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New here please help/sleep disorder

Discussion in 'Sleep' started by ABCFS12, Mar 4, 2011.

  1. ABCFS12

    ABCFS12

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    hi there
    I am new here.Have been looking around and so happy to have found such a supportive forum. I have had CFS for over 10 years. Have tried many things. Last relapse was 6 mos ago and still going on. I have acute mycoplasma infection and epstein barr for 4th time! My main problem that I really need some help and guidance with is sleep. Every since the very moment I got ill 6 mos ago I am unable to sleep. I am exhausted. But I am only able to get into a light half awake half dreaming state. As soon as I close my eyes I am dreaming. My sleep studies show alpha wave intrusion. I cannot nap. If I try to close my eyes during the day I am jolted awake by what feels like a dropping feeling in my abdomen. It is terrifying. I also wake out of that dreamlike state many times during the night and then finally it all ends at 5 am when there is no possibility to get any more of anything.
    I have tried so many medications minus xyrem. I am afraid of that drug for some reason. I feel that my brain has been permanently damaged somehow by these infections. Is it possible to have permanent damage to the thalamus or area that controls sleep? I am so scared and I feel hopeless. All I do is sob. I want to know if this can ever go away. I have never had sleep issues before and its been 6 mos straight without even one day of a break. I am starting antibiotics for the mycoplasma today but if the damage is done is it permanent? I cant live this way.
    :(
  2. LaurelW

    LaurelW Senior Member

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    I've used Xyrem in the past when nothing else would work. If you pay really close attention to the dosing, there's nothing to worry about. They give you lots of educational materials to help you with it.
  3. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Not sure where you are located, but have you looked at this website: http://www.co-cure.org/Good-Doc.htm

    When you say you have tried so many medications, are you referring to sleep meds? When is the last time you had a sleep study?

    "I also wake out of that dreamlike state many times during the night and then finally it all ends at 5 am when there is no possibility to get any more of anything." So you cannot go back to bed for some reason? If you have not sleep well at all in 6 mos, I can understand why you are anxious, you really need to get some "good" rest! hang in there!!


    GG

    PS Welcome to the site!
  4. ABCFS12

    ABCFS12

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    Hi. Yes I have tried all the natural meds. I have tried all the RX meds nothing works. I have a great doctor but when they run out of meds to prescribe there is nothing they can do. I have had two sleep studies which show alpha wave intrusion. I have not slept well in 6 mos and I feel like I cant hang on anymore :( Feels like permanent damage.
  5. Enid

    Enid Senior Member

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    Very difficult to advise but a suggestion I found helped at a critical stage (no infections discovered) available only by Doc's prescription - the Gabapentin (Neurontin) I was allowed low dose for pain I upped to higher dosage for a while. This allowed deep sleep, which helped enormously. You could put to your Doc and see if he thinks it is safe/might be helpful. I was not being treated for anything else at the time. Just a thought. What aids one may not aid another.
  6. jeffrez

    jeffrez Senior Member

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    If you have alpha wave intrusion, EEG neurofeedback possibly could help. Where do you live? You could search your area for a practitioner who might be able to treat the problem, depending on the cause, how good they were, etc.

    With the brain, it's beginning to appear that the concept of "permanent damage" is a little more fuzzy than we once thought. Because of neural plasticity, the brain actually can recover and remap/remodel itself from all kinds of injury and dysfunction that at one time we would have thought of as being "permanent." It still appears true that some things are perhaps a little more "permanent" than others, but even if there is some actual damage, readjusting the brain waves through retraining the brain with neurofeedback potentially might at least improve the symptoms to more tolerable levels. And it might even fix it completely. That possibility is not unlikely at all, imho.
  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Firstly alot of us seem to get a tolerence to sleep meds quickly, so i recommend swapping between a few things regularily to avoid tolerence and keep meds working. Secondly some things wont but u to sleep but can help improve sleep quality and keep u asleep longer, a sleep sustainer, then theres sleep initiators, these help u to fall asleep and normally a benzo or z drug like zopiclone or zolpidem. Some sleep sustainers on there own will also put u to sleep as well but its trial and error to find this. Also try not to use a benzo or z drug more then 2 nights in a row as tolerence to these seems to happen quickly. Sleep sustainers list- anticonvulsant; lyrica, neurontin and topamax. Antihistamines: atarax, diphenhydramine, phenergan. sedating antidepressant: doxepin, amitriptyline, mirtazapine. muscle relaxer: baclofen, tizanidine etc and when also else seems to fail and should use once in a while and is good for hard core insomniacs is an antipsychotic med called seroquel which is used in doses lower then for psychotic conditions 100mg or less. Its also good to use natural stuff to help go along with meds and may help use to use lower doses of meds.

