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Sleep Study and other test results...

Discussion in 'Sleep' started by soxfan, May 29, 2013.

  1. soxfan

    soxfan Senior Member

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    I had the sleep study done a few weeks back and the report said I only slept 3 hours 20 minutes. I knew it was bad but thought I had slept a little longer. So once again it stated there is no sleep apnea or Restless Leg. I had basically no REM and even less deep sleep. The graph showed I had mostly light sleep which I already knew.

    She had done a bunch of other tests and the abnormal ones were HHV6 which she said was past infection...almost no Vitamin D...non existent good bacteria in my gut...and past antibodies to Lyme. Those are the results I can remember as being off.

    Her main goal right now is to try and get me a better quality sleep so I am starting on Seriphos and L-tryptophan which I just ordered. I am also on 5,000 Vitamin D and another supplement to help with my non existent estrogen level. She is also feeling that some of this is from menopause which I went through 6 years ago. Also taking a package of VSL 3 daily for the gut.

    I am also still having trouble with the Lyme bite I got last summer and she could feel scar tissue under the bite site so am going to have to go to massage to get the scar tissue loose so it won't burn and hurt there.
    At some point she wants me off the 0.50 Klonopin as it does disturb the deep sleep. That will be next visit though as she doesn't want to change too much.

    I am disappointed I didn't sleep longer but I do know my quality of sleep is poor and the goal is to work on that so I don't feel so crappy during the day. I also am having lingering Lyme symptoms so when I see my Lyme doc next month maybe I will have to do another course of abx....I am not sure though.

    If anyone has any experience with Seriphos or tryptophan I would love to hear from you!
    Valentijn likes this.
  2. maryb

    maryb iherb code TAK122

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    soxfan
    Sounds much like my nights - 3hrs sleep. Sorry I don't know anything about Seriphos,but am also very interested in hearing from those who do. My doc has just prescribed L-trytophan to help me sleep - I am on a small dose of Zopiclone, was trying to taper but after 3 nights of no sleep had to increase the dose back to the original:( Can you remember what the other supplement for oestrogen levels was - I'm in the same boat too.
    Sucks doesn't it?
    soxfan likes this.
  3. Zensational

    Zensational

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    Same here except I had no Delta sleep on sleep study. Keep in mind that you were under a lab condition and not the most desireable for sleeping. We must be getting some sleep or we'd be insane.
    Good to get off the Klonopin. That made me a zombie.
    I have noticed that the less I eat, the better I sleep. I am juicing a lot, at least once a day and eating light.
    Also, GABA will help relax the muscles as well as magnesium and herbs such as valerian, hops, passiflora.
    I tried seriphos and tryptophan as well. I can't get by without melatonin because apparently I'm not making any.
    Sounds like a good plan for you. Let us know how you are doing on it.
    soxfan likes this.
  4. Ema

    Ema Senior Member

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    Many doctors misinterpret the IgG testing for viral infections. They are taught that an elevation is a sign of a past infection when in our cases, many times it can indicate a reactivated or chronic infection, particularly if the value is quite high.

    Holtorf wrote a nice essay on this topic:

    http://www.holtorfmed.com/index.php?section=downloads&file_id=46


    Why not just take bioidentical estrogen?

    Low estrogen is highly correlated with the onset of osteoporosis.

    http://www.ncbi.nlm.nih.gov/pubmed/16607111


    Seriphos is a form of phosphatidylserine which can powerfully lower cortisol levels. It generally works best for people who are not sleeping well due to high cortisol levels at night. In people with low cortisol, it may lower levels too much and cause symptoms that increase adrenaline and worsen sleep. Rich VanK used to recommend phosphatidylserine in his methylation protocol but removed it in favor of phosphatidylcholine due to the possibility of this effect and the commonplace occurrence of low cortisol in our population.

    Tryptophan and 5HTP are serotonin precursors which can definitely help with sleep. Many people have success with these though the necessary doses may initially seem quite high. Most people need 1 to 4 grams before bedtime and it is best taken on an empty stomach (especially no protein). I would also be wary of taking it with benzos as it might increase the sedative effect.

    The Mood Cure by Julia Ross is an awesome book that discusses the use of aminos in depth.

    http://www.moodcure.com/

    Ema
  5. soxfan

    soxfan Senior Member

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    I am also don't have any melatonin but it makes me feel weird even at 1/4 of a 3mg tablet so I stopped. Will try the other things when they arrive in the mail. This was my second sleep study and they both said basically the same things...which I already know. I have a very poor quality of sleep for some unknown reason. I know I sleep here at home but it is a bad sleep and I wake up feeling completely horrible.

