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waking up at 1 am with continous adrenalin like surges

Discussion in 'Sleep' started by soxfan, Oct 20, 2010.

  1. justy

    justy Senior Member

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    thats interesting that you mention Hashimotos. I have normal TSH and T4, but still have all the symptoms of hypothyroid. My doc wont test further so i have just bought a private testing kit for Hashimotos, im going to do the test on Monday and send it off. Results back in a few weeks.
    I hope the improvment with the snacks continues. My sleep has been improving steadily and this week i felt like i slept really deeply for a while. Have just started taking Selenium, so i dont know if it is related to that or just coincidence.
    Take care.
  2. soxfan

    soxfan Senior Member

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    I seem to sleep deep but wake up totally unrested. My husband says I don't even move at night..sometimes he thinks I am not there because I don't make a sound either. It is one of my worse problems. If I could at least wake up like I have slept well then that would help me so much throughout the day. I feel as though I don't have a chance when I wake up so tired.
    I am going to have to change my sleeping meds and see if I can feel better...

    My TSH is crazy so they are thinking Hashi's now. They are going to test for antibodies I believe. I am having some chronic symptoms now even though I am on medication.
  3. dannybex

    dannybex Senior Member

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    Welcome to the wonderful world of ME/CFS. Unrefreshed sleep is unfortunately one of the hallmark symptoms.

    From the Canadian Criteria Definition:

    "Sleep Dysfunction: There is unrefreshed sleep or sleep quantity or rhythm disturbances such as reversed or chaotic diurnal sleep rhythms."
  4. rlc

    rlc Senior Member

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    hi soxfan when you say your on a cortef taper i take in you mean your slowly lowering your cortef doses, what your experiancing may be withdrawl symptoms asociated with lowering your cortef. it is a well known that withrawl fron hydrocortisone can cause alot of bad side affects like insomnia, anxiety, restlessness. heres a link about it http://doublecheckmd.com/EffectsDetail.do?dname=hydrocortisone&sid=12177&eid=1732 hope this helps and deffinatly get a new endo after all it is their job to diagnose and fix your thyroid and if you have such strange TSH resualts they should be able to work it out for you.
  5. soxfan

    soxfan Senior Member

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    yes i am slowly tapering off my cortef. i am down to 2.5mg and have been on this dose for 2 months. i started at 15mg and and have been tapering for 10 months now. the endo told me it would take 2 years but then she started cutting me down quicker. i had been on cortef for 4 years and this was one of the most difficult things i have done. thanks for the link about the symptoms. my doctor never really mentioned how i would feel..she just said it would be unpleasant.
    i am seeing a new endo in 3 weeks. i definately stayed with the present one way too long.....

    i have read unrefreshed sleep is a symptom of CFS so i shouldn't be surprised that is is one of my worse. i still think if i can get a deeper sleep than i am getting with lunesta then it would make a huge difference. luckily i don't have it all the time but about 80 percent i wake up unrefreshed.
  6. rlc

    rlc Senior Member

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    glad to help, definitly to talk to endo about the cortef, maybe you shouldn't be coming of it so quickly! endos should know all about it hydrocortisone withdraw is famous for having serious effects on the endochrine system best of luck hope it gets sorted soon!
  7. soxfan

    soxfan Senior Member

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    maybe my new endo will be more helpful..i can only hope. thanks...
  8. rlc

    rlc Senior Member

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    hope you get a good one, Make sure you know your rights as a patient and don't let them muck you around, all the best hopefully its just the Cortef causing these problems and it will be over soon best of luck
  9. knackers323

    knackers323 Senior Member

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    I dont get woken up by it but I always have a fluttering feeling in my chest like adrenalin is flowing or something that I cannot shut down. it has been suggested that it is anxiety but I dont feel anxious. I feel there is definatly a brain/nervous system component to this illnes
  10. rlc

    rlc Senior Member

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    hi justy selenium is related to thyroid function read this http://thyroid.about.com/library/weekly/aa072000a.htm every one who is taking selenium needs to be aware that selenium can be highly toxic if they take to much. i advise extream caution and proper reserch on dosages before taking it, link http://aids.emedtv.com/selenium/selenium-side-effects.html you say you have normal TSH i dont know if you are aware of this but there's is alot of research that says that the referance ranges are wrong and the the upper limit for TSH should be as low as 2.5 link about it here http://thyroid.about.com/od/gettestedanddiagnosed/a/tshtestwars.htm other tests that i know of for thyroid apart fom TSH, T4 are T3, reverse T3, thyroid antibodies (antithyroglobulin and antiperoxide) TRAB (thyroid receptor anti bodies) ultra sound, iodine and homocystine and cortisol should also be measured if you are concerned that it is your thyroid causing your problems i would suggest if you can, you find a good endochrinologist who can sort it out for you. hope this helps best of luck
  11. soxfan

    soxfan Senior Member

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    knackers- i have that fluttering feeling too...i usually have that one during the day though and the other at night. i can't shut it down either. I always tell my husband it feels as though my body has been re wired inside and the wires are all in the wrong plugs...mine is not anxiety either.
  12. Tulip

