- This topic has 38 replies, 6 voices, and was last updated 1 month ago by JanyOliver. This post has been viewed 2362 times
- June 7, 2018 at 11:46 am #5825Anonymous
This is my trial Rx.
NIGHT-TIME FORMULATION (Sedating)
DOMINANT TERPENE: MYRCENE (SEDATING) > 60%
OIL: Coconut Derived
THC: 26.3 mg/ml
CBD: < 1 mg/ml
DOSE: 0.1 ml to 0.4 ml – titrate to 0.4 ml in 4 days.
Once titrated to 0.4ml, 10mg softgel capsules may be substituted
ALL TERPENES REMOVED
OIL BASE: Sunflower
SATIVA BLEND (> 80%)
THC is 30mg/ml, CBD is < 1mg/ml
Dose: 0.1 ml to 0.4 ml
Alternate version contains PINENE (stimulating) (approx. 35%)June 8, 2018 at 2:06 am #5861JasonKeymaster
I was in Oregon two years ago and tried a sleepy and a stimulating variety as an experiment. No clue what exactly they gave me but the stimulating one was on par with an amphetamine in terms of wakefulness but I was quite stoned at the same time. I tried two sleepy varieties. One very high in CBD with almost no THC and the other I’m not sure what contained. The CBD variety was somewhat sedating but it carried over the next day. The THC/CBD sleepy one was even stranger. It was briefly stimulating and then after awhile it knocked me on my ass. If it were legal in my state I’d probably try the stimulating one again on a weekend just to give myself a break from stimulants without the nightmarish fun of going cold turkey off of stimulants.June 9, 2018 at 7:24 pm #5873Anonymous
Depending on the dose, you can’t stop or taper. You can only do that on low dose.
I have HUGE warning labels on my medication … DO NOT ALTER OR DISCONTINUE WITHOUT MEDICAL SUPERVISION.
Xyrem is like that. In low doses it stimulates by hitting excitatory receptors — in high doses, it hits inhibitory receptors that trump in. The response on that CHANGED. They warned me about the stoned aspect of using POT. At least my way, it’s all legal and you get the exact dose because the concentration is checked.
I haven’t tried any of it yet because I need a friggin stimulant, and I asked that a-hole of my physician for real PSG home equipment (multi-channel) during the titration process. How the hell do I know what the optimal dose is? I’m not awake. It has to be based on EEG to get the right sequencing and length of time in each stage, minimize spontaneous arousals, and so forth.
XYREM and only XYREM proved itself under the wires. The sequencing was still abnormal. All REM was pushed to the back end. No rotation. It reduced spontaneous arousals to 1 per hour whereas on LUNESTA there were TEN and my hypnogram looked like a friggin BARCODE instead of a staircase. I can’t do it by feel.
It did not affect daytime hypersomnolence at all, but there was an odd rebound effect from the CNS depression — like a spring springing back. It’s like an Adderall crash in reverse, but doesn’t feel like Adderall. It has a slightly sickening feel to it. An antibiotic which jammed the GABA receptors took away the fatigue. How’s that for throwing a monkey wrench into the equation. The neuro’s jaw dropped because the respiro was thinking out of the box. He’d say, hmmm, what drugs cause insomnia?
The IH people from Australia are SHARP, and they taught me, and I taught that gook of my physician. Tolerance to a benzo will jam the receptor subunits (the hypnotic ones – GABA) in a low dose. Then, add stimulant. You gotta plug the drain and turn on the faucet. The goal is the synaptic level — ie., the sink has to be full of water.
Adderall is a friggin catecholamine mimicking agent in one way, but literature states the opposite. Nobody knows exactly how that works. Xyrem was a fluke. The doc that did it, is a complete WING NUT, according to his colleagues. I wanted to go see him, but I think he retired. Meanwhile Stanford is studying FISH … ZEBRAFISH! Pack it up Stanford. You FAILED. After 48 years of research … NOTH ING.
