HHDisturbed
Well-known member
Hello Everyone. I am a new member here on SPW.com but have been reading all of your posts regarding HH for some time now. I have gained much knowledge here on the subject along with the of comfort in knowing that I am not alone. Thank you for that.
I too suffer from an extreme case of Hyperhidrosis...both Craniofacial HH (head and face) and Gustatory HH (smells & foods). 95% of all my sweating comes from the neck up while the rest of my body sweats normally. I think this has to be among the worst form of the disorder because there is absolutely no way to hide it. I am 45 male, my HH started in early teens and has gotten progressively worse as I have gotten older. Without warning I can go from normal-dry to looking like someone dumped a bucket over my head in a matter of minutes. My head, face and neck sweat to the point where my shirt immediately becomes soaked and I am dripping everywhere. To me this happens for for no reason at all but when it happens I want to run and disappear because it usually takes from 15 to 45 minutes to finally stop and I dry up.
Like so many others with HH, I avoid any physical activity in the public eye along with eating any foods public that are even mildly spicy. (Hell, even Heintz ketchup can set it off!) I have had an endless number of horrifying experiences in restaurants. Several times I became so embarrased that I told my wife to box up my meal as I went out to sit in the car. I still enjoy eating things like chilli, pizza and mexican food but only when I am home where I will wrap a towel around my neck and enjoy. However, I avoid many of my favorite foods like these in public because I know they are major triggers. I am fortunate that my wife and family are so understanding and accepting of me regardless. But that doesn't make me feel any better when it happens at the most embarrasing times in public or at work. In addition, very minor physical activity, stress, and humidity are also things that trigger a major HH episode for me.
I've tried extra strength Robinul Forte (oral glycopyrrolate). It helped a little but I felt like I had a 9-volt battery on my tongue and I lost sense of taste while taking them. So I did not refill the prescription. After visiting a dermatologist this week I asked to try the Secure Wipes (1.5% glycopyrrolate) in hopes that it will help me as much as it has helped some. The only bad part is that being here in the U.S. I can only order the Secure Wipes from Canada and they are pricey. Does anyone know of an equivalent topical glyco pad or solution available here in the U.S.? I do have a prescription if necessary.
In closing, I have considered the ETS surgery but the doctor I spoke to said that he wasn't sure if it would help my CF & G HH as much as it would help other HH in the body below the neck. Has anyone had my type of HH and have had the ETS surgery? If so, what were the results? I would only consider ETS as a last resort but only if I can get it covered by my insurance. I'm just afraid that it could actually make things worse as it has in some people.
I too suffer from an extreme case of Hyperhidrosis...both Craniofacial HH (head and face) and Gustatory HH (smells & foods). 95% of all my sweating comes from the neck up while the rest of my body sweats normally. I think this has to be among the worst form of the disorder because there is absolutely no way to hide it. I am 45 male, my HH started in early teens and has gotten progressively worse as I have gotten older. Without warning I can go from normal-dry to looking like someone dumped a bucket over my head in a matter of minutes. My head, face and neck sweat to the point where my shirt immediately becomes soaked and I am dripping everywhere. To me this happens for for no reason at all but when it happens I want to run and disappear because it usually takes from 15 to 45 minutes to finally stop and I dry up.
Like so many others with HH, I avoid any physical activity in the public eye along with eating any foods public that are even mildly spicy. (Hell, even Heintz ketchup can set it off!) I have had an endless number of horrifying experiences in restaurants. Several times I became so embarrased that I told my wife to box up my meal as I went out to sit in the car. I still enjoy eating things like chilli, pizza and mexican food but only when I am home where I will wrap a towel around my neck and enjoy. However, I avoid many of my favorite foods like these in public because I know they are major triggers. I am fortunate that my wife and family are so understanding and accepting of me regardless. But that doesn't make me feel any better when it happens at the most embarrasing times in public or at work. In addition, very minor physical activity, stress, and humidity are also things that trigger a major HH episode for me.
I've tried extra strength Robinul Forte (oral glycopyrrolate). It helped a little but I felt like I had a 9-volt battery on my tongue and I lost sense of taste while taking them. So I did not refill the prescription. After visiting a dermatologist this week I asked to try the Secure Wipes (1.5% glycopyrrolate) in hopes that it will help me as much as it has helped some. The only bad part is that being here in the U.S. I can only order the Secure Wipes from Canada and they are pricey. Does anyone know of an equivalent topical glyco pad or solution available here in the U.S.? I do have a prescription if necessary.
In closing, I have considered the ETS surgery but the doctor I spoke to said that he wasn't sure if it would help my CF & G HH as much as it would help other HH in the body below the neck. Has anyone had my type of HH and have had the ETS surgery? If so, what were the results? I would only consider ETS as a last resort but only if I can get it covered by my insurance. I'm just afraid that it could actually make things worse as it has in some people.
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. I too had tried Rubinul and I didn't have the results I was hoping for. It made me extemely dizzy and it didn't really help the sweating. I have also considered ETS but I'm unsure because I have heard so many mixed reviews. I just wish they would come up with something simple, and put an end to HH.