ME/CFS and the Change of Seasons: How Does This Affect You?
The advent of autumn can hit Jody Smith pretty hard. She's learned a few ways to lessen the damage every year. How do you handle the change of seasons?
Discuss the article on the Forums.

Frustrated at misconceptions towards Insomnia

Discussion in 'General ME/CFS Discussion' started by kitaara, Jun 27, 2018.

  1. kitaara

    kitaara

    Messages:
    18
    Likes:
    23
    I know Insomnia is a vast term, and most people with our condition will fit into it in some way or form.

    But what frustrates me is the many people complaining that they don't sleep because they sleep "ONLY" 4-5 hours.

    Try to have just 30 minutes of sleep........or none at all............every day................for 2 years.

    I'm sorry it's just so frustrating and painful to read these comments. I would be over the moon if I could have 5/6 hours of sleep every night!!
     
    Wolfcub, Stretched, alkt and 3 others like this.
  2. Hubris

    Hubris

    Messages:
    59
    Likes:
    93
    i sleep 8-10 hours every night and i still feel miserable and can't do anything if that makes you feel better
     
    ahmo, Stretched and alkt like this.
  3. Dechi

    Dechi Senior Member

    Messages:
    1,195
    Likes:
    2,302
    Having insomnia doesn’t mean you only sleep 30 minutes per night. It means there are periods in the night when you can’t sleep. My insomnia was from 2-6 am and it took me 2 hours to fall asleep, which means I only slept 4-6 hours per night. Which made me quite unable to function.

    I’m sorry your insomnia is so severe, but it doesn’t have to be this bad to be called insomnia. I hope you find a way to get better. 30 minutes of sleep per night must be hell.
     
    Neunistiva, Stretched, alkt and 3 others like this.
  4. Learner1

    Learner1 Forum Support Assistant

    Messages:
    3,155
    Likes:
    5,411
    Pacific Northwest
    @kitaara I had significant sleep problems for over 2 years, but wotked with a functionsl medicine doctor who kept trying different things, until he got me to sleep through the night. There is a way, you just hsve to find it.

    The things that finally helped me sleep through the night was 2g each l-citrulline snd ornithime aspartate.

    I also take:
    • Melatonin
    • LDN
    • Progesterone
    • Pregnenolone
    • Alive Plant Based Calcium
    • Pyridoxal-5-phosphate
    Other things we tried that helped in different ways, but I dropped after stsrting the ornithine:
    • Theanine
    • GABA
    • 5-HTP
    • Phosphatidyl serine
    • Kavinace (this one can be addictive, but it was effective
    Hope you find something that helps!
     
    Stretched, alkt, Mary and 1 other person like this.
  5. Daniel E.

    Daniel E.

    Messages:
    39
    Likes:
    65
    @Learner1 , how do you personally feel about 5-HTP?
    Does it help ? How long does it take for the sleep to get better when you take it ?
     
    Stretched and alkt like this.
  6. Mary

    Mary Moderator

    Messages:
    4,735
    Likes:
    9,995
    Southern California
    @kitaara - have you ever had your cortisol levels tested? Mine were high at night several years ago and until I got my cortisol levels normalized, nothing would touch that insomnia. A good test is the Adrenal Stress Index Test which uses 4 saliva samples taken during the day/evening to track how your cortisol levels rise and fall. Most doctors only do a blood test for morning cortisol which is not much information at all.

    Testing found mine was quite high at night. I was given Seriphos (phosphorylated serine, NOT phosphatidyl serine) and it worked like magic. I had to experiment to find the correct dose, and titrated up to 8 capsules a day initially. That's a very high dose and I don't recommend people start with it. I read and discovered that it works best taken in the morning. Taken at night it caused a weird awful insomnia, different than usual, but taken in the morning it just calmed down during the day and then helped a lot with sleep. After a few months I was able to cut the dose and now just need a small amount every so often.

