- This topic has 16 replies, 6 voices, and was last updated 1 year, 11 months ago by Ferret. This post has been viewed 3113 times
- July 10, 2017 at 4:59 am #969Aus_down_underParticipant
Hey Guys, New to the forums and I am pretty close to being “diagnosed” with narcolepsy officially as per the government standards here in Australia.
I have done 4 sleep studies, with 3 being in the last year. The last 2 of those have been with MSLT and I had complications with both tests. I don’t officially have apnoea but I am booked in to have my tonsils removed later this month to exclude the possibility as some of you would already know.
The last MSLT was very indicative of narcolepsy as I hit REM twice in 4 naps but I didn’t meet criteria because I only slept for 5-3/4 hrs and not 6hrs aaarrrrghhh.
That’s is some of the background, anyway to my original question; my sleep specialist has given me some belsomra to take at night to try and get my sleep patterns in order, I have done a search to find that it is contraindicated in people diagnosed with narcolepsy. I found in the other forum that Jason gave some explanation to the answer but I was still left a bit fuzzy from the response.
My thoughts are that my specialist is trialling me on the tablets to see if they work or not? but if they are not suppose to work with “N” then that leads me to believe that he may be thinking that my diagnosis is still open for discussion, even though he says my results are very indicative of “N” as there is no “gold standard test” except for spinal fluid test.
I am taking clonazepam at night and have just switched from dex to Ritalin as a trial to help my EDS,
does the belsomra have nasty side effects if I do have “N” and if so what can I expect if it is the case. Has anyone used this med or is still currently taking it. I am cautious of taking it before I get some more clear answers. I have checked the wiki on it, but real life is different to theory.
I need to be functioning as best as possible the next day as I am a F/T carer for my wife and I also have 4 kids to look after so I need to stay on my “A” game.
Cheers in advanceJuly 10, 2017 at 10:24 am #994TheRabbitKingKeymaster
If you do have N, Belsomra will make it much much worse in all likelihood. It was developed to switch off the part of the hypothalamus that narcolepsy damages. I wouldn’t say dont take it, but dont be surprised if it makes it way harder to rise in the morning. But maybe you’ll get lucky and get some sort of rebound as it wears off. Its hard to say anything definitive with meds since everyone is their own unique crockpot of neurochemistry. But yea be cautious with it.
Also, make sure you aren’t taking it when you do you mslt. A two week medication holiday is best to avoid messing with the test, but I’d say at least a week off at minimum and that goes for the benzo tooJuly 10, 2017 at 12:13 pm #1015JasonKeymaster
Belsomra is an orexin blocking medication. It basically temporarily gives a normal person a mild form of N to help sleep at night. If you have N, it’ll either do nothing or worsen symptoms temporarily. Like a day or two tops and the medication will be out of your system so it’s not dangerous or anything.
Sometimes if a doctor isn’t sure if you have N or insomnia they might give you belsomra. Why? Because if you have insomnia, it should help. If you don’t, and it makes you have worsened or new symptoms like sleep paralysis, it’s more likely N.
There’s a subset of patients that meet the criteria for IH but have some N type symptoms, like sleep paralysis, etc and nevertheless, don’t enter REM. In these folks the belsomra test makes sense to try if the doctor isn’t sure but curious.
Basically if you gave a normal person a lot of belsomra, they’d get to experience what N+C feels like for a day or two lol.July 11, 2017 at 4:41 am #1201Aus_down_underParticipant
Thanks for the replies guys, its great to get some feedback. Have you guys tested it for yourselves? if so what did you experience with a diagnosis of N?
I haven’t had my specialist mention anything about IH or insomnia. I have no problems falling asleep and staying asleep, in fact its hard to wake me at all at night. I have had EDS getting worse for the last 10 years or so and I am now 31. My ESS is 19.
In past 3 sleep studies my night sleep patterns are normal but I wake up exhausted and not refreshed, this is why I am being led down the path of N diagnosis. As i said in OP I don’t have evident apnoea but due to having one enlarged tonsil I need to have them removed to clear all other possibilities. I take the clonazepam for restless legs syndrome which is hereditary but wasn’t picked up on in any of the tests.
I did a bit of research on belsomra but was still left wanting on knowing if it was going to actually do more damage or if it was just another risk free test to eliminate possibilities.
