Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Adrenal fatigue and odd sleep

Discussion in 'Sleep' started by A zombie, May 26, 2017.

  1. A zombie

    A zombie

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    Here is my question first my diagnosis, lyme babesia , myco, ebv, hh6. I believe but going to get a culture marcons

    For ever we'll Incan the get to sleep stem night cannabis saves me as inwas
    Able to get sleep and wean myself slowly off xAnx . For 6-7 months I've been off x.
    I've unfortunately had to stop cannabis for 100 days becuz I just went little west for stem cells pleasantly I don't want to get into long involved siaaxirion aboit atems I went to infusio they have proven success of your interested join infusio exchange in fb, I'm off fb to heal so please don't bombard me with stem cell questions , you can learn everything and more at the exchange groups.

    So icenjad to go backboard to pharmaceutical which killlllls me . The clinic doesn't like Xanax and wants me taking compounded trazadone , I've got like 10 caps here from previous dr. I've used last two nights and it relaxes me but doesn't turn the light out at all, I took .50 x with it and that does trick. So I may just have to stick with x which is fine, its only gonna Ben short loved and I know cannabis works , however Stwma are supposed to help correct everything wrong please again this is. Not a debate .
    so perhaps I won't need Cannabis after 100 days many who have poor sleep actually start sleeping better
    My first question , what's another's sleep med that works ? I'm using 100 mg traz which sr
    Said is a lot , she's rx me 50, 100 isn't even cutting it
    second and this is ahige one ,
    Since I've. Been sick for 8 years with Lyme was undiagnosed till aboit 3yeara
    Ago , and was given long period of
    Prednisone which is the wiser rhkng ever for lyme, but didn't known i had lyme
    My adrenals have taken a tremendous hit . I wake several x a night, if I take holy basil say ar theee from waking intake 2-3 holy. Basil and go back to sleep bit never for more than 2-3 hours . Then i wake again around 5a hour , I've been takkng Adren- all,
    I take 1-2 and agin fall bk to sleep but for exactly 3 hours . This is frustrating to me ad I'm tied I. Need more Sleep , way more especially on weekends , but can never sleep passed 7-8.
    Anyone else have this can anyone help me ?! I'm desperate . No matter how clean I eat same crap , a few months ago I noticed the cleaner imayw the less i woke , I'm eating superxlesn and still am waking several times , plus can't sleep passed 8a, and Or get more than 3 hours of sleep after i dose HB or Adren-all or any adrenal sup, it's
    Driving me mad I'm aoroed and news and we all wamt more sleep, especially on weekends. Help advixe for other sleep mwd besides traz and any help with getting me longer stretches , right now there so much going on in body, miraculous stuff but i Just want better sleep and to figure this out
     
  2. Learner1

    Learner1 Professional Patient

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    I hear your pain.

    My arsenals are crashed, too, and I take hydrocortisone to function.

    However, sleeping at night is still a problem, even when I've been sleeping 10-16 hours a day. There are lots of reasons for sleep issues.

    I take a cocktail of stuff 30 min before bed. Things that have helped me in different ways are:

    Progesterone
    Pregnenolone
    Phisphatidyl serine
    Melatonin
    Pyridoxal 5 phosphate
    Taurine
    Glycine
    Thiamine
    GABA
    5-HTP
    Kavinace

    Sleep drugs can have unwanted effects and may damage mitochondria, making your problems worse in the long run.

    Also, Kavinace can be addictive, so its the LAST thing my doc added, and first thing I'll remove.

    Best wishes.
     
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  3. A zombie

    A zombie

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    omg ve tried EVERYTHING. I know seriphos has their old formula bak on market, go that, no help, i take GABA, l-thanine, passion flower, melotonin, i have a sleep cocktail sup i got from infusio clinic with insotil and other stuff in it the supposed to help with sleep, the only thing I've noticed form it it gives me whale dreams, and some have been super dsturbuibg but shoot iahvetn dreamed in, well have no clue but long long time, so i like the I'm dreaming although this is odd my dreams seems to start at that 4-8a hour. I swear I've tried it all oh and kaviance did work for me before , id be more happy with that than a RX but its $$$$$$$ and ugh i don't know, right now less if more for me with the stem cells, but seep is soooooo important.
    i was scrawling this AM to find what helps ppl someone said niacin is helping, i sure can try , someone said 5 htp was helping, so ill add 5 htp back in, never found it to be helpful. I think we become so messed up and who knows really whats causing it but, ugh. its a sh%t show what we have to endure to like survive ...or sleep of whatever.
    i will say i was taking l glutamine on nutrionalist advice, even though i knew in past to was a no go, tried it for like 5 days and my sleep got progressively worse to the point iw as up every hour. My even more of a mess, i wukcly stopped the and things calmed down but still cant fall asleep at night.
     