    I'm also taking 5-htp, lots of magnesium, glycine, inositol, gotu kola, magnolia bark, niacin, melatonin and l-theanine. It's ridiculous but it's working pretty well. I hope to be able to cut some of this out pretty soon. Oh, and I added in a kava tincture for good measure. Hair analysis a few months ago showed that my calcium/magnesium ratio was very badly skewed in favor of calcium, and I was advised to stop my calcium supplement (at least temporarily) which I did, plus I just about doubled my magnesium, taking it right before bed and in the middle of the night, and that helped a lot too. And I'm now finding that magnesium oxide (by Nutricost), to my surprise, is working the best for me. I had been taking magnesium glycinate but it was raising my blood pressure when I increased my dose, and magnesium citrate made my insomnia worse.
     
    alkt likes this.
  7. Mary

    Mary Moderator

    Messages:
    4,735
    Likes:
    9,995
    Southern California
    I've been taking 5-htp for 15 years before bed. It helped me with sleep almost immediately, within a day or 2 as I recall. It gave me a slight headache for about week when I first started it, but then the headache stopped. I was taking 150 mg. for quite awhile and now take 200 mg before bed and do well with it. But you should be very careful if you are already taking a prescription anti-depressant, you might develop serotonin syndrome if you add in 5-htp.
     
    Learner1 and Daniel E. like this.
  8. Learner1

    Learner1 Forum Support Assistant

    Messages:
    3,155
    Likes:
    5,411
    Pacific Northwest
    It helped a bit. However, I've recently been alerted that high tryptophan is something we may want to avoid so I'd try the other things first.

    All of the things I mentioned had a pretty immediate action. There are different factors in our biochemistry that affect sleep, so what wotks for me may not work for others. Its worth it to try different things.

    When we finally lit on ornithine, it was amazing. I had a full night's sleep immediately. And, interestingly, a week later, my amino test came back showing ornithine deficiency, so it was a good guess by my doctor. Many of us have amino acid deficiencies, according to Fluge and Mella...
     
    anni66 and alkt like this.
  9. kitaara

    kitaara

    Messages:
    18
    Likes:
    23
    I apologize if I offended anyone in my original post. I just wanted people to appreciate that things could be worse, that we should appreciate the things that we have but other people don't. But I understand that we are all suffering in one way or another.

    Hubris - it seems you are missing deep sleep part of a normal sleep cycle. That's how mine started too. Yours sounds like a cortisol issue, possibly high. Have you ever tried Relora?


    Dechi - Thank you, you are very sweet. It really is hell. Now I see why in some countries their first method of torture is sleep deprivation! On another note, are you familiar with the Meridian Clock? According to Traditional Chinese Medicine, whenever we have problems (or wake up) corresponds to an organ. I am looking at one on my laptop, the diagram shows that from 2am to 6am it's the Liver-Lung-Large Intestine. I know it sounds new-agey, but mainly that's how I discovered I had a fatty liver. Maybe it's worth looking into.

    Learner1 - thank you for taking the time to list the things which worked for you. I appreciate it so very much. I am happy for you that you have finally found a solution. LDN and Citrulline seem very very promising. I will DEFINITELY look into them! Thank you for mentioning them.

    Theanine feels the best one, in my experience. Sadly my stupid body builds up a tolerance to it after 2 days. I takes me weeks to feel the same effects on Theanine again. Crazy huh? (because of the congested liver thing I have, no doubt)

    Daniel E - I used to take 1/3 of a 50mg without ill effects, just a little relaxed. Upped it to 25mg and....oh boy....the anxiety and palpitations went through the roof! 5-HTP increases cortisol. I wonder if it increased mine too much?

    Mary - it's like you just read my mind. Right after I ordered a Cortisol test, you posted here :) You are right, that's the only way to know for sure. Mary, when you had the high levels of cortisol at night, did you feel great pain in your body by any chance? Like, pain in the muscles and joints which is more severe than the rest of the day.

