Freud Posted November 18, 2021 Share Posted November 18, 2021 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. 4 Quote Link to comment Share on other sites More sharing options...
Shaun brearley Posted November 18, 2021 Share Posted November 18, 2021 Sounds like you enjoyed the ride buddy until the beast decided to pay you a visit. Glad your getting some relief tho . Keep us updated Quote Link to comment Share on other sites More sharing options...
Freud Posted November 18, 2021 Author Share Posted November 18, 2021 I wish I was getting relief. It was only one infusion and the one study of 4 patients that had infusions was 15-17 infusions before they started nasal... I spent the whole day calling compounding pharmacy’s and drs offices to no success. I’m pretty screwed. The longer I go without the ketamine at home the worse my attacks are getting. I’m fecked at the moment. 1 Quote Link to comment Share on other sites More sharing options...
Freud Posted November 21, 2021 Author Share Posted November 21, 2021 Day 3 post infusion, 2 wicked day time attacks 1 wicked evening attack and 2-3 alarm clock attacks (wicked but I aborted w oxygen fairly easily). I’m saving my O2 for alarm clock attacks or kipp 10s I can’t tough out. it’s taking it’s toll on my family, despite my warning I was going to be up the creek the were “optimists “ that a new doc down here would have some magical answer/ treatment. I’m trying to let go of my anger about it all but it’s hard when I’m getting clobbered Day 3 was better than before I started all K tx a year ago but still has me questioning wanting to live like this. !!!not in the suicidal sense but in the if I died of natural causes sense it wouldn’t be so bad. My QOL sucks and unless I am able to find a doc to help me w home use K I’m up the river... time to call north FL docs Monday. Found a few pain docs at Uf that treat CH and some other headache pain docs as well. After I exhaust these options I’ll call the few remaining compounding pharmacy’s I haven’t called yet in N FL to see if they have a referral. After that my plan is to move back some how and see my old doc. Or a new one that works w K if some one here has a recommendation. 1 Quote Link to comment Share on other sites More sharing options...
Freud Posted November 21, 2021 Author Share Posted November 21, 2021 Not giving up on infusions but just not sure how many I’m going to do until I see results or not... to be discussed w my guardian angel :-) I can’t stress this enough I am not suicidal as I told my mother. Sometimes I just don’t want to live like this any more. I’ve just hit a rough patch. Anyone try intranasal sotolol? Quote Link to comment Share on other sites More sharing options...
Pebblesthecorgi Posted November 21, 2021 Share Posted November 21, 2021 I like your idea of contacting the compounding pharmacy to locate a physician who will work with you. Can’t your doc get you a bridging prescription? Ketamine is schedule 3 so it’s like getting an opiate. Miserable place to be in. I’m not sure I’d be so stoic with the O2. Use it for all of them cause it works better and faster before the headache is fully establIshed. Keep up the positive attitude it’s tough to stay strong when you are constantly in the shit. 3 Quote Link to comment Share on other sites More sharing options...
Freud Posted November 21, 2021 Author Share Posted November 21, 2021 17 minutes ago, Pebblesthecorgi said: it’s tough to stay strong when you are constantly in the shit. Man it is. I was going to make a post “how do you prevent from becoming an absolute fecking ass hole to be around when you suffer w these attacks day in day out for any period of time?” Quote Link to comment Share on other sites More sharing options...
Freud Posted November 21, 2021 Author Share Posted November 21, 2021 Nah I think the last Dr I was seeing in NJ was happy to see me go. He thought I was risky to treat but “he knows how bad I suffer “ so he would only write me troches after I was hospitalized for staying off my meds for a couple of months to bust. I told him it wasn’t the ketamine so did my parents my psych... didn’t matter. Once you get the crazy label medical professionals treat you differently. Quote Link to comment Share on other sites More sharing options...
Freud Posted November 21, 2021 Author Share Posted November 21, 2021 He could call it in, wrote refills. But he wouldn’t do rather. Just a “good luck”. He did me a favor and wrote me 10ml of nasal spray. Max use 2x a day 10pumps each time. Let’s you treat 10Ch. That was what he gave me w 1 month of troches... said find a doc on Cluster busters... I told him it wasn’t a ketamine site and there wasn’t much on here.... So dejected and frustrated I’m now searching north and central FL. UF in Gainesville has pain docs running a headache center. One of them has an interest in CH. that’s my next plan. Quote Link to comment Share on other sites More sharing options...
jon019 Posted November 21, 2021 Share Posted November 21, 2021 Brian...pisses me off you are still getting slammed. i was amazed/impressed that the infusion center person sounded real familiar with CH and prepared. dunno, maybe you were especially detailed on intake and they listened. they only do infusion and not the ns scripts? 1 Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted November 22, 2021 Share Posted November 22, 2021 @Freud I suppose we've discussed it previously and I've just forgotten, but have you been considering (or reconsidering) DMT for the occasional abort, in order to help conserve O2 while awaiting the arrival of an effective preventive treatment? I figure if I'm aware of the abort effectiveness of DMT, you must be triply aware - sorry, pretty much just grasping at straws here. Quote Link to comment Share on other sites More sharing options...
