Intractable insomnia (plus idiopathic hypersomnia)

[mikl_pls]

I 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.

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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...)

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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.

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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!  

[melissaw72]

Of the meds you have already tried that didn't work ... do you think a combo of meds you already have taken would have an effect?  Sometimes meds don't work alone, but need another before it helps ... or even 3.  Not sure what combos you have taken with each med that hasn't worked in the past.

Found this ...

http://www.med.monash.edu.au/assets/docs/scs/psychiatry/psychopharmacology/wilson-hypnotics-2007.pdf

Does this help?  See last paragraph on the last page  ... I tried to copy and paste it, but it didn't work.

----------------------

How about this one?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2276826/

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If you google : "idiopathic insomnia" there are a lot of articles that come up.  Idk which one/s would be helpful, but maybe some are?

Edited December 22, 2016 by melissaw72
DUH spelling

[dancesintherain]

my immediate reactions were risperdal or geodon (for some--for others it's activating, but for me, it knocked me out like a light).  i can understand the desire to not take more than one antispsychotic though.  those were just the first gut reactions i had. 

sorry you're deaing with this.  it royally sucks. 

[mikl_pls]

14 hours ago, melissaw72 said:

Of the meds you have already tried that didn't work ... do you think a combo of meds you already have taken would have an effect?  Sometimes meds don't work alone, but need another before it helps ... or even 3.  Not sure what combos you have taken with each med that hasn't worked in the past.

Found this ...

http://www.med.monash.edu.au/assets/docs/scs/psychiatry/psychopharmacology/wilson-hypnotics-2007.pdf

Does this help?  See last paragraph on the last page  ... I tried to copy and paste it, but it didn't work.

----------------------

How about this one?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2276826/

-----------------

If you google : "idiopathic insomnia" there are a lot of articles that come up.  Idk which one/s would be helpful, but maybe some are?

 

2

Thanks for the links! They were very interesting, especially the one about the ECT. I'm actually waiting for ECT myself. Just as soon as the pdoc who is going to perform it can get time in his schedule to do all my treatments so he doesn't have to "hand my brain off" to another pdoc... lol. I wonder if that would somehow help... It mentioned she was on venlafaxine (Effexor) and quetiapine (Seroquel)—some of the worst insomnia I've ever experienced was while I was on Effexor, and Seroquel mainly makes me feel miserable and depressed the next day, like I said above.

Yes, I have tried combining medications before. I've tried benzos + trazodone + antipsychotics, and while some combos have been successful (others not), the ones that are successful usually are the ones that leave me feeling either hungover, depressed, or both the next day. I remember I combined Lunesta 9 mg, Restoril 60 mg, trazodone 200 mg, Saphris 10 mg, melatonin 10 mg, L-theanine 200-400 mg, and a relaxation supplement that had lemon balm, lavender, and chamomile in it for a short while, and that would knock me out pretty effectively, but I couldn't get out of bed the next morning, and when I did, I felt like absolute hell. Plus I figured the combination of Lunesta 9 mg and Restoril 60 mg wasn't good for me either. Lately I've been taking Niravam (alprazolam ODT) 4-6 mg + Klonopin 2-3 mg, which I know can't be good for me at all, which is why I try to abstain from doing it too often, again only if I feel I absolutely have to.

Was/were this/these the paragraph(s) you were trying to copy and paste?

Quote

Selective serotonin reuptake inhibitors (SSRIs) often cause insomnia early in treatment, but in depressed patients, improvement in mood is almost always accompanied by improvement in subjective sleep; therefore, choice of antidepressant should not usually involve additional consideration of sleep effects. Nevertheless, some patients are more likely to continue with medication if there is a short-term improvement, in which case an antidepressant that promotes sleep (such as mirtazapine) may be preferred. It is thought that this effect of mirtazapine may be due to its action to block serotonin (5-HT2) receptors; indeed, nefazodone, which also blocks these receptors, has also been shown to be sleep-promoting.11

In insomniac patients who are not depressed, antidepressant drugs with 5-HT2-blocking effects may occasionally be effective. There have also been reports of SSRIs ameliorating long-term insomnia, presumably because of their anxiolytic or antiobsessional effects.

Insomnia may occur in psychoses such as schizophrenia and mania. In such situations it is advisable to use an anti-psychotic with 5-HT2-blocking effects because it will help sleep. Occasionally, low doses of these newer antipsychotics are used in non-psychotic patients with intractable insomnia; quetiapine is probably the safest to use as it has the shortest half-life.

 

3

I've tried all the SSRIs except Paxil, which I avoided due to the purported weight gain associated with it as well as the discontinuation syndrome were I to ever need to stop it. I've tried pretty much every antidepressant on the market (see my signature lol), and that's why I've resorted to an MAOI, Emsam, which even Emsam doesn't seem to really be working well for my depression. Mirtazapine made me night eat and swell up like a balloon (I forget how much weight it was I gained, but I gained a substantial amount of weight in just a week, which is what made me quit taking it). It did help me sleep but only for the first few nights that I took it. I took nefazodone too, but it didn't have any sleep-promoting properties to speak of for me.

I can't handle quetiapine (Seroquel). Anything under 200 mg is ineffective for me (but still makes me gain weight), and 200-300 mg makes me not only gain weight like crazy, but it also makes me extremely depressed the next day.

"Idiopathic insomnia," huh? I've never heard of that, I'll have to read up on it. Thanks for mentioning it to me!

13 hours ago, dancesintherain said:

my immediate reactions were risperdal or geodon (for some--for others it's activating, but for me, it knocked me out like a light).  i can understand the desire to not take more than one antispsychotic though.  those were just the first gut reactions i had. 

sorry you're deaing with this.  it royally sucks. 