On PSG I will go direct into REM. How do I know? I know. Didn’t happen five years ago. So when I went to a neurologist who was doing research, I had to give him the finger in about 6 mins. My pulmno knew more because he consulted with EMORY and experts in Europe.
I have a DOUBLE DIAGNOSIS, TRIPLE.
I am Narcolepsy 1/2 and IH. It’s a spectrum disorder like autism. It’s one syndrome with overlapping features, but the IH that responds totally to flumazenil is different in etiology.
They can never fix this. I know it too well now, and it made me depressed. Orexins are just part of the equation. The rest is still unknown. I responded to amp-based stimulants in pediatric doses — now, I would have to go over the 60mg MAX. I never thought that could happen.
Nicotine is fecal matter stimulant. That’s not normal stimulation. Normal is you don’t feel artificially jacked up, and nicotine really sucks. Caffeine is better. Ritalin and Modafinil are trash, although mod works with X well. Only the dextroamphetamine or Adderall compounds are any good in approximating normal but tolerance develops. Those that are immune have an unknown gene — that’s why I tell people like JF to shut up. The majority develop pharmacokinetic or dynamic tolerance to it. She’s lucky. Don’t make the others feel bad.
I was supposed to go into a clinical, and they wanted me to drop the sleep med. ARE YOU MAD? Everything will go to sh*t if I do that. It was a JAZZ PHARMA clinical. I go see a neuro and he wanted a cold stop for 3 weeks. I told him where to go. Called Stanford … CONTRAINDICATED. Who is this doctor? And Ferret says neuro neuro neuro. Half of N patients develop apnea — a respiro is best to check that and respiratory depression that X might cause. It takes SIX MONTHS for the receptors to normalize and a cold stop is a BAD IDEA.
What a dumb double-blinded study.June 9, 2018 at 7:41 pm #5874Anonymous
The craptastic sleep takes its toll after a while. That’s why X or that other drug are necessary. But X doesn’t produce normal delta waves and the other one — the friggin spindling — there isn’t any. Tiagabine?
It lip syncs sleep and they are so stupid they’re fooled. The brain is an electrochemical system, and they’re looking at just FOUR EEG channels. FOUR. My TV has more channels.
The chemical part is not seen. No drug can produce the on and off signaling the brain does — like a thermostat. Orexins go on and off during the day — they do squat at night. They fire briefly on transitions to REM … a flicker. The VLPO is somehow damaged and nobody knows what is going on there. We simply cannot look at anything in isolation. It’s a complex neural network which nobody fully understands. Nobody knows what causes the stage shifts to occur — no drug can do that because there’s no computer program to signal cell groups to go on and off in tandem. Whatever controlled that is damaged.June 9, 2018 at 8:04 pm #5875Anonymous
Tiagabine (spelling?) — that’s the name of the other one. There were anecdotal reports of certain drugs working, and those reports go back to 1970. They are not amphetamines … they are steroids and opioids. How this was discovered was a fluke … cardiovascular disease from amp and cataplectic injury necessitated an opioid, and poof, the patient was awake. An inflammatory response was suppressed and opioids seem to have a paradoxical effect in narcoleptics due to the “rewiring” the brain does to compensate. Will any doctor try them … NO. They would rather you die from a heart attack … and they keep their license.
The College will not permit a doctor to treat his own family, yet they will allow him to treat multiple members of another family where there is interpersonal conflict or abnormal family dynamics at play. My family was never supportive (they think narcolepsy is psychogenic) and a history revealed they have what looks like psychopathy to one extent or another. They’re not serial killers, but that’s not what psychopathy is. Well, they refused to be examined or give reasons to justify their behavior. Researchers doing a functional MRI will catch psychopaths. Instead, no, psychos can lay on the charm THICK and they won’t run the test that can catch them.
My brother had my doctor FOOLED. I said, watch this video my cellphone caught when he himself hit the record by accident. His hair fell out and he needed a wig. Had you fooled didn’t he? NEXT TIME LISTEN TO ME. They think we all lie.
