Very upset over years of not being able to sleep at NIGHT! Anyone solve this?

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by bretzie, Jul 17, 2014.

  1. IanH

    IanH Active Member

    10mg Amitryptiline with 2mg melatonin SR. (NOTE melatonin SR and melatonin have very different effects and side effects. You should not take melatonin! It has a very short life and the sudden drop in level during the night is not conducive to better sleep).
    You could add oxytocin 20IU nasal spray

    Or if the melatonin SR is a problem then substitute with the oxytocin.

    All before bed

    Works very well for most people. Talk to your doctor about this combination. Your doctor must consider the interactions between this combination and the certraline you already take.
    Last edited: Aug 1, 2014
  2. bretzie

    bretzie Member

    Hi kbak

    Thank you so much for your response. I'm way behind on everything. With CFIDS, I can do one thing a day and that's about it, ugh.

    I want to respond to everyone tomorrow or Monday. I'm copying everyone's great responses and I'm SO SO grateful for your kindness and generosity in taking the time to comment.

    Update: On August 30th, I started taking 2 drops of Melatonin with water before bed. On waking, I take 15mg of DHEA. I'm going ASAP to my CFIDS MD for saliva tests on Melatonin, DHEA, Cortisol, etc.

    Small progress -- sleep's occurring a bit earlier, 630AM vs. 9AM and I'm waking up earlier too, 230PM vs. 5PM. I'm thrilled with this. So far the little bit of Melatonin has not interacted (as far as I can see) with the Zoloft.

    You guys give me the courage to TRY things. And I have to say I DO feel somewhat better overall.

    Hugs :)
  3. munch1958

    munch1958 Member

    As soon as I got on growth hormone, I was finally able to sleep a very deep sleep. I had not been able to sleep since second grade. I tried all the band-aids like ADs, melatonin, anti-histimines, sleep meds, etc. The marker for a deficiency in growth hormone is a low IGF-1. I had to take a stim test and my endo has to write the prescription but my insurance does cover it.
  4. bretzie

    bretzie Member

    That's great!! I'm keeping a record of all the wise things you people are saying. OK so low IGF -1 is an indication for growth hormone. I don't have an endocrinologist and I doubt Medicare would pay for growth hormone. But can put on the list of things to check. Thanks!!!
  5. bretzie

    bretzie Member

    Hi Nanie,

    OMG, my brain is totally gone. I already answered you. I'm so sorry. Just going to leave this though. A very belated THANK YOU for all your info and feedback. My brain's as tired as the rest of me. Having big crying jags lately. Fun Fun. I agree it's the whole system that''s wacked out. Wish I could get to a doctor who does bio-identical hormones as this CFS mess started around menopause. I'll bet I could benefit from hormones like estrogen, progesterone, testoserone, etc. These doctors are not in the Medicare system, so out of my league.

    I'm sure my adrenals are shot! DHEA sounds needed too. I started taking a 15mg of DHEA when I wake up (about 230PM) - til I can get to the Kinesiologist and have my saliva tests done or even to my CFIDS MD. Frustrated as everything helpful requires me to be UP during the day. I'll get there, just so damned slow.

    No money for a Functional Medical Doctor - only have Medicare which doesn't cover that except for a tiny tiny amount.

    But will be going to this welll regarded Kinesiologist soon. He has a very low fee. When I can be awake to do this. He's not nearby, about an hour away. Sorry to sound like excuses excuses excuses, but I'm very weak and so depressed. Exactly why I should force myself to get there ...

    Cytozme is that the same as Cytomel ... the other thyroid component when you're taking artificial thyroid med. I take Armour 90mg/day. Also need that tested as well.

    Thanks again
    Last edited: Aug 7, 2014
  6. Nanie46

    Nanie46 Moderator

    Hi bretzie,

    Cytozyme AD is a supplement for adrenal fatigue. It is Neonatal Adrenal Complex (bovine).
    I just went to a new Dr for my bioidentical hormones, thyroid and adrenal fatigue because my other Dr who was managing those things retired.

    I was lucky to find the new Dr who is a family practice Dr who is knowledgeable of bioidentical hormones, is attending ILADS conferences to learn more about tick-borne diseases and is testing her patients for Cpn. She is really looking for the root cause of her patient's problems, which doesn't always happen.

