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How many of you have to trick your body when taking medications?

Discussion in 'General ME/CFS Discussion' started by Tired of being sick, May 25, 2014.

  1. Tired of being sick

    Tired of being sick Senior Member

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    Every medication that I have been on works great for the 1st couple of days then all at once My immune system goes on an all out assault ,attacking the medications, by making me feel worse than when I took them in the 1st place!

    So I will stop all meds ,stay in bed for 24 to 48 hours, just getting up to eat or go to bathroom..

    Then I will resume taking the meds,then repeat the process over and over over and over over and over
    over and over over and over again...

    I also radically change the doses from minimum to max to throw my body a curve ball..

    This seems to work the best but I still end up doing the stay in bed quit cold turkey method at least twice a month....

    The only good that comes out of this is that I learn exactly what Symptoms the meds help me with..

    Gabapentin is great at taking my nausea away but that is all it helps with..
    Without it I have nausea 24/7,and only eating gives me relief, but within a half hour after eating, the nausea comes right back..

    Amitriptyline is great at putting me to sleep at a desired time,but that is all it's good for,However I have frequent awakenings through the night,so I am never refreshed and I mean NEVER!

    Tramadal helps a little with the associated pains and fibromyalgia,but does absolutely nothing for my neck and back associated pains

    Andro Gel this helped with my hot flashes when I started taking it but now the
    flashes are back! The gel does absolutely nothing for energy or libido,NOTHING!

    Does any of you all go through this living Hell, with your meds?




    Any of you have this problem
    Last edited: May 25, 2014
    Allyson likes this.
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    definately, like we get a tolerance very quickly but i think our body just adjusts so we need to use things in spurts, off and on i think, especially sleep meds.
  3. barbc56

    barbc56 Senior Member

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    Some medications need time to build up in your system before becoming effective. I know this is true for amitriiptlyline, but not sure of the others.

    Interesting as I have taken antidepression meds. which seem to help for a couple of days after the initial dose, then not so much until it kicks in. I have no idea why but maybe because the medication is new to your body or even placebo? I have had this happen a couple of times when I ran out of my AD and didn't pick it up for a few days. Initially, felt better but then worse.

    If I read your post correctly you are doing this to test if a med works. I'm not sure if this is the best way to find out but I am not a medical professional.
    Barb
    Aileen likes this.
  4. Aileen

    Aileen Senior Member

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    I've been at this a long time. No medical training, so keep that in mind. :) One of the things that has helped me is to learn about what the medication is doing in the body. Is it blocking a hormone, causing something to be digested better, causing nerve cells to fire differently etc. You can't always make the best decision just by connecting the drug to one symptom.

    I have some personal experience with a couple of the drugs on your list. It would be helpful to know the dosages you are taking (or at least prescribed ;)) because some drugs do different things at different dosages. At least they are supposed to!

    Amitriptyline - It is a tricyclic antidepressant. Used for depression at the higher dosages. At lower dosages it is used for migraine prevention, various types of pain.

    I used it successfully for a serious sleep problem too, but that is actually a side effect of the med. I had other problems develop so had to discontinue. Most people tend to feel drugged in the morning from it especially if taken too late at night. The fact that all it seems to do is give you a very short term side effect might suggest you and your doctor re-evaluate this one.

    Gabapentin - this is an anti-seizure drug. Honestly never heard of it being used in connection with nausea before. It is supposed to make nerve cells less likely to over react.

    No experience with the other meds. I can relate to the 24/7 nausea though. Right at the beginning of the illness, I had 6 months of constant nausea. Nothing helped. Eating made it worse. Even slept with a barf bad inches from my head. :vomit: Went away on its own thankfully.

    Because the nausea is temporarily relieved by eating, I would ask the doctor about testing to see if you have a intestinal infection, if you haven't already. Maybe think about a gastroenterologist. At the very least start doing some research on that aspect. There is a whole gut forum here on PR.
  5. Tired of being sick

    Tired of being sick Senior Member

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    I have

    Overload phenomena:
    ●hypersensitivities to light, sound and
    ● especially odors because all odors are made up of chemicals

    and


    Immune Dysfunction
    ●A general ill or flu-like feeling,
    more frequent in the acute onset
    stage of the illness,
    less frequent in the chronic stages,
    most notably post-exertionally
    ●tender lymph nodes
    ●recurrent sore throat
    ●new food sensitivities
    new chemical sensitivities
    ● Intolerance to alcohol and all other street drugs

    hyper-sensitivity to medications and their side-effects
    ●allergies


    Bold wording is the very reason I have to trick my body

    I don't know about the food sensitivities because I always feel like crap
    so I don't know if foods are causing some of the sickness or not...
    Allyson likes this.
  6. Tired of being sick

    Tired of being sick Senior Member

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    Gabapentin is basically the same as Lyrica without the 4 paragraphs of possible deadly side effects...

