Julie Rehmeyer's 'Through the Shadowlands'
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So, seriously, why can't I sleep?

Discussion in 'Sleep' started by andrie, May 9, 2015.

  1. andrie

    andrie

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    Hey all,

    Long story short, got ME/CFS after a bad flu. The usual symptoms, lethargy brain fog etc. I was slowly recovering from it when I got hit by some sort of stomach infection.

    Basically one night I got severe stomach pains and my digestion went haywire. Started getting rashes everywhere and immediately stopped being able to sleep properly. Went from sleeping a solid 7-8 hours my entire life to very interrupted, short low quality sleep. Now two years later after trying pretty much everything, nothing works.

    My cortisol is elevated at night and that's the only clue I really have. I tried a lot of sleep medications at the start of this and all of them made things significantly worse. Not only did I feel like I slept poorly, but I also woke up with a hangover and even more brain fog from the meds. I've tried all the OTC remedies, all the herbal remedies, all the 5-htp, tryptophan amino acids, phosphorolated serine. Obviously all the sleep hygiene stuff. Nothing works.

    But through anti biotics and dietary changes I started sleeping better, although it's still awful. My last ditch effort was to do fecal transplants as this all started with stomach issues and my digestion has been especially awful since. And lo and behold, my digestion is a lot better but I still can't sleep properly.

    I seriously just don't get what is wrong. I'm exhausted and feel like there's no cure to this as I've literally tried everything. The M.E. just gets worse and worse due the sleep problems. I'm 100% sure I would've recovered from the ME by now if I could just sleep properly.

    Any suggestions?
     
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Sleep problems are just a very common symptom of ME. It seems to fluctuate alot between individuals. I can go through periods of sleeping unwell with medications to sleeping well with medication, back and forth. ME is a neurological disorder and i think the part of our brain that controls sleep is broken.

    I dont think any medication is going to fix it but may help us control our sleep some. I think we have to limit our doses of what we take and understand drug tolerance, where we rotate between different meds and take breaks from meds etc.

    My sleep has improved by treating infections i have had but its still medicated, which i need to do to be able to function and hold down a job. I know of quite a few ME people who have refused to take sleep meds out of worrying about addiction etc, this is different to dependence but thats another story, but many of those who dont medicate continue to sleep crap just like those who do use meds. But i think some of us that do use meds can control our sleep somewhat to work around things like work or appointments etc.

    There are so many things that can be out of whack with sleep, cortisol is a common one mention, circadian rythym another, inflammatory cytokines causing the tired wired feeling, may have a gaba receptor resistance, leptin and growth hormone seem to be involved somewhere in there. chronic pain can cause sleep distruption and similarly restless legs syndrome, also sleep apnea and obstructive sleep apnea.

    A sleep study if u can sleep can help rule out sleep apnea and sleep movement disorders but if u have primary insomnia or really secondary insomnia due to ME, which probably wont be recognized by many docs. They will probably diagnose u with depression or anxiety disorder. For a doc that understands sleep/insomnia in cfs/me, they are left with sedatives like benzos and z-drugs, antihistamines and sedating antidepressants as the main treatments, or a combination of those.

    could try experimenting with individual meds and work out which help u initiate sleep and which helps u maintain sleep, while working with your doctor, organize some type of a rotation schedule where u may require an initiator and a sleep maintainer, some do well with just an initiator to start with.

    I feel for you and it takes alot of experimenting and working with an understanding dr. I went through periods even while on meds where i would sleep maybe 2 hrs at a time, say 11pm to 1am and then go to work from 8am to 6pm. if i sleep like that now i dont go to work, too dangerous. Also have to find the best time to try and fall asleep. If i take meds too early i will wake up at 1am but i have found that if i take my meds at 11pm i tend to sleep through this1-2am wake up period and once through that i can sleep ok. Everyone is different and has strange quirky issues, and they do change, so u may think u have found the answer and a few days later dam insomnia hits.

    if u search some of my threads, u will find plenty of me whinging about getting no sleep. Where my brain felt like a frying pan sizzling away.

    i hope the above has helped and not conffussed u but maybe let u know your not along.

    sleep tight tonight,
    cheers!!!
     
