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Having Trouble with Insomnia last 5 days

Discussion in 'Sleep' started by Cheeza11, Jul 9, 2016.

  1. Cheeza11

    Cheeza11 Living life with Laughter instead of Fear

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    These last five days have been rough. I recently had a venous ablation surgery since I've been diagnosed with a blood clot disorder. Doctors want to close up the large arteries in my legs to help with the pain and also stop a blood clot to possibly cause a problem. Two days later I was then hospitalized and received my IVIG infusions I get every 4 weeks and was there for 4 days.

    That all happened last week. I feel like I have my energy back now and am able to walk better. But just can't sleep . I have Valium on hand I can take PRN when this happens and it hasn't been working. I am on day 6 now and haven't slept. I am exhausted. Can anyone help with this? Give me some advice when this happens to you? I know this is part of the illness and usually it goes away after the second day. This is the longest it has lasted and I am desperate and don't know how much longer I can last.
    *in the past I have tried meletonin and I tried this and didn't work.

    Thank you so much
    Any advice can help

    Chrissa
    ME fighter
     
  2. Mary

    Mary Senior Member

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    @Cheeza11 - 6 days is rough! Here's what helps me sleep:

    Melatonin (sublingual from Natrol - I found this worked better than the regular pills - how much were you taking? so much depends on the dose)
    5-htp
    l-theanine
    niacin (it sensitizes or stimulates the GABA receptors - it will make you flush but I don't care, it sure helps with sleep!)
    glycine (amino acid0
    Theanine Serene by Source Naturals
    Then on top of all that, 1 mg. lorazepam in the middle of the night

    Also, B1 is helping some with sleep and B6 as well.

    Also, have you had you cortisol levels tested? High cortisol, especially at night can cause severe insomnia. Mine was high some 13 years ago or so, and I started taking Seriphos (formerly phosphorylated serine) in the morning and it helped so much with sleep at night. Unfortunately, they changed their formulation this last May, God knows why, but it's now plain phosphatidyl serine and does not have the same effective.

    But Relora helps some with high cortisol.

    But I am puzzled by your statement that insomnia goes away after the 2nd day - I've never heard that before and don't believe it's true for ME/CFS. Mine never did. I had to experiment a lot to find what would help me.

    I hope you get some relief soon!

    (magnesium can also help, depending, like everything else!)
     
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  3. geraldt52

    geraldt52 Senior Member

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    Cheeza11, unless you have a history of this, I would caution you not to panic and end up on sleep medications, including Valium, that can be hard to get off of. It sounds a lot like you're suffering a rebound reaction to some of the drugs that you may have been given for the surgery. 6 days is quite a long time, so if I was guessing I'd guess you're near the end of it. If you've been taking the Valium, even if it wasn't working, you've probably added to the length of time it will take you to get back to sleeping. Rest as best you can, and try not to fret that you aren't sleeping...it will only make it worse.
     
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  4. Cheeza11

    Cheeza11 Living life with Laughter instead of Fear

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    Thank you for all that information. That's very helpful.

    Then insomnia in my case has only lasted for two days because of my situation with being in and out of the hospital. I go in every 4 weeks sometimes will be there for 7 days sometimes for only 3 days , each time is different. Each time I get my IVIG I'm also given Benedryl through my IV which helps with my sleep. After being discharged I'm layed up for about a week then that gives me three weeks out of the months to feel somewhat okay. The days leading up to when I need to check into my next IVIG is when the insomnia happens. That's why I said it only last 2 days because by the time I get hooked up to my IV I'm getting Benedryl and I'm sleepy. But this is not the case right now. I've just been discharged and im on day 6 of being awake still. Very frustrating. Oh well such is life and this disease! o_O

    Thanks for your reply
    Wish you well
    Chrissa
     
    Izola likes this.
  5. Cheeza11

    Cheeza11 Living life with Laughter instead of Fear

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    Thank you. Good advice
     
  6. Mary

    Mary Senior Member

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    Okay, I didn't know any of that, it's quite different than typical ME/CFS insomnia. That sounds rough, going to the hospital every 4 weeks, though it's good that you end up with 3 weeks feeling halfway okay! :confused:

    I agree with geraldt52 about not relying on valium. You might try Theanine Serene and niacin, it's a pretty potent combo and I think has a similar effect to valium, which from what I understand, increases the effect of GABA in the brain, without the potential addiction and tolerance issues.
     
  7. geraldt52

    geraldt52 Senior Member

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    That could certainly explain the insomnia, as your body struggles to adjust to hugely varying levels of Benedryl. I think our bodies struggle to adapt to such changes...to things that healthy people have no problem with.
     
  8. frog_in_the_fog

    frog_in_the_fog Test Subject

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    I sometimes feel like I have to learn how to sleep again after having bouts of insomnia for a week. I will typically go through a cycle of falling asleep then snapping awake moments later, over and over again. For me it is often anxiety that keeps me from falling asleep, then my body goes into a mode where I just can't even try to sleep. It's as if a bear or tiger will eat me if I don't stay awake, it kind of feels like that.
     
  9. Cheeza11

    Cheeza11 Living life with Laughter instead of Fear

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    @Mary @geraldt52 I wish I could try this Combo. Once when I was first hospitalized a year ago for a long spout I was given Niacin and had a very bad allergic reaction to it so I'm no longer allowed to take it. This is why my Doctors prescribe the Valium and are very puzzled by my ME because I'm having other things go on with it then they don't know if its the ME or some other ailments that are causing some of these symptoms. Getting frustrated. Had a a Hematologist appt today and next stop will be to check into USC hospital to see if they can look into my case. Too many question marks and no answers. Not getting better.
     
