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Showing results for tags 'idiopathic hypersomnia'.
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It hit me when I was twenty and progressively (rapidly, really) grew worse these past years. At one point I slept 22 hours a day and barely dragged myself out of bed at that. The weird thing is that I also have symptoms of narcolepsy, though my sleep study did not show me to be narcoleptic. I have frequent hallucinations upon waking like narcoleptics do. My life was nonexistent until I scoured the internet for alternate treatments for my hypersomnia -- adderall alone wasn't cutting it, and some of the stims made me manic. If any of you are struggling with idiopathic hypersomnia, I cannot recommend Clarithromycin (antibiotic), Minocin (antibiotic), or Levothyroxine (thyroid medication) enough. Doctors don't know WHY these medications help people with IH, but a lot of the time they do, and it can be a life saver. Currently I am on 25 mcg of Levothyroxine and the difference is night and day. The drug Flumazenil (used in benzo overdoses, I believe) is supposedly to be the best alternate treatment, but I don't need it with the others available. Just wondering if anyone else here suffers from idiopathic hypersomnia (or just plain hypersomnia) and what their experience with treatments/coping has been like. I also wanted to share the info about Flumazenil/Clari/Minocin/Levothyroxine, just in case someone isn't getting enough relief from stimulants and needs something else like I did.
mikl_pls posted a topic in Sleep Disorders - Perchance to DreamI have idiopathic hypersomnia, which isn't as ravenous as it used to be and seems to be well-controlled with Adderall XR 40 mg (which is also for ADHD and to potentiate the antidepressant effects of my MAOI antidepressant, Emsam). But I also, ironically enough, have intractable insomnia when it comes time to sleep at night. This seems to have been exacerbated when I started the Emsam recently, which comes as no surprise as it did this the first time I was on it the first part of this year. I understand the pharmacology behind selegiline and why it may be so stimulating for me, especially when taken with Adderall XR. But in any case, I've read insomnia and fragmented sleep is actually not uncommon with idiopathic hypersomnia. All the medicines I've tried for sleep either don't work (benzodiazepines and nonbenzodiazepines, I think I'm extremely benzo-resistant) or they may work but make me feel miserable and dysphoric and make me gain a ton of weight (certain sedating antipsychotics). Sorry for the long post in advance, but here are some lists that give some background info about my situation. ***************************************************************************************** Here is a list of the meds I've tried for sleep. Benzodiazepines: alprazolam (Xanax/Niravam) 2 mg: only works at ridiculously high doses, like 6 mg at a time, which I know isn't good for me, so I refrain from doing this unless it's an absolute must chlordiazepoxide (Librium) 25 mg: doesn't seem to work for sleep but does okay for anxiety clonazepam (Klonopin) 1 mg: again, only works at ridiculously high doses... clorazepate (Tranxene) 15 mg: doesn't work at all for anxiety or sleep or anything diazepam (Valium) 10 mg: this one is like playing Russian roulette, either it works (10-20 mg), or it doesn't work, or it actually stimulates me and keeps me from sleeping estazolam (ProSom) 2 mg: this is another one that I have to take supratherapeutic doses of (4-6 mg) to work, 2 mg just doesn't cut it at all lorazepam (Ativan) 1 mg: this benzo literally does nothing to me except make me feel like I have Alzheimer's disease due to its apparently extremely strong amnestic effects oxazepam (Serax) 30 mg: does well for anxiety at 30 mg, but nothing for sleep whatsoever temazepam (Restoril) 30 mg: works at high doses like 30 mg and above, but makes me feel miserably depressed the next day, and all I can do is lay in bed or drag around if I manage to get out of bed) Nonbenzodiazepines: zolpidem (Ambien) 10 mg: doesn't work well at all, even in supratherapeutic doses zolpidem CR (Ambien CR) 12.5 mg: works even less than regular Ambien, for some reason eszopiclone (Lunesta) 3 mg: this one was like taking a placebo... it literally did nothing at all for me... (3 mg) Even tried 6-9 mg and it still didn't do anything Antihistamines: diphenhydramine (Benadryl, Unisom) 25-100 mg: hardly does anything to touch my sleep doxylamine succinate (Unisom) 25-50 mg: does a little more than diphenhydramine, but also leaves me feeling hung over the next morning, and also feeling quite depressed hydroxyzine hydrochloride (Atarax) 25 mg: doesn't touch me hydroxyzine pamoate (Vistaril) 50 mg: used to be somewhat calming, but not sedating, doesn't touch my sleep even if I take 100-200 mg of it Antidepressants: nortriptyline (Pamelor) 50-150 mg: this wasn't prescribed to me for sleep, actually, but I listed it because I know it's used sometimes for sleep, and I wanted to say that it didn't sedate me even one bit... trazodone (Desyrel) 50-200 mg: at first this worked like a charm (and gave me auditory and visual hallucinations), but 50 mg soon became insufficient, so I went up to 100 mg, then 150 mg, then 200 mg, and it just quit working. I took 300 mg one night just to see if it would help, and it helped me sleep for 3 hours, but I woke up with my heart beating rapidly and pounding in my chest—scary experience, would not repeat... Antipsychotics: chlorpromazine (Thorazine) 100 mg: this makes me sleep for 15+ hours and when I wake up I feel like hell. The first time I took it, I had an acute dystonic reaction, which scared the piss out of me. I'm surprised I was brave enough to take it again (I guess I was just desperate). It also makes me gain weight, but not as bad as Zyprexa. olanzapine (Zyprexa) 5-10 mg: also