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. bretzie

    bretzie Member

    Hi all,

    I'm so depressed, bursting into tears lately. Can't sleep at night and it's shredding my nerves and life. Can't sleep before 9AM, can't wake til about 5PM. I feel so guilty as I need to get my cat's teeth cleaned, go to the dentist, doctor, on and on. I feel trapped. Too many years of this is breaking me down.

    Now I can't even push the going to sleep time ahead as I used to. With that I'd wake up later and later until I was finally falling asleep at night. Never lasted though.

    Some say Zoloft is responsible, but I need Zoloft as it keeps me from being severely depressed.

    Severe weakness makes it hard for me to take many strong sleep meds ... AdvilPM was AWFUL. Even trying a small amount (.75mg) of Melatonin made me horribly weak and drugged the entire next day.

    I have an Rx for Klonopin from my doctor and I'll start out with a tiny dose. I've tried: Magnesium, Advil. Will try 5HTP (heard it can give reverse effect), GABA. Others talk about Lemon Balm (what quantity never heard), Inositol (again don't know how much).

    ANYONE have any suggestions ... please give dosage amount of whatever you find works for you. Great detail appreciated. Sigh.:(
  2. Nanie46

    Nanie46 Moderator

    Hi bretzie,

    You may have Adrenal Fatigue. Many people with chronic illness and chronic stress develop this. One's cortisol level is high at night instead of in the morning.

    The LLMD who treated me for chronic lyme disease told me to take DHEA in the morning. It is over the counter, but it is important for a Dr to test your levels and guide the treatment.

    I also had testing of all my hormone levels and use bioidentical hormones, which have helped a lot. About 2 weeks after starting DHEA and bioidentical hormones, I started to sleep better at night. It steadily improved.

    There are also other supplements that support the adrenals, such as Ashwagandha.

    I take a supp called Cytozyme AD too.

    It is important to reduce stress in one's life as much as possible to help adrenal fatigue also.

    You can Google "Adrenal Fatigue" and read more about it.

    Often, chronic illness creates a domino effect of dysfunction among our body's systems. It is usually not just a simple fix since one thing has affected another and another....

    A Functional Medicine Dr or Integrative Medicine Dr may be more knowledgeable about Adrenal Fatigue and other issues you may have, than conventional medicine doctors who tend to just medicate for symptoms instead of addressing the root cause.
  3. mbofov

    mbofov Active Member

    I'm one of the ones who suggested Zoloft might be responsible for your severe sleep problems. I still think it may be true - there are other ways of sorting out depression - omega 3s, 5htp, SAMe, and so on.

    You have to be careful if you take 5-htp at the same time as Zoloft. 5-htp helps your brain produce serotonin, so it will cause serotonin levels to rise. Zoloft messes with your brain chemistry (which causes all the side effects), and in effect causes it to re-use serotonin. Anyways, the combination of both 5-htp and Zoloft may cause serotonin syndrome - too much serotonin - which can be dangerous. I had a friend who was on Lexapro and got off of it and started 5-htp and felt much better.

    But - Nanie46 has some very good suggestions. Your cortisol levels may be way off - e.g., if your cortisol is high at night when it should be lower, this can cause severe insomnia. That happened to me. Seriphos (phosphorylated serine - non-prescription) normalized my cortisol levels and my sleep improved almost immediately.

    She also recommended a functional medicine or integrative medicine MD, which is an excellent idea - I have yet to find a single "regular" MD who knows anything about CFS or nutrition or adrenal health and so on.

    Also l-theanine (amino acid which helps the brain produce GABA) helps me with sleep, together with niacin, which stimulates the GABA receptors in the brain/.

    But if you have high cortisol, you should get that sorted out first. The best test is the Adrenal Stress Index Test, a saliva test which measures cortisol levels 4 times during the day/evening. Most MDs just do a blood test which only shows cortisol level at the time the blood is drawn so you have no way of knowing what your levels may be later in the day or evening, which is crucial information. And again, a functional medicine or integrative medicine MD will be the one most likely to prescribe this test.