    I will be switching from Cytomel to Armour soon.
    I hope you can find a Dr to help you. Read as much as you can about those conditions and do as much as you can for yourself.
    Investigate family doctors too, since once in awhile, one may have training in bioidenticals.
    I looked on the A4M website for practitioners.
  7. bretzie

    bretzie Member

    Oh Nanie, I can't use any product that comes from a baby animal (neo natal - newborn). Yeah I use Armour and not happy to do that, but I do my best to avoid products from animals in general as I love them. Just me.

    I'll check that A4M site. Yes check out family doc's and enquire re bioidentical hormones being in their treatment bag.

    I can't read one more thing as I'm also plumb worn out. Also not sure what the problem is. I know I need to be tested for all the hormones.

    Wish I could afford private insurance, but can't, so will have to just keep on keeping on. My big hope is this kinesiologist who is raved about and so reasonable ($47/visit). I plan to get to him right after I get my cat to the vet for much needed toofie cleaning.

    So glad you have this wonderful new doc. Did you find her on the A4M site? She sounds just like a doctor SHOULD be ... looking for the causes not just shutting you up with bandaids. Good luck on this and everything.
  8. Nanie46

    Nanie46 Moderator

    Thanks bretzie!

    I knew about my new Dr from a friend, but I did note that she is on the A4M website also.

    You might want to investigate adrenal supplements that don't come from animals. There are bound to be some out there.

    I really hope that kinesiologist can help you. Blessings to you!
  9. jaminhealth

    jaminhealth Well-Known Member

    Just talking to some folks on the Iodine group I'm a member of.

    One person said her doc does not like to see her TSH as low as 1.8 and wants her to back off some Armour dosing....she takes 120mg now as do I.

    Some others piped in to say that docs just don't know how to work with Armour, it's been around forever, but most docs are Syn trained in medical schools now. It's the Synthroid synthetic push.

    Anyway the ones that feel the best keep there TSH very suppressed, like close to zero.. This is what the Stop The Thyroid Madness book is all about...we are NOT numbers and too too many docs are numb on thyroid and go by numbers....not how we feel.

    This person who is at 1.8 on TSH tells how great she feels and her doc wants her to take less......we're telling her no way....

    My TSH was .020 last year and I feel good except for all the other messy pain I deal with.....T3andT4 need to be at higher ends of the range.

    MOST of my pain is from the horrible hip surgery outcome.
  10. Nanie46

    Nanie46 Moderator

    I listened to 14 hours of lectures online in June during the Thyroid Summit. Those practitioners agreed that one's TSH should be around 0.1-1.0.

    I just saw a new Dr....actually I saw her CRNP, but she wants my TSH around 0.4 which I totally agreed with, since it was higher than that last time it was checked.

    The presenters said that the acceptable value set by the Endocrine Society that most doctors use, was based on the last 1000 tests and represents a group of sick people (those with thyroid disease or suspected thyroid disease), so therefore it doesn't make sense to use that value.
  11. LadyCarol

    LadyCarol Member

    It can be very difficult for some people to achieve a steady state TSH below 1.0 or even close to it. The risk of the person becoming Hyperthyroid becomes an ever increasing risk as TSH trends below 1.0. The problem is many with low thyroid have an autoimmune issue with their hypothalamic-pituitary-thyroid (HPT) axis which means it doesn't properly control thyroid levels in general. As a result if someone takes too much thyroid med/supplement the thyroid isn't able to respond accurately as in a person with HPT function. As such it is safer to air on the side of caution and ensure there is sufficient influence from the feedback loop that involves the HPT axis.

    Nanie, did the Thyroid summit discuss the link between too low a level of the combination of T4 and T3 (irrespective of TSH level) and active Hemolysis ?

    Hemolysis can lead to haemolytic anemia and that alone will make a person feel tired and exhausted, it can also be life threatening if not stopped.
  12. Nanie46

    Nanie46 Moderator

    Hi LadyCarol,

    No, that was not discussed in the 14 hours of the Thyroid Summit that I watched. There were 8 hours of presentations per day for 7 days. I only had time to watch 2 hours per day.

    They talked a lot about how to help your body convert T4 to T3, such as taking selenium.