The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Desperate for restorative sleep!

Discussion in 'Sleep' started by cbmtl, Mar 29, 2015.

  1. cbmtl

    cbmtl

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    I realize that without restorative sleep, my likelihood of a full or semi-functional recovery is unlikely. I believe that I have had symptoms (may be unrelated or sub-clinical) since birth, that have unknowingly effected my sleep quality for years. Ironically, I was actually hyper as a child, (though always felt cognitively sluggish) but grew progressively more physically fatigued over the years. And, as life demands increased, I became abundantly aware of just how comparatively tired I was, napping whenever I could, to function.

    FAST FORWARD: In the past 5 years, I have had a child, left the business world, started my own business and, unfortunately, deteriorated markedly health wise. I assume that the stress of it all turned on certain genes, which I'm really hopeful can somehow be re-expressed.

    CONDITION(S): I have seen MANY doctors/specialists, with MANY diagnoses, including celiac disease and hashimotos. The overarching theme, is that I have a multi-factorial, highly complex case. I suspect that whatever is going on, is rooted in a dysfunctional immune system and neurological anomalies.

    THERAPY: Unfortunately, my body and brain have not responded appropriately (or at all) to traditional prescribed therapies. I go on a gluten-free diet and my body/brain rebel. I take thyroid meds and feel like death. There are simply so many avenues to pursue. It's possible (I hope) that there is or are effective therapies for me that I may not have tried long enough or properly.

    RELEVANT TESTS: I have also had numerous QEEGs and sleep studies. The QEEGs demonstrated that my brain is in a constant sleep state and the sleep studies have not provided much of any help. I was diagnosed with VERY mild sleep apnea (c-pap did nothing), unexplained excessive limb movement, mild snoring, and no REM. Thoughts?

    SLEEP: I get, on average 7 - 9 hours nightly and, when possible, will take 1 to 2 naps daily. While sleep does little to help my functionality, the alternative is not possible. If I try to "power" through it, my body and brain deteriorate further. I'd also say that over the past 6-months, my sleep has grown increasingly fractured, waking up anywhere from 1 to 5 times a night. Interestingly, I noticed more recently, that I seem to be waking mid-dreams...maybe something to do with poor REM.

    WAKING: It's an odd feeling to describe. I used to feel like I had been run over by a truck upon awaking. Very fortunately, that is no longer the case; not sure if I'm making progress or it's due to an improved/changed home life. Anyhow, when I first wake-up, I feel like my brain and body are in shock. I feel very wired, exhausted, disoriented, weak, shaky, occasionally sore, often needing to go to the bathroom, slight headache and stomach ache, and finally, I notice that my jaw is quite rigid (TMJ) and that my hands are clenched. Clearly, my body and brain are trying to defend themselves from something, while I sleep.

    NOTE: I often exhibit involuntary movement, just before falling asleep. Also, for the past few years, I often wake up with numb arms/hands. I also experience an odd feeling in my legs before falling asleep, like they're slightly paralyzed and/or lacking circulation; not sure what to make of it all.

    MEDS: The only therapy that has increased my functionality is not what I would consider to be the long-term solution. I have to take a benzo at night and prescribed stimulants during the day, just to stay awake. And, while I am physically upright, it's artificial and doesn't come without mild to profound brain fog and feared long-term consequences; i.e, there are a few cases of alzheimer's and parkinson's disease in my family and benzos/stimulants do not help in that category.

    I'm very interested to hear other's thoughts/suggestions.
     
    August59 likes this.
  2. A zombie

    A zombie

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    have you tested for lyme via igenex. Don't waste your time or money on lab corp or quest. I wouldn't be surprised if you had lyme.
     
  3. sarah darwins

    sarah darwins I told you I was ill

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    Do you have a clear celiac diagnosis? If so, I would think you have to find a way to cut gluten out, maybe through a gradual tapering if a sudden stop is too much for your system to handle.