 

7

I've never taken Risperdal before, I may suck it up and give it a try, and if I start getting manboobs just ask for a prescription for bromocriptine or cabergoline... lol. Geodon I've taken, but it's both stimulating and relaxing for me, it's strange and hard to describe (maybe has to do with the dosage... which is 40 mg twice daily). Geodon actually alleviates my akathisia, I assume because it has potent 5-HT_2A antagonism, a mechanism of action they theorize can help akathisia (since they also use mirtazapine and other meds with 5-HT_2A antagonism for akathisia too...). I may try switching out my Vraylar for Geodon since I actually have some on hand, and Vraylar doesn't seem to be cutting it for my mood anymore at the dose I'm on now (not to mention the akathisia it's causing), but the problem there is that Geodon has mild SNRI properties, and since I'm on an MAOI, that could pose a risk for serotonin syndrome and/or hypertensive crisis.

Thanks for the suggestions, though. It has given me something to consider. Maybe if I could replace Vraylar with one of these meds that would relax me/sedate me more, I wouldn't have to take two antipsychotics (one for mood and one for sleep). I did ask my pdoc about Risperdal once, but she said it can cause weight gain, which is an absolute no-no for me.

Thanks for your responses, @melissaw72 and @dancesintherain!

Edited December 22, 2016 by mikrw33

[melissaw72]

I'm glad that links were helpful! 

1 hour ago, mikrw33 said:

"Idiopathic insomnia," huh? I've never heard of that, I'll have to read up on it. Thanks for mentioning it to me!

Oh .. I got that mixed up with the idiopathic hypersomnia!

16 hours ago, mikrw33 said:

But I also, ironically enough, have intractable insomnia when it comes time to sleep at night.

When I read this ^^ I was thinking how the post was about both insomnia in general, specifying these 2 kinds.  I'm sorry about that!

 

1 hour ago, mikrw33 said:

Insomnia may occur in psychoses such as schizophrenia and mania. In such situations it is advisable to use an anti-psychotic with 5-HT2-blocking effects because it will help sleep. Occasionally, low doses of these newer antipsychotics are used in non-psychotic patients with intractable insomnia; quetiapine is probably the safest to use as it has the shortest half-life.

^^This is the paragraph I was trying to cut and paste.

 

[mikl_pls]

I see, gotcha. Thanks!  

[dtac]

I've suffered from crazy insomnia for years, exacerbated by certain meds like Abilify. I can't tolerate more than 3mg of it without complete and total insomnia, to the point that I haven't found anything that will put me out. I've tried a lot of the same meds you have, and some of the ones you haven't. My .02:

Given than midazolam is given as a pre-op sedative and is known for causing retrograde amnesia, I doubt you'll find a prescriber who will write for it. It's just too risky. Same for barbituates. I actually take triazolam (Halcion) nightly for sleep, and I'm pretty benzo tolerant. It's not highly sedating for me, but just relaxing enough that I can fall asleep when I opt to lay down and close my eyes. The short half-life isn't an issue, although I thought it would be. If one z-drug didn't work for you, chances aren't great that the others will work any better, they're all too similar in MoA. Risperdal was supposed to help with my sleep, but I never got sedated with it. I only got to 3mg, so YMMV. Geodon, OTOH, oscillated between causing intense sedation and activation. My pdoc was considering amitriptyline for me at one point as an AD/sleep agent, but never tried it due to side effect possibilities. Doesn't have a great profile.

There are still random nights that triazolam alone doesn't work, and it sucks. I guess some of us are just not wired for sleep (at night.)

I see mitrazapine (Remeron) isn't on your list of meds. It worked for me (at 45mg) for a number of years for sleep, but it did cause some hangover drowsiness and weight gain. Did zero for my mood, but ADs don't work for my depression. I deem it a lighter weight, low-dose quetiapine. Another thing that worked for me was a combo of daily, low-dose quetiapine (100mg) and another sleep agent, like a z-drug or benzo. The quetiapine alone wouldn't knock me out due to a tolerance build up, but it took enough edge off that other agents worked, like clonazepam. I eventually had to stop quetiapine all together because it started affecting my liver enzymes and blood sugar level.

I understand your desire for unbroken sleep at night, and it is something I've chased for years. Good luck!

[mikl_pls]

33 minutes ago, dtac said:

I've suffered from crazy insomnia for years, exacerbated by certain meds like Abilify. I can't tolerate more than 3mg of it without complete and total insomnia, to the point that I haven't found anything that will put me out. I've tried a lot of the same meds you have, and some of the ones you haven't. My .02:

Given than midazolam is given as a pre-op sedative and is known for causing retrograde amnesia, I doubt you'll find a prescriber who will write for it. It's just too risky. Same for barbituates. I actually take triazolam (Halcion) nightly for sleep, and I'm pretty benzo tolerant. It's not highly sedating for me, but just relaxing enough that I can fall asleep when I opt to lay down and close my eyes. The short half-life isn't an issue, although I thought it would be. If one z-drug didn't work for you, chances aren't great that the others will work any better, they're all too similar in MoA. Risperdal was supposed to help with my sleep, but I never got sedated with it. I only got to 3mg, so YMMV. Geodon, OTOH, oscillated between causing intense sedation and activation. My pdoc was considering amitriptyline for me at one point as an AD/sleep agent, but never tried it due to side effect possibilities. Doesn't have a great profile.

There are still random nights that triazolam alone doesn't work, and it sucks. I guess some of us are just not wired for sleep (at night.)

I see mitrazapine (Remeron) isn't on your list of meds. It worked for me (at 45mg) for a number of years for sleep, but it did cause some hangover drowsiness and weight gain. Did zero for my mood, but ADs don't work for my depression. I deem it a lighter weight, low-dose quetiapine. Another thing that worked for me was a combo of daily, low-dose quetiapine (100mg) and another sleep agent, like a z-drug or benzo. The quetiapine alone wouldn't knock me out due to a tolerance build up, but it took enough edge off that other agents worked, like clonazepam. I eventually had to stop quetiapine all together because it started affecting my liver enzymes and blood sugar level.

I understand your desire for unbroken sleep at night, and it is something I've chased for years. Good luck!

 

Thanks for your response!

Yeah, I figured midazolam wouldn't be one that would be prescribed to patients at home. I also doubt my pdoc would prescribe a barbiturate, but given that I'm desperate enough, she might prescribe something like a sedative dose of phenobarbital, which I've read is 100 mg. One time she mentioned chloral hydrate, but she said they don't use that anymore, but it was interesting that she brought it up on her own. 