    You can check out acam.org, a website for IM doctors, to try to find someone in your area.

    Mary
  4. kbak

    kbak Member

    Hi Mary,
    I'm sure everyone can relate. Besides pain, I think the inability to sleep is the worst part of this. It has taken me years, literally, to find something that works for me. The trouble is, what works for me may not work for you. Of course medication can play a big part in not being able to sleep.

    I've dumped most of the meds that I felt were keeping me from sleeping. I do take tramadol and soma at night. I found soma was the only muscle relaxer that actually worked for me after trying them all.

    I was taking melatonin without to much success until someone from another board suggested two different brands that worked way better. One is Douglas labs melatonin 3mg. and the other is Superior Source melatonin Micro Lingual.

    Before bed I take my pain med, my soma, a GABA, a 500mg. magnesium and 1 Douglas labs melatonin. I read for a little bit and then take 1 micro lingual melatonin, which I keep at my bed side. Another half hour or so I can fall asleep. When I wake up in the middle of the night I take another pain med & soma and another micro lingual melatonin ( which can be a 3 or mg tab) and fall back to sleep.

    If I'm having a bad night I will take a micro lingual as often as I need it, be it 3-4 or 5 times a night. That will usually work to get me some sort of sleep. I found I'm a person who needs more melatonin not less. Others do very well with less. That micro lingual is very effective, but not with meds that disturb sleep.

    It's very possible that your severe depression is caused by your lack of sleep. It will probably take you a while to find the right combo of things to help. I truly hope you find something to help.

    kbak
  5. lisaw123

    lisaw123 Member

    I am not sure why there are already responses here in my reply box. Anyhow, first, do not mix zoloft with 5 htp without a doctor's supervision! You can end up overdosing on serotonin if you are not careful. Second, there are other SSRIs you can try besides zoloft if it is not helping enough with your depression (lexapro, celexa, etc.)

    What helps me with sleep: food. Ex: nighttime snack and plenty of good food during the day. Daytime de-stressing: relaxed thinking, warm bath before bed, etc.
    Hormone help- my sleep is at its worst when my sex hormones are unbalanced (oestrogen, progesterone). Talk to your ob-gyn.
    Supplements: I like glandulars- for my hypothalamus, bulbinum, etc...and the spice curcumin...and neurotrophin to help me tolerate other meds (only when needed). Talk to your doc to see if any of these ideas might help you, I am not a doc. Take care, hugs xx.





  6. bretzie

    bretzie Member

    Hi Nanie,

    Agree, probably adrenal fatigue and/or thyroid. I take 60mg Armour, but need to be tested. Want to get saliva tests for Adrenal and DHEA ... would test more but have to pay out of pocket (only have Medicare, low income).

    I have a CFS MD who doesn't think adrenal involvement is major in CFS. OMG!!! But he's good on many things and takes Medicare (crucial to me). Need to get to him for some blood tests.

    I plan on going to a very good kinesiologist as soon as I can wake earlier than 3PM (ugh). It's a bit far too (1 hour), but he's supposed to be excellent and is inexpensive. He's helped a lot of people. He's also inexpensive. Would love to find an alternative MD in Manhattan who takes Medicare or has low rates (highly unlikely).

    I'm going to give Ashwaganda a try. Never heard of Cytozyme AD, will look it up. Currently taking Adrenal Support by Vitacost. As for stress, oh yeah, try to limit it but ... being sick with no money and no family or good friends closeby is definitely stressful. I'm trying to meditate and catch my stress thoughts so I can ratchet down the stress.

    Thanks so much
    bretzie
    Nanie46 likes this.
  7. bretzie

    bretzie Member

    Hi Mary,

    Yes I remember your post. I simply can't risk a revisit to severe clinical depressiion (has happened way too may times) by shifting off Zoloft and trying to find something else that works. I'm sorry but it's just not an option. I've tried a myriad of natural things and got worse and worse, tried other anti-d's, didn't work. So I'm staying with the Zoloft and working around it. L-Theanine does zip for helping my sleep.

