Phoenix Rising: The Gift That Keeps on Giving All Year Long
This holiday season Jody Smith turns her eyes to the people of Phoenix Rising and gives thanks for you all ...
Discuss the article on the Forums.

Using meds to create hypersomnia for Aggressive Rest Therapy?

Discussion in 'General Treatment' started by Chelby, Apr 1, 2017.

  1. Chelby

    Chelby

    Messages:
    37
    Likes:
    54
    My idea is to sleep & rest heavily for at least a few months with the aid of sleep medication.

    Everything I have seen about ART seems to be about disciplining yourself to have rest time. I think this approach would be very challenging (read: impossible) to do consistently, especially during energy surges. Being a young person, as soon as I have a spark of energy, I try to keep up with my friends.

    It seems it would be more effective to encourage sleepiness and rest with a drug. When I was on Topiramate, I was constantly napping, drowsy and was too mentally slow to engage in mentally stimulating activities. I was pretty much a zombie and forced to rest.

    The question is, will your body consider it rest? Or will it use up energy trying to process the drug.

    I am tempted to cycle tricyclics, anticonvulsants, benzos, antihistamine & melatonin so I am very, very sleepy. I would careful not to develop insomnia from overusing a drug and becoming dependant.

    Thoughts on this plan?
     
    trishrhymes likes this.
  2. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,730
    Likes:
    4,362
    Southern California
    I see the appeal but my concern would be not getting true restful repairitve sleep with that drug cocktail
     
  3. Sushi

    Sushi Senior Member Albuquerque

    Messages:
    14,413
    Likes:
    21,625
    Albuquerque
    Also, I don't think we have evidence that this kind of aggressive rest therapy helps--whether drug induced or not. Pacing is a different story though.
     
    PennyIA, TrixieStix and Hugo like this.
  4. Jon_Tradicionali

    Jon_Tradicionali Alone & Wandering

    Messages:
    290
    Likes:
    323
    Zogor-Ndreaj, Shkodër, Albania
    Many patients with ME/CFS are already hypersomniacs, myself included.

    I understand the theory behind your planned cocktail. It just isn't as simple as that. Perhaps try Diazepam? I know of someone who recovered with that drug.

    • Nearly half of chronic fatigue syndrome patients meet MSLT criteria for IH. Data not yet published. Population based control MSLTs (n=1019) summarized courtesy of E. Mignot vs. CFS (n=46) from Wichita, KS (Reeves WC, et al BMC Neurol (2006); 6:41).
     
  5. ryan31337

    ryan31337 Senior Member

    Messages:
    451
    Likes:
    998
    South East, England
    Just my n=1 experience but unnecessary forced bed rest makes me worse. I have POTS though so not surprising.
     
    Esther12 and Plum like this.
  6. Chelby

    Chelby

    Messages:
    37
    Likes:
    54

    Does the bed rest only make you POTS symptoms worse? What about your general energy/pain levelS?

    I think if I were to do this, it wouldn't take long to get reconditioned to relieve the POTS symptoms.
     
  7. Chelby

    Chelby

    Messages:
    37
    Likes:
    54
    I think if people are having idiopathic hypersomnia, then it's a sign your body is wanting much more rest than usual. All I know is the more I do, the more symptoms I get. I am not sure how willingly the GP or neuro will be to prescribe diazepam, but I will ask about it next time. What about it do you think won't work? Can you tell me a bit more about the person who has success with diazepam?
     
  8. trishrhymes

    trishrhymes Senior Member

    Messages:
    2,153
    Likes:
    17,872
    By this assume you mean using these drugs one at a time on different days, so as not to create dependence on any particular one. You could add herbal valerian, I guess, to your rotation, and keep a diary to see which ones if any seem to leave you feeling healthier. Perhaps take each one every day for a week, then have a few days gap, then go on to the next one.

    Regarding aggressive rest therapy (ART), when I had glandular fever or something similar many years ago, and before my ME started, I was still very fatigued and unable to be active without crashing after 6 months, even though the swollen glands etc were better. Someone, not a doctor, suggested I spend 3 weeks in bed doing absolutely nothing, getting up only for bathroom needs (I think I had the radio to stop me going loopy with boredom). Then to get up and start being active as I felt able.

