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Diazepam Experiment

Discussion in 'General ME/CFS Discussion' started by helperofearth123, Dec 8, 2017.

  1. helperofearth123

    helperofearth123 Senior Member

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    After the Rituximab study failed to find a treatment I started to try other things. I tried diazepam with fascinating and tantalising results, so far. Experiment in progress.

    I took 1 10mg of diazepam on day 1. I felt what you would expect, muscle aches completely gone and there was a very small improvement in brain fog, but no more energy and muscle aches are only a minor symptom for me. Disappointing.

    Day 2. Took 10mg again and went for a short walk. Found I couldn't walk any further than usual (about 10 mins) but when I got back the PEM didn't happen which usually is the form of much worse muscle aches and worse brain fog. I just felt similar to how I felt before the walk. So valium is good for my PEM but that's it. Still disappointing as its far too addictive to be worth taking for taking that symptom away.

    That same evening I took another 10mg pill and went to sleep but I only slept for 2 hours.

    When I woke up I was shocked. My symptoms had largely vanished. I was massively better. For the first time in years it felt like I had had refreshing sleep. Like my body had healed in the night the way it is supposed to.

    I went on a double length walk that day (without taking any more valium - so this is the day after I took it). I had no PEM. I wrote a 2 and a half page letter to my MP about complex stuff. I walked to the post box on foot. No PEM. Amazing. Note that I have been in an energy crash for the past 2 months and haven't been able to do any writing or walking at all! Almost entirely housebound and cognitively ruined.

    That evening it started to come back though at about 4pm I started to feel a bit iffy. By 6pm I was feeling like my same rough self. I thought it could be because I only slept for 2 hours, maybe a full nights sleep with valium in my system while I slept would help even more. So I took another valium at 6pm and another at 10pm and fell asleep at 11pm.

    Unfortunately when I woke up, which is today, I was very disappointed. It hadn't worked. I could feel straight away I felt like my usual exhausted self. A little better than usual but nothing like the amazing boost I had the day before. Right now it feels similar to my pre-crash energy level so it has still dug me out of a hole but nowhere near yesterdays effects.

    I thought maybe its because of tolerance. So I'm going to have a break and try it again in about 5 days to make sure I have no tolerance.

    And don't worry I don't have enough pills to get addicted.

    Pretty amazing though that 2 hours of refreshing sleep is all it takes for my crippling ME/CFS to be massively reduced.

    Isn't this intriguing?

    Any one else have a similar experience? I've done some googling today and found that people to take valium or other benzodiazepines sometimes get a kind of re-bound where they feel great when it wears off. Though I must point out I didn't feel "high" at all. My symptoms were simply much much better.

    Any thoughts or comments?

    Thanks for reading :)
     
    Last edited: Feb 2, 2018
  2. Rvanson

    Rvanson Senior Member

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    Sleep is essential to our well-being. That said, Valium will be hard to be prescribed, since there is a war on Benzodiazapines at this time in the US. I have found that Xanax is much better, then Valium, but finding a quack
    to dispense it is a rough road. That and it is not a cure for ME whatsoever.
     
  3. helperofearth123

    helperofearth123 Senior Member

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    I know that sleep is vital. This is not about a sleep aid to help me get to sleep. I usually sleep a full night and wake up exhausted. This is about *refreshing sleep*.
     
  4. TreePerson

    TreePerson Senior Member

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    I have the same experience with taking temazepam. It improves my capacity for physical activity. It’s quite marked. I used to think it might be because it relaxed smaller blood vessels improving blood flow and allowing muscles to work better.

    Recently I read that that Benzos are on a list of drugs that Dr Cheney would expect to cause an improvement. So far as I remember it was to do with nitric oxide and his theory of the heart and blood volume. Sorry I’m not feeling well enough to look it up and explain it better.

    I know my ME fitted a lot of what he described. Low ESR and low sodium are two that I can remember.
     
  5. andyguitar

    andyguitar Senior Member

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    Valium increases the activity of GABA which in turn lowers Serotonin levels. That is most likley to be why it helped. You possibly have to much Serotonin, and that is what is making you ill.
     
