Invest in ME Conference 12: First Class in Every Way
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Sleep and the drugs that stop working

Discussion in 'Sleep' started by meeKO, Jun 15, 2015.

  1. meeKO

    meeKO

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    Hi,
    As some of you know I post on behalf of my wife who is not up to typing and crafting sentences (such as mine are...), of late she has continued her decline, at most sitting up for half an hour a day.

    Another dreadful consequence is the continuing degradation of her sleep.

    She is unable to stay asleep like she used to and achieve the necessary amount to avoid exacerbating her symptoms the following day (often fainting or being unable to move at the end of a day).
    She can't get to sleep without her nightly drugs and is light sleeping more and more in the early morning.

    She currently takes
    -Seroquel (every night)
    -Melatonin (every night)
    -Endep (amitriptyline)(every night)
    -Paxam (most nights)
    -Stillnox (occasionally for fear of tolerance)
    -Valium (occasionally to KO her when she can't get back to sleep)

    So she feels very cornered and desperate, knowing that she can't keep upping these medications or indeed using them every night.

    So we're asking the forum of fellow sufferers to see what you might recommend to help change it up or cycle through.

    What has worked for you with such severe symptoms and lack of sleep?

    We appreciate any good suggestions although she's never had much luck with herbal or alternative options.

    She has POTS and Leaky gut, is extremely sensitive to foods and some medications and we are also easing her into a treatment of Low Dose Valcyte, hoping to avoid the side effects this time.

    Thanks!
     
  2. AndyPandy

    AndyPandy Making the most of it

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    Really sorry that your wife has declined further @meeKO.

    I don't have any suggestions for such a tough problem.

    I hope that others on PR can help.

    Best wishes, Andy
     
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  3. meeKO

    meeKO

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    AndyPandy likes this.
  4. Valentijn

    Valentijn The Diabolic Logic

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    @meeKO - Some of those medications can aggravate low blood pressure, which is often what triggers the tachycardia in POTS. Can she get better treated for her OI, and/or have her sleep meds reviewed by a doctor with her OI problems in mind?
     
  5. minkeygirl

    minkeygirl But I Look So Good.

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    @meeKO I have serious sleep issues. Without a benzo to initiate sleep I will not sleep at all.

    I have a bunch of stuff and the key to not having to keep up the dose is to alternate between things. So I never take the same thing 2 nights in a row except trazodone. I need stuff to initiate sleep, then I usually wake at least once, although now it's 2 or 3 times and I need something to take those times, that is not too sedating so I won't feel drugged all day.


    To initiate sleep I take one benzo and then add seroquel or doxepin, trazodone and an antihistamine. I may toss in Kava if I feel too awake.

    When I wake in the middle of the night I take one or two of the OTC things. Again, I rarely take the same thing more than 2 days in a row. This will help with tolerance.

    Another thing I do is take Tussin DM a few nights a week. The DM is supposed to help with tolerance and I find that it helps me to sleep a little better.

    I have been doing this for a year. Before that all I needed was trazodone and suntheanine. I found the anxiety of worrying that I would not sleep was a huge problem so once I told myself, oh well when I can't sleep that was easier.

    There are some nights no matter what I take I can't sleep. Who knows what my brain is doing.

    Oh and I take the propranolol for my heart palpitations because I can't sleep with them. I may or may not have some kind of dysautonomia.

    Some people like baclofen. It's all trial and error though as to what works when. Tizanidine doesn't work for me to initiate sleep but it's great for me when I wake around 3 or 4 a.m.

    RX

    Halcion .25 mgs
    Oxazepam 10 mgs
    Trazodone 50 mgs
    Ambien
    Seroquel (25 mgs)
    Doxepin 10 mgs
    Propranolol
    Tizanidine

    OTC

    Doxylamine (antihistamine)
    Chlortrimetron Antihistamine
    Kava
    SunTheanine
    Passion Flower
    Phenibut
     
