still isn't great, it's good to hear it didn't cause any significant (further) adverse reaction (!) I agree how you mean that any infection or inflammation of sorts knock the system around. CH is such a mysterious and frustrating disease as it is I just can't imagine another factor complicating it all. I understand everyone responds differently and after reading so many differing stories, so keen to understand if there's a commonality here (or perhaps I seem to be only picking up on stories of COVID making CH much worse...)
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That's actually a great thing @spiny !! Maybe a halo effect from the D3 Regimen!
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Hello all. It's been about 3 years since the pandemic descended on us and I've been hearing anecdotal tales here and there and wanted to get some thoughts from this forum. I've always wondered the effects and impact COVID had on CH-ers (both ECH and CCH), for example: Did having COVID have an effect on CH? Did ECH-ers turn CCH after a bout of COVID? If not, did it affect the frequency / duration of your cycle etc? For CCH-ers, was there any effect on you? And probably more notably: if you were previously successfully busting, did having COVID affect the efficacy of your usual Vitamin M / L busting methods? (I realise there's probably a dozen more points in relation to this but hopefully this will get the ball rolling). Would be really keen to get people's experiences on this.
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Hi Chloe, I am thankful you read my post. I hope this may be an answer for you as I too have had my life nearly destroyed by CH. please understand that Ketamine does not need to be a last resort medication as there are clinics here that are starting to use it for CH and many other difficult to treat disorders. I wonder if there are any clinics where you are located. Most of these clinics are treating Severe Depression, Anxiety and Migraines that have not responded to other treatments and they are getting amazing results.
The Clinic name:
Reichbach Center
https://www.findpainrelief.com/
941-213-4444
Please call and talk to Dr Reichbach, he would gladly speak with you. He is not like so many other doctors I have dealt with, he genuinely cares and understands what we are going through. Knowing now what I know, I will say this, I believe this will help you. I do not believe I am unique because Dr. Reichbach has seen many CH patients have the amazing results that I have had. You are in my prayers.
Sincerely,
Laurie S.
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@BoscoPiko Thank you so much for your input... we were about to give up on the D3 Regimen after doing (several) loading doses initially as a preventative. The cycle has well and truly started now so starting up another 12 day loading dose of 50,000IU D3 / daily but unfortunately to no real success. I'll take a look at the Full Monty you and Batch speak of. Very early in an episodic cycle so the daytime attacks are minimal but really getting hit with the nocturnal attacks.
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Taurine supplements as a preventative (and abortive)
Chloe Chriselle replied to Chloe Chriselle's topic in General Board
Thanks @FunTimes appreciate it. It makes me wonder if we added Taurine as another daily supplement could that help (rather than using it as emergency abortive). -
Taurine supplements as a preventative (and abortive)
Chloe Chriselle posted a topic in General Board
Hi everyone, pf wishes to you all. I wanted to ask whether anyone is supplementing with Taurine daily as a preventative? I see many talking about it as an abortive (via an energy drink etc) but wanted whether it was worth trying as a preventative? I'm testing the D3 regimen (still tweaking after 2 years on it which hasn't seen success so far but one wants to keep hoping) and thinking if adding Taurine is worth while / harmful / hopefully someone has some insight. -
Bryan I'm really happy for you truly! I was just reading through your earlier messages, and your experience sounds exactly like my partners (he's the one who suffers from these). 20 years ongoing, usually cycles last 6-10 weeks, and was meant to land about August-September. They get as bad as they can get: Kip 10+, throwing Imitrex and every drug possible at it to not much effect. He also started the D3 regimen 6 months ago like you so it'll be really interesting to see what happens as he just started having shadows in August. Please do keep us posted.. honestly after 20 years if this works or even lessens the cycle / severity, this would be life changing thank you to Batch! Stay safe and don't give up, cheering your progress on from here!
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Hi Bryan this is really promising to hear! Your usual cycle of 6-10 weeks / daily episodes sounds the same as ours here! Can I ask did you simply stay on the 10 000 IU D3 + all the cofactors a day throughout this whole time (and therefore had these great results for this current cycle of mild headaches). Hoping it stops right there and really happy for you!