    I had no idea about the insomnia caused by Seriphos! But it looks like a very good product. I'd love to try it. I hope I don't get another crash.
    I am glad you found a nice stack you can use that helps you. Do you cycle between them to avoid tolerance or you take them all every night? I'm curious

    Let me list the stuff I've tried (there are more probably, but my brain fog interfers). Maybe there are things which someone could try in the future

    STUFF I TRIED:

    - Theanine + Tryptophan (the best, but my tolerance builds super fast)
    - 5-HTP (25mg and I'm off to PANICLAND. 15/16mg makes me a little bit relaxed)
    - Valerian (relaxed, but sooo in paaaain. Possibly increases Glutamate in people who have a bad GABA/Glutamate ratio? Or lowers cortisol too much?)
    - Glycine (Hello again Panicland! possibly increases glutamate in sensitive people?)
    - Essential oils (no effect, maybe calming...?)
    - Vagus Nerve Stimulation (helps with anxiety, not much for sleep)
    - Jujube (Pain. Pain. Pain. So sleepy but in pain. Lowers cortisol too much? It's a pity, this one would be the bomb.)
    - Oleamide (increases Deep Sleep. Never did anything for me)
    - Ornithine (felt it didn't do anything)
    - Noni fruit (didn't take enough to feel anything beyond little relaxation)
    - David Delight Pro (a machine which helps you entrain your brain. There are a lot of modes - meditation, sleep, concentration, etc. This one used to work to get at least 2 hours of sleep, some people helps them to sleep all night. I grew tolerant of it.)
    - ICES machine (to help with the pain, but it makes too tired)
    - Magnesium Glycinate (helps with relaxation, sleep not so much)
    - Taurine (very good, sadly not effective anymore. Works on GABA receptors I think)
    - Phosphatidylserine (super alert. No matter when I take it. It should increase Dopamine)
    - Melatonin (never felt anything)
    - Milk Peptides (relaxation. Some people helps them sleep)
    - Reishi (never felt anything)
    - Nigella Seed (sleepy, but laxative for me???)
    - B6 (not always the same.)
    - Fennel (relaxing. Be careful if you have too hormonal problems. This one might increase prolactin, progesterone and a little estrogen)
    - Acupressure using an electro-acupuncture machine bought off aliexpress. (was more effective in the past)
    - Epsom Salt foot baths (helps with relaxation and a little sleepiness)
    - Self-Reiki (helps in relaxation and the pain)
    - Crystal therapy (helps sometimes, or just placebo)
    - Bach Remedy Sleep spray (a bit relaxed, worked better in the past)
    - chamomille tincture on tongue (a bit dizzy in the past, not anymore)
    - Sleep Binaural Beats before bed (sleepy, but you'd have to avoid building tolerance to it so you'd have to cycle different ones. There are a lot on Youtube)
    - Acupuncture (helped for a bit, then I went into remission)
    - Potassium (I am not sure. I need to investigate this further)

    Herbs are very hit or miss for me. Valerian gave me the worst muscle and joint pain of my life, so I'm going to steer clear of herbs for now. If I remember something else, I'll edit the list.
     
    Last edited: Jun 28, 2018
    Dechi likes this.
  10. Mel9

    Mel9 Senior Member

    Messages:
    738
    Likes:
    1,848
    NSW Australia
    Some find valerian good. Another treatment used by many: Panadol.
     
  11. Learner1

    Learner1 Forum Support Assistant

    Messages:
    3,155
    Likes:
    5,411
    Pacific Northwest
    @kitaara That's a huge list...keep at it!

    Perhaps working on your congested liver might be the key?

    And have you had all your hormones, especially progesterone and 24 HR cortisol measured? The DUTCH test is easy and very good - it tests melatonin, too.

    Another patient I know has not bern able to sleep well for years. She's really toxic and nothing has been able to detoxify her. Finally, leaving nonstone unturned, she had a special cone X-ray done of her jaw, and they gound she had 4 cavitations from her wisdom teeth extraction 30 years ago that were infected, and removing the infected tissue finally got her to sleep and to be able to detoxify. Apparently, more people than we think have these sitting around and destroying our health.

    Or maybe try the Kavinace?? It worked for me before I found other solutions and I was able to get off of it.
     