    I'm not celiac (at least, negative antibody test) but I get very unwell if I eat even a tiny amount of gluten. When I went gluten-free about 6 years back I had a major upturn in my overall health, and that included in a huge improvement in sleep quality. If you are diagnosed celiac, as you seem to suggest, gluten carries some serious long-term risks for you. That would seem like a fairly urgent thing to get sorted out.
     
  4. perchance dreamer

    perchance dreamer Senior Member

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    @cbmtl, I really feel for you. I had insanely bad insomnia and horrid sleep quality for years, but if I can get better, anyone can.

    Since benzos have a terrible effect on sleep quality, I'd consider working with a doctor to taper off using the protocols from this web site:

    http://www.benzo.org.uk/

    I've had QEEGs, also, and have recently started LORETA neurofeedback training. My biofeedback therapist said she has a client having a really hard time getting off a benzo, and she suggested he try the Alpha-Stim at home in addition to what they are doing in the clinic.

    I use an Alpha-Stim, and it helps me a lot for sleep. Are you familiar with it? It's cranial electrical stimulation from a small device with earclips. It's useful for sleep, anxiety, and depression.

    It's something you have to experiment with and find the time of day, duration, and whether eyes open or eyes closed is best for you. My recent QEEG shows vast improvement from last year's test with my eyes open, but my brain still gets extremely active with my eyes closed instead of downshifting as it's supposed to. So my biofeedback therapist told me to use it eyes shut rather than eyes open as most people use it. I've just recently started using the Alpha-Stim again.

    I've found the lowest setting of 1 for forty minutes to be the most effective. It really relaxes the brain.

    Many distributors let you rent one at home so you can see if it's going to work for you. I'd do that because they don't work for everyone. I think it's worth a try, though. Here's a link:

    http://www.alpha-stim.com/

    Another thing I'd suggest is home brainwave training. Transparent Corp. is a great company, and they let you try their software for 2 weeks free and without a credit card. I'd recommend their NeuroProgrammer 3 (NP3). Transparent has really good customer service, so you could ask for suggestions. They have training sessions for sleep, relaxation, focus, and depression, among others.

    http://www.transparentcorp.com/products/np/

    Are you taking magnesium? For calming, I find magnesium lactate very effective:

    http://www.amazon.com/Standard-Proc...=1427646246&sr=1-1&keywords=magnesium lactate

    Also, epsom salt baths at night really relax me. Some people find the magnesium sulfate a problem, and if you don't do well with sulfur, you could try the magnesium chloride flakes instead.

    Another thing that helps me is SLCP Longvida. It's a form of turmeric that crosses the BBB and is thought to reduce brain inflammation, associated with anxiety. It helps me with memory, relaxation, and sleep. Here are some brands:

    http://www.amazon.com/s/ref=nb_sb_noss?url=search-alias=aps&field-keywords=slcp longvida

    This link has information about Longvida:

    http://longvida.com/

    Do you know if you have a methylation problem? For me, nothing helped my sleep problem until I got on methyl donors. I think that's very basic.

    You mentioned you have celiac and hashimotos diagnoses, yet you have problems when you go gluten free and take thyroid meds. Can you elaborate on that?

    Have you ever tried Naturethroid or Armour? I do far better with these forms than synthetic versions such as Synthroid.

    Best of luck to you. This is a great web site, and members are very helpful.

    By the way, in spite of the problems you are having, you are still a great writer! I used to be a technical writer, so I always appreciate clear, lucid writing.
     
    Ryan88, meeKO, danceintherain and 4 others like this.
  5. A zombie

    A zombie

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    i'm not celiac but i don't eat GLUTEN ( i have hashi's/lyme/Adrenal fatigue/many genetic mutations) and try to stay away from dairy, grains too. No perfect though. Gluten for sure!
    it takes some time , some ppl may feel worse before they feel better while going off gluten.
     
  6. perchance dreamer

    perchance dreamer Senior Member

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    A terrific site for thyroid information is Stop the Thyroid Madness:

    http://www.stopthethyroidmadness.com/

    I wanted to add a couple of things to my prior post. The Alpha-Stim does seem to improve my sleepy quality. It feels deeper.

