Medications and how to get them

  • For years now, people with ME have needed to source medications that are not always available to them. This goes beyond supplements. Some use overseas pharmacies and are able to import on prescription into NZ. Does anyone have an online pharmacy that they have found helpful? Thanks. 😊

  • What kinds of medications do you have in mind?
    There are many supplements that are only made in the US - one of my doctors referred me to iherb as a place to order them. I also get PEA from a compounding online pharmacy in QLD as it's the only place in Australia that sells it. But prescriptions, I'm not sure about.

  • I use online sources and haven't had difficulty as long as the provider ships to Australia. I used to get friends to get some things when they were overseas. I don't know how it's working these days with covid.

  • Not sure what medication you’re referring to?

  • I have a medication intolerance with absolutely everything I have tried, a Tick Tack is as the best I can manage...It has gotten very expensive for me trying a few things not on the PBS only to try one and never again...

  • @Kalinda said in Medications and how to get them:

    I have a medication intolerance with absolutely everything

    This apparently is not uncommon amongst CFE/ME from what I heard, ie drug and alcohol intolerance.

    I had a very bad reaction to meds (not typically used for fatigue-based disorders) that a GP prescribed on an 'off script' basis. Highly addictive, and took me around 2 years to get off and fully recover. Very very bad reaction.

  • Yes that's quite right LHM, all and every of the medications I have a chemical sensitivity to. 12 months ago I had to give up my 2 afternoon midstrenght beers after about 46 years. I use to really enjoy them however 2 midstrengh beers felt like 6 heavies. A Internal Medicine doctor suggested I try Ginsing 5500, huh I tried one , felt like a 1000 coffees. I have just tried Melotonin 2mg for insomnia. Very very bad dreams slept less than normal and was buggered for a few days. I have had tried about 20 different prescribed meds over the past 2 years, all with instant intolerance...

  • @Kalinda Yes I know what you mean. That’s why I’m hesitant about trying anything now especially when I’m not having any guidance from a health pro. My latest was D.Ribose, supposed to be very safe, no likelyhood of any side effects - wrong! And interesting to hear about your dreams with Melatonin. Same here; very vivid and heavy duty, and my sleep pattern was all over the place.

  • @Kalinda said in Medications and how to get them:

    I have just tried Melotonin 2mg for insomnia. Very very bad dreams slept less than normal and was buggered for a few days.

    It's strange isn't it? A drug meant to help you with sleep actually interferes with it. I also tried Melatonin. It ended up fragmenting my sleep into 1-2hr blocks. <bin>

    There is a drug I have heard of, which is only available through the strictest of conditions (so I've heard). Xyrem, which has an active ingredient GHB (gammahydroxybutyrate). From what I've heard, you're best to take this while in bed and ready for sleep, ie it apparently works that fast. It's aimed at getting you REM sleep (as the brand name suggests).

    One sleep specialist had some good advice to the contrary. Don't do sleep meds. They'll work to start with, then you'll eventually lose that effectiveness, then you'll go back to where you were, but now with a drug habit. 😕

  • @Long-Haul-Mono I haven’t heard of that one, and the sleep specialist is right. I went back to taking sleep aids a few months ago and yes now they aren’t working as well, plus I have gained a dependency. I’m currently taking Snuzaid tabs (Diphenhydramine hydrochloride) and trying to find that balance between getting to sleep and not having the hangover the next day. I’ll take note of the one you mentioned though …..

  • @Long-Haul-Mono I’ve just read and realised what that drug is. Wouldn’t go near that one. I always go for the more gentle approach.

  • @Glimmer It's actually pretty gentle I believe. It is the same ingredient as Benadryl which is a antihistamine and is sometimes used as a insomnia sleep aid due to it's drowsiness effect .

  • I assumed Benadryl liquid form would be the ticket. I tried 10ml last night as I had to undergo a at home sleep study and had discussed I would try it if I couldn't sleep. I have had a typical medication intolerance day, really hit me hard. I did sleep still a bit shabby during the study but I did. I returned the machine today only to be told the machine didn't work and I will have to do another...Anyhow , pretty bad medication reaction...

  • @Kalinda Sorry to hear about the med reaction. Very frustrating isn’t it. And then to go through the study again because the machine wouldn’t work. Grrr.

  • Yeah Glimmer, I think they keep adding horses to my merry go round. Grrr... I was sure I had been on all of them...

Log in to reply