  4. A zombie

    A zombie

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    oh and i was takign prgeterone and i never found it to be helpful, stoped it over a month ago cause forget to reflll RX, just didn't hormone testing Wed so i know ill be going bk on and maybe at doff dose, i know my Testerone will be low like it always is,
     
  5. A zombie

    A zombie

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    maybe ill order kavanace
     
  6. Mary

    Mary Senior Member

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    @A zombie - I have adopted an everything but the kitchen sink approach to intractable insomnia after a slow taper off of low-dose (1 mg.) but long-term (10 year) use of lorazepam for, what else, sleep.
    It’s a work in progress and what works sometimes doesn’t work at others, but I think I may be getting close to what will help. It’s a bit complicated but I don’t care - I’m trying to avoid any new drugs. I have an extremely low tolerance for most drugs - e.g., 12 mg of trazodone knocks me out but leaves me drugged and woozy and tired for an entire day. I hate it.

    Anyways, here’s my latest - it’s in two parts: supplements, and things I do:

    A. SUPPLEMENTS


    1. Pituitrophin PMG and Hypothalamus PMG by Standard Process (just started about 2 days ago), I take one each with breakfast and lunch - it’s an experiment. Someone here posted that a pituitary glandular product helped her a lot with sleep.

    2. Lots of vitamin C throughout the day - 2000 mg with each meal and maybe 1000 mg or so between meals, as well as another 2000 mg before bed, and 1000 mg more in the middle of the night. Vitamin C is a glutamate scavenger. Regular ascorbic acid in those doses made me too acidic so am going to mix it up with sodium ascorbate.

    3. 2 - 3 hours before bed: a cup of catnip tea, very calming. Do not buy the catnip they sell for cats as it is known to be heavily sprayed with pesticides. A good product I found at Amazon is this: https://smile.amazon.com/gp/product/B00TPA7X1A/ref=oh_aui_detailpage_o07_s00?ie=UTF8&psc=1
    It has a mild mint flavor, not bad at all. I also plan to grind some up in my coffee grinder and have a bit in the middle of the night (don’t want to drink more liquid then)

    4. About an hour before bed:

    3 mg sublingual melatonin
    500 mg niacin - it enhances GABA (I use the kind that makes you flush. Do NOT get extended release niacin as it has been linked to liver damage)
    200 or 300 mg l-theanine (to produce GABA)
    1000 mg inositol
    500 mg Relora
    150 mg 5-htp
    133 mg magnesium (also take 133 mg magnesium glycinate 3 x during the day with meals)
    2000 mg vitamin c
    1200 mg calcium pyruvate (glutamate scavenger)

    I was taking Holy Basil and then forgot about it but think I will add it back in.

    If I’m lucky, at this point I’ll sleep 3 hours or so. When I wake up, I pretty much repeat everything, except for no more 5-htp. I generally cut the doses of most of the other supplements by about 1/3 at this time. We’re all different and you would have to see what works (or doesn’t) for you.

    And then unfortunately I’ll probably wake about 2 hours from then and have to repeat the lower doses of everything (except for 5-htp - again I just take it before bed). And this is what worked last night. I think I got 6.5 to 7 hours of sleep, which was really good for me.

    I also took about 1/10 of a trazodone tab (5 mg) in the middle of the night and feel better than yesterday. I really hate that drug and hope to get off it altogether.

    B. THINGS I DO;


    yes, it’s a lot, but I will do just about anything for non-drugged sleep.

    1. Foot reflexology: I found this website which shows how to do it to yourself to help you sleep, so have just started doing this a couple of times a day, and I even did it in the middle of night hoping it would help me get back to sleep, and I think it did:
    https://www.mindbodygreen.com/0-21028/diy-foot-reflexology-for-your-best-sleep-ever.html

    2. Breathing exercise: I just started doing this a couple of times a day and at night. I didn’t pay attention to the stricture against doing more than 4 reps at a time. I do 8, a couple of times a day and at night.
    From Dr. Mercola’s website which shows how to do this, scroll down about ½ way to video of Andrew Weil: http://articles.mercola.com/sites/a...=20170216Z1&et_cid=DM133777&et_rid=1889319409

    3. Faster EFT: You can watch a couple of videos to see how it’s done: https://www.youtube.com/user/HealingMagic#grid/user/A44397BC5E723EF4

    You don’t have to attend a course or pay any money to do it.

    I say something like "I release and let go of tension and stress" or "I’m deeply relaxed and fall asleep easily", whatever comes to mind while doing the tapping. And I’ve just started doing this as well. I did it quite awhile ago for other issues and it was quite helpful so I’m hoping it will work here too. And I did it in the middle of the night (I’m quite busy then!) and will probably do other times as well.

    I think that’s it. There may be one more thing. But I think all this helped me get by with 5 mg trazodone last night.