    I suggest google alot of these drugs, u may have used them and found them initailly good but like i said constant use they stop working so use intermittently to avoid tolerence. look into drug interactions and dont use meds in the same class of drugs, especially antidepressants. Talk this type of strategy over with your doc and see what he thinks, u may find u might need a few docs to prescribe u different things, this is abit shonky but make sure your confident on what your doing and this stragety is for hard core insomniac that just cant sleep. Some people can use the same meds for years every night with no problem. if a med stops working just stop it for a while like a month or so and dont be tempted to increase the dose, just stop it for awhile.

    Heres and example of a plane, day 1 sleep initator zolpidem/ambien as anitiator with with baclofen and doxepine. day 2 zopiclone as initiator with mirtazapime, day3 seroquel with lyrica.then repeat, every so often try something different. this isnt perfect but its the best i have found, crappy nights still haen but a fewer.

    Any question feel free to ask.

    good luck,

    cheers!!!
  8. ABCFS12

    ABCFS12

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    Thank you so much for all the kind replies. It really means so much to me in my state of misery. I have tried MANY drugs so far and I mean MANY. The Neurontin made me literally hallucinate. The problem with my body is that is has opposite reactions to drugs. Usually if it is supposed to sedate you it does the opposite for me. I agree with switching them around as something will only work for a few days. I really dont have anything to switch around thats the problem. I only have remeron which works for 1 or 2 days then stops working. I am not good with any benzos or Z drugs as they do the opposite in me! This is why I feel very hopeless! I wonder if the damage is done. I have never before in all of my years had any trouble with sleep. It was just this last relapse 6 mos ago where my sleep disappeared overnight (upon virus reactivation) and never returned. I havent tried Baclofen this is one I would like to try. Last night I took doxepin for the first time. My tongue was numb and I stayed up the entire night. On top of that I took remeron and 3 benadryl! Wide awake! Very scary! But I dont even feel tired! Do I need to go to the hospital, it seems something is alarmingly wrong and happening here? scared...
  9. ABCFS12

    ABCFS12

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    also i do have a place where i could do neurofeedback. the guy told me it would take a long time to see results though!
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    doxepin and avanza might not mix. Maybe try the other anticonsulants, i havent heard of anyone getting hyped up, if anything they have a more of a calming effect then a sedating one and go well with something else u may use for sleep. Neurofeedback is something i looked into but was not a going to be a 100% thing and was going to be expensive. But if u have the $$ go for it. The other thing is to look into cortisol levels, try and get a 4 times a day salvia cortisol test. If cortisol levels are high at night this can worsen insomnia. I have been having some success using phosphatidylserine at night which can help with high cortisol levels plus i added tryptophan 3000mg and all this has helped even though i still need to medicate but sleep quality in general has improved.

    Are u doing anything for the viral reactivation? and what viruses ebv etc?? u need to smash those buggers down. I know they say neurontin is similar to lyrica but for me the feel very different, i find it more sedating and calming then neurontin which i found very neutral but helped with pain.
  11. ABCFS12

    ABCFS12

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    starting antibiotic for mycoplasma infection and not sure about anything for the EBV. Apparently it was acute first time blood was drawn and now its not. I am on Dr. Enlander (NY) protocol. I believe his injections have hepapressin in them so thats some sort of antiviral. This illness has taken so much from me its appauling. :(
  12. jeffrez

    jeffrez Senior Member

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    I had the same thing happen with the sleep. Just suddenly with a crash I totally lost sleep and became reliant on drugs. I'm fortunate in that I have my own neurofeedback equipment, and I was able to at least restore sleep onset to some extent for most nights. So now I usually can get a few hours before I wake up again and have to take a benzo, or else even some herbs can sometimes be enough (passionflower works the best, has good benzo action, valerian can work, but makes me severely depressed after just a day or two). Before the crash chamomile used to work pretty well for occasional insomnia, but afterward it was completely ineffective. So for me, at least, I think it is tied to the HPAA (like everything else seems to be).

    Other useful drugs are trazodone, and even very small doses of seroquel. I only take those in extreme circumstances, like if I have not slept and absolutely need to because it's getting dangerous. I also have paradoxical reactions to most drugs - SSRIs make me horribly depressed, etc. - but it would be hard for me to imagine anyone not being knocked out by seroquel. That is like an elephant tranquilizer. I'm not sure of the quality of the sleep, but it seems pretty deep, probably stage 3 at least. Supposedly trazodone can initiate stage 4 sleep, but I get increased anxiety symptoms the next day after taking it. So I limit those to when absolutely necessary.

