1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
A disease with two faces? Re-naming ME/CFS
Persuasion Smith covers the bases on the misleading and disreputable name for our disease we've all been saddled with ...
Discuss the article on the Forums.

Unresponsive Insomnia

Discussion in 'Sleep' started by OkRadLakPok, May 2, 2013.

  1. OkRadLakPok

    OkRadLakPok

    Messages:
    32
    Likes:
    7
    There are many of us who have insomnia. Does anyone have it so bad that nothing helps?

    I have suffered with intermittant insomnia for many years. The longest was ten days with NO sleep but eventually Benedyl did work and I slept.

    Two years ago I had an MRII of my brain. Since then I have never been able to sleep. Once I took 30 pills of many kinds-thankfully mostly herbal. Valerian, melatonin, GABA, 5-HTP, and then Nyquil and even a xanax and ONLY slept three hours.

    This has been going on two years. If I do not rigidly keep my cut off at 5pm or 6pm to wind down, forget it.

    I never FEEL sleepy though I can be exhausted like a zombie.

    I think the MRI did something. I have olts of metals in my body and the MRI could have dislodged some of them. I was in a lot of pain after with legs cramps and bone pain for a long time.

    My point is this insomnia is horrific. I feel like a freak of nature because "if you are tired, you will sleep" is a crock. I work out, eat as good as I can considering that is about 3 foods, and relax as much as I can.

    Now I can get by with Ashwaganda herb if I mix it with GABA and melatonin and only do it once ina while.

    I know we have all talked about insomnia a lot, but I just feel like this is a permanent thing. Has anyone else had just a total inability to ever feel sleepy and sleep is so hard and such a struggle??! Has this happened after an MRI or other event? It was like a light switch turned off.
     
  2. adreno

    adreno 3% neanderthal

    Messages:
    2,450
    Likes:
    1,720
    Tundras of Europa
    Glycine, 3 grams before bed.
     
  3. Hip

    Hip Senior Member

    Messages:
    3,130
    Likes:
    2,978
    Sometimes with MRIs you are given an injection with gadolinium, which is a contrast enhancer that improves the visibility of your internal organs on the MRI image. Very rarely, this contrast enhancer causes a side effect called nephrogenic systemic fibrosis. But I did not find any connection between contrast enhancers and insomnia.

    Tip: I find taking calcium 500 mg before bed often helps me to get to sleep.
     
  4. OkRadLakPok

    OkRadLakPok

    Messages:
    32
    Likes:
    7
    Yes, Gadolinium is very bad. It's a toxic heavy metal and the companies knew that the chelates break down meaning that you retain some in your body. It is causing something called GASF, too which is fibrosing in people with normal kidneys. It is scary.
     
  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,319
    Likes:
    4,675
    australia (brisbane)
    do an adrenal stress index saliva test, basically tests cortisol levels 4 times throughout the day. Many of us with cfs seem to have low morning cortisol but at night it is too high for us to sleep properly.

    dhea helps or should run parallel with cortisol and help balance it out, so good dhea levels can help. Phosphatidyleserine(ps) at approx 400mg at night can help lower night time cortisol in some of us. It worked very well for me for several months then stopped, now i use it intermittently which helps but i still needed to use sleep meds but it did improve sleep alot. Economically its best to buy bulk powder ps and cap it yourself as high dose ps already capped is expensive. Also hydrocortisone in the morning with using the other methods and melatonin at night can help try and sort proper sleep cycle.

    When sleep just isnt happening i have found seroquel helpful, i use 25-50mg which is a low dose, some need more but i also find i need say 5 mg of valium with it and sleep 99% of the time. I do this when im in a hole with sleep. It seems to reset things.
     
  6. soxfan

    soxfan Senior Member

    Messages:
    677
    Likes:
    226
    North Carolina
    Have your melatonin level checked through saliva at 10 pm. The normal level according to neuroscience is 25 to 50 mg (not sure about the top level) and mine was 10.4 and like you I never feel sleepy at night but feel very fatigued. I also have high cortisol at night where throughout the day it is flat. Luckily sleep meds work for me but I have total unrefreshing sleep which I guess is better than none at all.
    I would definitely get the melatonin checked...
     
    merylg and heapsreal like this.
  7. kurt

    kurt Senior Member

    Messages:
    1,132
    Likes:
    176
    USA.Earth
    Without some type of help I have total insomnia. Here is what works for me:

    Rehydration drink (with salt and brown rice milk, make it myself). Essential to keep up the blood volume, with low BV the adrenals work too hard and you may have fight-flight continually which makes sleep difficult to impossible.