    Also, in spite of all the improvements I've had, I do still have to take sleep medicine in addition to supplements and the Alpha-Stim. I have a touch of narcolepsy, so may have to take sleep meds the rest of my life.

    Xyrem is the gold standard for improving sleep quality. It acts on Gaba-B, which is not thought to be addictive. It puts you into the deep stages of sleep.

    I was on it for many years, but it did not work for me when I was first getting off Klonopin. Benzos, as I understand it, work on both Gaba-A and Gaba-B, and you need to taper off a benzo properly and take some time to let your Gaba receptors reset before trying Xyrem.

    I went off Xyrem last year and went on Trazodone. Traz is thought to help sleep quality, too, and I'm doing well on 50 MG. I did gain a little weight on it, but not everyone does. Most people lose weight with Xyrem.

    So those are a couple of ideas for sleep meds if you continue to need a prescription after tapering off your benzo, if you choose to do that.
     
    SpecialK82 likes this.
  7. SOC

    SOC Senior Member

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    Have you had a sleep study to determine if there are known (and potentially treatable) problems with your sleep?

    Years ago, my doc diagnosed poor stage 3 and 4 sleep just based on symptoms and prescribed trazodone. I had sleep symptoms similar to yours and they completely cleared up with the trazodone. It's amazing how much better decent sleep can make you feel. Not that it cures ME/CFS, but it can really improve quality of life.

    A minor warning -- I have a very bad rxn to the Pliva and Teva (same manufacturer) brand generic trazodone. Not everyone does, of course, but it's worth noting that there appears to be some kind of difference between it and other brands. The Apotex brand generic works best for me.
     
    meeKO and Alea Ishikawa like this.
  8. SDSue

    SDSue Southeast

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    May I ask what your "very bad" rxn might be? I'm running out of options and am considering asking about trazadone. Is it a low-slow adjustment?
     
  9. SOC

    SOC Senior Member

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    I had no problems working up relatively quickly to the right dose for me, but I am not particularly sensitive to medications. I'm not one that has to start particularly low or go particularly slowly with most meds.

    The very bad rxn is severe depression with suicidal ideation. It hits within 24 hrs (or less) of taking the Pliva/Teva generic and clears within 24-48 hrs of stopping it. Fortunately, I know what is happening, so I don't take the feelings seriously; I know they are medication-induced and will clear quickly if I stop taking the med. Still, it's extremely unpleasant. As you can imagine, I get pretty angry when the mail-order pharmacy changes the generic without telling me, especially since my script specifically says "Apotex only".

    Yeah, I should have looked every time I got a new bottle :rolleyes: but I got complacent after years of getting the right thing every time. So it's always a shock, but it's so black-and-white -- one morning I wake up with severe depression out of nowhere -- that I know to go look at the trazodone bottle when that happens, and damned if every single time they've given me that blasted Pliva/Teva crap. Now I take the script to a local pharmacy so I can remind them every time they refill and I can check they've given me the right thing before I leave the store.
     
    SDSue likes this.
  10. cbmtl

    cbmtl

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    Thank you all so, so much for your responses! Phoenix Rising is an AMAZING resource.

    I'll explain my current predicament in terms that I understand. It's as if the inhibitory factors in my brain are most prominent when my eyes are open and the excitatory factors are most prominent when my eyes are closed. Ugh. I recognize that my current solution is not sustainable, but it's the only way I know how to stay awake currently. And, with a 4-year old son, I really don't have a choice. Sadly, I have never felt as though staying awake, focused and productive was natural. I have always had to push my brain and body to operate at a pace that normal/healthy folks can do without thought or concern.

