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Never taken an Rx--what do I try?

Discussion in 'General Treatment' started by EMilo, May 7, 2013.

  1. EMilo

    EMilo Elizabethmilo.com

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    Hi everyone,

    I am basically wondering what drug people would recommend someone definitely try. I have been sick for a year and a half and have refused all Rx suggestions because I have a tendency to get horrible side effects or allergic reactions. I am on tons of supplements and a very restricted diet. I'm trying to do everything right, but have gone steadily downhill. My biggest problem is unrefreshing sleep, followed by muscle stiffness and a feeling that my muscles just don't work. Also, of course, pain etc. I am housebound and generally feel like I am very sick every single day. Struggling to have the energy to function and the ability to stay mobile.

    It's time for a drug, I think. Any suggestions? Thank you!!
     
  2. SickOfSickness

    SickOfSickness Senior Member

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    A sleep medication, but only if you tried melatonin and other supplements and tricks (like limiting blue light for hours before bed). Which one depends on if your problem is getting to sleep, staying asleep, or whatever specifically.
     
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Elizabeth,

    Have you managed to find a good doctor?

    I think it would be hard to suggest medications without having some good testing done to see what are the critical things that need to be addressed. We are all unique and respond differently to many medications.

    So, tell us some more if you feel like it!

    Sushi
     
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  4. robertpcx

    robertpcx

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    What supplements are you taking?
     
  5. wastwater

    wastwater Senior Member

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    try vitamin d
     
  6. Lotus97

    Lotus97 Senior Member

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    I made one of the biggest recoveries during my 16-year illness during a period where I was getting 10-11 hours of sleep, but due to the medication I gained 30 lbs and had high cholesterol. I think trazodone would be the sleep med I'd recommend first and after that maybe Elavil/amitriptyline. There's still a potential for side effects with either of the ones I mentioned, but nothing like the one I was taking where gained the weight/cholesterol. Also, certain generic brands are better than others. I'm assuming you've already tried supplements like melatonin, etc. There are a lot of supplements for sleep. They don't work for me, but I'd definitely try those before any prescriptions. I only take prescriptions because I've tried all the other options.
     
  7. Ema

    Ema Senior Member

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    Low dose Flexeril has helped me sleep and also can help with muscle pain and stiffness. It's a muscle relaxer that deepens stage 4 sleep and also functions a bit like an antidepressant.
     
  8. Dreambirdie

    Dreambirdie work in progress

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    If you're sensitive to medication, it might be best to steer clear of them unless you have A REAL GOOD REASON to take one. I have horrible reactions to most drugs, but sometimes my sleep gets so bad, that finally after 40 years of not taking any pharma drugs, I was tempted to try a few again. In my case it was BAD idea, with only negative effects.

    Trazadone (just one 25 mg pill) gave me severe, nearly suicidal depression and agitation. I did not sleep much at all, and spent the entire following day balling my eyes out.

    Klonopin made me very agitated and woke me up even more. NO relaxing feelings there.

    Atavan wasn't as bad as klonopin, but it made me very dizzy and hung over the next day, and then gave me a rebound effect that felt like a bad case of ADD, after just one 5 mg dose.

    Hydrocodone (which I took for pain after a wisdom tooth extraction) actually gave me a MIGRAINE. Thanks a lot!

    Just because it's a drug, doesn't mean it will work or do you any good. Sometimes drugs don't work or make you worse, especially if you are chemically sensitive and prone to bad reactions from drugs.
     
  9. arx

    arx Senior Member

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    I think the first way would be to address the sleep issue. I've seen myself feel better the next day if I get some sleep. I'm not expecting refreshing sleep,but just enough good sleep. For sleep, the usual aids are Melatonin, Benzodiazepines(Valium,Klonopin,Ativan,etc.),Ambien. Since you are very sensitive, if I were you, I'd try melatonin. The benzos really work well for the muscle stiffness, since they work as a muscle relaxant. I am also sensitive to medications, but have found a mix which works better than before for me.

    Also, there is something useful I've noticed. When I was on supplements, and I mean a ton of them(mostly methylation and ATP based),I was very sensitive to medications such as Lamictal and many others. But after I quit the supplements and starting taking the same medications,I was not sensitive. That doesn't mean it might be the same for you,but just thought I should mention.

    I think you should go see a good doctor and discuss your sensitivity with him/her. Things work differently for each of us.

    Good luck!
     
    EMilo likes this.
  10. tatt

    tatt

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    you mention lots of supplements and a restricted diet and it isn't really possible to suggest without knowing what you've tried. However i can tell you that my sleep improved after I read Dr Gominak's theories and got my vitamin D levels right http://drgominak.com/vitamin-d. Also you may suffer from nighttime reflux - it's possible to have that without realising it. http://en.wikipedia.org/wiki/Gastroesophageal_reflux_disease Suspect it if you wake in the middle of the night but aren't depressed. You can test by raising the head of your bed by at least 4 inches by putting blocks of wood under one end. If your bed has feet remove them. This will produce a gradual improvement if you have GERD.