    Adrenal support. IF the adrenals are exhausted sleep is difficult as it requires a lot of energy. Ester-C and 'Adrenal Stress End' supplement during the daytime are very helpful for that. Also Goji juice supports energy well, and I can take that at night as it supports mitochondria but does not stimulate the adrenals. Also I take some d-Ribose before bedtime to help the Goji.

    Magnets. I use north-pole magnets over the abdomen (from LyonLegacy). This helps stimulate natural melatonin release (pineal gland) and lowers inflammation. I use a magnetic pad with a brick magnet on top.

    Cinnamon. Works as a vasodilator and ACE inhibitor, very relaxing.

    Relaxation meditations. I rotate between many I have found online that are helpful.

    Ativan (benzodiazapine). There are many different benzos and I have tried most of them. Ativan has the best formulation for getting me to sleep, very fast acting with a 4 hour half-life. I can increase dose also as needed which is nice. But I don't use Ativan every night, only on occasion when nothing else is working. However, when I was first sick with CFS I had to use it every night, for 8 years. But now just on occasion, or when there is stress.

    I have also tried many of the other suggestions made in this thread. Calcium/Magnesium powder, or just Calcium powder, was very helpful at one time, and also I have taken GABA although not much really gets into a person, benzo is better.
     
    EMilo likes this.
  8. AbbyDear

    AbbyDear

    Messages:
    91
    Likes:
    35
    usa
  9. Crux

    Crux Senior Member

    Messages:
    583
    Likes:
    212
    USA
    Zinc is still working the best for my insomnia, even though I take melatonin, niacinamide, and clonazepam as well. Without zinc, though, the others only work sometimes.

    If someone has elevated evening cortisol, zinc has been shown to acutely lower it, so it may help to take it in the evening. ( I take it alone because other combinations have disturbed my sleep.)
    http://link.springer.com/article/10.1007/BF02789143
     
    kurt and Sherlock like this.
  10. jeffrez

    jeffrez Senior Member

    Messages:
    1,108
    Likes:
    642
    NY
    Sorry to hear of your horrible insomnia. I have had similar bouts in the past, once lasting for weeks of total non-sleep after reaction to an SSRI. I took near 50mg of melatonin, all kinds of herbs, benadryl, etc. - nothing even touched it. That's when I started getting into neurofeedback and found a social worker locally who offered it. Once learning the basics, I was able to get my own equipment and do some basic training on my own.

    You've got to think that those huge magnets in MRI are going to do something to your equilibrium. I felt whacked out in a kind of daze for almost a week after an MRI once. They're using "Transcranial Magnetic Stimulation" experimentally now in depression and testing it on some other things, so it's pretty clear that magnetic energy can really depolarize and affect your brain. I remember reading recently where they've found they can even change people's moral judgments using transcranial magnetic stimulation, affecting part of the brain called the temporal parietal juncture. I'll bet they start using it on prisoners soon, to experiment and see if they can change their behaviors, etc.

    So the point is that no doubt can MRI really affect your brain function, even I would suspect causing bad insomnia. Of course, the mainstream people would probably dispute that MRI would do anything to your neurofunctioning, but I think we all know how clueless they are when it comes to diverse populations and very sensitive people. My guess is that over time the response will probably correct itself, but it's possible that it got "stuck" in that pattern. Neurofeedback could probably really help you in either case, either to accelerate things back to normal, or to get you "unstuck." In the meantime, all you can really do is start experimenting with herbs, supplements, meds, etc. from all the great suggestions you'll get here, to find what works best for the symptoms. Hope it resolves for you soon - insomnia is totally awful!
     
  11. OkRadLakPok

    OkRadLakPok

    Messages:
    32
    Likes:
    7
    Jeff--- you wrote "L remember reading recently where they've found they can even change people's moral judgments using transcranial magnetic stimulation, affecting part of the brain called the temporal parietal juncture."

    Oh my!!! I am going to read about this. This is really, really creepy. Yes, I felt terrible after mine. Did you have the dye? I had the dye two years before and it cause my hands to burn so bad for about 2 weeks and now they are fibrosing. I cannot even get into the house if it gets below about 45. I cannot turn the handle.

    I am going to try to find that article. It looks really scary!
     
  12. jeffrez

    jeffrez Senior Member

    Messages:
    1,108
    Likes:
    642
    NY
    http://www.sciencedaily.com/releases/2010/03/100329152516.htm
    http://www.ncbi.nlm.nih.gov/pubmed/20351278

    No, I would never allow them to put any dye in me, no way, no how. I don't know about chelating gadolinium specifically, but there's no doubt that regardless of what it is - metals, organophosphates, lipophilic VOCs, etc - that sauna can help detox them. It would probably take building up to hours per day and doing it for a while (weeks), getting proper nutrients, rehydration, etc. in the process, but I'm sure it would help reduce any high levels that might exist.
     
