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Desperately need help

Discussion in 'General ME/CFS Discussion' started by paul80, Jun 1, 2015.

  1. paul80

    paul80 Senior Member

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    Sorry for the long post but i'd really appreciate some help or advice.

    I have quite severe m.e and am mostly housebound. I have been like this a long time and have leaned to deal with it but lately i've been having this new problem which i am unable to cope with.

    I need about 10 hours sleep to function properly. Before, i was waking up multiple times during the night but was able to get back to sleep, but just in the last 2 weeks i keep waking up at about 3 or 4 o'clock in the morning and my body just won't let me get back to sleep. It's hard to explain this but my brain still feels very tired and i really want to go back to sleep but my body just feels weird, like the opposite of relaxed, just really worked up.

    Another strange symptom that happens at the same time is that my mouth goes incredibly dry. Even if i drink lots it makes no difference, 10 minutes later my mouth is sticking together again.

    I've been unable to sleep during the day also but that is due to a different problem, a post nasal drip that is also driving me crazy.

    The worst part is that the tiredness which gets worse each day and is making my emotions go crazy and i've started getting severe anxiety in the mornings. My stomach is full of anxiety and i've totally lost my appetite.

    For some reason i never get anxiety or emotional problems in the evening and i have no problem getting to sleep at night. My body is also really cold during the day but really warm in the evening which is strange.

    I seen a doctor during the week and he gave me some sleeping pills to help me until i see my own doctor this week. The sleeping pills worked great, i still woke up multiple times during the night but was able to get back to sleep. But i only had 5 of those and now have to wait till Friday to see my doctor.

    The anxiety is the thing that i can't cope with and need any help or advice you can give me. But when i'm able to get proper sleep i don't get anxiety so fixing the sleep would help too.
     
    belize44 and AnnaDove like this.
  2. sarah darwins

    sarah darwins I told you I was ill

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    I used to have terrible sleep disturbance and anxiety problems (I'm sure they're interconnected and tied up with all kinds of physiological things going on in me/cfs). Eventually, during a personal crisis, a doctor put me on a low dose (500mcg) of clonazepam twice a day, with the second pill to be taken at bedtime. It had a really dramatic effect on my sleep. I started sleeping much more easily, much longer, and feeling more refreshed on waking.

    4 years on I still take, and still feel I get benefit from it. It just seems to have calmed my whole system down and moderated the energy/exhaustion swings.

    Clonazepam is not without risks used long-term, but taking it at a low dose seems relatively safe.

    2 PR articles on the drug:

    http://phoenixrising.me/treating-cf...ibromyalgia-a-prescription-for-sleep/klonopin

    http://phoenixrising.me/archives/12200

    The second focusses on the potential downsides, although they seem to be associated with significantly higher doses than I take.

    I would certainly suggest talking to your doc about something like that, rather than a sleep med.
     
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  3. paul80

    paul80 Senior Member

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    That sounds great Sarah. I'll speak to my doctor about it.

    Did your doctor ever try to persuade you to try coming off them or was he happy for you to keep taking them?

    The doctor i seen said they wouldn't give me sleeping pills long term (Zopiclone) so i'm wondering if they would be happy to keep me on Clonazepam. Maybe you just have to show them you are desperate enough that you need something.

    ------------------------------------------------

    I forgot to mention in the original post, i'm going to see an Endocrinologist in august. I wonder if there's anything he could investigate for me that is related to this problem?
     
  4. gregh286

    gregh286 Senior Member

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    Hi Paul,
    I am in similar boat to you. My body temperature drops and I get very dry mouth during bad crashes. Its directly proportional to my fatigue levels. I am getting Sjorgens test done next week or so to see if its related.
    Like most...I wake up totally mangled and get marginal energy improvement during day....for it to start all over next day....just like groundhog day.
    Anxiety does become part of it as well...as a side symptom.
    Certainly symptoms point to allergic reaction or autoimmune attack....albeit impossible to find the trigger...if one exists.
    If I get any progress i certainly will post
     
  5. sarah darwins

    sarah darwins I told you I was ill

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    Hi Paul,
    I was prescribed it by a GP in Canada who reviewed it with me now and then, and ran periodic blood panels for general organ health, but never tried to bring me off it. He appreciated that my health had significantly improved on the drug and saw no reason, at that kind of dosage, to mess with something that was working.