My brother went on a friggin rampage — totally postal, over nothing. If I posted it here, people would cringe it was that bad. I said, I’m not feeling well, can you take me to the hospital? … TAKE A TAXI. Dumb Adderall made me see STARS. A 3rd party perspective always helps — just come. I was there when you were bleeding out. NO, I’M NOT WASTING A DAY THERE. Oh, come on. And then he blew several fuses. It was outrageous.June 9, 2018 at 11:53 pm #5880FerretModerator
I would not under any circumstances take ANYTHING with THC in it during the day.
If you want this trial with cannabis to work for you then you should do ONE thing at a time and do that ONE thing for at least a month.
You’ve always had a tendency to be impatient IH and have said yourself that you have taken a different med every single night for a week. Then you say that they don’t work because you tried them and nothing changed. IT TAKES TIME FOR BRAIN CHEMISTRY TO CHANGE.
I sympathize with your circumstances but, really, you are your own worst enemy in your panic to find something, anything that works.
I would also like to point out that your “oil” is diluted with coconut oil. imho, you would be better off buying the 1 ounce of bud and making your own. It’s THICK and hard to get that grain of rice worth out of the syringe. That grain of rice worth is placed UNDER THE TONGUE and dissolved into the big veins located there. The effect is IMMEDIATE. It is not ingested like your oil or a capsule would be.
Suit yourself however… you always do.June 10, 2018 at 8:25 am #5881Anonymous
I was consistent. I had found my pocket. It was IMOVANE and VYVANSE. The Vyvanse was my idea. It was smooth and gentle. Over time, the response diminished. My brain just outsmarts itself. It sees the substances as foreign and tries to baseline itself to the wrong state.
Tolerance to Vyvanse is very common, as is tolerance to Imovane. Those were the best drugs because they hit the right targets, and are SAFE for long-term use at the doses I was taking. I was a mild narco. They really try to slot people.
Narcolepsy to them is short refreshing naps and full postural collapse when you laugh. I have cataplexy, but partial. Why did the cataplexy not progress? I don’t have the gene. Hamilton tested me. I’m Italian and Stanford’s sample was probably a bunch of Mormons from Utah. I can’t believe they put out that crap. You need a diverse racial sample and they had none. 4% of the population will test positive on an MSLT without being sleepy. They can just fall asleep quickly in a dark room. It means nothing.
Narcolepsy is about 1 in 500,000, not 1 in 2,000. Where did Stanford get that number? If CCAC scanned the medical records of 80,000 seniors under their care and found no narcoleptics, that scares THE LIVING DAYLIGHTS OUT OF ME!
I called TELEHEALTH ONTARIO … they have never had a narco call them. The ER jerk … he had never seen a narco. How could all these doctors never run into one if the prevalence is 1 in 2,000 and they’ve been in clinical practice for over 30 FU**ING YEARS.
And Stanford sucks. It was their job to find better treatments to allow us to LIVE, not EXIST. They failed, and oversimplified. Why? Because they’re psychiatrists, not neuroscientists, or scientists in diagnostic imaging. They will never get anywhere. Unless they learn how the brain works at a very detailed level via new forms of detailed brain imaging to see the ligand receptor kinetics in real time, they will never figure out where the signaling is messed up. That technology doesn’t exist. They may as well go home. You can’t fix something or workaround it if you don’t know how it normally works in the first place.
So it’s frustrating and discouraging. I never thought my family would react the way they did. I said, stay up for 48 hours straight. That’s N. GO! How could I not drop F bombs after the umpteenth time? They undermined the doctor-patient relationship and accused him of malpractice and incompetence, and then he takes the worst one on as his patient? Objectivity conflict. They told me to drop him so many times. The other two (who are neuros) were WORSE. Why would they even go to see him for lung issues for themselves if they thought he was incompetent with my care. Makes no sense.