    The other supplement was called Women's Menocaps made by Wise Women Herbals and the bottle says it promotes normal female glandular system function. It has a bunch of herbs in it. If this doesn't work I think she wants to try a prescription estrogen short term. It is hard for me to believe this is caused from menopause as it has been over 5 years and I am just now getting these particular symptoms. I guess I don't really know if it can cause un-refreshing sleep which I have actually had for 9 years.

    I do take magnesium at bed time as well. We will work on getting off the Klonopin next visit. Even taking 1/2 mg might be contributing to the really poor sleep and fatigue. If she can get me a better sleep I would feel worlds better during the day....
  6. Ema

    Ema Senior Member

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    Here is Dr Teitelbaum's list of ideas to try for improving sleep. Some are prescription and others are supplements.


    ___ 22.** Ambien (Rx, zolpidem) - 10 mg- ½ to 1½ at bedtime. If you tend to wake during the night, leave an extra ½ to 1 tablet at bedside and you can take it as needed to help you sleep through the night.

    ___ 23.** Revitalizing Sleep Formula (30 ct or 90 ct) (Enzymatic Therapies/Integrative Therapeutics ) - Valerian 200 mg, Passion Flower 90 mg, L-Theanine 50 mg, Hops 30 mg, Piscidia 12 mg and Wild Lettuce 28 mg. Take 2-4 capsules each night 30 to 90 minutes before bedtime. It can also be used during the day for anxiety. If Valerian energizes you (occurs in 5-10% of people) use the other components. It is also excellent for anxiety. Do not take more than 8 capsules a day.

    ___ 24.* Desyrel (Rx, trazodone) - 50 mg - ½ to 6 at bedtime. Although sedating, it can be used (50-250 mg at a time) for anxiety. Do not take over 450 mg a day (or 150 mg a day if on other antidepressants).
    ___ 25.* Klonopin (Rx, clonazepam) - ½ mg - begin slowly and work your way up as sedation allows. Take ½ tablet at bedtime increasing up to 6 tablets at bedtime as needed. Can be very effective for sleep, pain and Restless Leg Syndrome. Klonopin may be addictive. Taking one quarter to one half tablets in the morning (not more) can actually decrease brain fog in some CFS patients.

    ___ 26.* 5 HTP (5 Hydroxytryptophan) - 200 to 400 mg at night. Naturally stimulates Serotonin. Don't take over 250 mg a day if you are on Prozac, Paxil, Zoloft, Desyrel or Celexa. Can help with pain and weight loss at 300 mg a day for at least 3 months. Or ___ Tryptophan 500 mg caps 1-6 at bedtime. Available at www.vitaganza.com ($65 for 180 caps).

    ___ 27. Calcium - 500-600 mg and Magnesium 100-200 mg at bedtime helps sleep.

    ___ 28. Doxylamine (Unisom for Sleep) or Benadryl - 25 mg at night (antihistamines). May also help pain.

    ___ 29.* Neurontin 300 mg (see #220A) - 1-2 caps at bedtime. Also helps pain and restless legs syndrome.

    ___ 30.* Zanaflex - 4 mg ½-2 at bedtime for sleep (more for pain, see #230A). Stop if it causes nightmares.

    ___ 31. Sonata (Rx) 10 mg - Take 1-2 capsules during the night if you wake after 3 AM or if you only have trouble falling (vs. staying) asleep. It's sedation only last 3-4 hours.

    ___ 32.* Soma (Rx, carisprodol) - ½ to 1 at bedtime. This is very good if pain is severe. Soma may be addictive.

    ___ 33.* Flexeril (Rx, cyclobenzaprine) - 10 mg - ½ to 2 at bedtime. Muscle relaxant - can cause dry mouth.

    ___ 34.* Doxepin (Rx, Sinequan) - 5-10 mg, 1-3 capsules at bedtime or Doxepin liquid 10 mg/cc. If a lower dose is needed you can start with 1-3 drops at night. A powerful antihistamine. Some people get the greatest benefit with the least next-day sedation with a dose of less than 5 mg a night.

    ___ 35. Elavil (Rx, amitriptyline) - 10 mg - ½ to 5 tablets at bedtime. May cause weight gain or dry mouth. Good for nerve pain and vulvadynia.

    ___ 36. Remeron (Rx, mirtazapine) - 15 mg - 1 to 3 tablets at bedtime (especially helpful if you feel like you're "hibernating" during the day).

    ___ 37. Melatonin - ½ mg - 1 mg at bedtime (available at health food stores). If you feel wide awake at bedtime, try 5 mg taken 3 to 5 hours before bedtime. Don't use a higher dose unless you find it more effective (.5 mg is usually as effective as 5 mg and may be safer).