    I did this, and recovered completely, soon regained my strength naturally and was completely well for 12 years before ME struck. I tell you this because this was effectively ART, though I didn't know the name. I think part of the point was the the ART was time limited. 3 weeks complete rest, then start moving again, effectively pacing, though in my case at that time I had recovered fully and resumed activity at my own pace naturally. No CBT, GET, APT or any other 'therapy'.

    I'm not suggesting this is curative for ME. I think I would have been diagnosed with CFS/ME or PVFS at the time, but it was clearly post viral fatigue that was self limiting, and I might have recovered anyway during that 3 weeks! Who knows!

    I can't do ART now as I have caring responsibilities, and have to pay for any help we get. I'm pretty sure 3 weeks in bed now would not cure me, and might just leave me feeling weaker. Who knows.
     
    Plum and Chelby like this.
  9. Plum

    Plum Senior Member

    Messages:
    452
    Likes:
    319
    UK
    I had to rest a lot after 2 surgeries I had close together. I possibly rested for too long. The time I spent lying down for weeks on end made my POTS much worse, which in turn made doing anything that much harder. I have had to work very hard to get back a little function from that experience. I don't believe over resting helps me. Pacing day in and day out does - not that I'm very good at it!
     
    ryan31337, Sushi and trishrhymes like this.
  10. Chelby

    Chelby

    Messages:
    37
    Likes:
    54
    What is the main difference b/w pacing and resting? Is it mostly maintaining enough movement to prevent deconditioning but still doing as little as possible? I know that I am overdoing it because I am getting PEM.

    From what most people are saying, resting is going to make POTS (which I seem to have) a lot worse.
     
    trishrhymes likes this.
  11. geraldt52

    geraldt52 Senior Member

    Messages:
    399
    Likes:
    1,549
    I can't caution you enough not to try this. These drugs are not benign, and the idea that you can be "careful" not to develop insomnia is wishful thinking. You can definitely make your life much worse than what it already is. Klonopin, over the long haul, absolutely ruined my ability to sleep, and from all indications it is permanent...and I wasn't even taking the Klonopin for sleep.
     
  12. Plum

    Plum Senior Member

    Messages:
    452
    Likes:
    319
    UK
    To me resting could be lying down for an hour in the afternoon and then being busy the rest of the day. It's a big chunk of doing nothing followed by too much activity at once.

    Pacing is doing say 5 mins of something and then resting for 30 mins and then doing 5 mins of something else. It's about learning your limits for EVERYTHING you do (chores, talking, TV, internet etc) and then stopping before you reach that limit and doing something that allows recovery e.g. lying in silence or listening to gentle music. If yr symptoms worsen while doing something then that's a sign that you're either doing too much or that maybe that particular thing is a no no for you e.g. watching scary movies! The more function you have obviously the more you can do before needing to stop and rest to recharge.
     
    TrixieStix, xrayspex and Chelby like this.
  13. Jonathan Edwards

    Jonathan Edwards "Gibberish"

    Messages:
    5,247
    Likes:
    31,976
    That sounds like a good recipe for inducing psychosis. Or in other words going mad. I should not give medical advice but if anybody I knew suggested doing this I would say for God sake don't. You are pretty well guaranteed to end up on a psychiatric ward - not a nice place to be.
     
  14. Chelby

    Chelby

    Messages:
    37
    Likes:
    54
    Are you concerned about taking the combination of meds? Or rather spending that amount of time over sleeping?
     
  15. trishrhymes

    trishrhymes Senior Member

    Messages:
    2,153
    Likes:
    17,872
    When you say cycle these drugs, do you mean taking just one of them each night then a different one the next night, or are you suggesting taking them through the day as well?

    When i tentatively suggested adding valerian to the list, i was clear that i thought you meant a trial of different drugs, one at a time, and just at night.

    Now i read your post again and @Jonathan Edwards warning, i wonder if you meant taking them through the day as well which sounds like a very bad idea, especially if you want to take large enough doses to make you fall asleep when you have had enough sleep... Could be dangerous especially if you become confused and take too much.
     
  16. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,573
    Likes:
    24,713
    USA
    @Chelby I am confused, are you trying to find meds to literally make you sleep or meds that make you rest (but you are still awake)?
     