I just might ask to give triazolam a try. My mom took that after one of her surgeries and it worked well for her, granted she's not benzo resistant like I am. I've read you can go up to 0.5 mg as a max dose.

I agree about the z-drugs, I see no point in trying zaleplon (Sonata), although when I asked my pdoc about it, she said that it does work well for a lot of people.

I've thought about Risperdal, but given its binding profile, it has a H1 affinity of only Ki = 20.1 nM, but does have a 5-HT_2A affinity of Ki = 0.48 nM, α1A affinity of Ki = 5 nM, and α1B affinity of Ki = 9 nM, which could be beneficial for sleep. But considering that those are trazodone's main MoAs plus mild antihistaminergic action, and it doesn't affect me much anymore, I theorize that Risperdal would be about as efficacious as trazodone for me for sleep.

Geodon is both relaxing and stimulating for me at 40 mg bid, maybe if I tried a higher dose it would be a bit more sedating. But Geodon has caused weight gain in the past for me which I have to avoid, plus being on Emsam (an MAOI) there's the issue of Geodon's SNRI properties (but I've taken TCAs with Emsam before—protriptyline and nortriptyline—without a problem, and Geodon's reuptake inhibition isn't any more potent than theirs, so perhaps it wouldn't be a problem...).

Mirtazapine is on my list of meds in my signature, I think I just forgot to mention it in my OP... I took it from 30 mg to 60 mg and it caused night eating. It did have a sedating effect at first but that quickly wore off. It also did zero for my mood as well.

I might retry quetiapine at a lower dose along with a benzo (like triazolam) or z-drug and see if that combo works for me. Saphris has been what I've been relying on for sleep lately, but it makes me feel so dysphoric when I wake up. Low-dose quetiapine doesn't seem to do that, but it does seem to pack on the pounds more than Saphris despite being on a ketogenic diet. There's no way I'm going to try olanzapine (Zyprexa) again... that stuff makes me feel worse than anything I've taken (worse than Thorazine) and it makes me gain 10 lb within a week no matter how I eat and/or exercise. That and I don't want my fasting blood sugar to be in the 200's again, either.

Thanks again for your response!

[CeremonyNewOrder]

I'm on my phone so I can't see your DX but clozapine put a near end to my insomnia.

[mikl_pls]

3 hours ago, CeremonyNewOrder said:

I'm on my phone so I can't see your DX but clozapine put a near end to my insomnia.

My Dx is bipolar type II (primarily depressed, treatment-resistant), OCD, ADHD, Tourette's disorder, Circadian rhythm sleep disorder (don't know specifically which kind, probably delayed sleep phase disorder if I had to guess though), essential tremor (not necessarily a psych Dx, I know), idiopathic hypersomnia with long sleep time (you'd think I wouldn't have trouble sleeping with this, right?), likely panic disorder, likely agoraphobia, and likely social anxiety disorder.

I've been becoming increasingly curious about clozapine, but the high risk of weight gain, the risk of agranulocytosis, and the required blood work associated with it are what's keeping me from pursuing it. Supposedly loxapine is structurally related to it and isn't associated with significant weight gain, agranulocytosis, nor does it require blood work, but I don't know how it fares in regards to sedation, but I've been considering it as an alternative to Vraylar, lately. I'm wondering if it exhibits antidepressant effects, especially since it produces amoxapine (Asendin), a tetracyclic antidepressant, as a metabolite.

[melissaw72]

3 hours ago, mikrw33 said:

I've been becoming increasingly curious about clozapine, but the high risk of weight gain, the risk of agranulocytosis, and the required blood work associated with it are what's keeping me from pursuing it.

*disclaimer ... I know clozapine works well for many people ... these are just my personal experiences below*

The reason I had to go off of clozapine was because of the agranulocytosis ... my WBC was 0.1.   I also gained lots of weight while on it, and even when I went off of it that side effect never went away. 

The blood work was a huge PITA, but it wasn't a huge deal in terms of blood draw.  The huge pain was having to get a ride there every week, sometimes having to schedule an appt, or waiting an hour because they were so busy.  The blood draw wasn't the PITA part.

Definite sedation on clozaril.  I was too tired and not "with it" to even feel depressed ... so I am not sure about antidepressant effects.

Edited December 24, 2016 by melissaw72

[mikl_pls]

23 minutes ago, melissaw72 said:

*disclaimer ... I know clozapine works well for many people ... these are just my personal experiences below*

The reason I had to go off of clozapine was because of the agranulocytosis ... my WBC was 0.1.   I also gained lots of weight while on it, and even when I went off of it that side effect never went away. 

The blood work was a huge PITA, but it wasn't a huge deal in terms of blood draw.  The huge pain was having to get a ride there every week, sometimes having to schedule an appt, or waiting an hour because they were so busy.  The blood draw wasn't the PITA part.

Definite sedation on clozaril.  I was too tired and not "with it" to even feel depressed ... so I am not sure about antidepressant effects.

 

Thanks for your input re: clozapine. The agranulocytosis and leukopenia and other severe side effects, weight gain, and blood work are what keeps me away from clozapine. I'm a wimp when it comes to blood work because I have small veins that roll when they try to stick me, so having regular blood work would definitely be a PITA for me.

Sedation would be nice, but not for the sake of not feeling "with it," like if I were sedated out of my mind during the daytime as well. I guess it would be good if I weren't depressed, but I'd rather have my wits about me.

I've read low doses, like 25 mg (and probably even 12.5 mg), have been used for treatment-resistant depression.
http://www.dr-bob.org/tips/split/Antidep-effects-of-antipsy.html

Quote

Thoughtful clinicians 20 years ago sometimes used low dose standard neuroleptics to antidepressant effect, particularly thioridazine (e.g. 10 mg), trifluoperazine (e.g., 1 mg), perphenazine (e.g., 2 mg), and even haloperidol (e.g., 0.5 mg). There were some good results here and there, albeit scarcely a reliable treatment. The late Nathan Klein used clozapine from Europe at a dosage of 25 mg with frequent benefit in treatment resistant depression.

