HH, ETS, Robinul and my experience!

[Linnros2]

Hey Guys,

This type up is a little long. Was excited to have found this place so I wanted to write up about my experience and well to now where I'm doing Robinul at 2mg once a day.

I wanted to just write about my experience with HH and the challenges and of course using Robinol. I'm glad that a forum like this exists for those suffering from it and I wish it were better known.

I'm a male flight attendant, 32, living in Toronto. I'm an average joe. I go to the gym now and then, have a few drink with friends at the bar, enjoy nightly walks on the beach holding hands... oh wait! no this is not one of those! But it took a while to find out, but I suffer from Hyperhidrosis.

It was about 6 years ago that I noticed that something was wrong. I would sweat like no tomorrow: scalp, face, neck, chest, back. It would be terribly embarrassing. And I would be so confused because I would go to the gym and sweat normally, but then I'd be having a beer with friends and all of a sudden feel like I just got out of the shower. And with my job, try serving a meal and sweating onto a passengers tray. Or better yet wiping your face off and having bits of napkin all over while you served.

Over the course of several years I was seeing a few doctors at the walk-in who thought it was a variety of things ranging from allergic reaction to something psychological and been suggested that I change my diet from being raw vegan to gluten free to protein only, nothing seemed to change things. If I had to go anywhere I would have a collection of those flat icepacks and use a bandage to secure it to my back. I got terribly shaggy, hair wise, because every time I'd go to the hair stylist I'd feel horribly embarrassed as I'd leave them with a wet salon chair as if they had soaked my shirt when washing my hair.

I was sent to dermatologists and specialists, got tested for tb and given drysol and drysol extra (which iritated my skin and made me lose tons of sleep and somewhat worked) and proponol (because it may have been due to anxiety but made me spacey) and a few other drugs that made me not me. There even came a point that a doctor thought it was something else and made me carry around a big bright red jug (Imagine those red gas refillable containers) and collect my urine for a 24 hour period. Not fun when you're in my line of work and abroad. Try explaining a big container of urine to airport security -- ll this fun over a 3 year period.

Finally I was sent to a Thoracic and General Surgeon who specializes in ETS. I was examined and interviewed and explained the processes that I went through. Explained all the drugs I had been prescribed and all the inventions I’d made to keep me cool. The Doc was informative and explained the different options and explaining that ETS is invasive and may help, but it may create a situation of compensatory sweating in other places. Tough choice to make, but I decided to go through with it and geeze it felt like I had someone have free reign giving me a purple nurples. The ETS stopped my scalp, face, and neck sweating. I was infact having dry spots on my face! Sweeet!

After about 4 weeks after the compensatory sweating sucked, I would sweat on my chest and back and have a nice moist layer on my arms and legs and let’s not even talk about the groin or butt area. Moist. I was prescribed Robinul at 2mg and let me tell ya this is one week in. And the day after I started I had a little moistness on my chest, the day after dry and for the first time I sat out in the sun with my friend. My throat is dry, but I’ve been doing veggie smoothies that have been aiding in moistening and my eyes are a bit on the dry side too which I’ve been lubricating with drops. I’ve been taking the pills one in the morning and once before bed, but I’ve kinda backed off and am taking them in the mornings only. And so far so good.

I just wanted to talk about my experience on here about hyperhidrosis and robinul and all that --- and am thankful that I’m not the only one cuz it seems like I have no one in the public realm to talk about this with. So … thanks guys!

 

[Rickyberkey]

I share your issues at the barbershop. My scalp and face will start sweating for no real reason and just not stop. It is very embarrassing. I am currently experimenting with the Robinul generic (Avert) and having some degree of success. It's amazing how little knowledge or attention that HH has been given in the public realm. I know that most people notice my problem but politely avoid discussing it. Occasionally someone will make a rude clueless comment that is just devastating.

 

[wannabedry]

so how long ago was your ets? your situation sounds a lot like mine! I have severe compensatory sweat from ETS which I had way back in 2002. Ive tried robinul (avert) on and off. in my experience it sort of works well for me in a temperate place in normal weather. however when talking about my travel experiences in extremely hot humid weather, id have to say it only made the situation worse. I would have to take the maximum amount of avert (around 8mg or more) and it would stop the sweat only if I hadnt eaten and only for a couple hours. after that the sweat would come back with a vengeance and i would literally form puddles on the ground below me!!(NO THATS NOT AN EXAGGERATION!!) ITS ACTUALLY WHAT HAPPENED! 2 years ago i was travelling SE Asia and i can recall vividly a day in malaysia checking into a hotel. I had been taking the robinul and i was walking around carrying my backpack and it was HOT, i found my hotel, walked in, no AC in the lobby and the guy made me sign in and write some info etc etc and i LITERALLY FORMED A PUDDLE BELOW ME ON FLOOR!! most embarrassing moment possibly of my life, and it happened other times too. so now im living in a hot place again and considering taking avert again but maybe ill only take a smaller amount and combine it with my drysol which i had some luck with before but stopped due to burning and redness...just thought id share with you and see if you have any advice etc. good luck to you

 

[Sprawling]

... and yet another reason that ETS surgery should be banned.