    Thanks for the advice re not taking 5HTP with Zoloft.

    As I replied to Nanie, yes I'm sure my adrenals are wacked. Have to get a saliva test for adrenals and DHEA. My CFIDS MD is not a big believer (amazingly!) in adrenal involvement and coritsol. Yipes. But he is helpful in some other ways. Got to get to him as soon as I can wake earlier than 3PM.

    Also plan on going to a wonderful kinesiologist who's inexpensive (crucial to me) as soon as I wake earlier. He's a bit of a distance away, but I'll manage it somehow. Wish he was an MD, but he's not.

    Re an alternative MD, as I said to Nanie, it's very very very hard to find one in Manhattan where I live who a) accepts Medicare and/or b) is inexpensive. But I will check acam.org and see if such an alternative doc exists.

    Glad you got help for adrenal issues I'll make a note of what you're taking.

    Thanks very much
    bretzie
  8. mbofov

    mbofov Active Member

    I know it's very difficult to find an alternative MD who either takes Medicare or is inexpensive - it's like we are in a 3-legged race with only 1 leg (or something like that! with so many things against us). I'm on SSDI and limited income too. In general I have had to travel to find any doctor who knows anything about CFS etc. and also one who takes Medicare. There's no one close to where I live, so the drive always wipes me out and that seems to be the cost of doing business as CFS patient. Anyhow -

    For what it's worth, l-theanine on its own did not do a lot for me, but when I added in niacin, it became more effective. I had taken niainamide with no results. And then happened to read about niacin activating the GABA receptors - GABA is our natural brain tranquilizer - and was amazed, I started sleeping better as soon as I added in the niacin together with the l-theanine. I also started sleeping better using Natrol sublingual melatonin - 3 mg., dissolves very quickly.

    The Seriphos was a godsend when I needed it for high cortisol and resulting insomnia and I found I had to get my high night time cortisol levels under control before anything else would help with sleep.

    I have been helped so much by my kinesiologist - I hope yours helps you as well!

    Mary
  9. mbofov

    mbofov Active Member

    One more thing I just remembered - I first got help for high cortisol back in 2003, from Clymer Healing center - you can google them. I'm in California, they're in Pennsylvania, and we did everything by phone and e-mail and snail mail. They're the first ones who did the Adrenal Stress Index saliva test for me and found my high night-time cortisol levels and got me started on Seriphos. A few years later I had a second test done by a naturopath.

    One caveat - Clymer told me to take the Seriphos at night. Well, that didn't work out at all - it made me feel horrible when taken in the evening - and I did my own research and found that it was best when taken in the morning. It did not make me tired during the day, I just felt calmer and started sleeping better. It was trial and error getting the initial dose correct, found I had to start with 8 capsules (4 capsules before breakfast on an empty stomach and 4 capsules mid-morning) - a rather high dose but I needed it and then eventually cut back.

    I had to pay cash for the test and phone consultation, of course, but it was worth it. At the time the test itself was around $95, and the phone consultation etc. was less than that. I don't know what they charge now but it's definitely worth checking out. You can just call them to find out how much they charge. I had the lab work done by mail and it worked out fine.

    Best of luck -

    Mary
  10. LadyCarol

    LadyCarol Member

    Zoloft can cause insomnia and paradoxically cause depression. I use to suffer as you did when I was on Zoloft, I came off it. I tried various sleep medications which helped me sleep but I discovered they contributed to causing severe depression, I stopped taking them. Eventually I found taking Melatonin 4 mg prolonged release and 2 mg Diazepam about 10 minutes prior to going to bed helped me to sleep quickly and gave me a good night's sleep and the depression disappeared. I wake up a bit sleepy which is how I use to wake up in days gone by when I used to sleep well, normal sleep waking in other words. My body clock corrected itself so I now go to bed normal time and get up between 7 am to 8 am in the morning. I started to notice I had more energy and felt significantly better during the day. I couldn't mix Melatonin with any anti-depressant, they clashed.