    ___ 38. Gabitril - 2 mg twice a day (see # 220B). Increase by a maximum 4 mgs daily each week to a maximum of 24 mg a day (optimal effect is seen at an average dose of 16 mg/day). Even 5 mg at bedtime can markedly improve deep sleep and can sometimes decrease next-day sedation. The main side effects are sedation, dizziness and gastric upset.

    ___ 39. Lyrica (Rx-Pregabalin) - 50-250 mg a night (or 100-200 mg 3x day for pain).

    ___ 40. Delta Wave Sleep Inducing CD/Tape - This helps with no side effects. Play it to fall asleep and if you wake during the night. They can be played throughout the night if desired (order from 800-333-5287 or from our web site at www.Vitality101.com). You can use either of the CD's.

    ___ 41. Kava Kava - 30% extract - 250 mg capsules - 1 to 3 capsules at night (if a rash develops add a B-complex 50 mg at night, and stop/decrease the dose/frequency of use. If the rash persists, see your family doctor). Do not use if you have liver inflammation. May rarely cause liver inflammation.

    ___ 42. Xanax (Rx, alprazolam) - ½ mg - ½ to 4 tablets at bedtime. This is short-acting and gives a good 3 to 5 hours sleep with less hangover in the morning. Xanax may be addictive.

    ___ 43. Permax (pergolide) (Rx) - (see #240). For Restless Leg Syndrome and pain.

    ___ 44. Seroquel (Rx) - 25 mg - 1 at bedtime (an anti-schizophrenic medication).

    ___ 45. Zyprexa - 10 mg - ½ -2 tabs at bedtime. After 6 weeks, also helps pain. Causes weight gain. (An anti-schizophrenic medication.)

    ___ 45A. Cuddle-Ewe Mattress Pad - Use if pain interferes with sleep (800-328-9493, ext. 000 - company may offer a 90-day money back guarantee).

    ___ 46. Xyrem (Rx, GHB) - an excellent sleep medication in fibromyalgia. Because the DEA claimed that it was being used as a date rape drug, it has gone from being inexpensive and over-the-counter to being tightly regulated and costing approximately $500 a month. If all else fails, this often works very well. Be sure to rinse your mouth well and swallow after taking liquid. If the medication is left to sit on your teeth, it can dissolve your enamel and damage your teeth. Take nine cc (4.5 g) at bedtime and repeat approximately four hours later when you wake up if needed. The first night you use the Xyrem, take it by itself without other sleep meds. You can then add back in one tablet of any sleep medication with each dose until you're getting good sleep for at least four hours with each dose.

    ___ 46A. Lunesta (Rx) - 2-3 mg at bedtime. If taken with Sporanox, Nizoral, Diflucan or Zithromax a lower dose may be needed.
    Little Bluestem and maryb like this.
  7. soxfan

    soxfan Senior Member

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    Ema- I think my doctor wants to try the herbal route first before anything else. I see her in a month so we can decided what to do next if this isn't successful. As far as the HHV6 testing...I have had it done many times even from Dr. Komaroff who told me it was not an active infection. Since he is one of the top CFS doctors I tend to believe him. I do not have any symptoms that would indicate that it is activated.
    I also do have high cortisol at night which is why she is starting me on the Seriphos at 1/3 capsule. I have to open it up and sprinkle some in applesauce.

    For now I am going to do this protocol for the next month and see what happens. I still say that if I had a better quality sleep I would feel so much better....maybe that is my problem.

    Thanks for the list of sleep meds...I have already tried probably 90 percent of them in the past 9 years. I want to add that I do sleep at least 6 or 7 hours a night but I am waking un-refreshed. It was just during the sleep study I didn't.
    Valentijn likes this.
  8. maryb

    maryb iherb code TAK122

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    Brilliant list Ema thanks - wish someone had told me how addictive the Zopiclone was though beware folks...
    Ema likes this.
  9. ukxmrv

    ukxmrv Senior Member

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    Seriphos leave me really wrecked the following day. I have only higher cortisol at night when compared to my earlier cortisol. It's not high i.e. out of a normal range. Only rarely get the "tired but wired" feeling.

    When I was taking Seriphos (to try and get to sleep earlier) I had to take it a couple of hours before I wanted to sleep.
    soxfan likes this.
  10. soxfan

    soxfan Senior Member

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    Did Seriphos leave you with a hangover? I am really afraid to take it because I am worried about that very thing. I do have high cortisol only at night but during the day it is a little low. I have the "wired tired" feeling every time I try to rest or sleep. I feel like that during the day too which is strange since my cortisol levels are low.
    She wants me to break open the capsule and only take 1/3 of it so maybe I will try it. She told me 30 min before bed.