    @A zombie : I have actually had numerous lyme tests, including IGENEX, both IGG and IGM, as well as a recent lumbar puncture. The ONLY test that came back positive was the IGENEX IGM test, as well as the more rigorous NYC CDC standard. I immediately began ABX treatment and was able to last approximately 10 weeks, until my stomach could not take anymore; difficult to differentiate between herxing and the simply the body's response to ABX toxicity. I also tried a less aggressive ABX treatment; none of which made much of a difference in my symptoms. I am currently exploring IV antibiotics, which my insurance company initially denied and some of alternative protocols, such as Cowden.

    Of the possible conditions, ironically, Lyme might be the most treatable and least nefarious.

    @sarah darwins: So, I was diagnosed with a classic case of celiac disease, complete vilious atrophy, in 2010. I immediately went on a very strict gluten-free diet and instead of improving, my body and brain greatly deteriorated, as if I was going through withdrawal. It's also possible that gluten, interestingly, kept my autoimmune dysfunction strictly targeted and once removed, the dysfunction moved onto to other body systems -- thyroid, brain, etc. In the past year, I have admittedly cheated on occasion, but mostly eat a clean, healthy diet. Honestly, my state of crapiness doesn't change, whether I eat gluten or not.

    @perchance dreamer : I want to digest more of what you shared, but wanted to thank you for all of your insights and kind words!

    @SOC: Yes, I have now had 4 sleep studies...and counting. : )

    The first sleep study classified me as simply having poor sleep hygiene. I would partly agree with this, but with inverted cortisol levels, it's not so easy to pop out of bed in the AM and dose off to sleep at the same, reasonable time each evening. I have tried and succeeded in getting to bed at a much more reasonable time, i'd say, 5 out of 7 nights a week. I would love to say that this has made a difference. The follow-up studies suggested very mild sleep apnea (hypopnea index of 2 to 7), which my docs said really does not suggest c-pap success. Regardless, we tried it and, again, nutin. I tried religiously for approximately 2 to 3 months, with no benefits. If anything, the damn contraption made my rest more fitful. They have not been able to explain the limb movement disorder, which I think needs to be explored more, because of concerns about something neuromuscular and why I don't get any REM. I am flabbergasted that no practitioner has focused their concern on the lack of REM.

    I recently began seeing the head of Penn Medicine's sleep department. She posited that I have basically disrupted my circadian rhythm, (clearly) and that through specialized CBT training and the right medication, she's hopeful that the switch controlling the rhythm can be re-established. I have not started the training yet, but will begin shortly.

    I will say, that because of life demands, past poor therapy responses and my constant profound fatigue, I have not been able to follow certain therapies as religiously as I would like. I would love to find some more natural therapies that can get me to a place rather quickly, where I can help myself more and not feel like I am just trying to survive daily.

    Can't thank you all enough; hope you're all having a wonderful Sunday evening!
     
    Last edited: Apr 2, 2015
    meeKO likes this.
  11. A zombie

    A zombie

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    there are natural ways to treat lyme. And also don't underestimate the damage it can do to your body. It's actually pretty hard to treat, especially late stages...
    so you have lyme? you gotta treat it, not treating it is effecting everything else in your body.

    I'm using cowden protocol, which is natural. I take banderol and samento and some of coldness detox. Might be something to look into.
    my problem , i'm always revved up. Well at least at night . I simply am not tired at night.
     
  12. A zombie

    A zombie

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    oh and i need restorative sleep too. I'm taking two clonaz and seroqeul right now.
    It's not what i want. I wan tot be bale to fall asleep at night with out heavy drugs.
     
  13. SOC

    SOC Senior Member

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    While it's certainly possible that you have poor sleep hygiene -- many people do -- I think doctors also use that as a blame-the-victim technique when they don't bother to investigate thoroughly enough. It's easy to say, "Good to sleep at the same time and get up at the same time and you'll be fine." But if there are physiological reasons why your body won't sleep when you go to bed at the same time every night, like inverted cortisol rhythms then it's NOT just a matter of sleep hygiene. Similarly, if something physiological is disrupting your sleep, like limb movement disorder or no REM sleep, then you are going to be tired in the morning no matter when you go to bed or get out of bed.