    Anju, ahmo, minkeygirl and 1 other person like this.
  3. lansbergen

    lansbergen Senior Member

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    My insommia disappeared with overall improvement. I sleep like a baby.

    Now i unvolentary fall asleep when I am resting during the day. I probably need these naps.
     
  4. Rand56

    Rand56 Senior Member

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    @andrie

    Just asking, are you taking any Taurine?
     
  5. andrie

    andrie

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    Lucky for you! No, I'm not taking taurine. But I've tried it and it made no difference, thanks though.

    I've had a sleep study done and nothing was out of the ordinary. No apnea, etc.

    The M.E. did not start the sleep problem. I had already had it for around 4 months and slept fine. I was recovering slowly when this infection hit and then shit hit the fan.

    I've already been to see a few doctors and honestly, it's a nightmare. No one's interested in finding out what the root cause is. I was just called anxious/depressed, which I most certainly am not and have no history of. A lot of things started going wrong in my body once this infection hit, a lot of gas, a lot of constipation, burning sensation in my colon, etc. A lot of them have improved immensely with the fecal transplants. That's why I'm so surprised that my sleep hasn't improved a long with it.
     
  6. Rand56

    Rand56 Senior Member

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    Ok thats great. I know taurine can help some people, but atleast with me, and apparently some others, it can disrupt sleep. It has a buildup effect with me.
     
  7. leokitten

    leokitten Senior Member

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    The description of what happened to you is almost exactly like what happened to me, reading your post gave me the chills.

    I also have ME/CFS just over two years now and I want to tell you it likely wasn't any infection that caused your GI issues, it's just the ME/CFS. For me it was the same it didn't start happening until a few months after the initial flu and just like you said it is really terrible at night during sleep and causes me to have terrible sleep.

    I've had every single possible blood, urine, and comprehensive stool test and they could find nothing wrong with my gut or any dysbiosis other than the typical ME/CFS low good E. coli and low Bifdo, but no bad organisms or infections. I'm telling you I tested for everything with my doctor and spent so much $$$ and no culprit.

    Even with these results we did long courses of so many kinds of antibiotics, antiprotazoals, antihelminthics, etc. It makes no difference. The GI problems are part of the ME/CFS.

    The best thing you can do is find the right combo of sleep medications that work best for you, promote deep sleep, and help battle the GI craziness at night keeping you up. Some nights as for me nothing will overcome it but you should shoot for having most nights getting decent sleep with meds.

    I seriously recommend staying away from any benzodiazepines, narcotics, or z-drugs for sleep they are terrible long term, will not work in the end and are addictive.

    My ME/CFS did not give me OI/POTS but actually made my blood pressure and volume go up. After a lot experimenting with many different sleep meds the combo that works best for me is a low dose of clonidine, gabapentin, gabitril, and LDN.

    Gabapentin and gabitril both robustly increase SWS.

    May I ask are your GI problems a lot worse when you are sleeping and are better during the day?
     
    Last edited: May 9, 2015
  8. andrie

    andrie

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    How did your GI issues start? Was it like mine? I was basically recovering slowly from the ME and then one night I got severe stomach pain. The first two weeks I was totally unable to go the toilet with out assistance from laxatives or enemas, my constipation was so bad. I also became very gassy, bloated and started getting rashes all over the place. This literally started overnight and I don't feel any difference in my GI symptoms whether it's day or night.

    The reason why I think it's bacterial, not viral is because antibiotics and low carb diets really improved my sleep. The first few months I was sleeping 1-2 hours per night. It was horrible. Then after a lot of antibiotics my rashes started clearing up and I started getting around 5-6 hours of sleep. Although very low quality.

    I also have a constant burning sensation in the right side of my colon which sort of leads to my legs being very irritable and constantly need to be moved around. That sensation also goes away with the fecal transplants. Also, when ever I take a probiotic or a prebiotic my sleep immediately gets a hell of a lot worse, so I'm fairly certain that the origin of this is bacterial. But I've also wondered if it is in fact viral but I don't have any serious biomarkers that indicate an active viral infection.

    What are your GI issues like? Mine are just a lot of constipation, muscle twitching, gas and a lot of food intolerances. And did your GI issues start gradually or was it with sharp pain and then it started?
     