I have been experiencing some cataplexy type episodes since last October especially after trialling new medication which appeared to set it off and so I am very weary of taking new meds as I cant afford to be out of action. I’ve already had a few hospital trips with extensive testing done with no evident results as to my complex symptoms.
I have been given 3 15mg tabs and 3 20mg tabs for a trial, I will try them soon when I have a clear day after the first night test.
Sorry for the long spiel but I like to give background as it helps for you guys to not have to repeat things ive already had tested/trialled.
Asking more questions is sometimes the best answer to give until a definite response can be given.
That’s why I appreciate this specialist as he wont just jump to conclusions before all other things can be excluded.
Cheers guysJuly 11, 2017 at 12:37 pm #1241PurpleyParticipant
Giving Belsomra makes zero sense to me. I suggest you ask your sleep doc why he’s prescribing it.
It’s an orexin-blocker (prevents orexin from binding to the cells it’s supposed to bind to), so like others have said, it actually mimics narcolepsy. People with N+C almost always have low orexin levels, which can be checked with a spinal tap. At least some people with N-C, the vast majority of whom have normal orexin levels, may be resistant to orexin. It’s just like how some people with diabetes don’t produce enough insulin, while other people with diabetes have normal insulin levels but are resistant to its effects. Either way, the end result is diabetes.
So I can’t see why this would be a test of anything. It basically induces narcolepsy symptoms (INCLUDING cataplexy for some people!) whether you have N or not. So like I said — ask your sleep doc why before you take it. This strikes me as a very weird thing to prescribe. Is your sleep doc a pulmonologist rather than a neurologist? If so I’d be especially wary because they’re far more likely not to be up-to-date on narcolepsy.
Personally I’m skeptical as heck about it as a medication for insomnia for anyone. Since people with N+C are sleepy due to low orexin levels, but the sleep isn’t restful, why would we assume that people taking Belsomra would have restful sleep? I’d like to know if people on Belsomra actually feel more awake during the day or just sleep longer.
I’m sure I could look that up if I weren’t so lazy and didn’t find it easier to be snarky… 😉"Even a soul submerged in sleep is hard at work and helps make something of the world."
― Heraclitus, FragmentsJuly 11, 2017 at 4:54 pm #1260JasonKeymaster
@purpley (we really need to get this function working) does any hypnotic improve wakefulness with the exception of Xyrem? Closest thing I’ve found in the literature are hypnotics that don’t impair next day function and even those are pretty scarce.
I’ve never gotten much benefit from a hypnotic in terms of alertness until I started Adderall because it wrecked my sleep. It is extremely annoying to wake up several times at night though regardless of an improvement in day time alertness.July 11, 2017 at 4:54 pm #1262JasonKeymaster
Holy crap did you get the @ function working rabbit?!July 11, 2017 at 4:59 pm #1264TheRabbitKingKeymaster
Umm, maybe on accident lol. That plugin that did the quotes did some other stuff too. I guess @mentions was a part of it.July 11, 2017 at 8:08 pm #1291PurpleyParticipant
Yeah, on Xyrem I wake up at least twice a night, if not 3-4x, which is very annoying — yet I feel more alert during the day. Psychologically it drives me bonkers, but I suppose I’ll get used to it eventually."Even a soul submerged in sleep is hard at work and helps make something of the world."
― Heraclitus, FragmentsJuly 11, 2017 at 11:21 pm #1325Aus_down_underParticipant
Thanks for the replies Guys,
@Purpley My sleep specialist said to me that the point of giving me Belsomra was to help get me back into a normal sleep pattern as my sleep hygiene is a bit off whack at the moment, he explained to me that it contains melatonin just like the anti-depressant he gave me which didn’t do anything at all for me and now I have ceased that A/D. The concentration level of melatonin is suppose to much greater in belsomra compared to the A/D so I am guessing that he is trying to ramp up my melatonin to see if I wake better to see if I am just getting poor quality sleep as opposed to quantity (hours slept).
I have found the longer I sleep the worst I wake up, any more than 7-8 hours and my muscles get really tight and take quite some time for me to loosen up, the sweet spot is 6-7 hrs.
My Doc is not a Neurologist, he has a MD cert and PST cert and is a respiratory consultant specialist.
I have seen a Neurologist but he was an epilepsy specialist from the hospital I was admitted to in Dec last year and supposed all my symptoms to being psychogenic as they were not in the category of epilepsy.