    It's probably worth trying the Penn Med sleep doctor's protocol. If it works, great. But if it doesn't after you've given it a fair try, don't let the doctor blame you for the failure by claiming you didn't try hard enough or do it correctly. Hopefully she won't, but sadly too many doctors blame the patient instead of recognizing that the therapy didn't address the problem.
     
    heapsreal likes this.
  14. alex3619

    alex3619 Senior Member

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    Many of us with obstructive sleep apnoea do not respond to cpap. I don't. So this is not a huge surprise.

    I hope you find some answers soon.
     
  15. Beyond

    Beyond Juice Me Up, Scotty!!!

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    5 years in and 100´s supplements and 10´s of quacks and therapies later and I have not found an answer for my unrefreshing, fractured sleep, just diagnoses of leaky gut, hashimoto´s and adrenal fatigue that I dare to say are being almost impossible to heal. IMO adrenal fatigue is the big player of my sleep problems and sleep problems in general. Dont people always say that stress affects sleep etc? Furthermore, if exercise makes your sleep worse like it does for me that is a big red flag for adrenal fatigue aka very low sex and vitality hormones.

    PD: I even bought an earthing device. It actually worked somewhat for a month.
     
  16. cbmtl

    cbmtl

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    @perchance dreamer

    Thanks again! Yeah, it's the oddest thing, Historically, I have been able to fall asleep reasonably well, within 15 - 30 min (though this too has worsened) and sleep mostly through the night (again, worsening), but wake-up feeling like I didn't get a lick of sleep. The cumulative sleep deprivation is maddening...and not sustainable. As I mentioned, I am currently on a pharmacological cocktail, but would LOVE not to be.

    BENZOS: With respect to benzos, and like most of the drugs I have taken in the recent past, I haven't had any known trouble either quitting cold turkey or titrating. While I currently take xanax, as needed, I have been taking less and less; trying to substitute, instead, use of gaba and kava kava at night. It helps a bit, but not nearly enough.

    QEEG: I need to revisit my results, but do recall considerable anomalies, with sleeping brain wave patterns predominating. I found a neurofeedback practitioner and had a few sessions, but he was 1.5 hours away. I'm wondering if it might make sense to just buy a machine and practice at home? Is it correct to assume that the Alpha-Stim is different and would require different hardware/software? Your comments re: the Alpha-Stim are encouraging.

    "but my brain still gets extremely active with my eyes closed instead of downshifting as it's supposed to." YES! This is exactly how I described it to my primary care physician, who, in my eyes, is a rock star! I told him that it's as if my brain is overly excited when my eyes are closed and insufficiently excited when my eyes are open. Ugh.

    Just thinking, do you know if the brain can exhibit brain wave patterns consistent with sleep, while also demonstrating elevated excititory neurotransmitter/hormonal patterns? If so, this may be what is going on.

    That said, even though my brain apparently is in a constant sleep state, would I still want to work on relaxation, focus, etc? Seems counterintuitive. What I can tell you, is that when I take a stimulant, it artificially props me up (though I could still sleep), but also often gives me a bad headache, among other questionable neurological stuff. This can be remedied by taking a benzo. I rarely do this though, for obvious reasons. I'm kinda stuck at the moment, but am hopeful that your suggestions will get me moving in the right direction.

    MAGNESIUM: Yes, I take magnesium malate daily. It is is one of the supplements that I was found to be deficient in; this is not good, as I know that magnesium is responsible for over 300 metabolic processes.

    EPSOM SALT BATHS: I tried these in the past. I tend to feel a bit calmer, but often spacier too. It may be the heat. dunno.

    SLCP LONGVIDA: Thank you. I will definitely try this. I had a SPECT scan done recently and the results were vasculitis, consistent with lyme-related encephalopathy. Not that my docs necessarily had a clue what to make of the results or how to treat it. I saw a vascular neurosurgeon, who found no vascular anomalies in my brain and a specialist at John's Hopkins, who suggested fibromyalgia. Fortunately, I am not in consdierable pain and question that diagnosis.