made me sleep for about 12-15+ hours, and when I wake up I would feel like hell, plus it made me gain weight like crazy without altering my diet, and it made my fasting blood sugar skyrocket into the 200's. quetiapine (Seroquel) 100-300 mg: at 100 mg, no help with sleep; 200 mg, I get help with sleep but I feel like hell the next day and gain weight; 300 mg is even worse than 200 mg and has no antidepressant effect for me despite what is purported by all the psychopharmacology textbooks out there. Saphris (asenapine) 5-10 mg: works perfectly for sleep—helps me get just the right amount of sleep, and it's weight neutral; however, despite an initial antidepressant effect when first taking it after not taking it for a while, I always end up feeling very dysphoric and depressed the morning after I take it after taking it for a few weeks, and end up having to stop taking it. It also has started to exacerbate the akathisia that is being caused by another one of my medicines, Vraylar. α2-adrenergic agonists: clonidine (Catapres) 0.1 mg: made me sleep alright, but made me sleep forever, and when I woke up, I felt super teary, dysphoric, depressed, and miserable, and couldn't get out of bed all day Orexin receptor antagonists: Belsomra (suvorexant) 20 mg: this was hit or miss. It would work like a charm sometimes, and sometimes I would just toss and turn all night, unable to get to sleep. But it doesn't matter because my insurance gave me the middle finger last year with a nice little letter saying that they would no longer pay for it anymore. Melatonin receptor agonists: Rozerem (ramelteon) 8 mg: did absolutely nothing for me Natural remedies: Melatonin 1-10 mg: I've heard using a sustained release plus an immediate release sublingual tablet is the way to do it, and use the lowest dose possible for each one, so I wound up using 3 mg SR + 1 mg IR SL, and it seemed to work pretty well for about a week, but its benefits started to wear off, and I started feeling depressed more during the day. When I stopped the melatonin, the depression eased up. Valerian root: this actually stimulates me. Lemon balm: anything with lemon balm actually does help me sleep somewhat okay, but I have to watch out for what else is in it Lavender tea: this actually helps quite a bit, but it's hard to find where I live L-Theanine 200-400 mg: supposed to help relax you and help your quality of sleep, but I didn't get any benefits from it. I don't even feel the relaxation effects from it. Ashwagandha 500 mg: didn't help me sleep, but did help ease the nightmares I was having while going through Effexor withdrawal Scullcap 1275 mg: didn't help me sleep, but like Ashwagandha, it helped ease the nightmares I was having while going through Effexor withdrawal Chamomile: just helps me feel relaxed, doesn't help me sleep (probably more I can't think of off the top of my head...) ***************************************************************************************** Here is a list of meds that I haven't tried. Benzodiazepines: flurazepam (Dalmane): my pdoc refuses to prescribe this one to me and given how long its half-life is, I don't think I'd want to take it anyway midazolam (Versed): I somehow feel like this would work, but it's so short-acting, and I doubt my pdoc would prescribe it to me Onfi (clobazam): not sure if this would benefit me for sleep, I think it's indicated for Lennox-Gastaut syndrome triazolam (Halcion): Very short-acting, not sure if it would benefit me through the whole night Nonbenzodiazepines: Edular (zolpidem sublingual): I was interested in trying this, but it's not covered by my insurance... bummer. zaleplon (Sonata): another short-acting sleep med, which I doubt would be helpful at sleep maintenance ZolpiMist (zolpidem oral mist): I was also interested in this one, but my insurance doesn't cover it either... T__T Barbiturates: Butisol (butabarbital): seriously doubt my pdoc would prescribe this, but I wonder if I'm really to the point where I need a barbiturate... Seconal (secobarbital): see above... Antidepressants: amitriptyline (Elavil): I've heard of this one being prescribed for sleep, but I'm afraid of the weight gain. doxepin (Sineqan/Silenor): I've been curious about this one, but afraid of it because of weight gain. My pdoc at one point acted like she was going to prescribe it for me, but it was just not on my prescription sheet, like maybe she forgot? Or decided it was best for me not to be on it? imipramine (Tofranil): I've heard of this one being prescribed for sleep too, but I think it's contraindicated with MAOIs. (certain TCAs can actually be taken with MAOIs) Antipsychotics: risperdal (Risperidone): I've heard of this one being prescribed for sleep, but not too commonly... I'd be afraid of the hyperprolactinemia associated with it. Plus I would really rather take just one antipsychotic if I can help it... I don't want to be on one for mood and one for sleep... Other Xyrem (sodium oxybate): I feel like this would really help me what with my fragmented sleep and poor sleep quality, but my pdoc won't prescribe it (maybe she isn't licensed to?) I may need to find a sleep doctor for that if I want to pursue that. The only problem is I don't have narcolepsy, and I've heard it's next to impossible to get your insurance to pay for Xyrem if you don't have a diagnosis of narcolepsy, but I have heard of it being used off-label for idiopathic hypersomnia-associated insomnia as well as insomnia itself. ***************************************************************************************** Can anyone give me any insight into what I could possibly do for sleep? I feel like I've kind of hit a wall here. I've also tried relaxation exercises, guided meditation, binaural beats, and that kind of stuff, none of which worked for me. I know I gave a lot of info to sift through, sorry for the super long post... But any feedback would be appreciated. Thanks!