  13. OkRadLakPok

    OkRadLakPok

    Messages:
    32
    Likes:
    7
    Yes it is impossible to get out. I belong to a gadolinium forum where some have had more than dozens of chelation therapies and still high Gd levels. Further, if you have metals in you such as arsenic or mercury or even zinc and iron, those metals can compete with the Gad for the chelates surrounding the Gad and breaks it apart.

    This is what I think happened to me. I just took a metal test 24 hour urine and will post the results.
     
  14. Dreambirdie

    Dreambirdie work in progress

    Messages:
    5,111
    Likes:
    3,364
    N. California
    I am going through a horrible bout of insomnia right now as well. IT SUCKS. In my case I get to sleep, but wake up about 4 times/hour all night long. I have taken tryptophan for many years, which has helped a lot in the past, but lately it's lost its effectiveness. It still helps me get to sleep, but not to stay asleep.

    I take other things as well--magnesium, potassium, isoquercitin. These have all helped in the recent past. I got some chinese herbs for sleep--not doing the job. I tried some melatonin--nada. And glycine-nada. And melissa-nada.

    kurt I agree that sleep takes energy, but I am surprised you can take d-ribose before bed. That makes me so wired. But I am thinking that maybe I need to take my adrenal boosters later in the day or before bed, and see if that might help. Good idea.
     
  15. AbbyDear

    AbbyDear

    Messages:
    91
    Likes:
    35
    usa
    i also had bad experience(s) with mri. the last time i did not get contrast, and still felt messed up for at least a day or two thereafter - like personality had changed - it scared me. i felt it also negatively effected an area that had circulation problem (before hand). i agree they probly not acknowledge these things. they test kidneys and/or liver for clearing effects of die, but i not trust that, specially if there are any circulation issues at all. this is too bad cause contrast can help find problems. of course this is just my experience/opinion.
     
  16. August59

    August59 Daughters High School Graduation

    Messages:
    1,480
    Likes:
    405
    Upstate SC, USA
    I like the term "Unresponsive Insomnia" and I would put it, in my case, as one of the top 3 chronic symptoms I have. I would probably have to add the unrefreshed sleep somehow though. I've tried everything from GABA, Valerian and KAVA to Trazadone, Ambien and Xyrem plus everything in between. Nothing results in refreshing sleep, but even at Xyrem's max dose (which is a little higher than what the leaflet has you believe) I only get 6 to 7 hours of sleep.

    The problem on top of this is never entering Stage 3 & 4 sleep. I have quick onset most of the time and then into Stage 2 or jump to REM. They suppressed my REM sleep and I stayed in Stage 2 the whole time which was about 3 hours and I told them to unhook me and let me go cause I wasn't going back to sleep. I will say the Xyrem gave me 9 minutes of Stage 4 sleep.
     
    soxfan likes this.
  17. August59

    August59 Daughters High School Graduation

    Messages:
    1,480
    Likes:
    405
    Upstate SC, USA
     
  18. soxfan

    soxfan Senior Member

    Messages:
    677
    Likes:
    226
    North Carolina
    I am going to be scheduled for a sleep study again in a few weeks and am not so sure I will sleep this time either. No matter what I take I don't get refreshing sleep either. I have tried at least 10 or more different combos including OTC and prescription. There is nothing that gives me that refreshed feeling when I wake up in the morning. All though I did just find out I have high cortisol at night. I can fall asleep with meds but never feel good in the am....
     
  19. jeffrez

    jeffrez Senior Member

    Messages:
    1,108
    Likes:
    642
    NY
    Haha, not sure what tattoos have to do with it, but it sounds funny. Crank it up! lol. : P
     
  20. Calathea

    Calathea Darkness therapy

    Messages:
    1,096
    Likes:
    564
    Scotland
    Read up on darkness therapy and how that affects natural melatonin production. I've managed to completely turn around my sleep problems using darkness therapy and light therapy, it's as good as a strong sleeping tablet for me, and wrote a website about it at In Search of Mornings. There are other good sites out there too, look at the links section. I was really surprised to learn that merely sitting in ordinary indoor lighting in the evening was enough to mess up my sleep pattern. I was on a 25 hour sleep cycle before I started these treatments.

    The one time I've had sustained bad sleep since taking up darkness therapy was when I was coming off gabapentin. Vicious stuff. It did settle down eventually, thankfully.
     
    dannybex likes this.

See more popular forum discussions.

Share This Page