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Everything posted by Freud

  1. Like @FunTimessaid. I often stay up to avoid more alarm clock attacks. For example tonight I went to bed after my regular 9pm ish attack. Woken up by 2 attacks and I decided to stay up to avoid more attacks. This usually prevents a few attacks. However it’s a 50/50 shot of avoiding what I call the first attack of the day my usual 6:00/7:00 attack.
  2. To top it all off. I go and see the pain docs NP. Tell her how poorly I’m doing and that he said to my father he would add the nasal spray. Office called me just now to tell me he’s not changing my meds!!!! I’m stumped and devastated... may be the next doc will help me. Otherwise it’s looking pretty bleak.
  3. I should refrain from posting during a hit. The typos and lack of grammar I’m sure bothers some people. Lol
  4. Still smoking, good to hear from you @dmlonghorni owe you a call. They are my go to to see if I actually fully aborted an attack. If I do the oxygen and ket combo and am able to abort but didn’t stay on O2 long enough that post O2 smoke will bring me from pain free shadow to a kipp 8-10 in a few drags. I put it out then hoo on O2 and repeat. If smoke doesn’t trigger attack then I go back to sleep... lol are you suggesting I become a quitter? And take away my insurance policy of premature sudden death from a widow maker (aka Lmain or LAD MI). And finally fulfill the cliché former cardiac surgery PA dying from heart disease). I do need to quit. Not because I want to change the odds or desire to stop but for the simple fact that it’s unaffordable to kill yourself slowly these days. I’ll have to rely on dad insisting on eating the same high cholesterol Hungarian food for dinner every night. all kidding aside did you quit? Cold turkey? How’s the noggen been? Beast leaving you alone. A little birdy told me you had tried intro nasal Ketamine. But I didn’t get any other info after that. Good news!!! My father uses the same pain doc as me and he explained that I was off my psych meds waiting to bust and that was the reason for last hospital admission. Not the intranasal K and he said he’d either switch me to or add the intranasal at my second to last appointment tomorrow and then see me in 2 weeks before we move as well as reach out to docs he knows out there to find us docs. This way I will have a fresh months worth of meds and week to two weeks of oxygen to travel down with and bridge appointments. For mom and dad and Medicare it’s easier most docs take it. For me I may have to pay out of pocket cause medicade sucks! Dad has a laundry list of docs he needs. So as I told my X today the shit cloud that follows me dropped a golden turd. Lol
  5. FYI Fe+ aka iron deficiency is the number one cause of restless leg syndrome...
  6. Eating is one of the few pleasures I have left. Lol. I have been suggested to try keto, this diet that diet. Unfortunately I am chronic and it’s not just a matter of getting my cycle to end... you’re diet is interesting how did you come up with it? thanks for thinking of me
  7. No I get how you made that mistake. Could have done it myself.
  8. I was referring to michael Jackson and his illegal use of propofol by his cardiologist. I’ve had it one too many times in the operating room. But there is no role for it w CH...
  9. Glad your getting some in between time as @MoxieGirlputs it.
  10. Aww cute senior lab. I’ve got a 13 yo male Chesapeake bay retriever...
  11. Thanks for all the info. I’m on zyprexa and depakote... I don’t really suffer from depression. Other than I have no interests and a touch of loss of appetite. However I always gain wt from the meds. Just lost 35lb I intended to bc I was way over weight. I don’t wake up sad or anything. But then again 90% of the time I’m woken by an attack and say OXYGEN... and don’t think of anything other than bathroom and oxygen. Doing the pp dance while on the Oxygen sucks. For now I’m staying on these meds unless I happen to find mescaline. Then I’d detox and try it... MM and L seem to not be helping. Going to tweak the vit D Oxygen and ketamine. Best was when I had oral and nasal. I hate having to take them. They taste vile. But you also tire of pumping it up your nose all the time. So switching back and forth helped. I need the MJ juice to sleep. Or a huge Thorazine shot.
  12. @kat_92yup I’ve tried it w different degrees of success. Batch has been amazing trying to help me. My CH doesn’t stop or get better until my D is @or above 150-180. Get cessation after 200. This is pretty high to maintain and keep PTH and Ca in normal ranges and I need frequent labs my insurance won’t cover or find a doc comfortable pushing the limits. I still take it and batch has contacted me to try a new D and see if it helps. There is a doc in FL that specializes in high dose D if I recall. Will find out more info today from @xxx.
  13. Thank you everyone, I promise to respond to all in the next 24 hrs. It’s just been a rough go and getting everything ready for house closing and moving. Had my first decent day in a while today. Then the hits started at 6:30. So I at least got my daily stuff done and didn’t get tortured like I have been. I’m taking a few day drug holiday from the ketamine in hopes of reducing my tolerance. I haven’t gone through such a dark period in some time and it has never been as tough on me in a year. Oddly I don’t feel depressed, I’m sure it has to do with the fact that I’m taking 18-24g of ketamine a month. I’m not walking around w self deprecating thoughts or I used to be kind of thoughts. Just life is a real torture and I’d be out of my misery if I died of natural causes. But today I haven’t had one thought like that. I credit you guys for that mostly. Thank you for all the support!