    METHYLATION: Yes! I have MTHFR defects, believe I am heterozygous. Do you have suggestions? I take l-methyfolate, but haven't found it to make a difference. I'd be happy to share with you many other defects, oh joy, if you think you might have some suggestions.

    CELIAC DISEASE: I was diagnosed in 2010, based on a biopsy. The diagnosis was classic celiac disease, with complete vilious atrophy. Some practitioners have since told me that other diseases/conditions can cause vilious atrophy as well. Not sure what to make of it all. I immediately began a strict gluten-free diet, but felt considerably worse, as though I was going through withdrawal. This feeling of general crappiness hasn't abated since. And, I still experience ranging degrees of stomach aches daily.

    HASHIMOTOS: After going gluten-free and feeling really crappy, I began seeing different specialists, to figure out what the hell was going wrong. And, it was one (of many) endocrine visits, that demonstrated hashimoto antibodies and eventually, an elevated TSH. The symptoms pre-dated supportive blood work though. I first tried synthroid, which did nothing. I then tried a series of other thyroid meds, all of which made me feel extremely toxic. Or, should I say, more toxic than I normally feel these days. : (

    THYROID: I know that this is an area that should probably be explored further. I have STTM and have read most of it...and also forgotten most of it. : ) Interestingly, one of the therapies that I discussed with my PC doc today, was adding cytomel to my current regimen, of .75 mcg of synthroid. We decided to half the dose of synthroid and start with a small dose of cytomel. I'll let you know if there's any improvement.

    NARCOLEPSY: Sadly, while I am profoundly exhausted, my brain is still excited enough, that I would never just pop off.

    SLEEP MEDS: Regardless, I will definitely explore Xyrem. Big thanks for the suggestion. Curious, what makes it better than a benzo, other than its non-addictive properties? I also tried Trazadone, for a night, and felt like a vegetable the following morning. I prefer not to feel like a primary food group. I am vegetative enough, without any help. Humor aside, do you think trying some of these meds for a bit longer, might help? I tend to jettison stuff quickly, if there is no immediate benefit.

    And, thank you for the kind words re: my writing. I still take pride in trying to be articulate and thoughtful. It is increasingly challenging though.

    Be well!!
     
  17. CantThink

    CantThink Senior Member

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    Have you tried Low Dose Naltrexone? - some people find it helps sleep (for me it seemed to promote/enable deep sleep. I also started dreaming again after years of no dreams), while others do not get along with it at all. It might be worth researching.
     
  18. perchance dreamer

    perchance dreamer Senior Member

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    Hi, @cbmtl. Sorry I didn't get back earlier.

    QEEG: Yes, neurofeedback would probably be great for you, but 1 1/2 hours is a long way to have to travel for sessions. The Alpha-Stim is quite different from neurofeedback and less targeted, but I've found it very effective for calming my brain and helping with sleep. You would use it with your eyes closed, too, since your brain also speeds up with your eyes closed. I like that it's something I can do at home.

    No software is required, just the unit. I'd call the company and ask what distributor in your area carries them. Ask if there's anyone you can rent from first to try it out. My sleep doctor rented one to me a long time ago.

    You might call your insurance and ask if they cover any durable medical equipment. If so, maybe they'd help with the cost. You could ask someone at Alpha-Stim about this, too.

    The unit for CES only is $795 now, according to the web site. It's called the AID model. That's the one you would need. Their more expensive model has prongs and electrodes for pain in addition to the CES.

    I was just looking at the web site. They've redone it, and it's kind of hard to find information now. They needed more usability testing.

    Anyway, if you scroll to the bottom of the main page, there are some useful links such as insomnia, FAQs and patient brochures.

    It looks like you would still need a prescription for it in the U.S. This isn't necessary in other countries.

    I hope they have a rent-to-own program. The web site says you can send it back within 30 days with a 10% restocking fee. I hope there's some way you could try it before buying it.

    Your biofeedback clinic might have one you could try out. My sleep doctor used to rent them to patients.