    In addition I take a daily vitamin and mineral supplement (100% RDA each vitamin, less so the minerals), around 6000 IU vitamin D3, 100o mg Fish Oil (330 mg EPA 220 mg DHA), 1000 mg Starflower Oil, 125 mg Pine Bark Extract, 10 mg Lutein, and 400 mg calcium + 150 mg Magnesium with breakfast, and with my late afternoon meal around 5.45 pm I take 100o mg Fish Oil (330 mg EPA 220 mg DHA), 1000 mg Starflower Oil, Grape Seed Extract, 10 mg Lutein, Iron 14 mg, and 400 mg calcium + 150 mg Magnesium, each supplement is mixed with a mouthful of food to help disburse throughout the stomach, that's my last meal of the day, no drinks either unless I actually feel thirsty.

    In addition you need to get full thyroid function blood tests, TSH, free T4 and free T3. If your thyroid T4 and/or T3 are a little too high (for you) then your sleep will negatively be affected, too low can cause depression and tiredness.
  11. tamsyn

    tamsyn Member

    Insomnia is truly a nightmare and makes everything else -- depression, brain fog, CNS symptoms, pain -- much worse and much harder to manage. I've had ME/CFS for about 14 years and struggled with insomnia for years and kept asking my doc for help but she just told me I was probably getting more sleep than I thought I was (?!!) I finally politely insisted she send me to a sleep clinic...have you tried this? The clinic report showed I only slept twice, for 40 minutes each time, in seven hours. Yikes...the good news was that having this written report made my doc take my insomnia seriously. She prescribed a sleeping pill (Imovane 7.mg.) Have you tried this simple and direct solution? Prior to this, I too had done all the cortisol testing, hormone testing, and tried very nutritional supplement and herbal remedy under the sun -- useless for me. Melatonin made me so wired I was awake non-stop. Klonapin, that you mention, is considered highly addictive. Newer sleeping pills are not as addictive. I have no side effects from mine and I sleep most nights for seven hours. Yippee, what a luxury! I also take Gabapentin low dose (300 mg qhs) and this seems to reinforce the action of the sleeping pill.

    My advice to you, is to get a sleep study done, and see if your doctor would prescribe a sleeping pill. Once you are less stressed and exhausted from sleep deprivation, you can put energy into all those hormone tests etc and experiment with supplements. You might also find bed-time meditation helpful; I used Jon Kabat Zinn's body scan CD (from his web site) for 45 minutes every bedtime for about three years. Meanwhile, you must sleep, so see if you can find a sleeping pill that works! Good luck!
  12. LadyCarol

    LadyCarol Member

    Imovane (Zopiclone) initially knocked me out but then I started to notice it caused depression and agitation after just 2 doses. I've tried repeating its use a few times, it knocks me out but quickly causes depression and agitation, so goodbye Imovane.

    It just goes to show, what works for one person may or may not work for someone else.
  13. Just wanted to give you some support, because I have also had severe insomnia for many years. There were some years where I would only sleep a couple of hours a night. Now I'm a little better, but I can easily have some very bad nights and most nights I don't get to sleep until very late, and I hate trying to sleep somewhere new. I take xanax at night, but hope to get off of that some day. I also have been trying melatonin, but like you, it does something to my neurological system and leaves me incredibly weak, so I don't really want to keep taking it. It sounds sort of alternative-y, but I think I'm going to try using EFT tapping methods and see if it helps me reprogram my brain to sleep better. I have to try something, and doctors don't really seem to be able to help. If you're feeling really overwhelmed and depressed, it becomes a vicious cycle because depression causes insomnia, causes depression. See if you can find some CBT techniques that may help with your depression, and maybe EFT if you're open to it, and so forth. I did CBT a few years ago and I do sleep better now than I did before. I also meditate and do visualizations. Just by trial and error see what helps to get the emotional side feeling a bit better, and that may help calm your brain so you can sleep better. Even if you feel calm at night, you may have an active amygdala due to subconscious activity.
  14. bretzie

    bretzie Member

    Hi Mary,

    Thank you for all your great answers. I wanted to do phone consults with the Clymer Center but you must have gone years ago. As of 2012, they charge $450 for the initial phone consult. Then each subsequent consult by phone is about $250. They don't care how hard people are having it. I begged for some discount, but no deal. I live on just SS and food stamps, so they're out of the question.

