Freud
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Posts posted by Freud
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When you go from doing heart surgery to not being able to do basic tasks of daily living fir 5/6 years w only a one month break after your first bust and never getting much results since. W 6-10 attacks a day it takes its toll on you. Vitamin D helped fir a short period then nothing. Try again w D. Never gave up but you need a Dr to follow labs and insurance that will pay fir it. so far I haven’t given up I’m still here. Wanting to die and during are two different things. I don’t harm myself like other do (punch walls, smack head in the floor or walk to knock themselves out, drill holes in head or shooting self in head only to survive and still have CH is not my style). But when your CH is as bad as mine your brain wanders. I’ve accomplished a lot in life. Save countless kids w congenital heart disease. Adults as well. Serious girlfriends, bla bla bla. I don’t judge others here, I listen and try and help. Some people don’t believe in euthanasia but I’ve practiced medicine fir over 10yrs before I had to give it up. And some of us are DNR and people just don’t get it. (Do not resuscitate). Early in my career I couldn’t believe young nurses in their 50s would get DNR tattoo Ed on their bodies. But I get it now.
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I’m not sure what your whole story is but we don’t all suffer the same way or have the same pain. Euthanasia is not the same as suicide. And it’s not in my country. You can’t just tell some one who’s chronic not to think about it. Sadly life isn’t that easy. I’ve been through more kinds of pain than most people should ever have to endure. Had my skin peeled off every day when I was burned fir months in end. My CCH is that bad. I don’t give up I’m exploring reasonable options. I wish it was that simple. I have living supportive / crazy family. But no kids just an aging dog. No dependents otherwise.
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On the subject of gamma knife has any one tried it or know some one that has for CH?
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Sorry it made you sad. Just trying to figure out how to make a living and pay fir my meds and have some quality of life.
on the subject of euthanasia I was reading a story of a guy who was in a country that had euthanasia and he applied fir it if gamma knife didn’t work. There was no follow up on his outcome though. He had kids and a wife. So sad.
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Not that I rationally think it’s anything other than the worst pain in medicine that is not a sign of something more serious. But at times like these (up spike in severity) I can’t help but wonder. It feels like my head is going to explode and you just want to die.
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Any one else have a hard time accepting that CH hurts too much not to have brain damage? I know the science but emotionally my brain doesn’t want to accept it’s benign...
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I want trex but don’t want to go to the ER
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And as it turns out tonight is a migraine CH night. I hate the combo at the same time!!! It’s a curse some one out on me in a previous life. Lol
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I get usually 4-6 migraines a year w clusters at the same time. I don’t keep a chart like you @MoxieGirlbut last year and this year my CH has gotten out of hand as sept came and went. I feel you in the migraines. Some how I’m able to fall asleep w them but wake right up thinking damn migraine woke me up again, but know it’s just the first 39 Sec of opening my eyes and whomp cluster attack. Forget about putting a ketamine in my mouth instant trio to hug the bowl. I’d try and stay on a monthly dosing schedule if you’re able to see what that does. I don’t have 25 a month and I was wishing I had a trex to stick myself w. BHD has suggested that most of the suma if not all of it should be out of your system in 24h. Risk of serotonin syndrome is low and just bust (that’s my opinion not BHD). See what that does. It’s all trial and error. I don’t have line any more so DM me we can catch up.
best wishes from this side of the pond!
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44 minutes ago, Person101 said:
Did a gram and 1/2 of B+ shroom tea yesterday morning . I have been suffering with fibro... And I cant explain it but I feel amazing tody this is the first day in many weeks /months / years that I felt this good. And have felt normal....
In my 20s the day after I tripped I felt like a new man, like my brain reset. Not so much these days but I used to love it. Bigger doses but micro dosing does give you energy and ability to focus. I would try microdosing 2-3 days a week first. If I saw no change I’d switch to sub recreational doses. Micro 0.2g-0.4g. Sub Rec doses 0.5-1.5G. Full on psychanaunt dose 3.5-5G... Never tried or looked into a ketamine infusion but some pain docs say it resets your pain receptors...and could help w depression that usually accompanies FM. MM can have a great effect on mood in my experience. Ketamine oral and nasal as well. Don’t get me wrong I have plenty of bad days. But I’m convinced the only reason I’m not walking around praying to die is because of them.
