My story - girl suffering from generalised HH :)

chocbunny · Newbie User Joined: Mar 19, 2008 Posts: 3

Hi all,

Sorry this is a bit long, but please bear with me, i just had so much to say!

After reading all of your experiences I felt inspired to add mine. I am a 24yo female with generalised HH – that is I sweat everywhere - face, underarms, back, tummy, groin, backside, arms, feet. I guess you could call it mild/moderate as it doesn’t stream off me (except when I’m exercising, in which case I don’t care that everything is soaked as it just looks like I’m working really hard!). But I certainly get sweat marks everywhere. It’s worse in hot weather, when I do more than 5 mins of exercise, when I’m nervous - all the usual times. And sometimes it’ll just happen when I’m totally relaxed. I’m not overweight, I’m fit and healthy – its just something that happens.

I was lucky that mine developed as an adult as I can’t imagine how hard HH would be to deal with in a school situation. I noticed it developing a few years ago, starting with my underarms and gradually becoming my entire body. I went from a colourful wardrobe to all black. Shopping was a nightmare. Not only could I only buy black, it had to be a certain type of black. The type of material, the deepness of the black, and the style of the clothes meant that buying clothes was a constant struggle. I can’t tell you the number of times I saw a gorgeous top that I couldn’t buy because it didn’t come in black. I actually got into the habit of pouring water onto clothes I bought to see if they would hide sweat marks or not, and chucking out the ones that didn’t pass the test. I’m glad that I’m a girl as I can wear singlets in the office, if I had to wear long-sleeved shirts I don’t know what I’d do.

I started to refuse certain invitations, like a cycle tour through wine country, or watching a sports game in the middle of summer, because I knew there would be no way to hide the sweat. Car trips were an absolute nightmare, when it first started I once sweated through jeans – no way to hide that. I’m constantly in singlets as I’m always hot, where everyone else is in jumpers looking at me like I’m crazy. I constantly go to the bathroom to check I’m OK. I always bring a change of clothes. Plastic seats are bad bad bad, I always leave a big sweaty imprint. The few people I told thought I was over-reacting as I became so skilled at hiding it they never saw the sweat marks.

I know I have to live with the fact that I can’t go everywhere I want, or buy anything I want. I’m OK with that, I still have enough fun. I’m know I’m supposed to feel lucky that apart from the HH I’m healthy, but its something you have to deal with everyday and it gets quite hard.

Just a week ago, I went to the doctor and he gave me probanthine. Good tip – find a good doctor who knows about HH (these are rare), or like me, find one that listens to what you suggest as it was me after countless hours of research that suggested he give me probanthine. I’ve only been taking it a week, but so far it has been a godsend for me. I take one pill in the morning and it pretty much sets me up the rest of the day. I don’t take it when I know I’m not doing anything that day as I want to prolong the time it is effective. Even if they eventually stop working, any time off from this condition is fantastic. Dry mouth? Sure! But that’s a very small price to pay.

Irony is that on the day I first wore a coloured top, no one commented! I think that not as many people notice the constant black-wearing as you think. I actually asked someone and she said she never noticed that I always wore black, because I always wore bright jewellery, or a coloured singlet underneath. But being able to not constantly worry has boosted my confidence to no end.

Just my two cents, probanthine might not work for you – but it could. I’m about to go travelling around the world and I know that I will have a much better time not having to constantly worry about sweat marks (provided it keeps working). Just remember that people may notice less than you think, and if they do – the majority will either not care, or just feel sorry for you, which I didn’t find that bad. Anyone that is cruel is just not worth it.

If you want to know anything, just ask me, we all need to be here for each other!

HH · Newbie User Joined: Jan 07, 2008 Posts: 89

Thanks for writing your story chocbunny, I'm glad you found something that works. Good luck with the traveling, bring back lots of pics Very Happy

tbanner523 · Posted: Thu Mar 20, 2008 12:09 am Post subject:

Just a question: I have generalized HH too, and have not tried probanthine. I tried Ditropan in the past but, since it stopped my sweating everywhere, I got really hot all of the time, and my body got all red! Does this happen with you on probanthine?

chocbunny · Newbie User Joined: Mar 19, 2008 Posts: 3

Hi, that hasn't happened to me, but i work in an air conditioned office so am not outside all the time. I also constantly drink iced water.

It is summer here and quite hot, and i have been to town during my lunch hour and rushed around and i was still fine. I sweated a tiny bit but it was waaaay less than normal. I'm always slightly rosy, so being red doesn't bother me as much as the sweat. I think if your body needs to sweat, it will. Maybe try lessening your dosage? I think its a fine line figuring out how much you need to take to mostly stop you sweating, but at the same time lessening the dry mouth and other side effects. I only take one 15mg tablet in the morning and thats it.

I think if i were travelling to a tropical country, without access to cold water and shade, i might think twice about taking it.

clack013 · Newbie User Joined: Dec 18, 2006 Posts: 54

Hey I never thought I would come across a girl that is pretty much going through what I am but that sounds exactly like me. I'm 22 y/o, and just like you I was mostly fine through high school and all that (had palmar plantar hh but not full body) but then when I turned 19 and went off to college it spread.
I am just like you, not overweight - work out regularly. And trust me I know the feeling of sweating through jeans haha, most people wouldn't think that was possible. I def wear everything based on how well it hides sweat which sucks cuz I don't want to be that guy wearing black every day, so sometimes I try to mix it up and maybe bring a jacket or something that I can put on if things get out of control. I have taken oxybutynin for 3 years and I know like you mentioned dry mouth is a small thing to deal with but I was taking such a high dose for a while I could hardly talk without water and gum and I got horrible sore throats. I also apply lots of aluminum chloride basically wherever I can.

spawn · Newbie User Joined: Jul 12, 2007 Posts: 59

travell around the world. thats a dream of mine, someday i going to do it either little by little or all at once when i can afford the time and money. have fun and share your experiences with us if you could. i'd like to know how it turns out for you

Gringo · Newbie User Joined: May 01, 2008 Posts: 15

thats very intresting, I suffer from exactlly the same. I have had many a embarissing situation, i'm 25/m and sweating though jeans is horrible and lets off a bit of a smell, I sort of get up very slowly so that the air doesnt push the smell around.

I was in a pub once, i got up and the chair had a big patch on it, i felt so stupid and embarrised.

Its very difficult i keep hearing of all these tablets and wipes etc, I was going to get some maxim but now this sounds very good.

I have a very good gp so i may ask her about this, just to claify I am not over weight, but i could go for a 5 min walk around the block and get back in the door and be soaked though, its as tho my body doesnt know when to cool down.

This sounds bad but if my house is empty and i have had to walk somewhere, i will basiclly rip off my clothes and sit in front of a fan.

is that what your like?

Aramid · Posted: Sun May 04, 2008 5:22 am Post subject:

I am an 18 year old nursing student in the Philippines. I had upperbody hyperhidrosis which involves the face, palms, back and chest. My hyperhidrosis is moderate and it started when I was just 10 years old.

I felt really bad and take note Philippines has an average temperature of 32 degrees celsius. I am glad that I do not suffer severe hyperhidrosis.

I had took Driclor and it is very effective on my palms, feet and underarms. My main problem is my facial hyperhidrosis as well as my back and chest because they sweat a lot compare to my hands and feet.

I drip a lot of sweat from my scalp and I sweat profusely in 5 minutes walking home from school. Gladly our classroom is air conditioned and I rarely sweat at 19 degrees celsius room.

I am now having a vegetarian diet and few cup of rice in my meal. It had a good effect in my sweating regulation.