    If you feel anxious take warm, not hot, magnesium sulphate (epsom salts) baths - magnesium is easily absorbed through the skin and it won't cause diarrhoea. Soak for 15 minutes and pat dry. You need a lot of salts, about 500gm per bath but it's possible to buy 25kgm sacks if you try it and it helps. This is also good for muscle pains so I'd suggest you try it anyway.

    I'm also a fan of NAC and believe everyone with ME should be tested for helicobacter pylori.
     
    EMilo likes this.
  11. adreno

    adreno 3% neanderthal

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    Not a drug, but you might give Magnesium Glycinate a try. Good for sleep and muscle stiffness.
     
    EMilo likes this.
  12. EMilo

    EMilo Elizabethmilo.com

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    Whoa, thank you everyone! So sorry I haven't responded sooner. Lack of sleep has me devastated lately. After all this time of "bad" sleep, suddenly it is exponentially worse every night until I only had 3 tossy turny hours last night. I need help.

    SickOfSickness, I honestly have tried every possible intervention that is not a Rx. I have never had trouble falling asleep, just staying asleep. My brain is constantly in an awake state, even if I think I'm sleeping (I wear a Zeo headband, of you know what that is).

    Sushi, I have started to wonder if there are good doctors out there. :( But, I have seen multiple sleep doctors as well as countless doctors for my ME/CFS. I have sleep apnea, but the mask keeps me UP ALL NIGHT. Without the mask, my throat closing keeps me up all night. One doctor recommended Ambien, another said, No way ~ not for you. Another doctor recommended Cymbalta, another doctor said, Not for sleep and you're not depressed. Another doctor recommended Amitriptyline... I'm just confused, terrified of long-term psychotropic drugs, but have reached a point of sleep deprivation that is making me panic. AND, the more my symptoms get worse, the more depressed I get, so now I think maybe an antidepressant is the way to go. But only if it helps sleep!

    Robertpcs, the list pf my supplements is very long. Let me know if you want to hear it. :) For sleep specifically, I am taking magnesium, melatonin, phosphorylated serine, plus drinking tart cherry juice. I have also tried valerian.

    Wastwater, I do take 4000iu of vitamin D a day (even though my levels are normal). I never knew it helped sleep, good to know.

    Lotus97, thank you for the advice. Both trazodone and Amitriptyline scare me, but I think it might be time to try. I have this odd occurrence at night: the room is black, but, when I close my eyes, I see lights, colours, moving lines. Basically, if I open my eyes, it is darker than if I close my eyes and I keep thinking there has to be something off in my brain to cause this...

    Ema, Flexeril is interesting. I haven't thought of that for sleep... How low can you go, dose-wise? I am the type that gets drunk on a barman's fart, if you know what I mean. Everything makes me feel weird!

    Dreambirdie, I am so sorry you experienced all of that, but thank you for sharing ~ my body is exactly the same way! I feel ridiculous telling people how vicoden gave me migraines and half a norco, even though it's the same drugs, caused such severe respiratory depression that I very nearly went to the ER. 4mg of codeine made me high as a kite and then caused the I-can't-breathe thing again. The thing that has me considering antidepressants now after all this time is the bad sleep, but also the depression that has crept in... I feel like if I could get some space from the grief, I would have some hope for recovery. No hope is a killer.

    arx, thank you for the tip ~ very interesting about not being as sensitive when off the supplements. Benzos, eh? Ok... they scare me, too. I refuse to try Ambien and I've been on melatonin all year, so I will let you know which I go for...

    Tatt, thanks for taking the time to write all that! Very interesting about reflux. I never considered it. I have a wedge pillow. Maybe I will try sleeping on that for a few nights and see what happens. I will check out those links, too. What is NAC? Oh, I can google it. Helicobacter pylori is nothing I ever considered either! I definitely take a lot of epsom salt baths, at least I have one thing down. :)

    Adreno, thank you for the advice ~ I do take 400mg of mag glycinate a day.

    Ok, sorry this is so long, but I really wanted to respond to each of you since you took the time to respond to me. Thank you thank you!!
     
  13. Lotus97

    Lotus97 Senior Member

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    I think that they're some of the safer sleep meds, but after hearing Dreambirdie's account it's probably still a good idea to be cautious.
     
  14. ukxmrv

    ukxmrv Senior Member

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    Elizabeth, when I started on MAF314 (yoghurt) the symptom that improved straight away was sleep. It's new and a hard to get and make but if you are allergic to drugs possibly something to consider.

    The p-serine is a controversial one as it used to be taken by patients who are hyped at night and the theory being high cortisol. I have low cortisol and if I take it at night it leaves me very groggy the next day and flattened. Have you had your cortisol tested?

    Also with your sleep are you trying to sleep at the right hours i.e. if you could sleep any 8 hours out of 24 when would they be? I'm just wondering if you are out of synch with night sleeping. My best hours for sleep are between 5am onwards.