    Mary likes this.
  6. Hubris

    Hubris

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    i was prescribed diazepam by a psychiatrist (she said the malaise i have when waking up HAS to be anxiety even though it isn't), it never helped (made me 10x more tired, cant leave the bed) except in one occasion where i could feel my emotions sort of coming back (depleted/severely reduced emotions is one of my symptoms, i feel basically nothing. Just a foggy feeling behind my eyes). I stopped taking it, since i know it's not gonna cure me or anything anyway and don't want to risk getting addicted, and i hate feeling so insanely tired i can't even leave the bed(though im housebound).


    it's actually very easy to get benzos here in Italy, we have a war on stimulants rather than a war on benzos, every stimulant except ritalin is illegal here and ritalin is extremely hard to get, only children with ADHD can have it(not adults) and they have to prove to a state psychiatrist that behavioural interventions didn't give good results(and you can imagine that the state psychiatrist will be pretty biased against giving ritalin if the laws are like this... they probably give it only to the most extreme cases of ADHD). Even modafinil, which you can hardly consider a stimulant, is demonized and nobody wants to prescribe it - i tried asking for it to many doctors/psychiatrists (since i'm already so tired and lethargic and all they prescribe me are benzos or antipsychotics...they only give me tranquilizers and i can't leave the bed when i take them) and i got told by one of them that if i try modafinil i will get psychosis for sure and she would rather have me spend my entire life in bed than letting me try modafinil once......

    But benzos are pretty much given out like candy though, even by GPs. My mother was given xanax, diazepam and another benzo from her GP just like that, and she didn't even really ask for it she just complained vaguely about being stressed or something like that. And as i said my psychiatrist insisted on giving me a benzo when i never once complained about anxiety or asked for it.

    I'm so tired of this ideological bullshit, in one country they give a substance like it's candy in another they treat it like it's worse than krokodil...
     
    Rvanson and helperofearth123 like this.
  7. helperofearth123

    helperofearth123 Senior Member

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    Interesting. I tried 5-htp years ago and it made me feel worse. However I was also prescribed amitriptyline years ago at a the start of my illness and felt a little better from it and I think that increases serotonin so unfortunately that explanation doesn't seem to make any sense!
     
  8. andyguitar

    andyguitar Senior Member

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    How Amitriptyline works is, suprisingly, not very well understood. I doubt that it would be possible to say exactly what effect it has on Serotonin levels as it also has an effect on other neurotransmitters including norepinephrine. The clue for you is the adverse effect of 5-htp.
     
  9. TreePerson

    TreePerson Senior Member

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    helperofearth123 and andyguitar like this.
  10. Wishful

    Wishful Senior Member

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    I haven't tried valium, but I've had similar temporary "abruptly feel complete remission" episodes from other compounds. Some things seem to be capable of 'snapping the switch back to the normal setting' temporarily, but the body seems to adapt to them and prevent them from working again. In your case it might not have been the valium, but the improved sleep provided by it, which altered some chemical balance in the right way.

    TreePerson, thanks for that bit about avoiding Provigil. I was wondering if there was any safe substance that boosted peroxynitrite levels. Since peroxynitrite scavengers make me feel much worse, maybe a booster would make me feel better. I'll have to consider asking my doctor for a prescription.
     
  11. Deltrus

    Deltrus Senior Member

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    Phenibut completely cures me but isn't sustainable. I'm a man and have seen several other men get helped by gabaergics. The immune system also has gaba receptors, so gabaergics can potentially calm down the immune system. I'm guessing the problem is auto immune and also has an increase of brain excitation, which then ruins sleep. Or who knows, neurotransmitters have many roles which we may not know about.
     
  12. edawg81

    edawg81 Senior Member

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    I was given iv versed, benedryl, and fentinol for a endoscopy, afterwards i felt 60% better went to the store (didnt drive) and took my only nap since becoming sick. I use klonopin regularly for sleep but i try to use benzos as sparingly as possible at the lowest dose. The only thing that makes my ME symptoms subside are sleep deprevation and benzos so im right there with ya.
     
  13. Rvanson

    Rvanson Senior Member

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    I completely concur.

    Yeah, the US really blows when it comes to Benzodiazipines, and lately the FDA is cracking down on Opiods for pain management. The quacks...err.. I mean "doctors" will look at you like you are a dope-fiend for being on a Benzo or an opiod. Thankfully I dont need opiods, at least not yet.

    The OTC meds for sleep are simply anti-histamines, as are the tricyclic anti-depressants, and Trazadone, which is a failed anti-depressant.

    I feel like my brain is functioning at half-throttle after taking these meds. Xanax is gone in 8 hours or so and really
    helps me sleep, with no after effects.
     