  10. Gingergrrl

    Gingergrrl Senior Member

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    @Cheeza11 Am curious, you said that you go into the hospital for a full week for IVIG (unless I misunderstood) and was wondering why that was? I will be starting IVIG (Gamunex) either next week, or soonest appt I can get, but it will be done at an infusion center within the hospital but then I go home that night. My infusion might take 8-10 hours per my MCAS doc but the plan is still to go home. What is the reason for the week long hospitalization for IVIG? Is this common? Thanks for any info!
     
  11. geraldt52

    geraldt52 Senior Member

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    Are you back to sleeping better yet, @Cheeza11? In the future you may want to try taking Benedryl orally for awhile after your hospital visits, weaning yourself off of it to avoid the huge swings in your system. I wouldn't take it all the time, as you can become habituated to it just like anything else.
     
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  12. Mary

    Mary Senior Member

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    I don't have your sensitivities or even begin to know how to deal with them - I hope someone else can help you!
     
  13. Cheeza11

    Cheeza11 Living life with Laughter instead of Fear

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    The reason that I have to be admitted while given the infusions of IVIG is because I have a Blood Clot Disorder and every time I get the infusions I get several DVT's so depending on how many I get depends on the length of my visits. They monitor me very closely so I don't have the DVT's start infiltrating during the infusion or worse. The Doctors are on top of it and I'm thankful for that but it sucks to not be able to go to an infusion center and be in and out in one day. Becoming frustrated.!!!

    Chrissa
    ME/CFS fighter
     
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  14. Cheeza11

    Cheeza11 Living life with Laughter instead of Fear

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    Yes I finally crashed. But I crashed so hard that I'm tired even throughout the day. Its like I can't catch up. So I'm taking naps throughout the day. Slowly started to feel better. Each day is getting better. I crashed Monday and today still feeling sleepy. Hoping tomorrow is better. When I get home from hospital I do this. Take the tablets for two days until I can sleep on my own and it usually is fine. Or sometimes I don't have to take at all. The Valium I rarely use. I only use when situations like this happen. To be honest I hate taking my medications and think that doctors just want to fix something with a pill. I'm into holistic remedies and have been trying these for years. It just got to the point where I needed to sleep. I have to take care of my 3 year old and need to be awake lol :confused: . that's why I was freaking out. I ended up having to get a babysitter so I could catch up on sleep. . all is good and hope each day is better.

    Thank you
    Chrissa ME/CFS fighter
     
  15. Cheeza11

    Cheeza11 Living life with Laughter instead of Fear

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    Also I got home from hospital on the 29th. I shouldn't be having these sleep problems this far after being out of the hospital. So confusing. The iv Benadryl is a must because my throat has closed up on me several times and broke into hives from the infusion so the Dr's give it to me around the clock.
     
  16. geraldt52

    geraldt52 Senior Member

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    I have found that once you get a bout of insomnia going it can continue quite awhile...a lot of that is a function of the anxiety that naturally comes with not being able to sleep. Since the insomnia seems associated with the IVs in your case, I would really encourage you to try easing down from the levels of Benadryl that are required during the IVs, by taking it orally in gradually decreasing doses in the days after the IV. Then I would avoid it entirely until you have to have another IV.
     
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  17. Gingergrrl

    Gingergrrl Senior Member

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    Hi Chrissa, Thank you for your reply and am sorry for my delayed response. Am hoping your insomnia has improved and you are finding something that is working.

    I was curious, did you know that you had the blood clotting disorder prior to starting the IVIG? I will be starting IVIG next week and was tested for the anti-phospholipid panel (Hughes Syndrome) etc, and was negative on all tests so I think I am okay but I guess you never know for sure until trying IVIG?

    Also, is your IVIG for immune deficiency or for autoimmune reasons?

    It sounds like you have great doctors who are monitoring you very closely re: blood clots (but can only imagine how scary and frustrating it must be)! Best wishes to you and I am very appreciative of your responses.
     
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  18. Groggy Doggy

    Groggy Doggy Mermaid, lost at sea

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    Hi @Cheeza11

    I am checking in with you to see how you are feeling?

    Thinking of you,

    GD :dog:
     
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  19. Izola

    Izola Senior Member

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    Thank you, Mary. I, too, have been dealing with the insomnia monster, too, along w/ a lot of other ME issues. Until recently, my living situation made it impossible to do much more than bits and pieces of research which I would then promptly forget since my notes would disappear. I am now out of that living hell and actively researching ME Issues. You just advanced my research exponentially on the sleep issue and a bit more. :)

    Chrissa, I hope Mary's response will help you, too. Be really careful about the Valium. It is very addictive--unless they have changed it since decades ago. :hug: Good Luck. iz
     
    Last edited: Aug 2, 2016
  20. Mary

    Mary Senior Member

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    @Izola - I'm glad to hear it helped you! :nerd:

    I just wanted to add that I am weaning myself off of the lorazepam with the help of niacin. I'm down to 0.5 mg. now and hope to be off it entirely in 4- 6 weeks. If anyone's interested, this article was very helpful to me, as it's notoriously difficult to get off of benzos, but I'm really not having any problem. I know I was on a low dose, but I've read people even have problems with that. Anyways, here's the article:
    http://orthomolecular.org/resources/omns/v10n09.shtml
    I'm not taking near the dose of niacin used in the article (250 mg. at night in divided doses), but would go up if I needed it.
     
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