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Hi all, as you know I’ve had no luck finding a doc in FL to continue the ketamine I was in as an abortive before I moved here. A kind family member has offered to pay for me to try infusions, as it is all the rage here and the centers are everywhere. Yesterday was my first infusion. I was exhausted going into the infusion and fell asleep just as it started. They started me on “high dose protocol” 2mg/kg (limit is 4.5mg/kg). Fir my skinny ass that was 200mg over 45 min. 2x they gave me 10mg IV push bc she said I shouldn’t have been talking. Lol. This sent me into K hole land. Quite the experience (feels like you’re kind of outer body and part of the essence of existence if that makes any sense). I started to become more aware of the experience in the last 15 min as I got slammed w what would have been a kipp 10 and I had to pee like a race horse from the half a liter of fluid given w the infusion. I said to my mother who was sitting next to me “I think I’m getting whacked. The CRNA came in turned the lights on looked at me and said “wow you can really see it in your face, you look twisted, your eye is drooping and shut and it looks real painful!!!” She had a lidocaine soaked q tip for an SPG block ready and I put it all the way back to my SPG (I’ve had many and it’s not for the faint at heart to get it all the way back there). It didn’t abort the attack but I was still fairly effected by the infusion that just finished and I asked them to disconnect me so I could run to the bathroom. We left shortly after that, I was still getting hit but the pain was filled by the ketamine still in me. I’m guessing it was REM sleep that triggered the hit. Last night I got hit 2x after the infusion then my normal 5 hits every time I hit REM sleep. I’m going to try weekly infusions and see I if I get results. When I started at home Ketamine a year ago I was on a little over a gram a day. Now that was intra nasal and oral. Bioavailability is less than IV but the total amount of ketamine per day for days on end suppressed my CH to less hits per day, aborted the attacks, and my hits were now 45minish if I did nothing instead of my normal 3 hr hits. Since backing down to 600mg oral only a day my hits got bad again. Now without the at home K fir about a week now my hits are back to pre ketamine status... will keep y’all updated. Next infusion they will do 3mg/kg. She also added lidocaine and Mg to the infusion to see if it would help w the attacks.

...you already are....

Thank you Spiny you are seriously awesome. The eye twitching is easy to deal with in comparison to the thunder brain so I shouldn't have complained. I did have a great ride today granted I had to work my mare for a good 30 minutes to rid her of the piss and vinegar but it was so nice just to be back in the saddle. I owe many thanks to this site and all the compassionate folks on here as you all are what kept me from giving up.. Much love to everyone on here and I hope someday I can return the favor.

Yup. The eye twitching started for me 4 or 5 years ago. I also use Magnesium Taurate as it seems to be easier on my stomach and it appears to make a difference. No eye tremors this cycle.

*Update* I received my non rebreather mask in the mail and used it today at 10lpm and aborted an attack in about 12-15 minutes. Went through 1/4 of an E tank but small price to pay to abort one!!!

Happy to see your post Shaun!! As I've said on many occasions here over the years, "One more cluster soul out of the darkness and into the light!" DD

Everyone has covered it pretty darn well Shaun. I find utter delight in helping one person become pain free. Each of them are special. And I consider them all friends. Stay safe, happy, and loving. Life will be great!

....so glad ya found us, so glad a place like this exists...we are standing on the shoulders of giants here at CB...and i look forward to the time when we can talk about the "old days" when CH was still a thing.... and now is a usta be....

@BoscoPiko, When I started the D3 regimen many years ago for the first time, the magnesium was not friendly with my stomach. I spend an inordinate amount of time in the john. Batch recommends magnesium chloride, glycinate, oxide, citrate or malate but they are all just binders for magnesium. I understand that different binders may affect how well it's absorbed into the blood stream. Different types of magnesium binders have reportedly slightly different effects and some work as a strong laxative. I read that magnesium taurate seems to be well tolerated with digestion so that's what I went with. It's essentially magnesium with a taurine binder. I'm convinced the taurine that is in energy drinks such as 5 hour and redbull has some kind of effect on clusters and so that's another reason I went with it.

I have had eye twitch on and off before clusters started. Lasted a year once. It was so bad I had women think I was winking at them. Lol. Stopped on its own and randomly comes back...

.....yee-haw and sounds familiar....play with the flow to dial in. M-60 tanks doubled that abort #/tank.... and reduced visits to the O2 shop. though the E's are quite portable and easy to roll around in a cart. used to love me some the smell of a new mask....associated it with the GOOD that was happening...

If I ever figure out what two keys get tapped on occasion and wipe out my writing, I am going to rip out that one key!!! I want to hear of you going out and doing all of those things Bosko!! You will post about that again too, right? You have come a long way since you first arrived here. Kick the twitch, don't sweat it, and go play!!! Hugs!!!

Nice! It does feel good to have tools to fight this mess. All anybody needs is a ray of hope. I'm very glad to have found CB as well. The next cycle is going to get it's arse whipped!

I think it depends when you start getting disabled by the beast. It also depends on concomitant conditions. You defiantly have to be strategic to deal with this condition. Disability is an option for the chronic or frequently episodic but to navigate that quagmire likely requires an advocate. If you had the wear with all to make it to the level of a PA (not easy) I would work as hard as possible to recover that license. There are jobs working as a reviewer for insurance companies or in telemedicine which allow one to work at their own pace. Good luck. Life with clusters sucks but you have to play the hand you are dealt.

....you want anything with minimum 100-120 mg caffeine and 1000 mg taurine (thought to boost caffeine, some are intolerant). do a google search of ingredients. red bull was the first and is highly advertised (so is expensive) and actually lower levels of energy ingredients than most. i haunt the grocery outlet stores and get brand name product for less than $1 ea. the 2 oz varieties way portable, easily/quickly downed, minimal sugar (reg versions have OUNCES), less of the typical gacky taste... ...totally agree with CHfather re O2 concentrator...not pure O2, not enough flow, EXPENSIVE (usually a lease), suspect older versions even less efficient as they heated up with use....

Hi AC...welcome... ...i know it's counterintuitive, but 3 lpm (especially mixed with room air) can and does use more oxygen (with lower success rate) than much higher flows (recommended 15-25 lpm). i could kill a hit in 5-15 minutes at 8-12 lpm provided i started at the first sign of a hit ...preceded with a quick downing of an energy drink on the way to the tank. with a non-rebreather mask got 2-3 aborts per e-tank... best jonathan

Yo CE...so glad you found us... talking, sharing, or just plain ranting with folks who understand and care can be incredible "medicine" all on its own......and then ya got spiny! kept reading that truly wonderful post to throw in something...but there weren't no room. Golden!! ...all i can say is that it makes me sad and frustrated that somewhere along the way there was no OXYGEN given. guess it goes along with the clueless misdiagnosis, but every medical reference i've ever seen (from the 80's on) acknowledged that O2 was THE recognized abort. safe, fast, easy once dialed in, ways of making it inexpensive, and none of the nasty side effects we all know so well with the migraine drugs thrown at us. may not work for all, but does for more of us than anything else...save maybe triptans. you've never been given, Imitrex (sumatriptan), Zomig...or any other triptan..or they didn't work? i'm shocked. OXYGEN can be a game changer...saved my sanity, perhaps my life. That should be your first step.... best jonathan

Welcome to the community cursed . So glad you found us . But also sorry you had to . Spinny has given you a great intro to this forum as she always does . She is 1 great woman . lits alot to take in but you need everything you can get to beat the beast . The people on here are great they will give you great advice and support , and their is always some1 here willing to listen whenever you need to ket off a little