1

 

 

[melissaw72]

2 hours ago, mikrw33 said:

Sedation would be nice, but not for the sake of not feeling "with it," like if I were sedated out of my mind during the daytime as well. I guess it would be good if I weren't depressed, but I'd rather have my wits about me.

The kind of sedation I had was the kind where I'd be asleep, waking up not knowing if it was AM or PM.  Like at the times when the sun came up and the sun went down so if you were looking outside it could be either. 

I mean I don't want to scare people (in general) from taking it, because it does work for many people in a good way.  But if someone did not take it I would understand why.

[domovoi]

i like loxapine. i take 25-50mg for sleep as i can't take anything that has an effect on seizure threshold. it's a weak AP with a robust somnolence side effect. i take modafinil during the day to stay awake.

[JustNuts]

Two factors worth highlighting:

• You're on a LOT of meds/supplements. Tinkering with those may drastically change your reaction to sleep meds. I know, I know, it's not easy to rip apart a complicated cocktail and see what does what and what interacts with what, but you should look a bit harder at anything with psych involvement (even if it's not strictly a psych med), and especially at supplements (the RX ones are fine, the OTC ones are dubious and should be examined closely since there's definitely potential for interactions and pseudo-stimulating effects there).
• You're on a pretty hefty regime of stimulating meds (40mg MAS + 9mg selegiline). Maybe this needs to be toned down a bit? Everyone's reaction to amphetamines differs pretty drastically, but a max dose MAOI mixed in with that suggests that you may be pushing it a bit too far.
• You've tried a lot of sleep meds, and from what you've said it seems that some may still be viable if you can just deal with the aftereffects better, so maybe think about trying that approach? Treating side effects from a sleep med isn't ideal, but if it gives you something that'll work, then the trade-off may be worth it.

Other than that...sorry, I wish I had better advice for you.

[mikl_pls]

5 hours ago, melissaw72 said:

The kind of sedation I had was the kind where I'd be asleep, waking up not knowing if it was AM or PM.  Like at the times when the sun came up and the sun went down so if you were looking outside it could be either. 

I mean I don't want to scare people (in general) from taking it, because it does work for many people in a good way.  But if someone did not take it I would understand why.

1

It's not "scaring" me out of taking it per se, but your account of clozapine is definitely enough for me to consider putting it on the back burner and consider it as more of a last resort medicine, especially if Thorazine, Zyprexa, and Seroquel do what they do to me.

Again, I appreciate your response!

 

2 hours ago, domovoi said:

i like loxapine. i take 25-50mg for sleep as i can't take anything that has an effect on seizure threshold. it's a weak AP with a robust somnolence side effect. i take modafinil during the day to stay awake.

4

I believe I will bring up loxapine at my next pdoc appointment, possibly as a replacement for Vraylar, because I don't believe Vraylar is doing anything at 1.5 mg (which is the lowest dose) except causing akathisia, the only difference between 1.5 mg and 3 mg was more akathisia on 3 mg, and when I tried 4.5 mg at my pdoc's recommendation that it would help my depression more, it depressed me more and made my akathisia almost as bad as when I was on Abilify 15 mg and my Fitbit registered 5+ miles/12,000+ steps per day from just pacing and jogging around the house and the dysphoria that accompanied it made me feel like I wanted to scrape my skin off with a grapefruit spoon (don't get me wrong, Abilify was great, just not from that point and thereafter...) I've read loxapine has a relatively low incidence of EPS, especially for a "typical," because it has a similar binding profile to clozapine and olanzapine regarding dopamine and serotonin receptors.

Thanks for your response!

 

1 hour ago, JustNuts said:

Two factors worth highlighting:

• You're on a LOT of meds/supplements. Tinkering with those may drastically change your reaction to sleep meds. I know, I know, it's not easy to rip apart a complicated cocktail and see what does what and what interacts with what, but you should look a bit harder at anything with psych involvement (even if it's not strictly a psych med), and especially at supplements (the RX ones are fine, the OTC ones are dubious and should be examined closely since there's definitely potential for interactions and pseudo-stimulating effects there).
• You're on a pretty hefty regime of stimulating meds (40mg MAS + 9mg selegiline). Maybe this needs to be toned down a bit? Everyone's reaction to amphetamines differs pretty drastically, but a max dose MAOI mixed in with that suggests that you may be pushing it a bit too far.
• You've tried a lot of sleep meds, and from what you've said it seems that some may still be viable if you can just deal with the aftereffects better, so maybe think about trying that approach? Treating side effects from a sleep med isn't ideal, but if it gives you something that'll work, then the trade-off may be worth it.

Other than that...sorry, I wish I had better advice for you.

 

I need to update my signature, I'm no longer on some of those supplements. I'm not taking the alpha-GPC, Noopept, and the vinpocetine, but I am still taking the L-carnitine, partially for purported weight loss benefits and other benefits, but also for dietary supplementation since I'm on a ketogenic diet (to lose weight) which is deficient in L-carnitine and may lead to hypocarnitinemia. There are actually probably many other vitamins and minerals I'm supposed to be supplementing due to the ketogenic diet (which is short-term until I reach my goal weight), I just haven't researched it yet, nor have I consulted a dietician about whether I actually need to supplement with anything (which I should probably do). I've read Zonegran can cause a deficiency in carnitine, but I think that was just an association made with Depakote, which does cause secondary carnitine deficiency. 

But you're right, I am on a lot of meds, which my pdoc comments on every time she makes any major changes to my regimen. You've inspired me to review my meds to consider if any of them have insomnia as a side effect because I haven't really considered that with my non-psych meds before...