    I refuse to take any medicine that has not been on the market for at least 20 years.......

    Taking new meds is asking for some serious trouble especially for ME/CFS patients.........

    Andro Gel is newer but I am in the process of getting an endocrinologist to inject the
    Testosterone in me........
  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Lyrica has been pretty good for me, an all purpose med.

    Generally take 150mg at night with sleep meds, it helps sleep but mainly take it for nerve pain i get in my legs that interrupts sleep.

    Sometimes i take an extra dose during the day if i have that brain fog feeling thats turning into a headache and it helps. Also helps with general aches and pains as well as when i have had bad lower back pain spasms.

    Comparing it to neurontin, i would say lyrica is more sedating especially at first and more effective version of neurontin. If one feels over sedated already then i would choose neurontin, tired but wired i would choose lyrica.

    I think meds like these, antiseizure meds are under used in cfs/me, they helps calm the nervous system down and a better option then using benzos during the day etc.

    As for meds listing deadly side effects, they are on most meds as an arse covering exercise.
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    @Tired of being sick when u used andro gel, did u have before and after blood tests on total and free testosterone as well as estrodiol?
  9. Allyson

    Allyson *****

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    a lot of those symptoms yu list are due to POTS - have you had a Tilt table test yet Tired?

    eg odors and sensitivity to light issue can be to the excess adrenaline the body secretes to control POTS...as are tiff muscles , tired but wired feeling at night insomnia etc

    Ally
  10. Tired of being sick

    Tired of being sick Senior Member

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    ^

    Yes I was at 170 before and 460 after
    Allyson likes this.
  11. Allyson

    Allyson *****

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    what do you mean?
  12. Tired of being sick

    Tired of being sick Senior Member

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    Last edited: May 26, 2014
  13. Tired of being sick

    Tired of being sick Senior Member

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    I was answering Heap but your post beat me to it, Lol........
  14. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    thats not too bad, how long were u on it?
    Asking as i was on a compounded T cream which increased my T levels abit at first but after a while it didnt have any effects??
  15. Tired of being sick

    Tired of being sick Senior Member

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    ^
    I am still on it.. I told the doc about 2 months of taking it that I felt absolutely nothing so he ordered blood work to check and it was 460 which is still VERY low since normal levels can reach as high a 1000.........

    I am going to see a endocrinologist in June to get my HGH level checked..

    And I am willing to bet my life that I will have at least HGD or maybe ZERO HGH

    So you could dump a 5 gallon bucket of Testosterone in me and it would do absolutely nothing for me..

    Testosterone is worthless without HGH...........
  16. Tired of being sick

    Tired of being sick Senior Member

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    I'm not doing this to test meds

    I'm doing it because my immune dysfunction forces me stop taking them..

    then

    When I restart the meds it is quite clear what symptoms they are helping me with

    The Tramadal doesn't seem to affect my Immune system,but I still have to play the dosage game with them in order for their effectiveness of pain relieving to be somewhat positive.......
  17. Tired of being sick

    Tired of being sick Senior Member

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    Also there are big lawsuits going on for testosterone drugs such as:
    Androgel Lawsuit‎
    • AndroGel
    • Androderm
    • Axiron
    • Bio-T-Gel
    • Delatestryl
    • Dep-Testosterone
    AndroGel - Drugwatch.com
    AndroGel is the blockbuster gel used to treat low testosterone (“Low T”), but it is linked to an increased risk of cardiovascular problems. Many men filed lawsuits against Abbott and AbbVie.

    One of the most-used medical products to treat Low T is AndroGel. Made and heavily marketed in the United States by AbbVie Inc., AndroGel is prescribed as a testosterone-replacement drug, mostly to men whose bodies fail to produce sufficient amounts of the male hormone.

    The drug was developed by Brussells-based pharmaceutical company Solvay Pharmaceuticals, and the U.S. Food and Drug Administration (FDA) approved it in 2011 for use by men diagnosed with Low T.