  14. I wasn’t intending on excluding episodics. But I get tired of hearing episodics repeatedly telling me (while I walk them through growing or dosing ) “I don’t know how you do it” (which isn’t exclusive to CH, I’ve been hearing that about my burn recovery since I was 14...”. It’s bc we don’t have a freaking choice!!! Lol. But I do take some comfort in knowing I’ll get hit all the time rather than guessing and worrying when I’ll get hit. If you’re one of the kind souls that has said it to me please know I’m saying this laughing and smiling.... it sucks being any kind of TAC patient let alone any form of CH. we’re all in it together. I never accept when others discredit their pain vs mine. One should never have to endure all I’ve been through. Pain is pain. CH pain is next lvl but none the less.... hope you get the point.... all are welcome. Just don’t want some off the wall BS “I’ve found a cure stuff. As the late Barbie and I used to laugh going through the 65 pages of hits when searching cure on this site. I think if anything is banned from the site it should be the word cure until medically speaking there is one that’s accepted and peer reviewed... thanks for brightening my day folks. Good to finally meet you jeebs
  15. Thanks all, I’m too spent to really respond but will later today or tonight. My day started at 3am when I hit my third alarm clock and decided not to go back to sleep when I finally got it stopped bc I get hit less that way. REM sleep is my biggest trigger, what a crock of shte!!! At any rate I’ve been staying away from avoiding sleep but I had a 4hr dentist appt starting at 8am... one more kipp 10 an hr later and smooth sailing until I sit in the chair. And then my worst nightmare started once the local w epi was injected (happens 50%of the time to me) kipp 10 starts doc is doing a dental implant and then a bunch of crowns if I can tolerate it. My eye swells up, full on nose clogging, tears running down my face turn bright red from the pain and I’m instantly sitting in a pool of sweat. Doc is real empathetic being that he knows what CH is cause his sister just came down w HC and he knows CCH is much worse most of the time. He offered to do it another day but I say forge on. Work had to be done and family payed out of pocket for all the work and were off to FL nov 1... I suffer through hyper metabolizing the local don’t bother to ask for more as he’s drilling into my mandible/ jaw. Few min later he offers me nitrous gas aka laughing gas. I say sure and opt for it over 8lpm of O2. Previously I got the gas but he’s real stingy with it compared to my old dentist. He turned it up a bit higher and it helped. But he had to take it off for some of the work not to distort my face or something. It took me from a kipp 10+ to a kipp 8. Which is a big improvement for me. None the less. I have to go into a family event now in Brooklyn and it’s going to be a long night. Thank you all sorry I’ve been out of touch...
  16. There was a whole big first paragraph which didn’t copy and paste. Can’t edit the post will retype later. Bottom line is CH nailing me w kipp 10s. Lost most of the progress I’ve made. Will contact mod about error msg when I try to edit and repost... too burnt out to keep trying...
  17. Any help is appreciated. This is my 6th year w CCH and I’m almost back to ground zero. I talk regularly with a psychologist am not suicidal (couldn’t do that to my family) but if I had a massive MI from chronic smoking and poor diet or natural causes I’d be at peace. Which I’ve told my psych and he doesn’t blame me or have any advice but to listen. My parents are as understanding as any one could hope for but they have magical thinking and think a new doc in Fl will have some magical cure that some of the “top experts “ I’ve seen haven’t offered. Or that they will just stop suddenly just as they started. I know that’s happened to some episodic sufferers but I have no realistic hope of that happening to me. Gamma knife is not an option I’m willing to consider due to risks and it being experimental as well as my insurance wouldn’t pay for it. I just feel like a burden to my family and am tired of this torture. But like I said I could not bring myself to harm myself out of love and respect to my family but when they’re gone I would look into euthanasia as I’ve read others in Europe have done. I verbalized this to my parents and they lost it. I feel terrible for letting them know how I feel because it upsets them so much just watching me suffer. They say they understand how bad I’m suffering but they only know how bad it looks and have no idea how bad it hurts, how demoralizing it is... Unless you’ve actually felt what a kipp 10 feels like you just have no clue how bad it actually is. I’m pretty tough when it comes to pain having been desensitized from it at 14 suffering 3rd degree burns to 20% of my body, 15-20 surgeries over the years, cervical neck problems, migraines... but the past few months and especially few weeks have been torturing the shit out of me. I was so hopeful when the ketamine showed so much progress and decreased my frequency, intensity and duration. But I’ve lost 75% of the progress I’ve made. Busting doesn’t help at all and is not really an option since I’ve decided not to come off my psych meds any more due to risk of being manic or PTSD getting triggered and committed (fyi they don’t give you O2 in the nut house, have to fight to get my ketamine and most places won’t give it to you even if you supply it, won’t give you trex injections and when they do it makes my CH so much worse). I’ve sat in psych intake told them I was starting an attack and would start screaming and crying and when it did they just thought I was crazy and acting out. Nothing like 10 security guards coming to restrain you mid kipp 10, strapping you to a bed an jabbing you with a bunch of injections. I’m looking to hear from chronic suffers that have been in similar situations advice is always appreciated but I’m fairly sure I’ve exhausted all realistic options. Aside from ketamine infusions and nasal spray which I’m going to plead w my pain doc for next week. It will be my last time seeing him any way so it’s just a to get me through the move and I’ll be without until I find a doc willing to help me in FL. Sorry for being all over the place with this post, but I just finished my 6th alarm clock kipp 9-10s since going to sleep and I’m spent... thanks in advance.