  6. ahmo

    ahmo Senior Member

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    I had good results with pituitary glandular. I also used marijuana when my sleep was very poor. I'm not sure it was exactly a sleep aid, but it calmed my body and mind while I lay there unable to sleep, which helped me feel less unwell the next day. When I got up to theraputic doses of MB12, my life-long tendency to insomnia, which was unremitting w/ ME, disappeared. Since then, I go to sleep, stay asleep, and if I wake up, can generally return to sleep easily. Very sorry for your and her problems. Sleeplessness is awful.:aghhh::balloons:
     
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  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Could alternate between stilnox, imovane and valium to help initiate sleep. With drs instructions and as minkey has said alternate the sleep sustainers to ie seroquel, endep, deptran, doxylamine, diphenhydramine. The last two are antihistamines u can buy over the counter or bulk supply online.

    so should be able to get away with one of each. If she has a good break from seroquel , it should work for her again. It appears she has built a tolerance to the endep and seroquel .

    Good luck
     
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  8. meeKO

    meeKO

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    Hi @minkeygirl
    Wow. Thanks for the fantastic personal advice.
    Forgive me for not knowing all the acronyms or medical terms or abbreviations (you guys on this forum are super informed...trying to keep up).
    Which are the benzos in your list? sorry if this is a dumb question... I think Jo's are Paxam and Valium...? Unless I'm mixing that up also...
    Yes it's so hard when you can't help but get worked up. Meditating through and shifting mindset is part of it but not the solution to an entire restless night.

    That's great advice, also reiterated by @heapsreal about alternating. We just need to get prescriptions for the alternatives as she has indeed built up a tolerance to seroquel and endep (300 mgs and 50mgs a night normally)
    I am scribbling down everything you both threw up there to see what we can and quick.

    Yeah funnily enough she uses restavit for its antihistamine effect but looking at those others may be helpful too.

    Thanks Guys :love:
    Great stuff to look into!
     
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  9. meeKO

    meeKO

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    Hey @Valentijn ,
    You're so right. Alot of stuff has been dumped on her by various doctors. We have to see a clinical pharmacologist who can take into account her OI, sleeping and the balance of drugs!
     
  10. Valentijn

    Valentijn The Diabolic Logic

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    Another thing I should mention is that SSRI's (like amitriptyline) make most of us sicker.

    Melatonin turns me into a total zombie with increased intensity of symptoms as well. So I only take it for a couple days when I really need to switch my sleeping pattern due to jet lag. I seem to recall that studies have shown it not to be effective as a sleep-aid when used every night, though that was probably only tested in healthy people.
     
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  11. meeKO

    meeKO

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    Thanks @Valentijn , Right. I did not know that, and similarly I thought Melatonin was a fairly benign and regular drug. I shall have to research the options!
     
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  12. meeKO

    meeKO

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    It's ok @minkeygirl I did my own research on which ones are benzos. :redface:
    Does Phenibut do much? I sometimes use GABA (gamma- aminobutyric acid which is similar) on her but it doesn't seem to do much at the tiny, wee recommended dose.
     
  13. minkeygirl

    minkeygirl But I Look So Good.

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    @meeKO i've been there so I know. You just have to kind of surrender to it and it's so much easier. Heapsreal really helped me when I just was not sleeping at all. Probably why I sound like him

    Triazolam (halcion) is a short acting benzo to initiate sleep. Oxazepam is a shorter acting benzo, also known as serax. ambien is a Z drug sort of like a benzo. I don't use Valium, only because I haven't asked my doc.

    I see you are in OZ, like @heapsreal so some meds I talk about you can't get there. He could tell you what you can get there.

    The OTC antihistamine I use is doxylamine. There are muscle relaxants you can use too.

    GABA was worthless for me. Phenibut helps me relax if I take about 1000 or more mgs. It didn't put me to sleep but I like it when I wake in the middle of the night. I think because I already have drugs in me it works better.

    But you have to be careful with Phenibut. You can't use it more than 2 -3 days in a row max and then you have to take a break.

    IMO, when you have severe insomnia like I do, like heapsreal does and like your wife, OTC stuff, glandulars, none of that stuff is going to work. You just have to use drugs to knock you out. I tried sleeping without a benzo to initiate it and it just does not work

    You might want to PM heapsreal. Since he's in Australia too he can give you more specific info on what to get and where to get it.
     