    To help sleep I'd use a setting of 1 and try it for maybe 20 minutes the first time. If you fall asleep, that's okay. It will still work on your brain.

    Here's an article about how the Alpha-Stim works although the researcher does say in the 2nd sentence that it's not fully understood:

    http://www.themicrocurrentsite.co.uk/how-ces-works.aspx

    I got mine a long time ago, and it looks like the new ones have been updated with some good features.

    In the meantime, you could download a trial version of the Transparent Corp. NeuroProgrammer 3 and start listening to some of their sleep and relaxation programs. Everyone is different, but one session that calms my brain is SMR (sensory motor rhythm).

    SMR is a brainwave frequency associated with sleep/wake cycles and is often deficient in people with sleep problems.

    METHYLATION: I have one copy of the MTHMR gene, which is better than having two. My sleep didn't start to improve until I got some methyl donors on board. This didn't cure my problem, but it has helped.

    You asked for a recommendation, and I'd suggest NeuroBiologix Neuro-Immune Stabilizer Cream. It is a transdermal with some major methyl donors: B12 (both methyl and hydroxy), B6, and methylfolate. It also has vitamin D.

    http://www.neurobiologix.com/Neuro-Immune-Stabilizer-B12-B6-Vitamin-D-Cream-p/46.htm

    An advantage of a transdermal is that it's so easy to vary the dose, and it's a good way to absorb these methyl donors. I use a full dose when I wake up and 1/2 dose around 5:00 p.m. If you choose this cream, maybe start off with 1/2 dose both times of the day and see how you do.

    BENZOS: They can affect your neurotransmitters even after you taper off, so I'd still take a look at this web site and what they suggest for a Xanax taper, and then I'd work with your sleep doctor. Since benzos affect the Gaba-A receptor (which causes dependence and side effects), it can take awhile for you to recover from that and respond to supplements and RXs as well as possible.

    That was the case with me. Xyrem didn't work until I had been off Klonopin for awhile.

    http://www.benzo.org.uk/manual/bzsched.htm

    SLEEP MEDS: Xyrem quickly puts you into deep sleep and is very short acting, which helps with safety. It's unusual in that it's so short acting that you have to get up in the middle of the night when it wears off and take a 2nd dose. And when you asleep on it, you are really asleep and can be hard to rouse.

    Before spending too much time looking into Xyrem, ask your insurance company if they even cover it. Many don't now unless you have a narcolepsy or catalepsy diagnosis.

    Without insurance help, it's way too much for most of us to pay out of pocket. I stopped using in Sept, I think, and the total cost before insurance was around $9000 per month. My sleep doctor told me it's around $12,000 now. I paid $35 a month with my insurance and a discount coupon from Xyrem.

    Yes, this is nuts. One company has the patent on it until 2020 and can charge what they want. I won't rave about the ugly side of American capitalism and healthcare.

    Also, Xyrem can take a long time to adjust to, many weeks for some. You have to find the dose that works for you and have to avoid food for at least a couple of hours before taking it. I had to wait 4 1/2 hours before taking it, but that's not common.

    You said you tried Trazodone one night and felt bad the next day. Do you remember what dose?

    Traz. is probably worth another try, and it might take awhile to adjust. You could get a pill splitter and try 25 MG at first.

    I think it took at least several days for me to adjust, but it has been really good, and it's really inexpensive and well studied. It's an old drug. I haven't had to go up. In fact, I cut down from 100 MG to 50 MG. Some people use just 25 MG or even lower.

    I've got to go, but will be back with some more suggestions. You hang in there, okay? Like I said, if I can get better, anyone can.
     
  19. perchance dreamer

    perchance dreamer Senior Member

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    @cbmtl, I reread your post and see that you are already tapering off your Benzo.

    MAGNESIUM: Even though you are taking magnesium, you might increase it to help you sleep. I take a lot of MG and from different sources: a combo of glycinate/malate, MG lactate, and magnesium sulfate or chloride from the epsom salt baths.