  18. Denial is a bit@! Too. My parents have verbalized several times the may be a new Doc when we move will have some magic treatments that will stop my CCH or make it better. I am/was shocked they really believe that even w the caliber of Docs I’ve see. With my medical background, that when I tell them there is nothing left besides radical brain surgery (my opinion of Gamma knife), and they think a new neurologist is going to “save me”! my biggest fear is being without O2 and ketamine. I dosed recently and since then I’ve been getting worse. Probably unrelated but not slap backs. It’s been too long. I’m taking a break from dosing and sticking to Vit D, ketamine and oxygen unless another CCH vet has a suggestion...
  19. Try Apria. They are just about everywhere as well.
  20. There are several brands ranging in quality that go to 25 LPM. I can tell you that when I switched it was a godsend. It cuts your abort times vastly. Not all of my CHs respond to oxygen but I will never go back to low flow less than 25. They cost 35-65$. I’ll get the name of the company I use when I get home. I prefer to use a good US brand instead of cheap China products but they cost a bit more. At 10lpm I get no relief. I use Mtanks and have had great luck w Apria. Befriend your delivery driver and try and get their cell number. My insurance switched and for a while I just call the dude and they deliver. Never got a bill or anything. I’m scared when I move to FL I’m going to have a problem but I’ll just have to wait and see. Apria has a vacation/ travel service but since COVID they will only exchange tanks you have and not bring you new ones. So I’ll be driving down I-95 w a car full of M tanks. At one point I had over 20 M tanks at my house and was going through 5-7 tanks a week. Now I use 1-3 since starting ketamine. Once you switch to 25 you’ll never go back! I have posted the link to the co I bought from in the past if you search my post hx.
  21. Happiness is that moment when the kipp 10 stops! Otherwise I rely on my dog.
  22. Get plugged into healthcare for oxygen and start the vitamin D protocol ASAP. Give more information on dosing past and present. hope to help
  23. Freud


    Hi all I am alive and well. My PTSD ended up getting triggered in Dallas as I thought it might. Sorry for my long absence. Thanks to all that sent their love. I will be back on the boards and this thread w an update. Short version is I am now having 4-6 kip 7-9CH a day. My D peaked at 277 w no bump in Ca or PTH. (I was about 150ish before I was admitted unfairly by my psych thinking I was manic and not triggered and I knew it was going to happen so I loaded w 1.5 mil units before my admission. My D spiked to 277 w that and my CH were gone for a bit. But as it burned off they came back as expected. ). I’m going to get w @Batchtoday and go over numbers to figure out a more aggressive load and burn schedule. I am also dosing w vitamin L... happy trails folks love me
  24. Hi all, I have some great news to report! I am on my way to being PF and getting my life back thank to so many of you. The vitamin D protocol is doing most of the heavy lifting so to speak. I’m coming off of my best week in over a year but who’s counting. I live in the moment... I will give a full update ASAP. I am still figuring out the best way to utilize the ketamine. However it is helping a ton as well. I personally have a super high tolerance to most anesthetics. Therefore. My starting concentration although a moderate dose will probably be bumped up a bit after discussing my usage and results w my doc. I promise I will make a more detailed post ASAP. I think ketamine should be a weapon in the arsenal to treat uncontrolled CH. I don’t find it intoxicating unless I take a big dose 20+ sprays... 10 sprays at (50mg/ml or 5% solution) and I start to get some help. As it is a dissociative (I have not dissociated yet...aka k hole). At 4-8 pumps I feel mild distraction from the CH. usually enough to take an edge off. However if I have down time and a bad CH I will go to 10-20pumps. This is not what I recommend for everyone! If you do try it. Start low and go slow is my advice. Most people do not enjoy being dissociated from what reading I’ve done on recreational use... but for a kip ten I say bring it on. I have only had one Kip 10 since starting it =-). BBL with more info. looking forward to seeing y’all in Dallas.
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