Freud Posted November 22, 2021 Author Share Posted November 22, 2021 I have and not an option for me for 2 reasons. One the depakote and zyprexa I’m on and secondly, it is so foul I only have an interest in 5-meo-DMT. I have a source if I’m patient but it was offered to me at a friends house and my set and setting weren’t all there and I especially hate the thick nasty smoke it produces. It’s like freebasing plastic. Anyone have a similar experience? I’ve rolled it w Tobacco as well as some fine green. Still instant hack city and urges to hurl. If you reach breakthrough dose than you’re so gone you don’t cough. You just stare into the abyss or flop over. Always do seated!!! Since my receptors are fried from various psych drugs over the last 10 years psychedelics don’t seem of much use to me. And I have to come off them to dose. Not doing that any more. Unless I did find some mescaline... grasp away. Any suggestion besides a cure is welcome. Not bc I don’t want one but they don’t exist. Quote Link to comment Share on other sites More sharing options...
Freud Posted November 22, 2021 Author Share Posted November 22, 2021 Burnt through half an M tank in the last 2 days. No bueno. I need a full one every day to abort them if they respond. So it’s been a battle recently. Looking forward to my infusion at 10am tomorrow. The great abyss here I come. Lol. Let’s see if I have a repeat exit slap back hit. Quote Link to comment Share on other sites More sharing options...
Shaun brearley Posted November 22, 2021 Share Posted November 22, 2021 Enjoy the visit to the abyss buddy . Let hope you start to see some relief from it after this visit . Fingers crossed . Will be thinking about you buddy 1 Quote Link to comment Share on other sites More sharing options...
Freud Posted November 23, 2021 Author Share Posted November 23, 2021 Second infusion done, two hit so far since the infusion. Hopefully I get some sleep tonight. Still no luck finding a doc that uses ketamine here in FL other than infusion centers or psychiatrists. Exploring docs in north central FL now... Quote Link to comment Share on other sites More sharing options...
Freud Posted November 23, 2021 Author Share Posted November 23, 2021 2 hits on the overnight and one this am. Not as bad as my normal attacks. Hopefully it continues. Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted November 23, 2021 Share Posted November 23, 2021 As your "all of our worst nightmares" level of CH has stubbornly persisted, at least these not as bad attacks following the second infusion do come across as a possible ray of hope. I don't suppose a high school football cheerleading squad in the parking lot outside the clinic chanting "Let's Go K Hole!", "Let's Go K Hole!" and performing inspiring acrobatics while you're getting an infusion would be realistically feasible to arrange, but count me as a member of a virtual squad cheering you on. Rustling up some pom poms now. 1 1 Quote Link to comment Share on other sites More sharing options...
Freud Posted November 24, 2021 Author Share Posted November 24, 2021 How about cowboy cheer leaders. Lol last night I only had 2 strange CH attacks while sleeping. Strange in the sense that they were like extended warnings of a big hit coming but I used oxygen to abort... going to call Apria today and see if they will swap out tanks.... fingers crossed they don’t give me a hard time... best wishes to all happy turkey day!!! 1 Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted November 24, 2021 Share Posted November 24, 2021 Here's hoping the strangeness is a sign the infusions have Mr. McBeastBerry USA on the run! Contacting the Dallas Cowboys cheerleaders now. 1 1 Quote Link to comment Share on other sites More sharing options...
Freud Posted November 24, 2021 Author Share Posted November 24, 2021 The day continued w big hit warnings like when I first got CH. so I didn’t hold out on the Oxygen. So far I’d have to say I see some changes that are a good sign. No luck finding a doc, even reached out to an anesthesiologist in Orlando I used to work w. Unfortunately he didn’t know of any one... I have an appointment fit the first w a headache and pain guy that did me a favor/ professional curtesy and let me make an appointment without insurance. Don’t have high expectations but who knows. Office staff did tell him about the ketamine... at this point I’m not sure if I should fly somewhere to see a doc that does work w ketamine and hope they will do refills or telemedicine in between in person visits. Which my former pain doc won’t do. It would only work if they would. Fingers crossed a few more infusions do the trick. The CRNA did tell me at my first infusion that the chronic pain protocol is 3 days of 3hr infusions. I’m going to talk to her at/ before the next infusion and see what she thinks. Have to talk to my guardian angel as well... 3 Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted November 24, 2021 Share Posted November 24, 2021 15 minutes ago, Freud said: So far I’d have to say I see some changes that are a good sign YES - an actual ray of hope. 3 Quote Link to comment Share on other sites More sharing options...
Freud Posted December 15, 2021 Author Share Posted December 15, 2021 Hey folks sorry for the delay it’s been a bit of a clusterfuck lately w the move/transition But I’ve finally found a doc that is comfortable w ketamine and CH. we started w nasal spray and troches, and they do infusions which I’m going to try and work in per their recommendation . They don’t advertise that they do infusions like all the money hungry places here. They recommended I do infusions to kick back the beast so it responds more to the at home ketamine. ... they are more affordable as well. Found a pharmacy that charges 1/4 the $ as I was paying before... I can breathe again wooo hooo!!! 7 Quote Link to comment Share on other sites More sharing options...
Shaun brearley Posted December 15, 2021 Share Posted December 15, 2021 Happy days . So glad buddy 1 Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted December 15, 2021 Share Posted December 15, 2021 YES - man that sounds encouraging - it's as if Florida may not turn out to be so bad for your cluster treatment after all. Well now that you're getting to this point anyway, with smoke hopefully clearing from going through the drawn out ringer from hell since relocation. 3 Quote Link to comment Share on other sites More sharing options...
Freud Posted December 21, 2021 Author Share Posted December 21, 2021 A week back on the ket and already my CH is much better!!! Decreased frequency and intensity for some hits. Slept through the night last night... 7 Quote Link to comment Share on other sites More sharing options...
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