    Tulip Guest

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    Have you had your heart checked out with a 24hr holter monitor??. I get svt - supraventricular tachycardia and it feels like what you are describing. Full on adrenaline rush and it feels very very uncomfy. Most of the time I don't not feel my heart racing, I just feel the adrenaline kick in through my whole body.
  13. richvank

    richvank Senior Member

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    Hi, soxfan.

    Here's what I suggest is going on:

    Normally the period of sleeping is the longest time a person goes without eating during a 24-hour day. This presents a challenge to the pancreas, adrenals and liver to maintain the blood glucose level in the normal range. This is particularly important for the brain, which relies on glucose as its primary fuel.

    Normally, when there is no longer carbohydrate being absorbed by the gut into the blood, because it has been a long time since eating, the pancreas secretes glucagon, which causes the liver to break down glycogen, which is stored in the liver, to supply glucose to the blood. This is called glycogenolysis. When this supply runs out, the next resort is to start breaking down protein, primarily from the muscles, to make glucose in the liver. This is called glucogenesis. The cortisol from the adrenals normally rises as necessary to do this. If this occurs, it tends to wake people up early in the morning, because it shuts down melatonin production. In your case, it sounds as though you have the additional problem of low cortisol production, especially as you taper down on the Cortef supplementation. The back-up to cortisol in maintaining the blood sugar level is adrenaline secretion. This is the last resort, and it can cause a panic attack, but it does bring up the glucose level to protect the brain.

    In the long run, it is necessary to restore the adrenal (actually the HPA axis) function to correct this problem, which should occur as one result of the methylation treatment.

    However, in the meantime, it is sometimes possible to get relief by eating protein before bedtime, as has been suggested. In CFS, this might be the best temporary option, because the Krebs cycle can use amino acids as fuel, so there is less likely to be a weight gain with this option.

    Another tactic that has been used is to eat starch at bedtime, as you have been doing with the bread. Some people have used cornstarch. The way this works is that starch is broken down into glucose in the gut, but it takes some time for starch to be completely broken down, because the amylase enzyme that does this can only attack the starch molecule at the end of its chain. So it takes it apart one glucose molecule at a time. The idea here is that the gut can then be supplying glucose to the blood for a longer time during the night. This has been used for children who have diabetes, to hold up their glucose during the night, and it has been helpful in some cases. It might cause weight gain in CFS, though, because the Krebs cycle is partially blocked and is not able to burn glucose as well as normal (because of glutathione depletion in CFS and the resulting rise in oxidizing free radicals, which block the aconitase enzyme). The excess is converted to stored fat.

    I hope this is helpful.

    Best regards,

    Rich
  14. slayadragon

    slayadragon Senior Member

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    twitpic.com/photos/SlayaDragon
    This "waking up in the middle of the night thing" only happens to me when I'm in a not-great place re biotoxins, as I am now. As winter approaches and the air becomes more problematic, this happens more and more. I've been waking up wired every night at about 1 a.m., eventually (after eating something) get back to sleep, and then am fried in the morning.

    Erik always has used the quality of his sleep as the key judge of whether he's in a good place. I recently encountered another mold avoider (inspired by Erik in 2003 but out of contact with us until recently) who said the same thing.

    Does this fit into the explanation being posited here? How so?

    I wonder about the melatonin too. That's one of the very few supplements that has any literature suggesting that it can relieve oxidative stress, though I think a pretty hefty dose is needed for that benefit. Would taking a lot of it (Pure Encapsulations makes a 20 mg capsule) be helpful in general for the problem we're discussing here?

    Thanks.

    Best, Lisa
  15. justy

    justy Senior Member

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    Hi rlc, thanks for the selenium info. I was advised to take it by Dr.Myhill after some testing. This is the pertinent test result:Red cell glutathione peroxidase (GSH-PX) - 53U/gHb (67 90) very poor result

    She then advises this re selenium; "For this really poor GSH-PX result I would add in extra selenium, say another 300mcgms at night for four months (total daily dose 500mcgms) to bring Se levels up, then reduce to a maintenance dose of 200mcgms."

    I have Selenium drops - 100mcg per drop and to be honest i am a bit wary of them, so am taking 300mcg for a short while and then reducing. I have defiantely been feeling better since taking the Selenium - my sleep is much deeper and i feel less toxic in general. Will be starting Glutathione shortly as well.