    Dechi likes this.
  12. Sleep is complex.

    After many years, I've finally gotten my sleep to a better place. I had symptoms of sleep apnea, but my first sleep study 10 years ago didn't show any issues. I kept having symptoms that gradually got worse, and went to a whole new level with peri-menopause. It took me three sleep studies this time around to get enough data to get a diagnosis.

    The only issue I have now is waking up in the middle of the night for several hours. (Which technically means I still have insomnia.) But I can live with that.

    Some medications mess with sleep because they deplete melatonin. Examples are clonazepam (ironically sometimes prescribed for sleep) and beta blockers. My mom, who had ME, was on a beta blocker and slept about like Dechi for 20 years.

    If you're taking any medications, google the name of the drug and "insomnia" and see if it's a side effect. You can also try googling the name of the drug and "depletes" to see what vitamins and minerals it might deplete and if that's something that might screw up sleep.

    Zoloft, which I take for anxiety, also helps my sleep.

    One of my docs had suggested a very low dose of sinequan (1-2mg) to help with getting deep stage 3 and 4 sleep. I haven't tried it personally.

    I've also tried many of the supplements people have mentioned with varying results. Like valerian caused a coma like state and hyper dreaming of bad dreams. Magnesium is awesome - it keeps my foot from twitching all night long waking me up 20 times an hour.

    I also had an extreme sleep phase delay. It was so bad, I didn't have a normal day/night cycle, and my sleep moved forward a half hour or more per day. Once I started getting off all computer type screens by early evening it straightened out. The blue light emanating from screens tells your body to wake up. Amber light tells it to go to sleep.

    I've also heard of people having trouble with EMFs messing up their sleep. The electro magnetic fields can tell the body to wake up just light blue light does. You can do a trial of turning off the breakers for your bedroom for several nights to see if it helps.

    I would encourage people to go to sleep doc and get a sleep study to rule out normal stuff like sleep apnea or periodic limb movement disorder (what most people call restless legs but really they're two different things).

    Then if that doesn't help, start looking at stuff like people have been discussing on here.
     
    Learner1 likes this.
  13. Stretched

    Stretched Senior Member

    Messages:
    455
    Likes:
    484
    U.S., Southeast
    FWIW, I use it 2x daily - also used it to get off sertraline (Zoloft) after taking it for 25+ years. It was slow go, long titration off.
     
    Learner1 likes this.
  14. Wolfcub

    Wolfcub Senior Member

    Messages:
    564
    Likes:
    1,288
    SW UK
    Oh gosh, I am really sorry. That must be pure torture. I honestly can't imagine it, and can't imagine how you have survived. There sure are some "unsung heroes" in this world. God bless and I hope you find some relief.
     
    Mel9 and kitaara like this.
  15. kitaara

    kitaara

    Messages:
    18
    Likes:
    23
    Thank you all for your words of encouragement and help. I don't know what I'd do without this forum full of amazing people.
     
    Mel9 and Learner1 like this.
  16. ahmo

    ahmo Senior Member

    Messages:
    4,477
    Likes:
    6,885
    Northcoast NSW, Australia
    May be irrelevant for you, but after years of insomniac misery, once I got up to theraputic doses of methyl B12, it abated. I'm not a great sleeper, but the misery of the past is gone. good luck. and yes, the forum of amazing people is such a gift!:thumbsup:
     
    Stretched, Mel9 and kitaara like this.
  17. kitaara

    kitaara

    Messages:
    18
    Likes:
    23
    Hi Ahmo, these things are never ever irrelevant. :) Sometimes the simplest things could be the answer. Thank you so much for sharing!
     
    Stretched and Mel9 like this.
  18. Stretched

    Stretched Senior Member

    Messages:
    455
    Likes:
    484
    U.S., Southeast
    Great! How about sharing the particulars, e.g. dosage, timing and frequency. It is acknowledged that individual results will vary.
    Thanks.
     
    Last edited: Jul 11, 2018
    Mel9 likes this.

See more popular forum discussions.

Share This Page