I would really love to hear a personal testimony from their experience with Belsomra as I am getting a little concerned from its possible side effects, due to the complexity of where I am at right now.
I am trialling Ritalin again and I am getting some very weird side effects, I’m not sure if its from not having the dex only or if having to interchange the 2 tabs within the day is messing with my brain. I don’t remember feeling dizzy last time I trialled Ritalin and I also used the 2 mixed in the same day at times so as to not have the huge comedown from the Dex. I have also ceased the Clonazepam (temporarily) for the past 4 nights to see if my sleep was any better and to see if I would wake refreshed. I don’t take any stimulants after 4pm and I only have 1-2 std drinks P/N if I do occasionally have a drink, I don’t drink much alcohol so I don’t think that is even a factor.
I stopped smoking 5 months ago and have been vaping with small amounts of nicotine, this was done so I can have my tonsil Op next week.
Can Nicotine affect these meds much? I am just trying the process of elimination to try and find whats best.
I do have some generic Armodafinil 150mg, but I got headaches and felt a bit weird from them. I trialled Nuvigil 250mg last year but the jury was out for me as to whether it worked or not as I had to have 1 dex in the morning to fire me up as I get really cranky until my brain kicks into gear.
Sorry again for the big vomit of info but I am still trying to wrap my head around this all!!!
Thanks again for the replies.
CheersJuly 12, 2017 at 9:23 am #1345PurpleyParticipant
Thanks for the replies Guys,
@purpley My sleep specialist said to me that the point of giving me Belsomra was to help get me back into a normal sleep pattern as my sleep hygiene is a bit off whack at the moment, he explained to me that it contains melatonin just like the anti-depressant he gave me which didn’t do anything at all for me and now I have ceased that A/D. The concentration level of melatonin is suppose to much greater in belsomra compared to the A/D so I am guessing that he is trying to ramp up my melatonin to see if I wake better to see if I am just getting poor quality sleep as opposed to quantity (hours slept).
I hate to say this, but I think your doctor may have mixed up his sleep meds, if you’re positive he was talking about suvorexant when he mentioned melatonin. Suvorexant has nothing whatsoever to do with melatonin. The *only* prescription med that has anything to do with melatonin, which is a few years old already but still “new,” is ramelteon (Rozerem). That’s a melatonin agonist, which means that it binds to melatonin receptors on neurons just like melatonin does, so it mimics the effects of melatonin. In the manufacturer’s own studies proving efficacy, it improved sleep onset (time to fall asleep) by a whopping EIGHT minutes. In other words, it’s a very expensive melatonin substitute with no reason for existence other than to make money for the company that patented it. I’ve never heard a doctor say it works, but trust me, it made enough money out of the starting gate when docs first tried it out to more than make up for the development costs — people are desperate for new sleep meds.
So like I said — call your doctor. The prescription for suvorexant still makes no sense to me, but that doesn’t mean I’m right, it means you should call and ask. And if the doc says anything about melatonin again, tell him you looked it up and it’s described as an orexin antagonist (or orexin blocker, which is easier to say) and is contraindicated in narcolepsy. If he doubles down on the claim it affects melatonin instead of saying, “Yes, it does block orexin, but…[X explanation for using suvorexant]” or, “Whoops, good thing you caught that, I meant to write you a prescription for ramelteon, not suvorexant,” then quite frankly you need a new doctor. And I don’t recall exactly what “PST-certified” means, but it’s a certification usually held by non-MDs (pulmonary sleep tech, or something like that) so I hope you’re right about the “MD” part.
As for the weird things you’re experiencing — whoa there, pardner! Stop fooling around with your meds, especially before surgery. You can either decrease clonazepam or trial Ritalin but for heaven’s sake, don’t change two things at once, and no matter what you do, you should be doing it under direction of your doctor. (I apologize if your doctor told you to go ahead and “try things out,” but if he did and he meant, make random dose changes in two or more meds at once, it should include “trying out” a new doctor for a second opinion.) I know these meds inside-out but I don’t make any changes in my own regimen without the knowledge and consent of my doctor, and I do it for the medication he recommends starting with and on the schedule he recommends. Naturally I’m a pain in the @ss as a patient and try to negotiate — e.g., “Aw, come on, can’t we taper it by 10mg every two weeks instead of 5mg?” — but in the end, what he says, goes. I also don’t make any medication changes when big events are coming up, like…oh, I don’t know…SURGERY, perhaps?!?