    While the drugs can be very helpful and even necessary, imo they will not cure a sleep disorder. The neurofeedback on the other hand definitely has the potential for a good fix if not a cure. The person you talked to who said it would take a long time probably doesn't have much experience with CFS patients. Our brains are definitely different than 'normal' brains, and typically are more unstable also, in the sense that they are typically much more sensitive to the effects of something like NF. So while it might take a lot of sessions, it also literally could take only one. There is no real way to predict how someone is going to react, especially if they've never done it before. If this person seems competent it could be worth investigating, or if it seems like they might be clueless and not have much experience with CFS, it might be better to find someone else. But the idea itself is definitely worth a try if it's available to you, especially since you already know you have alpha intrusion.
  13. sibenno

    sibenno

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    i had the exact same problem for a whole year half asleep,jolting awake just on the point of sleep(like adrenal rushing through my body)when finally falling asleep waking after 1-2 hours completely drained and felt like i would die.i had no choice in the end to take diazapam 5mg 3 times and day but it still only gave me about 3-4 hours of sleep but believe me i really was happy with anything.after reading many peoples stories about m.e and sleep i realised the less i done the better to sleep and if i done to much through the day(which was barely nothing anyway),or got stressed at anything the worse my sleep.after another 14 months i have very slowely weaned off my diazapam to just 1.5 ml of a night,i also take a antidepressant called duluxotine but i still have sleep problems almost all nights but without the jolting just wake up frequently although can get back to sleep and overall get about 5-6 hours a night.sleeping problems are one of the main problems of m.e (no sleep worse symptoms,worse symptoms no sleep ,vicious circle or what)and your gp needs to help as much as possible.you are not alone and many people have these episodes it is a total nightmare ,i hope you get the right help of your gp and your sleep problem eases a bit ,you will find something to help you eventually (mine was diazapam and i was terrified taking it after all the horror stories i heard about this drug ,but it worked and broke the cycle )stay strong and take each day as it comes hopefully your sleep will resolve itself soon.
  14. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    EBV iga is the antibodies that the doc said for acute first infection but when the virus reactivates again iga antibodies wont always be present but igg antibodies that show past infection can also be a chronic infection which alot of docs cant distinguish between. U need to get your igg antibodies tested and if elevated can indicate chronic ongoing ebv infection. Others on the board are probably better informed about igg titre levels. myself cant get levels measured in australia but my doc went off a lymphocyte subset test which was elevated and probably due to ebv etc chronic infection and this is when we trialled Antivirals and had improvement. I think if u dug further into chronic ebv infections and antivirals, you may get some help with them. Also because u have ebv it would be wise to get tested for other herpes infections like cmv and hhv6. Reducing this viral load can help reduce inflammatory cytokines which can cause and or worsen insomnia.

    cheers!!!
  15. ABCFS12

    ABCFS12

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    wow, all of you are so kind! I literally have tears in my eyes when i read sibennos post that you describe exactly what i am going through. not that i would wish that on anyone but wow to know i am not alone with this! i feel like i am so crazy with this symptom! thank you for sharing with me! yes neurofeedback i will give a go this coming week. got all my virals checked last week will have results this week. also did the xmrv test. i am not sure my body could handle the antivirals? it is so darn sensitive to even simple stuff. also with the heavy duty antibiotics coming up!! ugh! say a prayer for me. :)
  16. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Glad to hear this, the sooner you start perhaps the sooner you will get results. This reminded me of a product called the Alpha-Stim, it has been talked about on this website. I know my Drs office rented it for $100/month which could be put towards the purchase cost of about $400. Hope you find some relief real soon, not sleeping is very damaging to our bodies, you need to get this resolved ASAP.
  17. fla

    fla Senior Member

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    I've found that going to bed very late has improved my sleep. I make sure to have the blinds closed so the sun doesn't wake me too early. It's probably not a good idea to be a night owl but late sleep is better than no sleep.
  18. sibenno

    sibenno

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    hello again m.e friend ,forgot to mention the crazy feeling of not noing wether i was asleep or awake like half asleep and crazy dreams ,stupid this m.e isnt it and people think we imagine these symptoms haha i would love a none believer to experience this for just a couple of days and nights to see how they would feel,just one last thing have you had your thyroid gland checked because mine went funny causing my sleep problems to get even worse,so go and annoy your doctor again to check it let him or her earn their wages ha,keep your chin up i am sure things will get better for you soon,take care
  19. SaveMe

    SaveMe *****

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    I usually go to bed at 11pm and wake up at 8am, and fall sound asleep within 10 minutes or so. However, when I wake up, I feel so un-refreshed. This is called non-restorative sleep. My sleep study showed "sleep fragmentations". I really want to try Xyrem but I know its mad expensive, and can be dangerous.
  20. ABCFS12

    ABCFS12

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    I have not been doing well. I found out from my doctor I have elevated ebv, mycoplasma infection, elevated parvovirus, and ridiculously high hhv 6 level 1200 was my level! He said it was high but not highest he has seen. I am unable to tolerate medications and not sure how I can possibly tackle these infections. Maybe I will just die. Can't take antibiotic for mycoplasma bc of stomach. He wanted me to try valycyte for hhv 6 but that would surely kill me. I agreed to try valtrex since its milder. Who knows? Do I need to check into the hospital to get these infections taken care of? Can the HHV 6 being so high cause permanent brain damage? Should I just go a homeopathic route? Confused now more than ever. Hopeless, desperate and heartbroken. Now more than ever I'm certain my sleep has been damaged permanently by this disease in my brain. Please help.

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