If there was a narcoleptic nursing home, I would park my carcass there, but there isn’t.
So I’m thinking, “now you’re going to help the main culprit who didn’t assist me get better so he can continue to not assist, and criticize you?”. They actually said this crap in cell text messaging and he saw it. They called him a METH pusher and me a METH addict. They called him “just an E.N.T. Change doctors”. WTF?
All the narcos he had in British Columbia were lost to follow up — every single one — which were only a handful since 1980. He’s seen THOUSANDS of patients for other things for FORTY YEARS. He did not even bother to find out what happened to them. I know this man. He is a saint, and I would take a bullet for him, but he’s a pathological liar, and he wasted 2 YEARS messing with my mind.
I go into Google and it diagnoses me in 45 seconds. Three words … WEAK HANDS LAUGHING …
HIT #1 … CATAPLEXY. CLICK. NARCOLEPSY. RIGHT NEXT TO IH. HE WAS OFF BY ONE NOTCH.
Do the friggin LP and measure my hypocretin and stop the psychoanalytics Dr. Feel-Good. Send it to Stanford. Their funding dried up of course and they no longer even measure CSF H now, but did then. They minute I said “lost to follow up eh?” and he said “yes”, I said, “they off’d themselves”. He made up some BS lie that their GP’s continued the treatment plan. Sure they did. My GP won’t prescribe what he does. Who does he think he’s fooling? These are Schedule I narcotics for F’s sake. The receptionist didn’t even bother to find out what happened to them either. So they don’t take it seriously or think it can cripple someone. Well it can. Any drug whose dose must be increased by a factor of 12 and is still less effective than it was at 1x royally sucks.
WE CAN RESTORE YOU TO 70% FUNCTION. OH YEAH? THEN GET ON WITH IT.June 10, 2018 at 1:10 pm #5882Anonymous
Vaping or smoking was not recommended for sleep Ferret as that would be short acting and would not last the entire night. I agree, only one change at a time. It’s the amphetamine stimulants that are the problem. They fill a void. I felt almost normal. So, it was the RIGHT drug for me, and I tried them all. Narcolepsy is really a neuroendocrine disorder.
Are you mad. The stuff I’m getting is top grade, natural, and quality controlled, and you get the exact dose every time, and it’s only $1 a day. My instructions were to put 0.1 ml on a cracker and eat it, and work my way up to 0.4 ml. 0.2 on day 2 if no side effects. 0.3 on day 3 if no side effect, and 0.4 on day 4. No higher than that for now.
Tolerance to it will develop. They already told me.
Luckily Xyrem can be hard stopped. I’ve done it many times with no issues because I have backup (IMOVANE), but there will be issues coming off Dexedrine and going on to the daytime formula, and the GABA receptors could cause issues because THC … well, THC acts on them, but not directly. INDIRECTLY through other receptors. The affinity on the hypnotic subunit will not be the same as it is with IMOVANE or XYRREM.
When I do changes like this, I prefer not to do them at home alone in the event an adverse reaction occurs. I don’t like having N and living alone is the safest or best arrangement. That’s where my family comes in, or should I say, doesn’t. They have their hands full caring for my mom but I offered to hire a nurse to help out because my brother has to pull all nighters anyway as my mom needs to go to the bathroom at night and she is non-ambulatory. He’s a night owl anyway and retired. Because they think N is imaginary, the response is always “we have enough problems on our hands”. Well, if they think I’m faking it, I wouldn’t be a burden to them, and they’d get 3 extra nursing hours for my mom, which I offered with no strings attached. Besides, I want to see her more often.
They were always around when I DIDN’T need them. When I need them, they scram, like rats from a sinking ship.
If the switch makes me worse, then I’ll need a little help, because driving will be out of the question during the adjustment period.