So, to sum up everything I’ve said in four words: Talk to your doctor. I can’t tell you what you should or shouldn’t be taking, and if anyone else tries to tell you that on this forum, run in the other direction because (1) they don’t know you and your whole medical history, and (2) you shouldn’t take advice from random people, especially when you don’t even know what their knowledge level is.
Hope this helps, now go ask your doctor, please! I’m certainly curious to know how it goes."Even a soul submerged in sleep is hard at work and helps make something of the world."
― Heraclitus, FragmentsJuly 13, 2017 at 12:51 am #1436Aus_down_underParticipant
Hey Purpley, thanks for the reply.
Just to clarify I wasn’t prescribed Belsomra, My specialist has given me 2 sample boxes 1 of 15mg 3tabs and the other 20mg 3 tabs. I may have misheard him about the melatonin thing, but no other med was discussed in my last meeting and he did mention melatonin and getting my sleep back to normal using medication.
Unfortunately its very difficult to get into see this specialist as he has a long waiting period so I just can’t get in asap to ask. I can try and ask for a call back though to speak to him.
I tried asking my usual GP for advice with meds and he passed the buck back to the specialist, so I am left to do my own research and try and get some of my own conclusions, that’s why I am here on this forum.
I am not reckless when it comes to my meds, I think it through carefully before doing anything, point in case that’s why I am here asking for personal testimonies. I only stopped the Benzo for a short time to get it out of my system before trying the belsomra as I don’t want a compound effect with the 2 meds. Due to having to wait for replies from here I haven’t taken taken the belsomra and that’s why I was off the benzo for a bit longer than I would have liked. I had to retake them last night as I had a really bad day yesterday with cataplexy and sleep attacks. I will wait until after surgery now before I try anything else new.
I will be trying to find a Neurologist who specialises with sleep disorders to try and get on top of my meds.
I appreciate the concern Purpley and its very wise advice, unfortunately like most people here it can be hard to get a doctor to listen without them already having come to a conclusion on a matter. I also understand that it is apart of their job too so its a catch 22 for us all.
Thanks again to all for your input, it has helped me to make some better choices.
Cheers and God blessJuly 13, 2017 at 1:00 am #1438TheRabbitKingKeymaster
If you don’t mind, keep us posted on how this turns out. I’m interested to see what the idea was behind giving you the pak. Always possible it’s some vanguard treatment none of us have heard of. After all, I’m sure quite a few heads were turned when someone first suggested GHB as a narcolepsy treatment. Until you understand the mechanism, taking a sedative to treat a sleep disorder seems crazypants. So maybe there’s some rad new theory going on here tooJuly 13, 2017 at 1:29 am #1440Aus_down_underParticipant
Yeah, I am more than happy to help as we are all in the same boat just trying to get our bearings.
He seams like a pretty switched on Specialist and he is medically trained apart from being a Pulmonologist. BTW a PST cert polysomnography tech who can read and report raw data.
The Clonazepam isn’t for my sleep either it is given to me for restless legs syndrome, and I can’t take the usual anti depressants (for REM suppression) which increase the symptoms of RLS, so I am sort of stuck here with the benzo. Its a great benzo let me say though as there is no next day side effects or drowsiness for myself and my wife who has just started taking it for other purposes.
I haven’t noticed a neither negative/positive effect on my overnight sleep and this seems evident from my 3 recent PSG’s as the first test was done without a benzo and the sleep patterns look identical between all 3 tests which I have and can compare side by side.
The GHB thing is very unusual and they still don’t know why it works but it does from wht I hear, I did ask my specialist about it and he said he has one guy on it who doesn’t think its paying off all that well considering the cost. Again its the neurochemical lottery we are all playing.July 13, 2017 at 1:56 am #1442TheRabbitKingKeymaster
There’s some debate as to the finer points, but the IIRC, the broad consensus is it most likely that spooky action on GABAb receptor sites promotes slow wave sleep at the expense of REM, and that righting of your night time sleep helps alleviate daytime symptoms somewhat. I’ve heard some say they believe it’s more of a rebound action in the brain during the day, but that I don’t think I’ve ever seen anything other than private postulation on the second explanation.
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