• I have tried consolidating my meds before by stopping my allergy/asthma maintenance meds (like Clarinex and Singulair), but every time I've stopped them, I'm reminded of just how much I really need them. (Maybe if I gradually tapered off of them? They do make a 4 mg and 5 mg chewable Singulair and for pediatric patients and an ODT desloratadine 2.5 mg...)
• I stopped minocycline for a while for the same reason, but my acne got really bad again (which was caused by Lamictal originally, which I haven't been on in over a year. It got better when I went off of it, but I haven't been able to get total control of it ever since...)
• One med I may be able to stop soon is Victoza, if I can get my doctor's approval on that (last time my A1c was checked, it was 5.0%, and I started at 5.8%, which was borderline diabetes or prediabetes, which is when I started metformin, which didn't help, which is when I started the Victoza). Although I am still trying to lose quite a lot of weight (have lost 33.9 lb since 10/27/16, and still have 41.1 lb to go until my goal weight) and Victoza does (or did) help with weight loss (though I think its weight loss benefits have mostly dissipated now); nevertheless, I think if it came down to it, if I didn't need to take this for blood sugar anymore, this could be one less med to take, and it would certainly be easier on my kidneys if anything. One thing I wonder about quitting Victoza is potential psychiatric benefits, because as a GLP-1 agonist, one of the CNS functions of GLP-1 is to increase anxiety, and I have wondered if I discontinued the Victoza if some or most of my anxiety would cease and thus if I would be able to sleep better at night...
• I'm on Keppra for essential tremor because I used to be on propranolol but had bradycardia and hypotension with it when I reached the dose necessary to control my tremor (120-160 mg). (I've tried primidone before and failed that one due to psychiatric adverse effects.) I don't think Keppra causes insomnia; in fact, one of its side effects is somnolence. But it can cause anxiety, which I guess could lead to insomnia (though I don't think it causes anxiety for me; in fact, it seems to help with my OCD just a little).
• The Synthroid can cause insomnia, I guess especially if my thyroid hormones are too high. I think the last thyroid panel I had was in July of this year, so perhaps another thyroid panel could be warranted? (Here I was wondering recently if my Synthroid needed to be raised because of my unremitting depression symptoms... lol)
• The Xopenex solution and Proventil HFA inhaler I barely use; however, I do use the Breo Ellipta inhaler almost daily, which may be stimulating enough to be a cause of my insomnia, but it is part of my asthma maintenance regimen, so until I'm given the all clear, I probably need to keep using that.

As for my main medicines...

• Before I was on Adderall 40 mg + Emsam 9 mg, I was on Adderall 20 mg + Emsam 6 mg, and I was beyond bottom-of-a-bottomless-pit depressed, my ADHD symptoms were so bad I was veering into the opposite lane of traffic from being distracted by things like road signs or pretty houses or trees or whatever, and my idiopathic hypersomnia was bad enough to where I was taking multiple 1-3 hour-long naps per day and sleeping 11+ hours at night without any hypnotics. The increase in Emsam I don't think has done much to benefit me, because there was a period of about a week when I was without Adderall, and my pharmacy had to order my Adderall XR and then forgot to do or something (they never really explained to me what happened exactly... they said "their computers have been acting up lately" or something like that) and it had to be ordered on the next truck coming in (during which my depression worsened significantly—forced drug holiday was not fun!) The first week or so after taking the Adderall XR, my depression lifted a little but eventually returned to where it was back in the deep rut where it currently is, although the daytime naps did stop, and I now get about 4-5 hours of sleep on average according to my Fitbit (though one night I managed to get 11 hours somehow... not sure how that happened...) My sleep is also delayed, like I don't get sleepy (if I do get sleepy) until sometime in the early morning, and it takes me a good 45 minutes to an hour to fall asleep now, whereas before, because of IH, my sleep latency time was around 5 minutes, which I guess really isn't normal but I was so used to just laying down and being able to just pass out.
• For what it's worth, I figured I'd mention that Emsam's max dose is 12 mg, and I have heard of it being higher than that—15 mg, 18 mg, 21 mg, even 24 mg (I'm sure without stimulants, though!) This is off-topic from my OP, but considering how depressed I've been, even with Emsam 9 mg + Adderall XR 40 mg, I was considering either asking to go up to Emsam 12 mg and let my pdoc judge what to do with my stimulant dose (keep it, lower it, try doing away with it, which might not be a good idea given my track record, or maybe try switching to methylphenidate, which hasn't been effective for me before really, but then again I've only tried 30 mg which was the most my pdoc was willing to prescribe for some reason—I wasn't on an MAOI at the time), or switch from Emsam to Parnate and let her judge what to do with the stimulant since Parnate is supposedly the worst offender of hypertensive crisis. While I know stimulants aren't considered mainstay depression treatment, I mention the Adderall as part of my depression treatment because she considers it as such because of the potentiation of the MAOI (but it also helps with ADHD and IH of course) and because I don't seem to respond to any antidepressants to speak of.
• Indeed I have tried a lot of sleep meds. I think @melissaw72 has a point with combining sleep meds, and you have a point in retrying some that I've already tried. Perhaps if I take both of your points into account, I could possibly retry something that had negative side effects on me at higher doses, like quetiapine, which instead of 300 mg, I could try at, say, 100 mg, and combine it with something that has a different MoA of sedation, like a benzo, perhaps one that I haven't tried before, perhaps the one @dtac mentioned, triazolam, and see how that fares. The other thing I was considering was, as I mentioned above, switching Vraylar for loxapine and seeing if it has the same sedating effects as it does for @domovoi. (Just realized that both insomnia and somnolence are adverse reactions of Vraylar according to Epocrates.)

Thanks for your response, I think you had better advice than you may have realized.

 

Also, anyone I didn't thank for their response, I'd like to take the opportunity to thank you now. You have all had wonderful responses, and I appreciate them more than I can express.

[JustNuts]

Okay, let's prioritize combining and/or retrying sleep meds then, with a secondary focus on continuing your look at the non-psych meds when you have time to explore alternatives if possible (given that you've eliminated most of the OTC supplements and can't really stop some of the suspect meds, it sounds like there isn't too much room for change, but you've mentioned some viable possibilities to explore).

14 minutes ago, mikrw33 said:

As for my main medicines...