  17. Sushi

    Sushi Senior Member Albuquerque

    Messages:
    14,413
    Likes:
    21,625
    Albuquerque
    Pacing is not "doing as little as possible." It is learning when you need to rest and which activities and for how long you can manage without getting PEM. Many of us have warning signs that indicate to "stop right now" and rest. Once we observe our patterns we can make a life-style plan for pacing. Some may be able to do an activity safely for 5 minutes, some for half an hour or an hour. We all have our own limits.
    Agree, and learning what type of rest works best for you is important. Many of us need to lie down or recline with our legs up and not have mental stimulation and only soothing sensory input--but we are each different.
     
    Mel9 likes this.
  18. xrayspex

    xrayspex Senior Member

    Messages:
    975
    Likes:
    246
    u.s.a.
    I am an avid pacer altho after many years I still struggle some with getting the balance right. Too much one way or the other can make me feel worse and my needs are not always the same....I realized that having to pay such close attention to my needs could give appearance of being really narcissitic so try to figure out ways with my relationships to not appear insufferable but it is what it is and if I don't respect it I am no good to anyone......but good advice on here about it. Does anyone have links to academic articles or papers on what Pacing is? I had accomodations put together for work last year and it went through but I didn't include any info that was more official on what "pacing" really is, one of those things that can be hard to educate normies on..........

    I sympathize Chelby with what you are trying to do but consider implementing a pacing plan if you haven't already. If your intuition is you need more down time for awhile to get to better level then do that for awhile.....I am doing that right now with time off work and resting more after a medical procedure. I do think I am getting a bit psychotic tho like J Edwards mentioned....not taking that cocktail you are thinking of, am on a much lighter weight one but wow there is nothing like being homebound a lot to humble a person...........
     
  19. Chelby

    Chelby

    Messages:
    37
    Likes:
    54
    @Gingergrrl and @trishrhymes I think taking a night time dose would be enough to at least feel sleepy during the day. I would want to have day time sleepiness too. I don't want to be knocked out 24/7.

    As for the cycling, I mean say taking one anticonvulsant/tricyclic for 2 weeks, then switching to another one... because the sleepiness effect wears off quickly. If I was going to take a benzo, then 1 - 2 times a week max. I could also do this with opiods, 1 -2 times a wk max. I could switch b/w valerian root & melatonin at night. Antihistamine during the day.

    I've taken amitriptyline & topiramate before and spent a lot of the day napping and being too tired to do things. That is the affect I am trying to achieve. Cannabis is not legal where I live, but I understand it makes you sleepy and lazy which sounds helpful. I want to try ketamine for it's effects on mTOR & sleeping effects but it is too dangerous to do alone.

    I don't really have access to meds that would keep me actually asleep during the day. I would try it if I could though. They do 7-10 day ketamine comas in Germany for intractable headache (which I have) with a good success rate. That's what inspired this idea.

    @geraldt52 said they had permanent insomnia effects from Klonopin which I would absolutely want to avoid. I will prob stay away from benzos.

    From what I gather, this isn't going to work :/ :/
     
  20. ryan31337

    ryan31337 Senior Member

    Messages:
    451
    Likes:
    998
    South East, England
    Hi @Chelby,

    I don't think it is appropriate to think of POTS symptoms in isolation.

    For me POTS is not just about a bit of tachycardia and dizziness when standing. POTS disrupts many bodily functions, which in turn can have many knock-on effects. For example, there's emerging evidence that POTS creates immediate GI disruption, which can lead to SIBO. Alongside many rotten symptoms the SIBO can seemingly aggravate histamine/mast cell issues & cause nutritional deficiency. Another immediate problem it causes for me is sleep disturbance, which I assume leads to all sorts of chaos after a short while.

    Point being that I see the problems we often experience as massively overlapping. Knowingly making one aspect of your illness worse seems unhelpful to me. Rather than rolling the dice and hoping extensive bed rest helps, perhaps investigation into your suspected POTS would be more useful - especially by a doctor that understands all the ramifications (endocrine, GI, sleep etc.).

    Ryan
     
    Chelby and trishrhymes like this.

See more popular forum discussions.

Share This Page