  9. caledonia

    caledonia

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    Sounds like you have adrenal fatigue, in which case you'll be low in electrolytes, causing constipation and muscle twitching. Food intolerances and rashes sound like leaky gut.

    Try supplementing with electrolytes (at least magnesium, and possibly also potassium and/or calcium). If you're craving salt or salty foods, also supplement with sodium. Using powders and dissolving it in water, and drinking it four times a day works best for me. Don't use magnesium oxide as it absorbs poorly.

    You can also try Dr. Wilson's Adrenal Rebuilder or other adrenal support. I like the Adrenal Rebuilder as it doesn't have active glandulars - I don't tolerate those.

    Check out the 4R Gut Rebuilding program and see which steps you have not taken, and do those.

    Then look into methylation treatment. You could also have low methylation which means low neurotransmitters, which means poor sleep. Methylation treatment may also help the gut and the adrenals.

    See the link in my signature for more info.
     
  10. leokitten

    leokitten Senior Member

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    I wasn't recovering at all from the ME/CFS when it started, but it definitely made everything so much worse because just like you said I couldn't sleep at all anymore. The ME was already causing me sleep disturbances before but then seemingly overnight I started having severe gut disturbances, bloating and growling when I slept at night and it kept waking me up every few minutes until I became so exhausted. My gut problems are always much worse during sleep and at night than during the day, and I didn't get constipation but the other way with diarrhea and frequent trips. I believe this was simply due to the sympathetic activation and high NE caused by ME which I did urine tests for and was very high. I already has minor psoriasis my whole life which would come and go but the ME made it 100x worse and I'm sorry I couldn't tell you if the sudden gut problems made this worse.

    IMHO I don't think it's anything but the ME/CFS and the fact that the disease is likely autoimmune and causes us autoimmune gut problems. I don't think it's any viral or bacterial issue, if it is it's something no one can measure or find.

    My diarrhea slowly went away with the help of clonidine because as I said it was likely due to the sudden sympathetic activation caused by the ME. The GI problems were pretty sudden but not a sharp pain more that my gut was bloated and general pain and crazy growling and discomfort at night. I had muscle twitching and tremors which began right when I got ME before any gut problems.

    ME/CFS can cause IBS.
     
    Last edited: May 9, 2015
  11. *GG*

    *GG* Senior Member

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    I take anti depressants for sleep, the one I am on now has been really good for me! I take Remeron, I wake up feeling more refreshed in the morning, not great, but better than before. It puts me to sleep and helps me keep at sleep.

    GG
     
  12. leokitten

    leokitten Senior Member

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    Remeron works well but it can make people gain weight due to extreme cases of the munchies. When I tried it I couldn't stop eating.

    I definitely recommend drugs that promote SWS as this is generally lacking in PWME and is very important for immune function and health.
     
    Misfit Toy likes this.
  13. Crux

    Crux Senior Member

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    Hi;
    I only have a few similarities to your condition, but here's what has helped.

    After a lifetime of constipation, a very low dose of neomycin, and a very low dose of erythromycin worked. ( I'd become sensitive to herbals and antibiotics, so I could only tolerate very low amounts for short courses.)

    The neomycin reduces methanogens, a type of microbe, archaea, found in healthy guts, but often overgrown in constipated ones.

    The antibiotic, erythromycin, among other things, acts as a pro-kinetic, stimulating peristalsis. ( There are other pro-kinetics, someone has started a thread on LDN, with good results for constipation.)

    Treating the gut with antibiotics helped sleep to an extent, but it's way more complicated and individualized.

    Although I still take low doses of clonazepam, I'm reducing it by following a low carb, low FODMAP, diet.
    Protein intake is moderate, eaten earlier in the day.-- I believe this is critical.-- Protein is stimulating, I find.

    I eat carbohydrates , not too many, and lower protein at dinner.
     
  14. msf

    msf Senior Member

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    Hi Andrie,

    If you asked KDM, I'm pretty sure he would say that your sleep issues are a direct result of a bacterial infection. The mechanism for this (I think) is that LPS causes the release of IL-6, which causes sleep disruption. I posted some articles in a thread in the Lyme forum about this, titled something like 'effect of LPS on sleep.'