• Before I was on Adderall 40 mg + Emsam 9 mg, I was on Adderall 20 mg + Emsam 6 mg, and I was beyond bottom-of-a-bottomless-pit depressed, my ADHD symptoms were so bad I was veering into the opposite lane of traffic from being distracted by things like road signs or pretty houses or trees or whatever, and my idiopathic hypersomnia was bad enough to where I was taking multiple 1-3 hour-long naps per day and sleeping 11+ hours at night without any hypnotics. The increase in Emsam I don't think has done much to benefit me, because there was a period of about a week when I was without Adderall, and my pharmacy had to order my Adderall XR and then forgot to do or something (they never really explained to me what happened exactly... they said "their computers have been acting up lately" or something like that) and it had to be ordered on the next truck coming in (during which my depression worsened significantly—forced drug holiday was not fun!) The first week or so after taking the Adderall XR, my depression lifted a little but eventually returned to where it was back in the deep rut where it currently is, although the daytime naps did stop, and I now get about 4-5 hours of sleep on average according to my Fitbit (though one night I managed to get 11 hours somehow... not sure how that happened...) My sleep is also delayed, like I don't get sleepy (if I do get sleepy) until sometime in the early morning, and it takes me a good 45 minutes to an hour to fall asleep now, whereas before, because of IH, my sleep latency time was around 5 minutes, which I guess really isn't normal but I was so used to just laying down and being able to just pass out.
• For what it's worth, I figured I'd mention that Emsam's max dose is 12 mg, and I have heard of it being higher than that—15 mg, 18 mg, 21 mg, even 24 mg (I'm sure without stimulants, though!) This is off-topic from my OP, but considering how depressed I've been, even with Emsam 9 mg + Adderall XR 40 mg, I was considering either asking to go up to Emsam 12 mg and let my pdoc judge what to do with my stimulant dose (keep it, lower it, try doing away with it, which might not be a good idea given my track record, or maybe try switching to methylphenidate, which hasn't been effective for me before really, but then again I've only tried 30 mg which was the most my pdoc was willing to prescribe for some reason—I wasn't on an MAOI at the time), or switch from Emsam to Parnate and let her judge what to do with the stimulant since Parnate is supposedly the worst offender of hypertensive crisis. While I know stimulants aren't considered mainstay depression treatment, I mention the Adderall as part of my depression treatment because she considers it as such because of the potentiation of the MAOI (but it also helps with ADHD and IH of course) and because I don't seem to respond to any antidepressants to speak of.

It sounds like you're tolerating the Adderall/Emsam combo fine then, the Emsam is still probably interfering with sleep to some extent, but the Adderall likely isn't. Didn't realize the max dose of Emsam was 12mg, I mistakenly thought it was 9mg, I must have assumed it was 3-6-9 instead of 6-9-12...oops. Ah well, at least I still remembered the core details correctly...

As for the "off-topic" part, IMO it'd be better to tinker with the Adderall first before touching the MAOI.

[mikl_pls]

6 minutes ago, JustNuts said:

Okay, let's prioritize combining and/or retrying sleep meds then, with a secondary focus on continuing your look at the non-psych meds when you have time to explore alternatives if possible (given that you've eliminated most of the OTC supplements and can't really stop some of the suspect meds, it sounds like there isn't too much room for change, but you've mentioned some viable possibilities to explore).

It sounds like you're tolerating the Adderall/Emsam combo fine then, the Emsam is still probably interfering with sleep to some extent, but the Adderall likely isn't. Didn't realize the max dose of Emsam was 12mg, I mistakenly thought it was 9mg, I must have assumed it was 3-6-9 instead of 6-9-12...oops. Ah well, at least I still remembered the core details correctly...

As for the "off-topic" part, IMO it'd be better to tinker with the Adderall first before touching the MAOI.

 

I'll keep all this in mind. Thank you for your responses and the time and effort you put into them.

[melissaw72]

4 hours ago, mikrw33 said:

It's not "scaring" me out of taking it per se, but your account of clozapine is definitely enough for me to consider putting it on the back burner and consider it as more of a last resort medicine, especially if Thorazine, Zyprexa, and Seroquel do what they do to me.

Again, I appreciate your response!

FWIW ... just wanted you to know that I wasn't really referring to you when I said, "scare people" ... I said it to cover myself because I know clozaril works for some people and i didn't want to make it seem like I was only referring to the negative stuff. 

 

Edited December 24, 2016 by melissaw72

[mikl_pls]

1 minute ago, melissaw72 said:

FWIW ... just wanted you to know that I wasn't really referring to you when I said, "scare people" ... I said it to cover myself because I know clozaril works for some people and i didn't want to make it seem like I was only referring to the negative stuff. 

2

I knew you weren't. I understood what you meant/why you were saying it.  

[Butterflykisses]

I have actually found higher doses of seroquel at bedtime put me to sleep. I take 100mg in the Morning/Early Afternoon, 200mg Late Afternoon, and 400mg Evening/Bedtime, (700mg total). I find about 45 mins after my 400mg dose I feel extremely drowsy/sedated. Sometimes the 200mg Late Afternoon dose makes me sleepy but I can usually push through it, however the 400mg tablet knocks me out. 

 

FWIW I also take 1125mg of Lithium Carbonate ER, Propranolol, and Prozac at bedtime as well. Prozac is not stimulating to me. 

 

I wake up without feeling drowsy. I think the IR version of Seroquel is out of your system faster resulting in easier time in the mornings. However, I have only taken Seroquel ER once and it wasn't as potent for me. 

 

Oh and I have lost weight on it.

 

 

[melissaw72]

6 hours ago, Butterflykisses said:

I think the IR version of Seroquel is out of your system faster resulting in easier time in the mornings. However, I have only taken Seroquel ER once and it wasn't as potent for me. 

I think you are right about the IR being out of your system faster than the ER.  I've tried other meds that are in IR, SR, XL etc forms, and I have found that with all of them, the only ones that work are the IR ones ... the others aren't as potent enough for me.

[Chaotic-neutral]

Have you tried chlorprothixene? It made me sleep, at least.