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  14. msf

    msf Senior Member

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    I used to think that the medication I usually take for sleep, Trazadone, lost it's effectiveness every few weeks. Since starting on a FODMAP diet a few months ago, however, I have noticed that I am sleeping much better than before (sometimes through the night!), and I only had to swap the Trazadone for something else (Zopiclone, which makes me feel awful) when I didn't stick to the diet and my GI symptoms flared up again.

    If your symptoms seem to be mostly gut-mediated, like mine are, I would suggest giving the FODMAP diet a try - my condition has improved considerably since I started it, and the improvements in sleep have been a big part of this.
     
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  15. meeKO

    meeKO

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    Hi @msf
    Yeah so she is on the FODMAP plan to the Nth degree. All those naturally occuring chemicals we wouldn't even think about are ruled out or only able to eat foods containing the lowest amounts. She's a real foodie so it adds to the frustration. Since she's been on it she hasn't improved (except she's not so nauseous so we know it's working) and her symptoms and overall health has only gotten worse.
    Thanks for the suggestion though. I know her specialist is intent on the Gut being answer, which we're happy to treat also but for sleep we have to start to look elsewhere.
     
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  16. meeKO

    meeKO

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    Yes our friend @heapsreal has already been such great help in advising me on some medication. Much indebted. I'll look up the ones you have both mentioned

    Thanks for the clarification


    Right. Thanks for the heads up.

    Yes this is definitely her experience. We just haven't been smart about cycling them. In fact I'm a little surprised it's never been brought up by the pharmacist or her doctors who see her spiralling up on doses or seroquel etc.
    The trick is now to convince the same doctors to prescribe a couple more and trust us that it's for the right reason, in helping her off existing drugs.

    Thank you @minkeygirl and @heapsreal this is exactly what I am after. Suggestions and alternatives from experienced people is just invaluable.
     
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  17. minkeygirl

    minkeygirl But I Look So Good.

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    @meeKO When I explained to my doc, who I had just started seeing, what I wanted to to, about alternating things to avoid tolerance, and that I needed things to sustain sleep and to initiate sleep, he actually was good with it. Because I alternate things I don't need refills for things for months so he knows I'm not abusing them.

    Tell him you aren't going to take 2 benzos together. That those are to get her to sleep, the other stuff is to keep her asleep.

    Don't expect chemists or docs to tell you this stuff. They probably don't even think about it.

    But this is all trial and error to figure out dosage and what combos work for you. I have an app on my phone so I can keep track of what I take to get to sleep and how it worked. When I wake in the middle of the night I forget but at least I have an idea of what I'm doing.

    If the doc won't cooperate, there are ways to get stuff. You can ask me or heapsreal if it comes to that.

    I hope you find this next thing as funny as I did. Someone who couldn't sleep posted this on a forum a few year ago and it still cracks me up.

    To sleep, make a pot of camomile tea in a cast iron tea kettle. Pour yourself a cup, then bash the kettle into your skull!
     
    Last edited: Jun 16, 2015
  18. meeKO

    meeKO

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    :rofl:Told Jo that one!
    Yeah, we'll see how it goes alternating benzo types with a sustained sleeper, is this what they call a hypnotic? I was researching them a bit, not sure if I've got it right, and combine them with the OTC and herbal/supplement ones when needed.
    I'll let you know how we go.
    Last night she slept pretty well actually if a little dosed up.:cautious::sleep:
     
  19. Misfit Toy

    Misfit Toy Senior Member

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    I also have a horrible time sleeping. What helps me to sleep is Clonopin, Ativan, Ambien in extended release formula, Ketamine (compounded because it's a horse tranquilizer.). Tizanidine is a muscle relaxer that also helps...sometimes even more than ambien.

    I don't know enough about POTS, but like Valentijn said....that needs to be really checked.

    Benadryl helps, but like heaps and Minkey said...I rotate these drugs and don't take them every night but switch it up.
     
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  20. meeKO

    meeKO

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    Great @Misfit Toy, thanks for pitching in. Wow you can get Ketamine?! You have to go to a hospital or clinic in australia to get that and usually as an inpatient, which we did but that's another story...:eek:
    I will look those up. Do you alternate night for night on these ones?
     
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