    Re: your belief that it was a bacterial infection that made you ill, have you had any testing done? Were the rashes Erythema Nodosum? I ask because this is one of the symptoms of Yersinia Enterocolitica, which was the trigger for my illness - I have also experienced stomach pains (mesenteric lymphadenitis, false appendicitis), GI problems, and sleep disruption.
     
  15. Mij

    Mij Senior Member

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    @andrie

    Have you been tested for h.pylori? What stomach infection did you treat with abxs and diet? I had terrible stomach symptoms at my onset and went 5yrs without being tested or treated, it eventually got worse.. It the seems the acute viral onset I had stirred up my immune system and made everything else worse, including my sleep.
     
  16. minkeygirl

    minkeygirl But I Look So Good.

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    @andrie like others have said it could just be the damn disease.

    Some of us our insomnia is so extreme that OTC stuff just won't cut it. And I will get zero sleep without meds.

    I was able to use trazodone and suntheanine for years then everything changed. I fought using benzos but I need a benzo as an initiator

    Once I esplained to my new pcp that I needed initiators and extenders and he saw how I was
    Rotating between s bunch of things, he helps me.

    I have 4 benzos, trazodone, seroquel, doxepin, and s bunch of Otc antihistamines. Also suntheanine, Passion flower and phenibut which don't work on their own but work when I wake in the middle of the night. Probably more but can't think right now.

    You have to just accept this is part of it and like @heapsreal said, experiment with things and combos and don't take the same thing more than 2 nights in a row. Heaps posts really helped me sort of get s grip on my insomnia.

    I can take the same thing 2 Nights in a row and sleep great one night and crap the next.
     
    heapsreal likes this.
  17. *GG*

    *GG* Senior Member

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    What is SWS?

    GG
     
  18. ahmo

    ahmo Senior Member

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    Getting my B12 levels up stopped my life-long insomnia. I understand that your insomnia came on after your infection. It's possible that the infection disrupted your ability to assimilate B12. I found pituitary glandular very helpful when I could no longer take low dose Klonopin for sleeping. Good luck, lot's of input here for you to digest.
     
  19. leokitten

    leokitten Senior Member

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    Slow wave sleep, it's the most restorative stage of sleep and also very good for your immune system.
     
    Last edited: May 9, 2015
  20. Misfit Toy

    Misfit Toy Senior Member

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    Everyone is so different and what works for one will not work for another, a lot of the time.

    In 2002, I had a rash that came on out of nowhere. I had it for 2 years. Head to toe. In 2004, I had a surgery called an ovarian wedge for PCOS. After the surgery, the rash that was keeping me up all night long, went away. Why? I don't know. Wasn't leaky gut. Didn't change my diet at all.

    Rashes can have so many causes, including autoimmune. I have eczema now and depending on the illness, it will act up and when symptoms are better...dissipate.

    When I first got sick, I would sleep non stop and still be so sick and tired. Now, it's that I don't sleep. I sleep so lightly. I used to need white noise to sleep. Now, I need no noise of any kind and ear plugs.

    Sleep is my nemesis. I need it, want it and don't get much. Sometimes, I just crash.

    The adrenals can mess up sleep whether high cortisol or low, but so can a bacteria. This illness is so wonky, there is no real answer, at least for me.

    Remeron, the antidepressant mentioned earlier, helped me in the beginning but then stopped and I was fat from it. I look at photos of myself and think...ick. I would rather not sleep than look like I did and it never really did much for my sleep.

    The biggest thing that helps me is Ativan. More than anything, but if I take it every night, it won't. So, Heaps and Minkey are right on about that....I try not to take the same meds every night. I switch it up and if I know I need to be good for tomorrow, I pop two ativan at bedtime and die. But...I can't do that every night because it doesn't work.

    I have no idea what the answer is and if anyone ever figures it out...let me know. This illness is one big mystery. There are times where I think, "I am so sick, I am going to cancel all plans for next week" and then next week comes and I am at the beach riding waves. This illness is a head*&ck.
     
    *GG*, AndyPandy, Tammy and 2 others like this.

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