[melissaw72]

1 hour ago, Chaotic-neutral said:

Have you tried chlorprothixene? It made me sleep, at least.

I just looked this med up and it is not approved for use in the US:

 

[Chaotic-neutral]

4 minutes ago, melissaw72 said:

I just looked this med up and it is not approved for use in the US:

 

Oh, sorry. I always forget that is different for usa. 

[melissaw72]

4 minutes ago, Chaotic-neutral said:

Oh, sorry. I always forget that is different for usa. 

No need for an apology!  I didn't mean anything against it ... I had looked it up to see what kind of med it was and different things about it.  Happened to come by this and thought I'd post it. So really, no need for an apology

[Persona_Is_Life]

I have fragmented sleep as well and awful insomnia despite my idiopathic hypersomnia diagnosis. It sucks. I hope you find relief soon.

[mikl_pls]

24 minutes ago, Persona_Is_Life said:

I have fragmented sleep as well and awful insomnia despite my idiopathic hypersomnia diagnosis. It sucks. I hope you find relief soon.

Thanks! It is rather frustrating. What's even more frustrating is it's never consistent... I seem to recently have switched over into "hypersomnia mode" predominantly, where I'm sleeping 12-15 hours a night and taking 1-3 hour naps multiple times a day. But yet every now and then I just won't sleep at all or will sleep 1-3 hours at night. I don't understand it. I could probably use a little work on my sleep hygiene, but still...

[mikl_pls]

On 12/26/2016 at 4:05 AM, Chaotic-neutral said:

Have you tried chlorprothixene? It made me sleep, at least.

I wish I could try chlorprothixene, I've read it may have intrinsic antidepressant properties. It seems the thioxanthene antipsychotics, especially flupenthixol (Fluanxol?), have preferential presynaptic dopamine antagonism in low doses which is apparently very useful for depression because it induces dopamine release. The only presynaptic dopamine antagonist in the US is buspirone (BuSpar) and it made me batshit manic and anxious as hell when I took it, which is ironic because it's supposed to be an anxiolytic agent. Other antipsychotics that act as preferential presynaptic dopamine antagonists that we don't have in the US that I wish we had are sulpiride and amisulpride, and I believe tiapride has some special features like a high regional selectivity for the limbic areas which reduces its risk for EPS and would implicate a specific target on a part of the brain that controls emotion, plus I believe it too, as a benzamide derivative like amisulpride and sulpiride, has preferential presynaptic dopamine antagonism in low doses.

[mikl_pls]

So I was prescribed triazolam (Halcion) by my pdoc night — 0.25 2 po qhs prn (0.5 mg). Have to go pick it up today.

In the meantime, I think I found something that works that doesn't completely oversedate me but that also doesn't work at all. If I take 2-5 mg fluphenazine (Prolixin) + a benzo of some sort (usually Xanax or Serax), it has me dozing off quite nicely within 30 minutes or so. I never would've figured that combo of drugs would've worked, especially because I wouldn't have thought of Prolixin as being a sedative antipsychotic.

Edit: I also asked about loxapine and she said that with my akathisia, she felt it would make it worse and so was vehemently opposed to prescribing it for me. Bummer. Oh well, maybe another time when I don't have residual akathisia from Vraylar.

Edited January 6, 2017 by mikrw33

[mikl_pls]

Went to fill my prescriptions and found out that I apparently need a PA for Halcion... Not sure if it was because I was prescribed 60 for 0.5 mg (the max dose) or if the medicine itself requires a PA in general. Still frustrating. PAs hardly ever go through with my pdoc's office, so I guess I can't count on it being filled at all... I guess I'll still to my fluphenazine + benzo combo for now.

[dtac]

1 minute ago, mikrw33 said:

Went to fill my prescriptions and found out that I apparently need a PA for Halcion... Not sure if it was because I was prescribed 60 for 0.5 mg (the max dose) or if the medicine itself requires a PA in general. Still frustrating. PAs hardly ever go through with my pdoc's office, so I guess I can't count on it being filled at all... I guess I'll still to my fluphenazine + benzo combo for now.

A PA for Halcion? Probably for the quantity.

[mikl_pls]

1 hour ago, dtac said:

A PA for Halcion? Probably for the quantity.

I figured as much. It's strange because the max dose if 0.5 mg, so there really shouldn't be a PA for it, but then again, my insurance is screwing me left and right with everything.

[melissaw72]

2 hours ago, mikrw33 said:

Went to fill my prescriptions and found out that I apparently need a PA for Halcion... Not sure if it was because I was prescribed 60 for 0.5 mg (the max dose) or if the medicine itself requires a PA in general. Still frustrating. PAs hardly ever go through with my pdoc's office, so I guess I can't count on it being filled at all... I guess I'll still to my fluphenazine + benzo combo for now.

If the prior auth is denied, then ask to appeal it.  The DR would have to write a letter to the insurance company.  Could also call instead, probably easier, and have your DR ask what criteria do you have to meet in order for it to be approved?

[mikl_pls]

1 hour ago, melissaw72 said:

If the prior auth is denied, then ask to appeal it.  The DR would have to write a letter to the insurance company.  Could also call instead, probably easier, and have your DR ask what criteria do you have to meet in order for it to be approved?

 

I tried all that years ago many times, and it never worked. I've more or less given up getting PAs from my pdoc's office. If I find I have to get a PA from something my pdoc prescribed, I just go to my GP and get him to prescribe it because they're way more on top of the ball on getting that kind of thing handled.

[melissaw72]

1 minute ago, mikrw33 said:

I tried all that years ago many times, and it never worked. I've more or less given up getting PAs from my pdoc's office. If I find I have to get a PA from something my pdoc prescribed, I just go to my GP and get him to prescribe it because they're way more on top of the ball on getting that kind of thing handled.

But it would still need a PA with the other DR, right? 

If your pdoc prescribes something and it needs a prior auth, is it just that your other DR would take the time for the prior auth?

[mikl_pls]

56 minutes ago, melissaw72 said:

But it would still need a PA with the other DR, right? 

