Hey guys - I'm sorry for the essay but I've run out of places to turn...
I have suffered from HH for as long as I can remember, and was 'officially' diagnosed with chronic idopathic HH about 5yrs ago, when I realised that not everyone had constantly soggy hands and feet! Looking back, we realised I had always had it (my mum said 'you always had clammy hands as a kid'!). It's more of a problem now I'm older, as I find it hard to wear nice shoes, shake peoples hands, or wear anything near my armpits that's not plain black to hide the sweat patches.
Although saying that I do sweat *everywhere* and not even necessarily when it is hot - I've had serious episodes in the snow!.
I've also tried all the available UK (NHS) treatments:
I sweated off the Driclor before it could dry, and as I also suffer from night sweats it was pointless really (I just turned 30 so it's definitely an HH thing, goodness knows how bad menopause might be haha!)
I found that the strength of the glyco tablets I needed to take to be dry meant that my eyes dried out and were sore, and my head was too fuzzy to do my job, so I had to stop.
As a last ditch they also gave me beta blockers which were really horrible as they made my heart flutter and didn't work at all on the sweating.
The only thing that really worked for me is ionto - I used to have to trek all the way into hospital but thankfully I saved up for a machine which I have had at home for the last 3yrs. The compensatory sweating is bearable as the compromise to trench foot!
However this year ionto isn't working. So I went to my doctor and he prescribed me some glyco to add to the water - it's the only treatment left in the NHS database for HH that I haven't had (and I also now know more about HH than my doctor, so he just gave it to me)
PROBLEM: I have 3 vials of 1g powder which need to be made into a 0.05% solution, and no instructions for how to do it. Does anyone know? I have found various things online but it seems that I might need to be some kind of chemist to do it (adding ethanol & distilled water balancing the ph with hydrochloric acid??). It looks like mostly hospitals make up the solution for ionto use there and as the solution is only active for 14 days you'd need to make smaller amounts to use - I've seen from forums here that some people crush up their tablets and add to water but as mine is just a free powder already I'm not so sure... (plus it says on these vials that this powder is NOT to be ingested, so I think there is something extra/different in the tablets)
Does anyone know?
Don't suppose anyone has a PhD in Chemistry to confirm?
Otherwise, anything you can recommend would be most appreciated. It seems I have broken the NHS now. It doesn't look like we'll get MiraDry any time soon, and even if you pay for private treatment the UK only allows botox for armpits, not hands or feet...
Thanks in advance, any info you can share is super appreciated (even if it's not about the glyco solution!)
I have suffered from HH for as long as I can remember, and was 'officially' diagnosed with chronic idopathic HH about 5yrs ago, when I realised that not everyone had constantly soggy hands and feet! Looking back, we realised I had always had it (my mum said 'you always had clammy hands as a kid'!). It's more of a problem now I'm older, as I find it hard to wear nice shoes, shake peoples hands, or wear anything near my armpits that's not plain black to hide the sweat patches.
Although saying that I do sweat *everywhere* and not even necessarily when it is hot - I've had serious episodes in the snow!.
I've also tried all the available UK (NHS) treatments:
I sweated off the Driclor before it could dry, and as I also suffer from night sweats it was pointless really (I just turned 30 so it's definitely an HH thing, goodness knows how bad menopause might be haha!)
I found that the strength of the glyco tablets I needed to take to be dry meant that my eyes dried out and were sore, and my head was too fuzzy to do my job, so I had to stop.
As a last ditch they also gave me beta blockers which were really horrible as they made my heart flutter and didn't work at all on the sweating.
The only thing that really worked for me is ionto - I used to have to trek all the way into hospital but thankfully I saved up for a machine which I have had at home for the last 3yrs. The compensatory sweating is bearable as the compromise to trench foot!
However this year ionto isn't working. So I went to my doctor and he prescribed me some glyco to add to the water - it's the only treatment left in the NHS database for HH that I haven't had (and I also now know more about HH than my doctor, so he just gave it to me)
PROBLEM: I have 3 vials of 1g powder which need to be made into a 0.05% solution, and no instructions for how to do it. Does anyone know? I have found various things online but it seems that I might need to be some kind of chemist to do it (adding ethanol & distilled water balancing the ph with hydrochloric acid??). It looks like mostly hospitals make up the solution for ionto use there and as the solution is only active for 14 days you'd need to make smaller amounts to use - I've seen from forums here that some people crush up their tablets and add to water but as mine is just a free powder already I'm not so sure... (plus it says on these vials that this powder is NOT to be ingested, so I think there is something extra/different in the tablets)
Does anyone know?
Don't suppose anyone has a PhD in Chemistry to confirm?
Otherwise, anything you can recommend would be most appreciated. It seems I have broken the NHS now. It doesn't look like we'll get MiraDry any time soon, and even if you pay for private treatment the UK only allows botox for armpits, not hands or feet...
Thanks in advance, any info you can share is super appreciated (even if it's not about the glyco solution!)