    Last year I moved back to the UK and my GP here reviewed my meds. She was perfectly happy for me to continue taking clonazepam at that dosage. 0.5mg twice a day is low, but I can't overstate how much difference it made.

    I think causes for concern are if tolerance develops (the drug ceases to be effective) or if the dose needed to produce an effect is high.

    I think your doctor was right not to prescribe long-term sleeping pills, From what I understand of those drugs, they're not a good idea for more than short-term or occasional use.

    It's much better to find something which reduces the anxiety and moderates that wired feeling you're describing (some people here call it being "twired" — really tired but too wired to sleep) and allows you to fall asleep and stay asleep naturally.

    Given what you're describing of your current problems, which are pretty severe and will certainly be affecting your quality of life, I would hope your doctor would be very open to trying a low dose clonazepam, just to see if it resolves the problem.

    Reading those articles I linked above, and the comments below them, it seems that the best practice with the drug is to start at extremely low doses and adjust upwards if necessary until the effective dose for the individual is found. It's a drug that won't work for everybody, and if you need a high dose for it to work then you should probably not stay on it, but it's well worth a go to see if you're one of the lucky ones who gets good results with very low dosage.

    Talk to your doctor. I can't see why they would have a problem trying out the drug with you at low dose.
     
  6. paul80

    paul80 Senior Member

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  7. sarah darwins

    sarah darwins I told you I was ill

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    Sorry to hear that, Paul. And surprised. Did he actually explain why he was against a low-dose of this med?

    I've looked at that thread myself and bookmarked it, thinking I'd investigate one day. I just don't know how much it will affect sleep, but almost certainly worth a try.
     
  8. paul80

    paul80 Senior Member

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    He seemed to think a low dose would lead to all the same problems as as a high dose. He said there wasn't really anything he could do for poor sleep and suggested herbal remedies.

    My doctor surgery in general seems really bad for people with m.e. Because there is no cure for m.e they seem to think i should just stop coming to them. They are completely unwilling to try anything i ask them. I really need to change surgery.

    I've also just found out about the "alpha stim" machine which looks very promising: http://www.themicrocurrentsite.co.uk/default.aspx

    Quite expensive but i will probably try it if nothing else works.
     
  9. sarah darwins

    sarah darwins I told you I was ill

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    I've got to say that just sounds like nonsense. Most people who take clonazepam at very low dose have no difficulty coming off it, as long as it's done properly. Of course it has risks, like all drugs (including herbal ones) but they're minimal at low dosages. For me, the benefits have dwarfed any risk.

    I wouldn't discourage you from trying anything that sounds plausible to you, but I can't help thinking your limited energy would be best directed right now at finding a better GP. Do a bit of research, here and elsewhere, see if you can get a recommendation for a doctor with a more open-minded view of ME. It sounds like you're with a particularly poor practice right now, and that's just going to make everything harder.
     
  10. caledonia

    caledonia

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    This sounds like adrenal issues to me. Sleeping pills or clonazepam would only be a band-aid. In addition, over time the clonazepam can deplete melatonin and then unless you know this and supplement with melatonin, your sleep will get worse. In addition, it's addictive and if you ever want to come back off it will take many months of slow and careful tapering, putting up with additional anxiety, etc.

    Sooooo.....I would suggest getting a 24 hour adrenal saliva test to confirm adrenal issues (this is a naturopathic type test - your doc won't know what this is). You can order the test yourself direct online without a doctor (you use the doc provided by the online testing service to sign it for you).