That’s why I AM ROYALLY PISSED OFF at Dr. FeelGood. There are no short term observation stays in Ontario anymore, or no short term in long term, and the gorgon can do home studies. I wanted to BUY THE MACHINE MYSELF. I can wire myself up. It would be a pain in the arse but I’d do it. Money is no object. Every idea I get is somehow torpedoed by the anti-matter Brady Bunch and his laziness to do paperwork. I was doing fine on Vyvanse. Now, it’s like swallowing a tic-tac. Did my N get worse or is it tolerance? I honestly don’t know.
Stopping made me want to blow my brains out. It was horrible. Is it not legal in Mexico?June 11, 2018 at 6:49 pm #5909JasonKeymaster
@idiopathichypersomniac I’m not sure what machine or the technical aspects behind the device you are wanting, but you might check out alibaba. You can get just about anything from them. No clue if it would meet your needs but figured I’d mention it.
Regarding opiates, I was really perplexed why codeine was off label for N. I assumed, it might be because at least some opioids can cause a pretty dramatic increase in histamine for some reason. Now that there’s been some research suggesting PWN have increased histamine producing neurons, do you suppose that might be the cause of the paradoxical reaction? I took low dose tramadol for a bit for an injury and weirdly it had some stimulating and hypnotic properties. It’s a weird drug so, I suppose it have been for any number of reasons but I slept like total crap on it. I thought perhaps it was because it acts as a relatively weak SNRI so I tried venlafaxine hoping to get the stimulation without the sedation. I could barely function at all on venlafaxine it was so sedating and miserable.
Regarding Sodium Oxybate, that was probably the worst experience of my life. I could hardly sleep on it, would wake up soaking wet with sweat, and felt awake on maybe 4-5 hours of sleep a night but at the same time horrendously sleep deprived. I couldn’t keep my head still on it during the day and at night it made me feel incredibly drunk. Personally, I regret ever touching the stuff. I’m not sure how that crap works, but I’m extremely skeptical it does so by improving sleep. Particularly since, supposedly insomnia and sweating were rare side effects but now are listed as common even at high doses.
I’m curious why you think vigils are junk. Armodafinil was pretty much a cure for me for almost a year. It seems like genetics matters quite a bit for how people respond to them but I’d take the way I felt on Armodafinil that year than any treatment I’ve had since then, which has been pretty much everything. I was considering trying tiagabine but I think I’ll pass after reading your comments.
I very much relate on the lack of family support. It’s extremely upsetting and then when I wasn’t responding to treatment well and miserable, it must be all those drugs according to my family. Just can’t win. Pretty much the only support I’ve ever gotten is from this community. Anyway, hang in there bud.June 11, 2018 at 8:06 pm #5925TheRabbitKingKeymaster
I had poor response to the vigils and Xyrem. I think the majority of us are here to begin with because the usual rigmarole for N didn’t work for them. There’s probably a silent majority for whom these drugs work very well. Dollars to donuts, if a user is here it’s either because A) They’re new to N or B) they’re one of us unlucky bastards that did not fit within the rigid scope of the sleep medicine apparatus’ prescriptive formulae.
My current jam: Anathema - SpringfieldJune 12, 2018 at 11:24 am #5947JasonKeymaster
I think you’re probably right, Rabbit. It’s sort of oddly rewarding sometimes when people disappear on here since it often is preceded by them figuring out something that works for them. Although, I wish they’d stick around to tell us how the information helped. Back on the NN forums, I’d mostly post when things weren’t going well and when I first got diagnosed.
Regarding poor responses to medications, I’m thrilled that genetic testing is becoming more common and evidence based to increase the probability of finding successful treatments without having to do so much trial and error. As you know, I was rambling about the possibility of it being a game changer years ago on NN. All I want for Christmas is a full genome sequence.. How lame is that?!June 15, 2018 at 8:08 am #6033Anonymous
Medical marijuana helped to overcome my depression.June 16, 2018 at 1:51 am #6049Anonymous
CNS amphetamine-based stimulants are the ultimate anti-depressants … stronger than SSRIs or pot. They were used as anti-depressants in the 1950s.June 16, 2018 at 2:17 am #6050Anonymous
I believe the high turnover rate Jason meant the newbies thought it was a waste of time. My physician was Stanford-trained, but he often goes to Emory. He had lunch with Dr. Rye and Dr. Trotti — my case is known to them. Only HALF of people treated for hypersomnolence of central origin (narcolepsy 1 long, 1 short, 2 long, 2 short, and idiopathic CNS hypersomnolence long) achieve improvement to a C+. Nobody reaches an A+, and the other half fail.