    Since you don't do well with the baths, you might try a magnesium oil for transdermal use. This is a good one:

    http://www.amazon.com/Ancient-Miner...r=1-1&keywords=ancient minerals magnesium oil

    It helps my sleep, but, unfortunately, irritates the bejesus out of my skin, which is very sensitive. You only have to leave it on 20 minutes before you rinse it off. As you can see from reading reviews, the magnesium oil has a lot of fans, so not everyone is as bothered by it as I am.

    OTHER CALMING SUPPLEMENTS: Something else helpful for sleep is L-theanine, an amino acid that increases Gaba. I'd suggest trying 200 MG to start with. Jarrow makes a good one:

    http://www.amazon.com/Jarrow-Formul...d=1428273236&sr=1-4&keywords=l-theanine 200mg

    A really great combo product for sleep that helps lower cortisol is Gaia Herbs SleepThru. When your cortisol is too high at night, it has a bad effect on sleep.

    http://www.iherb.com/Gaia-Herbs-Sle...US&w=gaia herbs sleepthru&rc=189&sr=null&ic=1

    One more: Glycine is very calming and helps sleep in a 3000 MG dosage. I've been using Life Extension Glycine caps. I empty 3 into a small glass and add a little water at bedtime.

    It's slightly sweet, so it tastes fine. You can also buy glycine powder. Glycine is also a methyl donor, so it helps there, too:

    http://www.amazon.com/Life-Extensio...273511&sr=1-1&keywords=life extension glycine

    INTEGRATIVE MEDICINE :I'm glad you have a primary care doctor you really like. However, if you continue to have problems, you might consider also seeing an integrative medicine doctor or P.A.

    Integrative medicine practitioners really dig to find out the source of a problem instead of just prescribing something to treat it. They are also more open to alternative treatment even though they also have traditional medical training.

    Through my P.A. at the integrative medicine clinic here in Austin, I've had neurotransmitter and 24-hour hormonal testing because imbalances can contribute to sleep problems. She also helps me figure out vitamin D-3 supplementation.

    When I first started seeing her, I was on Synthroid and felt awful. She said some people really do feel better on it and other synthetic thyroid meds, but she suggested trying Naturethroid (similar to Armour), and I feel much better on it than on Synthroid. Regular primary care doctors are less inclined to treat patients with natural thyroid.

    DIET: @A zombie suggested above that you might not immediately feel the benefits of going gluten free. I think it's really worthwhile to give going gluten free longer and see how you feel.

    A terrific book on this subject is Grain Brain by David Perlmutter, a neurologist. He says that most people do have problems with gluten, and he suggests getting off it because modern wheat is highly inflammatory.

    http://www.amazon.com/Grain-Brain-S...=1-1&keywords=grain brain by david perlmutter

    SIMULTANEOUS TOO-FAST AND TOO-SLOW BRAINWAVES: Yes, this is possible. When I first started going to biofeedback, my brainwaves were crazy high and low at the same time. During the day I was Delta dominant, a state ordinarily associated with deep sleep. I also had brainwaves way too fast, which can occur with OCD and panic disorders.

    The therapist told me the trouble with having such slow waves dominate during the day is that when it comes time to sleep, your brain doesn't really know what to do. She said the Alpha-Stim helps smooth out EEG patterns like mine so that the extreme highs and lows normalize.

    Keep us posted on how you are doing!
     
  20. cbmtl

    cbmtl

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    @perchance dreamer

    Thank you so, so much!!! Your suggestions have been extremely insightful and hopeful. I will need to re-read them, likely many times, to fully digest and form a plan.

    Also, I'm curious whether you might have any thoughts on Lyme - apologies if you already commented. I have been tested MANY times, but only tested positive once thru IGENEX. I tried an ABX protocol for about 10 weeks, but couldn't stomach - literally - beyond that. Are you at all familiar with some of the alternative approaches, such as Cowden? Also, my aunt was kind enough to loan me her rife machine. Thoughts?

    I hope you're well!!
     

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