 

[wannabedry]

yes really they should ban it and also compensate us since most of us cant really work anymore at least not in a job that we would have liked to do in most cases!!
not to mention cant socialize, or wear decent clothes, cant lead a normal life because we must always plan everything around changing clothes or showering etc. or hiding the fact that we are soaking wet and its too uncomfortable and embarrassing to explain!!

 

[Linnros2]

Sprawling do you believe that people suffering from HH should just forego the ETS and go right into taking medication? It may not have necessarily worked for wannabedry but for myself it cut my scalp, face and neck sweating so that I didn't like i just popped out of the shower.

I have my good days and my bad days. But I don't often visit hot tropical places like Malaysia so I'm not sweating like crazy. Though I am heading back to Southeast Asia in November and kinda worried lol..the first trip down (M'sia and Singapore) I went out to grab food and had a light hoodie on ate fast and ran back to the AC of the hotel. Or i'd only go where there was AC to eat -- and there's soo many amazing food hawker stalls in Singapore I had to forego. But wow you were taking the max dosage of Robinul? I have trouble with 4mg just with how pastey my mouth would get and how dry my throat would be? Have you been doing the drysol extra the night before, like applying it to the areas where it first commences only? And there's a drysol gel for the face -- you could try that?

 

[Sprawling]

Sprawling do you believe that people suffering from HH should just forego the ETS and go right into taking medication? It may not have necessarily worked for wannabedry but for myself it cut my scalp, face and neck sweating so that I didn't like i just popped out of the shower.

I considered ETS years ago and then realized that I already sweat all over my body during the warm months. The thought of more sweating didn't excite me. I never considered Glyco as an option for me. I've learned to deal with the body sweating. The hand sweating is what always bothered me the most. Since my body always required a lot of water, I did'nt feel that the effects of glyco was worth the dry mouth etc. It comes down to a personal choice.

 

[Linnros2]

I considered ETS years ago and then realized that I already sweat all over my body during the warm months. The thought of more sweating didn't excite me. I never considered Glyco as an option for me. I've learned to deal with the body sweating. The hand sweating is what always bothered me the most. Since my body always required a lot of water, I did'nt feel that the effects of glyco was worth the dry mouth etc. It comes down to a personal choice.

Right On Sprawling! At the end of the day its all of matter of how its going to effect your quality of life. I figure we're all just trying to get through this damn sweating. I made my choice and to be honest, I'm glad I did it. My ETS/HH specialist was super respectful and gave me time and the pros and cons of having it done. He also provided me alternative therapies and the positives and negatives. The surgery was part of the provincial health plan and recovery time was decent -- though I discovered I really dislike oxycodone as my pain reliever.

 

[wannabedry]

yes I was doing the full 8mg avert, actually some days that wouldnt even put a dent in my sweating and I would do 10 or 12 mg, even that would only stop the sweat for only a couple hours if I was in a really humid place and remaining active. my dry mouth wasn't severe with robinul, when i used ditropan that was the only time that i had severe dry mouth. Right now im in florida, its insanely hot and humid, the sun may not be as intense as say malaysia or anything but its pretty bad. i took a ride in the car today to make a couple stops and my car actually has crummy AC that barely works so i just kept the windows open and after my 20 minute ride I looked at my legs and they were drenched in sweat, dripping like mad, good ole compensatory sweat!! im gonna give the old avert a go again in the coming days. on that trip in SE asia i pretty much always had nylon or poly workout clothes on that would be black or dark blue that always concealed the fact they were drenched, oh but i knew i was drenched LOL! of course until people would touch my shirt or something then they would be like ohhh!!?? what happened? a couple times while hiking in the jungle i was asked by people what happened did you fall in the river?? or other crazy devastating sorts of questions for people like us, us "wet people" haha also no at the time of that trip i did not have the drysol with me, it was something i tried later after returning.