If your pdoc prescribes something and it needs a prior auth, is it just that your other DR would take the time for the prior auth?

 

Right, my GP is better and handling, managing, and getting PAs to get through.

[melissaw72]

5 minutes ago, mikrw33 said:

Right, my GP is better and handling, managing, and getting PAs to get through.

I'm glad you have someone to help you out with the PAs ... they can be such a PITA sometimes!

[dtac]

So I'm rolling through a multi-day spell of insomnia, and I thought I'd see if you found anything to help you? Halcion quit working for me totally, and Xanax isn't putting me to sleep (but it will cause me to sleep longer). 

My pdoc mentioned doxepin as an option, which I see is in your list of meds you haven't tried. He mentioned that for sleep, the dose is around 3-6mg, which should mitigate most of the notable side effects. However, it's contraindicated with a MAOI, which I see you're on, and since it's a TCA, you run the risk of causing mania. Just thought I'd share that bit of info, since you were considering it.

I think we're going to try Lunesta again, which has worked for me in the past. If not, doxepin may be up.

Edited January 11, 2017 by dtac

[mikl_pls]

Well, turn out Halcion isn't even on my formulary for my insurance—not covered at all. I can get temazepam, or flurazepam, but not triazolam... So stupid. T__T

I've just been resorting to antipsychotic + benzo combinations. Like I've found 2 mg Xanax + 30 mg Serax + 2-5 mg Prolixin to be an effective combo—one benzo for now, one benzo for later, and an antipsychotic to calm me down. When I'm really desperate, I'll still occasionally take Thorazine 100 mg, but last time I did that recently I slept for 18 hours and change according to my Fitbit.

I have been interested in doxepin. I'd live to try either Silenor (the 3 mg and 6 mg version) or just regular old Sinequan (starting at 10 mg, 25 mg, 50 mg, etc.). It's classically contraindicated with an MAOI, but it can be taken concomitantly with an MAOI carefully. I've taken Emsam with protriptyline and nortriptyline before, plus a stimulant. I don't really have to worry about mania that much—I RARELY get hypomania ever, like once in a blue moon. It's usually dysphoric or mixed episodes.

Lunesta didn't do sh*t for me. lol. I'm amazed it worked for you. I'd love to try doxepin. I've brought it up to my pdoc several times, but she said it can cause weight gain in the upper doses (≥10 mg), which is why we always ultimately decided against it. But it can't be any worse than Seroquel's weight gain or Zyprexa's weight gain.

Good luck finding something that works!

Edited January 11, 2017 by mikrw33

[dtac]

You should check Silenor to see if it's covered -- my insurance has pretty solid RX coverage and I discovered Silenor isn't covered at all. Might be due to the crappy "we don't cover brand name insomnia drugs" rule they instituted last year, though. Standard retail cost is crazy high, but I bet it can be found for less.

It is funny, because Ambien doesn't work 9 out of 10 times for me, but Lunesta tends to work much better, albeit with a 1h+ delay in action. I'm not a z-drug fan, because of the inconsistent response I have, but it's either use z-drugs/benzos and get a mild response, or histamine drugs that knock me out for 10h+, give me the munchies, and leave me hung-over the next morning (Seroquel and Remeron both did that... when they worked.)  If I'm really wired, nothing will take me down, but once I do fall asleep, whatever I've taken seems to have a multiplicative effect. 1mg of Xanax wouldn't knock me out the other night, but once I fell asleep, I slept for almost 10h. Pdoc did say Xanax is crappy for helping you fall asleep, so is Restoril, and Klonopin, Ativan tends to work better. He prefers benzos over histamine because of the shorter duration.

At least I have a pdoc appointment in 2 weeks, so if the Lunesta isn't working, we can try something else. I'm just glad I didn't have to go in for an office visit, doctors are loathe to do anything without a face-to-face to bill for these days.

[notloki]

Doxepin comes in 3 and 6 mg tabs so I don't see the advantage of Silenor. The pharmacy probably does not stock these strengths but can order it. CVS and Walgreens seem happy to do this. At these low doses I don't think weight gain will be an issue.

[mikl_pls]

The purported advantage of Silenor (3 mg/6 mg doxepin) is that it's such a small dosage that it's selective for the H1 histamine receptor only. The Sinequan version of doxepin (old version) comes in 10 mg, 25 mg, 50 mg, 75 mg, 100 mg, and 150 mg capsules, as well as a 10 mg/mL oral solution. At these higher doses are the doses at which weight gain will be an issue, but you're right that the 3 mg and 6 mg doses weight gain won't likely be an issue.

[mikl_pls]

Here I am, 8 mg Xanax, 90 mg Serax, 200 mg Thorazine, and 150 mg trazodone, and no signs of sleepiness or drowsiness. This is ridiculous.

[melissaw72]

9 minutes ago, mikrw33 said:

Here I am, 8 mg Xanax, 90 mg Serax, 200 mg Thorazine, and 150 mg trazodone, and no signs of sleepiness or drowsiness. This is ridiculous.

I agree. 

Did you eat with these meds in you, or on an empty stomach?  That might make a difference as to how well they work for you or not.  Does for me anyway.

[dtac]

4 hours ago, mikrw33 said:

Here I am, 8 mg Xanax, 90 mg Serax, 200 mg Thorazine, and 150 mg trazodone, and no signs of sleepiness or drowsiness. This is ridiculous.

Is it possible you've over-saturated your H1 and GABA receptors and desensitized them? That's a ridiculously large amount of drugs to get no effect.

[JustNuts]

14 hours ago, mikrw33 said:

Here I am, 8 mg Xanax, 90 mg Serax, 200 mg Thorazine, and 150 mg trazodone, and no signs of sleepiness or drowsiness. This is ridiculous.

...damn. Maybe it's related to your MAOI cross-taper?

[mikl_pls]

That was a stupid mistake I'm never doing again... XD

[melissaw72]

1 hour ago, mikrw33 said:

That was a stupid mistake I'm never doing again... XD

Good idea ... it was a lot to take.  Hopefully you weren't too (?sick?) last night.  I'm glad it is over with.