Positive 2.5 years post ETS

[Andy In ATL]

I was invited here to share my experience from another forum so you might notice that this post is pretty much a cut and paste job because I'm on the road at the moment and short on time.

I posted formerly as 2003Powerstroke on another forum during the summer of 2004.

I had surgery (clamping) May 2004 in Ft. Lauderdale for facial HH that progressed annually since puberty. I tried a plethora of treatments before surgery and the only thing that worked was a ton of Robinul and Xanax. My behavioral medicine shrink at Kaiser HMO limited me to 15 .25mg xanax per month and needless to say that wasn't enough. I could have bought more on the street but I didn't want to become a xanax junky like many with HH so when I saved up enough cash I travelled to Ft. Lauderdale and paid out of pocket since Kaiser felt this was cosmetic.

I went through the typical games everyone else went through (learned this post -surgery since I was unaware of these boards before hand) such as one doctor calling to answer questions even though another was going to operate. The problem was since I called so many times and demanded a specific surgery date I ended up with the same doctor that had answered my questions over the phone and of course the first time I met him was in pre-op by myself. Of course I was told CS wasn't definite as well and the major problems many have experienced were never brought up.

That said the only side-effects of surgery have been various forms of CS in various places of my body:

Mild and occasional CS:

1. The tops of my hands form a very fine CS under high heat/high humidity conditions. No big deal and the bottom of my hands are dry UNLESS I wear nitrite gloves which I do when I formulate car paint or paint a car on the weekend. Interestingly enough last spring I was ~4 hours into private pilot training and I was at a point when I wanted to prove to my CFI that I could handle the plane on my own already (under her watch of course). The air was rough as we climbed and I was nervous while holding on to the yoke. All of sudden the palms of my hands started pouring so I wiped them one at a time on my jeans for about 10 minutes. It has never happened since.

2. The front of my shins sweat lightly in high heat/humidity unless I'm loaded on Robinul but being loaded on Robinul can cause you to overheat fast so like many others I try to balance my dosage.

3. In the fall/winter for some reason I get sensitive to spicy foods and micro-sweat from my forehead and scalp. This is occasional and my guess is I rarely use Robinul in the winter but then again I have no clue...

4. The insides of my elbows can sweat even under the influence of Robinul in high heat/ high humidity conditions.


Major CS:

My back more so than my chest.

If this type of CS were not controlled by Robinul and Maxim I would consider this surgery a failure. However, between the two products I can control what would be major CS on my back to a very normal and manageable state. This past summer I chose to use strictly Robinul for CS w/o the aid of Maxim and I consumed 2mg Robinul like candy. I can unequivically say the combo of the 2 work great while they aren't worth a flip by themselves.

Unlike other drugs in its class I have zero side effects from Robinul. Robinul dries me out from the waist up meaning as the dose kicks in my lower back dries out first then the drying effect works its way up my back. It takes around 2.5 hours for Robinul to work initially and I do build up a tolerance as the summer progresses though that tolerance goes away in the fall when I cut back on its usage.

A normal summer day when I'll be outdoors I take 4-6 mg in the AM then 2mg around noon, then 2mg every 2-3 hours until I'm inside for the night if that makes any sense.

In the winter it depends on what I'm doing and where I'm doing it. Ithas been 70+ here in GA lately so I've been taking a little Robinul each afternoon. I travel a lot and recently that has meant being in Daytona Beach, FL every other week where it has been 80 so obviously I treat those trips like my normal summer days as far as dosages are concerned.

Naturally I have dry hands that must be lotioned during the cold dry winter months and I have found Gold Bond Ultimate Healing to be the best for me.

Post surgery I tried another drug like robinul that I think was blue in color and smaller in physical size and it didn't work as well, I couldn't read a newspaper by the afternoon and I had problems urinating. It's drying effects were not as good either.


That said, I'm pleased with my results and would do the surgery all over again. I don't miss the sweat dripping down my face nor the anxiety that went along with it.

I'm 31, male and have an athletic build.

[Viking]

Hey thats an interesting story. You are very persistent!

Do you get Robinul prescriptions from your doctor? How much does it cost?

And do you use Maxim on your armpits or on other parts of the body? Thanks.

[Andy In ATL]

Hey thats an interesting story. You are very persistent!

Do you get Robinul prescriptions from your doctor? How much does it cost?

And do you use Maxim on your armpits or on other parts of the body? Thanks.

Yes, Robinul is high out of pocket but I pay $15 per month for any prescription from Kaiser.

I've used Maxim for my armpits before but since under arm sweat isn't a serious issue since I'm already using Robinul so I simply use the typical anti-perspirant/deodorant from the drug store.

I've turned many 'normal' sweaters onto Maxim for under arm use and they all like it and have ordered it themselves.

[Andy In ATL]

It's been awhile so I thought I would update.

Basically my only major side effects are compensatory sweating (seems to have tapered off a little bit over the years) and now gustatory sweating with spicy foods/sauces with vinegar.

Early on post-op, I would only get the 'sensation' of sweating when I ate spicy foods, but for the last few years its an every day issue IF I haven't taken Robinol (like during the cooler months of the year). Now if its cooler time of the year and I want to eat in public, I will pop a couple of Robinol 1-1.5 hrs before I intend to eat. This is such an odd dysfunction IMO but its easily manageable with Robinol. As usual spices and vinegar sauces/dressings kick in the gustatory sweating.

I would still be very leery of recommending this procedure to someone who hasn't thoroughly researched the side effects.

I have been fortunate with Robinol controlling my CS, though I realize it doesn't work for many of you.