    I just looked at @Learner1's list and have taken all of that as well, though I take the P-5-P and thiamine during the day.

    Years ago I took original dose Seriphos and it helped a lot at that time, but not now.
     
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  7. A zombie

    A zombie

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    I think it was you who i saw about the niacin, ill add that in, also it was you sho isa at the calcium P. My issue with that and maybe it wont be an issue through this whole 8 year order of being misdiagnosed, the last 3-4 year live lost soooooooo much weight. its terrible . I cant get weight on my bones... the stem cells should correct everything but in meantime... anyway , the supplest is boasted as being used or WL an i see ppl losing weight , i cant afford to lose anything, and maybe it wont have this effect on me, but when i saw so many ppl saying ti helped with WL i was like eh, thats not a good one for me. Let me know your thoughts.
    i also just ordered kaviance, its worked for me in the past in very large doses (i the opposite of you, indeed LARGE doses of stuff- and maybe you do to with sups) but the tax, 100 mg relaxed me, like almost felt like jello, but it did nothing to induce zzzz's. I tried it the past and i t gave me the awful hang over feeling the next day , so i was almost reluctant to try it. I don't feel super bad the next day just cant sleep with it, so its out. Like you i hate using drugs i hate giving money to big HARMA and i hate what it does to a person. SO i try to avoid at all costs. Lyme and everything I'm going through causes loads of anxiety for me (hormones are out of whack etc) and my mom and others will say maybe you need an ANTI D, HELL no, i don't need an ANTI D i need to get my body healthy.... everyone wants a bad aid, no one want sth get to the root. FOR me i have its just layers upon layers of chit wrong, form the mutations to the lyme and co-infection to all the damage its all done. Anyway, i hear you LOUD and clear about using drugs, I'm so against them but I'm desperate. Cannabis saved my sleep. but also made me carb load like crazy at night , which was awful for blood sugar and at time is couldnt even see, LOL cause i needed Sooooooooo much to sleep. So i couldnt read at night, and watching shows were hard ,lol so there are good things that came from being forced to stop. But also BAD. so since i stopped cannbais I'm reading a ton , you'd think that wold help with sleep , nada.
    Ive definitely heard of tapping. Or what maybe EFT isn't tapping, Ill look into it. Ive also heard of TM meditation that id love to learn . OR i guess any form of meditation is good.ill look into the foot reflexology, VERY interesting. You've left me with some hopefully great tools. Im gals its working, like you I'm up several times night. On a good night , and i haven't had one in awhile i would wake just once. Shoot I'm ok with waking several x, as long as my body will let me sleep in, which it wont :(
     
  8. Mary

    Mary Senior Member

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    @A zombie - niacin really can help. My sister was having "normal" type insomnia and she started sleeping way better with the niacin; she also found that taking D3 at night helped with sleep also. You take the niacin at night, before bed. When I took it in the morning, it just made me tired, but at night it can be very good for sleep. Some people say niacinamide works better, but I think plain niacin (and I am used to the flush now) works better for me.

    Yeah, I've seen the same things about calcium pyruvate and weight lost. That wouldn't hurt me at all! :rolleyes: But I get your concerns. I haven't lost any weight on it - I read somewhere you still have to exercise, which I can't do, due to ME/CFS and PEM. You should probably only try one new thing at a time anyways, so that you will know what is doing what to you.

    Above you mentioned glutamine made your sleep worse - yes, glutamine can be converted to glutamate, and that's what keeps us awake. I used to be able to tolerate glutamine and it is good in some doses, but cannot tolerate right now, it does cause bad insomnia for me.

    Are you avoiding MSG in all its forms? (see http://www.truthinlabeling.org/hiddensources.html) I've found that things I used to be able to eat at night (e.g., canned chili), I no longer can. It has "natural flavors" or something like that. I've had to get extremely careful about what I eat at night - my favorite green chili sauce has "modified food starch" which hit me hard for sleep, and never used to do this. And of course soy sauce, etc. I rarely go out to eat but think I will completely avoid restaurants at night for the foreseeable future.

    Meditation is great, I used to do it daily until my sleep got so bad, then I couldn't do it. It's very simple to do, the important thing is you have to do it daily. It's like exercising - one set of sit-ups or other exercise reps is not going to do anything for anyone. It took about 6 weeks before I noticed anything with the meditation, but it was all good and I am going to get back to it. I found a very simple technique in an older book: The Relaxation Response by Herbert Benson. You can also find methods on-line. But it's not complicated. It's just a matter of doing it and knowing your mind will keep racing and accepting that and just continuing with the practice and it will get better, but not overnight.

    Re "faster EFT" - it really is faster and easier to do than original EFT. I originally tried the regular EFT several years ago, it was a little helpful but it was complicated too and I didn't keep it up. But the "faster EFT" is much easier to do and I think more effective (maybe because I do it more o_O)

    The kavinace scares me, I've read you can build up a tolerance and some people have a pretty rough time getting off of it.