    I don't even have a problem falling asleep most nights...I just have a very poor quality of sleep.
  11. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    Soxfan it might be useful to look into earthing, most of people in forums report deeper sleep with it. It has studies. http://www.ncbi.nlm.nih.gov/pubmed/15650465 Personally it has only made my sleep schedule from 2 - 7 AM to 11PM- 1 AM. I fall asleep now in 20 minutes - 1 hour, a daily miracle that I find hard to believe. It might make my sleep deeper but its not something noticeable right now. I was sooo hopeful about earthing for my unrefreshing sleep... no luck. Looks like it has almost corrected my cyrcadian rhythm because I wake up very early as well (but I still wake up a couple times most of nights) Obviously unrefreshing sleep its one of the end products of a complex hormonal, toxic, inflammed,neurological, bioquimic... psychological?... cascade for me and it wont ressolve easily. Because I have adrenal fatigue, hypothyroid etc in tests. But now at least I have a little better face, a little more energy/optimism and no headaches. Thats because the optimum hours for sleeping are from 11 PM to 7-8 AM and sleeping out of that schedule pays its toll on you!
  12. soxfan

    soxfan Senior Member

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    Well...I tried the Seriphos and it was a terrible experience. I only used 1/3 capsule at bedtime and it actually made me feel as though the life had been drained out of me. I took it for 3 nights before I realized it was that. I think it probably just bottomed out my cortisol for the entire day as well. I felt like I was dying. I could hardly function and spent almost 3 days laying in bed drained.

    I am sleeping so good right now with just the 1/2 klonopin and kavanace but I wake up with a weird kind of fatigue. It feels as though there is a very bad pressure tiredness behind my eyes. So hard to explain but almost like the fatigue is confined to my head and not my body. I am at a loss as to what to do about this. Every time I try something new it backfires. The tryptophan didn't help either. I will definitely look into earthing since I don't think there are many more options for me.

    I sleep the times I should be in order to recharge my adrenals but I wake up with this very strange tiredness....My sleep schedule at the moment is asleep by 10:30 or earlier and I wake up a couple times at night but fall back to sleep. I wake up for good around 6:00 and usually get up shortly after that.

    I am hypothyroid too..
    ukxmrv likes this.
  13. August59

    August59 Daughters High School Graduation

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    It's that lack of deep sleep that just tortures your brain and body. Just because you only got 3 hours of sleep during your study don't get to concerned because they are looking at your sleep cycles which you can have anywhere from 2 to 6 cycles and 3 hours is plenty of time to get at least 2 cycles normally. I usually have in about a 4 hour span. It's always Stage 2 to REM and back to Stage 2 then back to REM and never entering Stage 3 and 4 or Deep Sleep. I have had them broken down to Stage 3 or 4 and sometimes it just states Deep Sleep. I think the cut-off that most sleep studies use is 190 minutes constitutes a good study normally. The doctor can certainly dispute it and want to have it performed again. He will probably have to butt heads with the insurance company.
  14. soxfan

    soxfan Senior Member

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    It's the second study I have had in the past couple of years. I don't think it is necessary to do it again. I think they really wanted to make sure I didn't have sleep apnea or restless leg which I don't. You are right that I have hardly any deep sleep and that is why I wake up so tired I guess. I have tried so many sleep meds but continue to wake up tired so I really have no clue what the problem is..I just know my sleep is not peaceful like it should be.

    I wake up at night and sometimes feel like my body is either floating or bouncing on a water bed. I never feel at peace while in Bed. It is not calming or relaxing even though I listen to meditation tapes while in bed. I give up..maybe someday I will be back the way I was 4 years ago and actually look forward to bed time.
  15. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I have some CDs that a designed specifically to help you get to sleep. I found that they are less helpful than listening to my favorite music CD.

    If I am just not going to sleep, I listen to NPR/BBC radio. It keeps me from getting bored and restless and eventually I drop off to sleep. I then sometimes have weird dreams from what I am hearing on the radio, but they are not as bad as some of the really weird dreams I have when I am sleeping badly with the radio off.
  16. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    Soxfan maybe the issue its very low cortisol during nightime, I think thats the cause for my unrefreshing sleep, having in account the couple of tests pointing out very bad adrenal function. I also remember when sleeping was pleasurable, but like in a distant dream. Right now I have absolutely corrected my onset-insomnia with earthing, so going to bed isnt such a torture anymore, but still its not something I look forward to, because I will wake up haggard and dizzy/headachey, unrested the next morning... :cautious: And even while I fall asleep soon I DONT feel that wonderful drowsy feeling healthy people get when being in bed at night. Just lie there, toss and turn until I suddently lose conciousness.