    As for finding an Endo - im afraid i live in the UK and it doesnt work like that here, cant even get my GP to run anymore tests. Infact if you have M.E they are not allowed to encourage you to believe you have a real illness.
  16. Wayne

    Wayne Senior Member

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    Sleep - Cortef

    Hi Soxfan,

    I've taken Cortef for over 10 years now (20-25 mg/day), and do very well with it. One thing I do, (that may or may not be relevant to your situation), is that I often take 5 mg. when I wake up about 4 am in the morning.

    My sleep is generally fairly good (but broken) up to that point, but around 4 am, my whole system begins to feel stressed, with an accompanying feeling that it will be difficult to fall back to sleep. I've discovered that taking 5 mg of Cortef at this time usually significantly eases this stress, which then allows me to get some of my best sleep for the next 2-3 hours.

    I see some have made some comments about Cortef that make it sound like it's pretty certain you should continue to taper off it. I might just suggest you withhold a final judgment/decision on this until you've had a chance to visit with your new endo.

    I personally believe I need Cortef supplementation because my HPA is disrupted, not because I have adrenal weakness (I could be wrong). Until I feel I've gotten my HPA cycle corrected/rebalanced, I feel it's in my best interests to keep up with my Cortef supplementation. Being an eternal optimist, I still believe this is possible, even after all these years of low-dose Cortef supplementation.

    I do believe however, that this whole area of low-dose hydrocortisone (Cortef) supplementation is a VERY individual thing. I wish you the best with your new endo, and in determining what your next best course of action will be.

    Wayne
  17. rlc

    rlc Senior Member

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    Hi justy i live in new zealand we also have an appaling health system, it is stunningly illlogical that they can say that M.E dosen' exist, therefore your problems must be caused by something else, and not investigate it! hope everything works out well for you, best of luck
  18. soxfan

    soxfan Senior Member

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    Rich- thank you for that wonderful detailed explaination. i kind of thought that was the problem and when you awake at night with your body feeling like that it is kind of terrifying. i know my body is really out of whack with my thyroid problems and with the cortef taper.i am just going to eat a little before bed and hope it doesn't happen again. thanks again for making it easy to understand the strange things that are happening with my body. i am going to email you...

    Kim

    I have never had a holter monitor basically because i have never been treated for CFS i was seeing a doctor who treats CFS but he thought I had Lyme so he treated me for that. I am going back to him in a week and start over so maybe then I can get some of this testing done. I have much different symptoms now than when I was being treated for Lyme. I have really only been on abx and supplements since becoming sick. He is the doctor that was treating my adrenal insufficiency. Now the endo says i don't have insufficiency because my level was 12 at 8am so she is tapering me off. she doesn't believe in saliva testing so i have only done the blood cortisol. I really don't know if I need the cortef or not but I do have symptoms from the taper...I haven't met an endo yet who believes in the saliva testing like my other doctor did.
  19. rlc

    rlc Senior Member

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    hi soxfan i'm in new zealand they use nmol/L to measure cortisol i suspect when you say your cortisol was 12 it was mesured in mcg/dl if that's the case your doctor is a moron! above 19 rules out adrenal insufficiency read this http://www.suite101.com/content/adrenalinsufficiency-a1543 it also states that if there is any doubt a ACTH stimulation test should be done. all you need to know about this test is here http://www.acthstimulationtest.com/ . you might want to take these articles to your new endo incase they also don't know what their doing. i think it is very likely that all your problems are caused by your last doctor. e.g not treating your thyroid properly, cortef withdrawl, possibly undiagnosed adrenal insufficiency, i would advise strong caution before trying any other treatments before you get your new endo to sort this out properly. it sounds like it is a complicated enough picture without trowing anything else in the mix, hope this helps all the best
  20. justy

    justy Senior Member

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    Hi Soxfan, i have also had problems with my adrenal function, but i think mine was brought on by too much steroids, that where used to treat my lung problems. The doctor forgot to tell me to reduce, so i was on a high dose for a few years! Since i started reducing my dose ,my symptoms have actually improved. This is a bit weeird as most M.E people do better with steroids, however nmine where destroying my immune system. Now i am down to an inhaled maintenance dose things are a bit improved. I figured that doing things as naturally as possible was foir me the best option to get my system balanced again. So i have used diet, rest, and supplements to try to restore the function of the HPA axis.

    I actually at one point had to print of information for my GP about HPA axis disturbance caused by long term steroind usage. He didnt seem to believe me - so i tapered my self- within a week my night sweats had disapeared and i am no longer considered to be early menopausal. My Gp was pretty shocked to see what a good effect this had had on me.

    Sorry im rambling now, abit off the point. I hope it all goes well for you.

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