    I'm hoping to get help from the kinesiologist as soon as I can carve a chink in my day sleep.

    denise
  15. bretzie

    bretzie Member

    There is NO way I can just go off Zoloft. It took me a hospitalization and years of trying other anti-d's before my severe and most hideous clinical depression lifted. Zoloft was the only one that worked. My God you take a boat load of stuff. Thanks for the details. I know I need to get full thyroid testing including reverse T3/T4.

    I envy your ability to go off Zoloft and not to have recurring depression, just wonderful. Unfortunately, I started on Nardil years ago, it worked well but unwisely (I see now) I asked my shrink if (since I was feeling better) I could taper off Nardil. Well, that led to a severe crash, so bad that I had to hospitalize myself. Other anti-depressants (Wellbutrin, Prozac, on and on) didn't help. Until Zoloft it was hell on earth.

    I'm very upset that it's either night sleep or Zoloft. There must be a solution. Can't believe everyone on Zoloft can't sleep at night.

    Sigh.
  16. bretzie

    bretzie Member


    I'm very distraught over the inability to sleep AT NIGHT. But believe me I had depression since I was very young and I SLEPT VERY WELL AT NIGHT until I started menopause and/or Zoloft. But what the heck am I do????? Risk a suicidal depression (AGAIN) by getting off the only anti-d that helped me? I really feel people don't understand fully what this means. I have tried all the natural mood/seratonin enhancers in the world.

    I'm getting very upset at thinking it's Zoloft or Sleep. I wish someone would know something to help me while ON Zoloft. There is no trade off between extreme, life threatening depression and not sleeping at night. I feel very trapped. And the answers while well meaning, have really been upsetting as so many are saying it is the Zoloft. Of course, you have to speak the truth, but now I feel truly hopeless. Why is life such a hell for some of us with no reprieves?

    Very despondent over this.
    bretzie
  17. bretzie

    bretzie Member

    Thank you for the support. It's beyond my simple brain. A real nightmare. Let's see my stress may be triggering my inability to sleep at night, but my inability to sleep at night is stressful, AAAARGH. I've used lorezepam (Ativan) before sleep but it only relaxes me doesn't get me to night time sleep. Xanax is similar.

    EFT sounds interesting. I may look into that re night time sleep. At this point I'm sleeping earlier in the AM .. 6AM yesterday AM vs. 9AM days before. I want to cry and do cry a lot.

    CBT did ZIP for my depression. I've talked with many many psychiatrists and I believe my tendency toward severe clinical depression is genetic and also related to upbringing. I try CBT to alleviate panic attacks and anxiety, but it's almost too much to have all this STUFF to do AND have CFIDS. Sometimes I just want to give up, but I can't live like this with my whole day gone ... must get to the vet with my cat, get to an MD, etc.

    I even got the Ashok Gupta tapes to see if that would help the CFIDS but it is so complicated and stressful, I had to stop.

    I know you all mean well. And I thank you for that.

    Sigh and double sigh
    how not to stress when you have no night sleep, things to do during the day and need to take Zoloft???
    bretzie
  18. honestly hun, what makes me sleep is sex
  19. mbofov

    mbofov Active Member

    Bretzie - I'm so sorry to hear that - that's crazy, wayyyy too expensive! They were affordable way back in 2003. I think the man who founded the center died some time later and maybe the successors just decided go for the money. If someone had $450 for an initial appt, they could go see almost any doctor of their choice, and not a phone consult with some anonymous person. And the $250 follow-up is amazingly ridiculous as well. arggh!

    Mary
    bretzie likes this.
  20. TigerLilea

    TigerLilea Member

    @bretzie , would your doctor be open to you trying Progesterone cream? It's very common for women in their menopausal years to have sleep issues and Progesterone is known as the sleep hormone. :)