People left, just as I did, because it was the same crap all the time. I had to eat crow so many times for repeating stuff I had heard on NN that was complete bull.
Hank was the anti-clonazepam broken record. That drug is orange candy.
Purpley … I wanted to make her black and blue too. Don’t know what she had.
Ferret … I like her; it’s an all act.
DominDwhatever … HE IS SMART … spoke to him on the phone.
Mali Einen … I like her. She’s not the sharpest tool in the shed, but a genuinely good person.
Julie Flygare … I don’t like her because when I look at her I see no impairment, so does she think she’s doing narcoleptics a favor?
Dr. Rye … I like him
Dr. Mignot … I don’t like him because he’s made too many mistakes and almost no progress. None of the real breakthroughs came from him.
Dr. Dement … I want to smack his face up so hard he’d have to stick a toothbrush up his arse to clean his teeth. He hurt so many people with standard tests that were nonsense. MSLT is the worst thing I have ever seen. Dr. Dement couldn’t handle relativity and set the “don’t believe your patient mantra”.
Monica Gow … nice, but she didn’t get that you need a billion bucks, and you don’t donate money to narcolepsy researchers who got it wrong with dogs and who now study fish.
Whatever narcolepsy them dogs have, it ain’t the same. You could tell.June 16, 2018 at 2:44 am #6051Anonymous
I’ve used modafinil as armodafinil is not available in Canada. The original was made by SHIRE and was in Canada first — large round pills. Those were OK. It was called ALERTEC, and came from France. It works on mild narcolepsy, but is weak. It doesn’t give you energy. They found out it was mostly DA transporter, like Ritalin. NEXT!
Xyrem is last resort. I know how it works. Over time, it rebalances receptors. It has nothing to do with sleep debt. Xyrem doesn’t do that — they tested it using non-narcoleptics, so MIG KNOT was wrong again.
Morty Mumu studied it in my hometown (Toronto, ON) and it was a blockade when you take it, while the faucet is still running … when it wears off dopamine, serotonin, and glutamate (YUCK) flow. Those who do respond to it tend to be severe cataplectics — the classical cases. A severe cataplectic is not a severe narcoleptic.
Modafinil, Armodafinil, .. they
suck because they act on the DA transporter in reuptake inhibition. They do some other crap that nobody was interested in zeroing in on, because coffee was better. The clinical data spoke for itself. No idea how it got approved. The drug is crap.
I wanted basic polysomnographic equipment with automatic scoring. I need to see it.
I think it involves histamine with opioids, but I have done beta-histine and it was AWFUL. It’s a flushed red face kind of alertness. I hope I answered your questions.
Xyrem helps very few
Take Mali Einen, nice, but not too much activity goes on in her head. Since she worked as a clinical coordinator, I thought she’d know much more than she actually did, which was “NOT MUCH”.
Her hypocretin 1 level was ZERO.
But what was her hypocretin 2 level? … Me thinks close to normal.
Her major problem was craptastic sleep and she took to Xyrem well.
If you have no HCRT 1 and 2, Xyrem is a good stain remover, albeit an expensive one. Stanford could never explain, even to the FDA. Mignot said sleep debt, and my doctor could not stop laughing.
It would take YEARS to repay that debt you numbskull. His first idea was right. Morty was wrong. They all were. Even Mali could not tell it was an Adderall crash in reverse because she obviously had a lot of HCRT 2 to cover it up.
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