Jump to content


Advanced Members
  • Posts

  • Joined

  • Last visited

  • Days Won


Everything posted by Freud

  1. 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.
  2. 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.
  3. 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.
  4. 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?”
  5. 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?
  6. 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.
  7. 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.
  8. 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.
  9. Ahh, so it was a slip and fall? I thought it was from steroids. I know it’s real rare. Hmm bad assumption sorry!!!
  10. 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...
  11. I feel your pain @Dallas Dennyand @CHfather I too have a bulging C5&6 as a result from my scar contracture and looking down through surgical loops 10+ hrs a day for years. I took a break from practice bc I couldn’t take the pain. I was referred to a really good spinal surgeon and he said it’s bad for my age but if I started w surgery now I’d regret it bc they need to be revised. So the later you start the better off you are. I finally got my burn scars revised and the bulging improved (I did do PT to no help). Sadly in between my 4 and 5 surgeries I got CCH. The neck pain improved. But now my scars need to be released again and I started getting neck and shoulder pain, numbness in fingers, dropping things... I asked for trigger point injections and it was the best decision I ever made!!! They do my neck and upper thoracic muscles that need it. First round helped some, but the next month I did it again and wala my pain and everything got markedly better!!! Now it’s my go to when it flares up. No more epidurals for me. I highly recommend trying it. They use a numbing agent of their choice and kenalog (steroid). I try and stay from the roids after @FunTimesand @Pebblesthecorgihad their hips done. I really avoid it. But for me the resolution of symptoms w 2 months of injections is worth it for me. I hope the pain is getting even better. Hopefully my experience helps you... Thinking of you buddy!!!
  12. best informed consent I have ever heard!
  13. 2.5hr car ride later saw a worthless NP and again they don’t use ketamine and wanted to push Emgality and get this “physical therapy “!!!! Mom threw a fit and they at least refunded us the money for the appointment. The Pratice manager wanted to refer us to a friend that has ketamine clinics but I’m staying away from any crooks these people know.
  14. Update i have another Neuro apt tomorrow and they said they use ketamine when indicated. I made them ask they swore they did. It’s down in miami again so another long car ride. I spent the day calling every pain doc in an hour radius and some further. The one I found that called me back and said they would help me. Shocked me when I told them I was self pay and they told me they don’t do self pay only insurance!!! Never heard of such a thing. I begged them to ask the doc to extend me a professional courtesy and that I was desperate to find some one to help me. They said he would see me. That appointment is dec 1. .
  15. Yup @CHfatherthats what I read...
  16. If all I could get was a nasal cannula I’d either fill up a bag like the redneck posts or I’d put the cannula in my mouth and fill my lungs. I know a cluster head that does that...
  17. The facial sensation can be your CH. CH is always changing. My CH began 5 yrs ago w strange facial sensation and tooth pain. A month later was my first hit/attack....
  18. Most of us use M tanks. Huge cylinders. Get friendly w your delivery person. It goes a long way. I have always used Apria, tipped them randomly when I can and asked for their Cell #s. I txt them when I am running low and always get 3-5M tanks per refil. They have seen me get an attack and have had other CH patients. They knew about busting and have all become friends. I’m terrified since I moved and haven’t called them yet in my new location. Will call Monday as I’m out of ketamine and nursing my tanks. Ran through half a tank last night. I usually go through 1/2-1 big M tank a day. If I use E tanks one tank is good for 1-2 CH. at 25LPM. The mask and high flow will do wonders for stopping an attack...
  19. Thanks @Bejeeberand @Shaun brearley!!! Got slammed last night and this AM...
  20. Any thoughts on Emgality? Haven’t seen much from chronics and Emgality here let alone episodics. @BostonHeadacheDocany thoughts?
  21. Update bad news. Saw new Neuro today and he doesn’t use ketamine like his office staff said he did. I’m up the creek w no paddles. Getting my self used to not having any aborting options other than the 4 M tanks I’ve been saving for the days you just want to die so hopefully I don’t enter that head space. instead the new Neuro wanted me to try Emgality. This was after me telling him I’ve had CCH since 2017 w only one month break in the first year from mm but couldn’t repeat results. He then says @are you sure you have CCH you get 6-10+ attacks a day? “. I almost lost it. This was after listing all the failed treatments I’ve tried and the ones I won’t try. He gave me a garbage bag full of Emgality (small bin) full of migraine starter boxes. So that’s 2 120mg auto injectors that I have to play w one to only get half a dose out of and into me each month. I have not heard anything good about success in CCH Pts. They abandoned the CCH arm of the study for Christ sakes. He didn’t want to hear it. Says so I guess I’ll see you in 3 months? And he took an empty troche packet w my script. To talk w his partner about but wasn’t hopeful. the hunt fir non psychiatric at home use Ketamine continues. Purdue Pharma Feck U. Screwed up all of pain management. Freaking infusion only clinics are everywhere. I’d try it if I could afford it.... got my oh shit helmet on!
  22. I will hire an attorney if I get rejected but as you said it’s not enough to live just at or above the poverty line. I have no doctors now, aside from the ketamine and psych meds I have no major issues other than a bulging C5. I have no medication side effects. So no doctors to fire. I just moved and have an appointment w a Neuro listed on this site. I don’t need a change to my meds except increasing my ketamine/ adding intranasal. Sounds like you’ve been through the ringer. I think I’m going to look for a job training dogs. I apprenticed a dog trainer years ago and it seems like from all my options that would be the best w my CH. I have had 3 good days in a row. Slept 12+ hrs 3 days ago. First time I’ve slept for more than 5 hrs in 4 years. It’s usually 30-60min at a clip abd I get whacked. I think it’s bc I used up my ketamine early and suppressed my CH. I really want to try an infusion but that’s unaffordable.
  23. Freud


    I have a cluster friend who has constant shadows. For her oxygen can abort them most of the time as well. Have you tried that?
  24. Freud


    For the hits that ramp up quickly and don’t respond quickly I have noticed as others have pointed out that technique plays a huge role. If you’re just getting hit and ramping up rapid shallow breathing is fine. But when the beast is raging it’s important to take big deep breaths and hold them for 5-10sec. Forceful exhale all the way, big deep breath, hold....repeat. That works for me most of the time for the stubborn hits.
  • Create New...