    Abbott Laboratories, AbbVie’s parent company, bought the drug from Solvay in 2010 and soon began pumping millions into the drug’s marketing. Within two years, doctors sounded alerts about the drug’s dangerous side effects for older users after many men gained prescriptions as a way to regain their youth or simply boost energy and sex drive.

    One of the biggest risks with AndroGel and other testosterone products is an increase in cardiovascular events like heart attacks and strokes. The makers of AndroGel now face a growing number of lawsuits filed by men who suffered strokes, heart attacks and blood clots after using the drug. The lawsuits state Abbott and AbbVie failed to warn consumers about these risks.

    According to a study published in JAMA, by 2011 nearly one in 25 men in their 60s took testosterone. Doctors blame the rampant advertising.

    “The market for testosterone gels evolved because there is an appetite among men and because there is advertising. The problem is that no one has proved that it works, and we don’t know the risks,” Dr. Joel Finkelstein, an associate professor at Harvard Medical School, told The New York Times.

    AbbVie spent $80 million on aggressive marketing campaigns in 2012, and the gel generated over $1 billion in sales that year. AndroGel is the top-selling testosterone product in the U.S. AbbVie markets it in the U.S., while Abbott markets it overseas.
  18. manna

    manna Senior Member

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    i 've always thought testosterone replacement to be pretty dangerous. folk take it to normalise but it can disrupt hormone levels for six months after stopping its use. also, everything grows, organs included, bigger organs aren't healthy or helpfull. it changes the way people look too and that seems to stay after taking it. thats from friends/aquaintances who've abused roids. probably higher amounts i should think. hormone production is very complex and to just boost one area of it is asking for trouble imo. me/cfs generally means poor digestion...seratonin, 95% of, is supposedly stored in the mucous membrane so could be expected to be depleted with gut issues. the master gland and its hormones regulate the rest i think...only the body can do that in balance.

    i agree that many young men are unfortunately interested in steroids. i see the men's, quotes, "health" magazines plastered with pics on the front of steroid built males...this is NOT healthy. I even emailed one magazine pointing this out.

    heres one way to boost testosterone http://www.ncbi.nlm.nih.gov/pubmed/12659241?dopt=Abstract takes 7 days for serum testosterone to return to normal post ejaculation.

    they say to take some meds on a full stomach...so they don't damage the stomach lining. to me thats tantamount to forcing a poison on your body. in the bush, if you want to test if somethings ok to eat, first you wet it and rub it on your skin, if no reaction occurs, you then rub it on wet lips, if no reaction occurs, you hold it in your mouth for a while and chew maybe, if this feels alright, you can eat a little and then increase. id guess very few if any meds would pass the test without causing some kind of reaction. the body can't lie. personally id listen if my body said "no". meds might be necessary occasionally but, constantly, for a chronic condition, is pushing it i think. they can become a source of problems and stops you finding the cause. of course some folk are desperate and alternatives are not always known. id guesss that there is generally an alternative though.
    Last edited: May 27, 2014
    Tired of being sick likes this.
  19. Allyson

    Allyson *****

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    I have seen livido retucularis as symptom of EDS I am failry sure - EDS also causes OI

    I will try and chase up the article for you and post it here

    best

    ALy
  20. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    once on TRT your not suppose to stop. the TRT forums mostly are anti and transdermal testosterone and are pro small dose injections done 1-2 times a week, generally a doc gives u 1 large dose that is suppose to last 3-4 weeks, which is crazy, causing big swings in hormones.

    i think if one got on the right testosterone ie injections then it should work well. Theres more then a few guys that dont absorb creams well.

    Once one is at a good level many are happy with that if its the only issue. I havent heard its worthless unless on GH, out of the 2 i here guys more often say testosterone is alot better then GH, but if u dont have to choose then use both.

    TRT if done right isnt dangerous and improves quality of life and many other health issues especially compared to living with very low hormone levels, which has an increased risk of many health issues eg cardiac, prostate, immune function, osteoporosis etc. The whole thing about being dangerous is when wires get crossed between TRT and the sort of thing that bodybuilders do which is in a totally different ball park. its all about having the right balance. Also a commonly forgotten thing about older men and trt is that with age testosterone can change and increase estrogen levels, if these arent monitored and treated with meds like arimidex then there increased risks of heart disease etc but its probably not to different to guys that need TRT and dont get treated??

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