    With your supplements is there a basis to their use (i.e. are you trying a particular regime or the scattergun approach). In my case taking lots of supplements really upsets my gut now and especially if I take them at night. Epsom bath salts left me worse off.

    Sleep apnea - have you had any sort of investigations for your poor sleep.

    Just a few ideas and you may have already been through them.
     
  15. taniaaust1

    taniaaust1 Senior Member

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    Yeah you are at the point where you NEED to do something about sleep.

    Your brain state.. sounds like you are a little over wired.. Klonopin may be part the answer to help calm your brain down. (If you take it..do read previous posts at this site about it about the warnings as there are not so good ways to use it). You'd probably thou need in in combo with something else.

    Get your pain treated better if possible as that must affect your sleep too.


    If you have IBS-C Do not trial Amitriptyline!! (a low dose, short term trial of it prolapsed my bowel as one of the physiological effects of that drug is it slows down bowel peristalsis).

    Dr Sarah Myhill has a good page on ME/CFS and sleep somewhere online and about the supplement etc combos which can be used for it. Seeing you have trouble staying asleep.. maybe trial slow release melatonin over the normal kind. Ive heard some say that slow release melatonin works better for them (for me its the opposite).

    You are seeing what is called hypnagogia images. http://en.wikipedia.org/wiki/Hypnagogia (this is something which some actually aim to have). This can mainfest in far more ways then what you are currently experiencing some of them quite scary. (Im quite familiar with things like hypnagogia as Im into Lucid Dreaming). Getting hypnagogia this means your brain is stuck in a transitional state between sleep and wake. (your brain waves are a bit messed up.. maybe that's something Klonopin ..which is probably the most commonly prescribed benzo for ME/CFS which is usually well tolleranted by us can help with)

    I suggest to also give over the counter antihistamine doxylamine succinate a go for sleep (but be aware that if used all the time one builds up tollerance to it so dont use all the time).

    After being on a combo of benzo Temapazam, melatonin and Doxylamine (if you trial anything intollerences build up too make sure you rotate your drugs), Im now on just on clonidine (a BP balancing drug which can drop BP if one has orthostatic hypertension with the ME) which many doctors use off label for sleep. (probably not a good idea thou if you have low BP with no high BP spikes.. good for those who have autonomic dysfuntion and get both high and low BP)
     
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  16. Sabrina

    Sabrina

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    Elizabeth,

    Not sleeping is just awful. I am also super sensitive to meds and wanted to share my experience about some meds I tried.

    When I took melatonin I got depressed, and when I tried phosphorylated serine I had insomnia ALL NIGHT and was super groggy during the day. Flexeril caused me major mood swings.

    I understand the hesistancy about Rxs, but I did have great results with a low dose (0.25-0.5) of Alprazolam. None of the other benzos work for me.

    Also, since you're in Seattle, try medical cannabis. An indica strain will be great for sleep. This has been the most successful medication for my sleep, pain, and migraines.

    Best,
    Sabrina
     
    EMilo likes this.
  17. arx

    arx Senior Member

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    Wow,you guys have medical cannabis available. Lucky!
     
    EMilo likes this.
  18. EMilo

    EMilo Elizabethmilo.com

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    Ema, I tried Flexeril twice. I'm very proud of myself. ;) But, this is my crazy body: I tried 1/8 of a 4mg pill and it drugged me for sure and made me feel spacey (not fun spacey, unfortunately, like the pain pills I used to take, but icky spacey)... Then, a few hours later, I was wired. I tried it in the late afternoon because I wanted to monitor the side effects. It did seem to make my breathing a little tighter, but I still think I may try it again before bed this week. Fingers crossed!
     
  19. EMilo

    EMilo Elizabethmilo.com

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    Hi ukxmrv, Thank you so much for the ideas! To answer your questions, my cortisol did show it was high at night, but the PS hasn't helped (after 30 days).
    I try to sleep between 11pm and 730am. No matter what, I am awake at 730am when my husband and dogs get up.
    I'm taking the supplements my doctor tells me to take. I don't think it's any protocol ~ just trying things. I've been taking the same ones for 8 months with no improvement. Probably time to change it up.
    I do have sleep apnea and use a cpap, but it is a nightmare and makes my sleep worse to have a mask attached to my face.

    I think I'm too tired to research and try other things...
     
  20. EMilo

    EMilo Elizabethmilo.com

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    Thank you for letting me know this. Amitriptyline was my #1 thing to try, but I have IBS-C and low BP, probably not a good combo for Amitriptyline.

    I WILL try slow-release melatonin, thank you!

    My husband is going to get me some doxylamine succinate today. What's the lowest dose possible? I'm also going to try taking potassium, which I don't already. Any recommendations on type or dose of that?

    And guess what, I seemed to have GREATLY improved the hypnagogic problem by not staring at my phone screen for 2-3 hours before sleep (I was wearing amber-lensed glasses, but I guess it wasn't enough)!~
     
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