  14. andyguitar

    andyguitar Senior Member

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    As @Deltrus says neurotransmitters may have unknown actions. One thing is clear from reading this thread, and the article from @TreePerson, it only takes a small amount of the right substance to have a positive effect. So if you turn that round we can say it only takes a small amount of the wrong substance to have a negative effect. As usual I am going to say that the wrong substance for most is anything that acts as a serotonin realease agent or stops it being broken down in the way it should. This will include many nutritional/herbal supplements that are often taken by sufferers.
     
    TreePerson likes this.
  15. lnester7

    lnester7 Seven

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    I wouldn’t feel disappointed yet. Could be you over did it and it will take a while to recover so give it two weeks.
    Any pills should start low and slow, so I would go back to the dose you felt good and wait 2 weeks while not over doing. No matter how tempted you feel ( I have had 3 remissions so when one finds something that works has to be followed).
    Look at it this way. This month you have 28 days of the 30 let’s say that is progress. Remember the recovery road is not a straight line. So I think you are in good road. Just do not over do no matter how great you feel.
    That new energy needs to go to all the body damage and to heal. Do not waste it!!!!
     
    andyguitar likes this.
  16. helperofearth123

    helperofearth123 Senior Member

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    Interesting, if I miss a full night sleep my brain fog would be slightly better too but not much. Though you would expect to feel awful after missing a full night, yet I usually feel slightly better.

    TIME FOR AN UPDATE

    Have had continuing very positive results with valium right before bed time. Will post a more thorough update soon. Got so much stuff done I am still amazed.
     
    andyguitar likes this.
  17. TreePerson

    TreePerson Senior Member

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    Hi @andyguitar. I am understanding your reply to mean that you believe ME to be caused by too much serotonin? There is a way in which this make sense to me as I was once given Prozac and could quite cheerfully have jumped off the roof. I felt absolutely dreadful super twitchy unable to stop moving (have forgotten the medical word for it) and it was obvious the last thing I needed was any more serotonin. What is your theory for overcoming this? Sorry to ask but I am not in a good state for going back over a lot of old posts thought it easier to ask.
     
  18. andyguitar

    andyguitar Senior Member

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    Ok @TreePerson I will keep it as simple as poss. It Goes like this: At a low level of release Serotonin- or 5-HT as it is often called- is a stimulant. When levels rise it is inhibitory. This is the theory of what is called "Central fatigue" central being central nervous system. So fatigue caused by the central nervous system. Not through lack of energy ect. The way that Prozac and other Serotonin release agents work is by disabling the transporter protein for serotonin. That is called SERT. This causes Serotonin levels to become elevated as it is not being disposed of in the normal way. What happens then is that the excess serotonin degrades and the by product is hydrogen peroxide. This causes inflammation of the mitochondria in the thalamus. Serotonin will also rise elsewhere including the blood and GI tract. The problem I have is that if I post details of the research paper i got this from it will be a public relations nightmare for sufferers. Lets just say there are many different Serotonin release agents. So first thing you do is to stop taking serotonin release agents. Here's the bad news....... Many of the drugs, herbs and supplements used in the illness have that effect ie Vit C, 5-HTP, tryptophan, st johns wort, ginkgo biloba, and some pro-biotics. If you want advice PM me and I will help. By the way I am not talking about "Serotonin Syndrome".
     
    TreePerson likes this.
  19. TreePerson

    TreePerson Senior Member

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    Hi @andyguitar. Well I think I understood some of that. Understanding this sort of stuff is not my forte and my head is tired. So I am right in believing that Prozac does increase serotonin? That this is supposed to make people feel better but in fact will make them centrally tired? And while little bit does you good a lot is bad for you because it starts to poison you in various ways? And what you are saying is that there are many other supplements which would have the same effect?

    I would be interested in knowing what supplements are on the list.

    I’m not sure I understand your comment about the research paper. In particular why it would be a PR nightmare for sufferers. I would understand it better if it was a PR nightmare for the person who wrote it. Anyway it suggests that it is a secret or in some way controversial?

    Thanks for replying :)
     
    andyguitar likes this.
  20. Wishful

    Wishful Senior Member

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    I've tried 5-HTP, and noticed no significant effects, other than a mild reduction in insomnia. No noticeable effect on ME symptoms, so I'm unconvinced that it is significantly involved in ME.

    Tryptophan causes a serious increase in my ME symptoms. To me that indicates that the IDO pathway is involved, rather than the tryptophan hydroxylase pathway, leading to excess kynurenine production.
     
    andyguitar likes this.

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