    Then if it's confirmed you can experiment with various adrenal supplements. You don't want to mess with your adrenals if you don't actually have adrenal fatigue.

    After much experimentation, I have found Dr. Wilson's Adrenal Rebuilder to be the best for me. I don't tolerate adrenal glandulars with active hormone such as adrenal cortex extract, DHEA, pregnenolone, etc. - they just make me more anxious.

    In addition, if you have adrenal fatigue, you will likely be leaking out electrolytes, especially magnesium, and this can cause restless legs and also screw up your sleep. This is probably causing the multiple wakings you're having. So also try supplementing with magnesium - any kind except magnesium oxide, which doesn't absorb well.

    Gradually increase until your stools get loose, then back off a bit and that will be "your" dose. It also works better if you spread out the doses several times a day instead of taking it all at once. You may need more at bedtime. I take double the amount at bedtime as an example.

    Also if you continue having dry mouth (and possibly also dry gritty eyes) you can take a high quality pharmaceutical grade or molecular distilled fish oil for that. If you don't address dry mouth, you will start to get lots of cavities.
     
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  11. gregh286

    gregh286 Senior Member

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    Londonderry, Northern Ireland.
    Ask for a sjorgens syndrome test.
     
  12. paul80

    paul80 Senior Member

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    Thanks Caledonia, i done that saliva test a while back and it was fine. But thinks can change so i might try it again.
     
  13. caledonia

    caledonia

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    Since your symptoms are new, and they sound like adrenals, it might not hurt to retest.

    The parts that sound like adrenals are:

    needing to sleep more than average
    waking up multiple times at night
    wakeup at 3 or 4am unable to get back to sleep
    wired and tired
    dry mouth
    anxiety
    stomach issue
    feeling better in the evening
    feeling cold / temperature disregulation (could also be thyroid)

    My doc diagnosed my dry eyes and mouth as "sicca syndrome", meaning something like "dried out". He didn't think I had Sjogrens. As my adrenals improve, I need less fish oil for the symptoms.

    Sjogrens would be a more severe autoimmune form of dry eyes and mouth, also affecting other parts of the body - for example, you may get arthritis type symptoms.
     
  14. paul80

    paul80 Senior Member

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    @caledonia I just spoke to my mother as it was her who ordered us the saliva test and i can't actually remember. She said my test was "off the scale" bad, but she also said she realized afterwards that she ordered the wrong test. It was just a morning saliva test, not 24 hour.

    I remember now that i took a supplement for it called "rhodiola" and it had bad effect on me. It made me very drowsy and my muscles feel weak, i just wanted to lie in bed and sleep. So i stopped that and never done anything else about it.

    So i'm definitely going to get the 24 hour test, i really hope this is the problem.
     
  15. paul80

    paul80 Senior Member

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    Also, why do doctors not give this adrenal 24 hour saliva test?
     
  16. caledonia

    caledonia

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    Doctors are only looking for super bad malfunction of the adrenals - either Addison's Disease or Cushing's Syndrome. Anything else is not considered significant.

    Of course, if you have adrenal fatigue, you know how significant it is. This sort of sub-optimal function falls in the realm of alternative or functional medicine.
     
  17. paul80

    paul80 Senior Member

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    @caledonia
    I've been looking at the tests and there's one that tests Cortisol/DHEA and for an extra £20 will test Secretory IgA.

    There's also another test which is similar:
    "The Cortisol Awakening Response (CAR) test is a new salivary assay available to assess adrenal dysfunction. The CAR test involves measuring five separate salivary samples over an hour after waking, and has been extensively researched and validated as a means of analysing hypothalamic-pituitary-adrenocortical (HPA) axis activity."
    This test is the same price as the basic Cortisol/DHEA test.

    Which one would you reccomend?
     
  18. caledonia

    caledonia

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    I can't tell from your description. Can you post links to these two tests?
     
  19. paul80

    paul80 Senior Member

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    Violeta Senior Member

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