    So thats where I am at right now, focusing on adrenals and sleep with chinese calming adaptogens and we will see. Getting good sleep its the most important thing IMO.
  17. soxfan

    soxfan Senior Member

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    They tested my cortisol using saliva and told me my levels was elevated at 10 pm. That was the cause of my unrefreshing sleep but I can't believe that because just 2 years ago I had the test done and my cortisol was perfect at 10 pm yet I feel the same now as I did then..wake up unrefreshed with very disturbed sleep.
    I honestly don't put much faith in the saliva test because cortef did nothing for me and my blood levels are great.

    I am now cutting back on the klonopin I take which is only half milligram. I want to get completely off it and try to sleep with nothing in the hopes not altering my brain or sleep cycles will help. Usually the less I sleep the better I feel instead of having broken sleep all night. I just want to see if that works but it is going to take time cutting down the klonopin.

    I never feel the nice drowsy normal sleepy feeling. I want to try and feel that again so that's why I am quitting the meds.
  18. tamsyn

    tamsyn

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    I had a sleep study done too -- only slept twice, 40 mins each time, in a 7 hour test. I was so sleep deprived that I twice drove straight through red lights. Scary!! Prior to ME, I had always slept a solid 8 hours with no problem all my life. ME completely disrupted 40-plus years of good sleep habits...then I went about 5 years with terrible sleep...only 3 hours/night! I tried all the herbal and amino acid stuff from Dr. T's excellent book, with no results at all. I tried melatonin three separate times and each time was so wired I was awake the entire night, just vibrating. I tried HRT. I tried B12 shots. I tried adrenal extracts, meditation, massage, yoga, herbal teas...finally, my doctor put me on Imovane for sleep, and Gabapentin for sleep and pain. What a relief to sleep! I've been on both meds now for 8 years and cannot imagine how I would otherwise have survived. I never understand this thing about sleep meds being addictive...we're told that this 'addiction' shows up if we go off the meds and then we'll get 'rebound insomnia' (ie e cannot sleep without the meds.) Well yes...that was the reason for going on the meds in the first place so of course, if you go off them, you once again cannot sleep. Isn't it like saying that diabetics are dependent/addicted to insulin because they cannot manage with it? An ME specialist told me that the ME has disrupted my CNS and my sleep centre in the brain, and that I might need medication for life. Okay, if that's my 'insulin' then so be it.
    redrachel76, soxfan and Beyond like this.
  19. soxfan

    soxfan Senior Member

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    I haven't heard of Imovane but do have some Gabapentin for the nerve pain I have in my leg. I am all for taking something for sleep but I still am not having good sleep and waking up totally unrefreshed. I think it is time to try another supplement.
    I too have tried herbal stuff along with prescription medications. I was on Lunesta for 6 years but it just quit working so I had to look elsewhere. I have tried so many things like you but still haven't found the magic combo. I have to say that I DO sleep at night really well but wake up un refreshed and feeling crappy. Of course there are those nights with the adrenaline surging when I get maybe 2 or 3 hours or nights when I am totally over wired but overall I feel as though I am sleeping.

    I use to have great sleep too before all this.....I long for those days when I actually feel sleepy and want to climb into bed. My bed is not my sanctuary anymore...it is more a place for nightmares and bad...restless sleep.
    I am sure the sleep center in my brain is totally out of whack.... Okay just read that Imovane is marketed as Lunesta in the USA...darn I was hoping it was something I could try.
  20. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    Lunesta seems to suck for a lot of people, Gabapentin on the other hand its often heard as good for deepening sleep. I would try either Gynostemma Tea or Reishi or both. Kava Kava also its famous for deepening and improving sleep for some. Look for the highest quality herbs that are potent extracts or have lots of actives. I am personally gonna try the two first and report back. My issue its also unrefreshing sleep, and adrenal fatigue for sure. Have done the research and both are good at improving sleep quality among other things.

    Ultimately upping Glutathione its what should bring back normal sleep in most of CFS´ers IMO, so methylation protocol should be looked at (if glutathione blockage/depletion its actually the issue for you and not lyme or god knows what). People like caledonia or deliarose (from prohealth.com) can attest that. Makes sense, since loss of glutathione and proper methylation screws serotonin and melatonin, plus the HPA and thyroid, all which pretty much will ruin your sleep (and your life) if dysfunctional.

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