    One more thing about foot reflexology - I also started pressing on the adrenal point on the sole of my foot - my adrenal glands are my Achilles heel too! (to mix a foot metaphor! :whistle:) I don't think this point is shown on the link I provided above, but you can look up a reflexology chart and find it. When I press that point, it's quite sore which is supposed to be an indication that it needs help. So I'm working on that with my foot as well.

    Good luck with everything!
     
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  9. PatJ

    PatJ far and free I gaze

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    You might be having a blood sugar drop at that time. It may help to eat breakfast to get your blood sugar up and then try going back to sleep.

    I've tried many things to get my weight up but the only thing that has made any difference is maltodextrin (4T per day). I'm still close to emaciated but the maltodextrin has helped me to gain, and maintain, at least 8 pounds.

    Sleep
    I've never tried pharmaceuticals for sleep, partly because I react so strongly to medications. After a lot of experimentation I've found a mixture of things that help me get a much better night of sleep:
    * Inclined bed (head of the bed inclined by 6 inches.) I was surprised at how much this helped my sleep. It also helps to prevent nocturnal urination.
    * Memory foam bed - the soft kind. A soft memory foam bed helps to reduce how often I wake up to change position. And, because I'm bedbound so much of the day, a comfortable bed is very important.
    * Blocking out light for a dark sleeping environment.

    * LDN: possibly the biggest aid to sleep although it disturbed my sleep while I was adjusting to it.
    * Methylfolate
    * Time release melatonin before bed, (Natrol) 1mg. Regular melatonin doesn't keep me asleep, but long acting does.
    * Nighty Night Tea with valerian
    * L-Tyrosine before bed
    * Magnesium before bed
    * Iodine - at least 12mg/day
    * Oatmeal before bed - provides a small meal to help with taking my bedtime supplements (they're easier to swallow with food), helps keep blood sugar up during the night, and helps to release serotonin for better sleep.

    * Ear plugs - I'm a very light sleeper so ear plugs help to block out unexpected noise that could wake me.
    * Not over-exerting - difficulty sleeping is a sign that I have pushed too much. If I stay within my energy envelope and don't over-exert then I usually sleep better.

    Each of these contributes a little to better sleep, but all of them together add up to a decent night. I can go to sleep fairly easily, and when I wake during the night I feel a little groggy and can usually go back to sleep easily.

    I've tried niacin and l-theanine but both made me more tired for hours after waking. Inositol sucks the energy out of me so badly it's like I've sedated all day long.
     
  10. A zombie

    A zombie

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    I def very much think I'm dealign blood sugar from being on prednisone for 9 mo while prego to stop anti immune attack on placenta , now now this lyme disease, red couldn't be worse for an already immune suppressed pregnant woman. A bout a mont ago taking spoonful of pretin in the middle of the night helped , ill try the again. Was on LDN for close to a year with zero i mean ZERO noticeable effects. Im not allowed to take now after the stem cells, for 100 days. I may resume but again saw zero effects, have tried numerous times. I've got fooling acid, is the same? i sleep in a VERY dark room cant sleep any other way, with blinders, WITH loud noise machine. oh and at this point in my juncture once I'm up I'm up, if i came down to eat , i wold never go back to sleep.
     
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  11. A zombie

    A zombie

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    I also think I'm dealign significantly with histamines intolerance, I'm really reducing histamines today.
     
  12. PatJ

    PatJ far and free I gaze

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    If that means folic acid then it's not the same as methylfolate (and has nothing to do with LDN). Methylfolate is better for people with MTHFR mutations because their bodies don't use folic acid properly.

    I tried a noise machine and couldn't stand it due to sensitivity to any kind of rapid repeating noises, including white noise. I'm such a light sleeper that I use earplugs even though I'm in a very quiet house.

    I hope you see some benefit from the stem cell treatment.
     
  13. A zombie

    A zombie

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    SORRY, folinic acid, yes i know what LDN is :) it think folic was recommended years ago got me cause folic acid wasnt good with my mutations but folic was... who knows
    im soooo use to the noise now id go insane without it. I was using an ap on my phone but it washy loud enough and would hear when kids got up etc, the noise machine , if I'm sleeping, helps. But i do know sometimes the nose does bother me as i can hear noises in side of noises. You know you're going insane when the happens, lol, just kidding.
    copied "The beautiful thing is your body is able to transform methylfolate back into folinic acid and folinic acidinto methylfolate, but it's not easy. There's enzymes for that. Now, let's talk about methylfolate first. Methylfolate is the new big dog on the block and what methylfolate does is support methylation. "Aug 4, 2015
    Methylfolate vs. Folinic Acid - Seeking Health Educational Institute
     
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