I am still new here and I have been reading posts from you guys with great interest. It seems you are all on a cocktail of drugs! I think most people agree this isn't good. To let you know, I get by by using a homemade OXIDISED cannabis e-cig liquid (not cannabis, oxidised cannabis) although regular cannabis works good too, but you are more wasted
I also use 8mg of Toviaz a day (and catheters) to regulate my bladder, I went from 25 pees a day to about 5, and I can pretty much make all night without getting up.
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LessThanRich
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I agree about how more medication is definitely not better. Exercise, movements and natural supplements seem to be the best thing. I am in the same boat as you with catheterization and a medication for the bladder. I now only get up once per night which is amazing and it doesn’t control my life anymore.
I use a wheelchair almost exclusively except when absolutely necessary. I don't even know if I have lost anything leg level as a result. I still do ok on crutches, but its tiring and not fun. Way prefer my life on wheels.
Medical cannabis definitely helps and doesn;t come with nasty side effects and other related problems that prescribed meds have. For non-smokers I can highly recommend my tincture, it can be used as drops under the tongue as well as in an e-cig. We are still testing the capabilities of this. My doctors are all on board and agree it could be the best solution to how I choose to cope despite the massive illegality in France.
If AMN-ers can make do somehow without a wheelchair, however hard it is, then I think it is better than going totally to a wheelchair. As we get older the lack of use means that other things get affected, such as circulation. I have been recovering from a leg-break a year ago and the lack of use of my legs has led to other issues, such as oedema (water retention).
I do realise that use of a wheelchair (or, my case an electric mobility scooter) can become more or less essential for anything other than very short walking distances, for some AMN-ers.
But AMN-ers at earlier stages of this disease than me (I am a 35-year veteran of AMN) should try and keep legs in use as long as absolutely possible. That means using stairs if you can, and going to the gym.
I think a wheelchair should be used as a tool for people who need to achieve a certain level of activeness. I know before my chair I used to arrive places and sit in the same place the whole time and have to wait to people to come to me. Not that productive if you are an outgoing person. I can still use my legs my I choose not to. I limped about for 7 years, that's enough.
People have said to me "use your legs or lose them" ... I'm like "lose what? Already lost". I would prefer to be a "normal" active person on wheels than a passive wall flower without.
I think I have posted on this before but it's worth repeating.
I was on Oxybutynin to control bladder urgency. Then I heard that Oxybutynin was a class of drug called an antimuscarinic and that it had been shown to cause cognitive defects and even dementia.
I spoke to my urologist who confirmed this and said in the U.S. airline pilots were not allowed to fly if they were taking an antimuscarinic. I subsequently went to Mirabegron an I have been on this for at least 1 year now. It works for me and increases bladder capacity for me from about 100 ml to 300 - 400 ml.
An excerpt says: "A recent study in elderly people showed that those taking anticholinergic drugs had significant deficits in cognitive function and were likely to be classified as mildly cognitively impaired, although not at increased risk for dementia. The authors concluded that before prescribing acetylcholinesterase inhibitors, all other drugs with anticholinergic properties should be stopped [5]."
The fact that this study was for "elderly people" may have influenced the findings I suppose, but since I am probably officially in that category it was good enough for me at least! May as well keep my marbles for as long as possible.
Toviaz can give you a dry mouth as a side effect. But you take in the evening so you "suffer" this when you are sleeping, not the end of the world. I don;t think there are any other side effects.
I agree with you 100% on this, Chris - Myrbetriq (mirabegron) is a great medication. Apart from the life-preserving medications I have to take (HC and fludrocortisone), it's my favorite drug. I went from having to wake up 4-5 times every single night to urinate to about 1-3 times. That is a life changing development.
Actually, I also have moved permanently to using a Conveen penile sheath and a "night bag", so I never need to get out of bed. Convenient for us fellows. I produce sometimes 800 ml of urine in a night.
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LessThanRich
MIN-102 trial: 12 week update