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Holy crap this is my biggest fear moving!!! Have you tried Apria? I always make friends with the delivery drivers it’s been a life saver. At one time this winter I had 20m tanks at my house in case the storms were bad and they were busy. I tipped them randomly when we had something to give but they would still have done it for me reguardless. One guy bought me a fishing pole and waiters and told my mother he was getting me out of the damn house. We became friends, unfortunately he passed away this year. I get their Cell #s and txt them when I’m low. Fir a while when I called Apria would only let me get 3 m tanks at a time and they would have to deliver 2 times a week. So the drivers would bring 5 at a time. I’m using about half to a whole M tank a day right now and am crapping my pants after reading this. FL is almost as bad w COVID as TX.
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Ohh and I’ve got my new Vit D on the way and a lvl tomorrow. Last lvl was 94. Not my target if 150 but at least it’s nit in the dumps.
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PS my hat goes off to all you with kids/ families. I don’t know how you pull it off.
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Sorry if this is a depressing topic or is triggering but how do you earn a living while dealing w no sleep and the beast striking at any time. Any suggestions appreciated. I used to be a physician assistant in heart surgery before bipolar and CCH struck. My certification has lapsed and that’s off the table for now. I have a huge gap in employment, don’t get call backs for medicine device sales/ support specialists jobs I’ve applied for (thought I’d never go to the dark side). Can’t focus to retake my boards, probably couldn’t get a license until I have a year of mental health stability (screwed myself trying to stay off blockers and busting). PTSD gets triggered then eventually manic. They would give me a ling acting drug w over a year elimination time so I waited it out then stopped my meds to bust. It was a vicious cycle but a risk I was willing to take. But not any more, this last go around I was sure all blockers had cleared my system and the busts showed no appreciable impact sadly and costed me a hospitalization. As well as lost me the intranasal nasal ketamine and almost oral. But doc knows how bad I suffer and didn’t cut me off. I only recently got to explain I was off my meds as he would not discuss changing my meds without it triggering a big “NO, you got hospitalized!!!” Thank god he’s not a heartless man, but pain docs have a way of making you feel like you’re drug seeking when you’re just trying to get through the day. I agree opiates can cause just about anyone to become drug seeking behavior, just for the physical addiction/ withdrawal let alone psychological addiction. However after being in opiates in and off since I was 14, I can say the ketamine is nothing like it. No withdrawal or physical addiction, just a desire to be able to abort my CHs. Currently it takes ketamine and oxygen to abort. If I don’t have both then it’s taking 200mg of ketamine to abort most but not all. And unless I get on oxygen before the pain passes kip3/4 oxygen will cut back the pain some but won’t abort. Oops I digress.
tldr (too ling didn’t read): How do you earn a reasonable living w CH?
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Does any one have experience w the south FL “trusted docs”? I made an appointment w Dr Kobetz, his secretary asked. And he does work w ketamine. It’s $525 first appt and 165$ each follow up. Hopefully he writes refills and you don’t have to go every month unless there is changes to the script. The other doc Dr Wealer or something like that was 850$ first apt and didn’t say how much each visit was after that. He doesn’t take insurance at all!!! She was talking him up and said he “would change my life”. I highly doubt he has a magical solution that @BostonHeadacheDochasnt found for me so far besides ketamine and oxygen. I told this to my father and he started w the magical thinking. I pissed him off bc I told him it is so frustrating that he and mom think some new doc is going to have the “magical cure no one else here knows about.” I told him that’s what the vit D and busting are for most people. He didn’t take kindly, tension is high here as we are almost a week away from closing and moving.
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Err had this long post and I’m getting that error msg. So frustrating!!!
ling story short doc called in 10ml of nasal spray randomly so that was good even though it’s a small amount it will come in handy for my kip 10s at my dentist appointment. Hopefully that was a one week supply and he will write me a month at my visit next week before we hit the road to FL.
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Thank you, I may give it a three month try but I don’t know how I’m going to cut everything out completely. Complete remission is crazy. I have almost triple the attacks the average in the trial had :-(
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I tried it, and as usual it doesn’t work for most chronics. I gave it away to some one from here who was episodic and got relief from it. I think the getting your life back is more for mm/L and Vitamin D. As they stop the attacks fir a period of time. The gamma core is just an abortive... and again like Denny said in the US it’s $600/month.
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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.
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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.
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I should refrain from posting during a hit. The typos and lack of grammar I’m sure bothers some people. Lol
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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
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FYI Fe+ aka iron deficiency is the number one cause of restless leg syndrome...
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3 hours ago, Mastermerls said:
I am a damaged by you, Restless Legs.
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CCH or episodics w ling Cycles, how do you make a living
in General Board
Posted
Nah it’s more like you have the courage to fight and aren’t selfish to do that to your family! Please try and find a doc for oral and nasal ketamine. Have you tried busting or the vitamin D protocol. It works for most people!