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How to quickly and successfully cure craniofacial hyperhidrosis?

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Andi36
Andi36

Hi, my name is Andi Thompson and I am a 15 year old teenage girl.

For the last 18 months or so I have been suffering with excessive sweating, but more specifically craniofacial hyperhidrosis.

I've researched on things that I can do to prevent it from happening, but I know that my parents wouldn't allow me to use drugs or botox or surgery to remove my sweat glands. I feel as though I am running out of options.

I don't know if I have anxiety issues as well, which is what my sweating may be linked to, but I am a very anxious person and the slightest thing could set me off into a panick.

The strange thing is, as stressed as I might be, I never never sweat in my own home, ONLY at school-or places where I don't feel comfortable (mainly school).

This is why I am terrified about going in to school every day, and even when it's a chilly winter day in December, I would step into the classroom and immediately begin to sweat.

People laugh, and whisper and talk about me. My own friends are starting to think me weird.

It affects my life so badly, I've had to stop going to orchestra as my hands get so sweaty it's hard to hold my violin.

Please, please, help me.

1 like, 31 replies

31 Replies

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  • mcbightonbrian
    mcbightonbrian Andi36

    Edited

    I am 43 year old male who is just comeing to terms with the effects of craniofacial hyeprhidrosis which started in my early 20's.

    I realize I am responding a year after you posted this and have no real wisdom to add. Just felt I had to becasue the cranio facial hyperhidrosis is not so common.

    Just to say that in particular I wish I didnt have the craniofacial hyperhidrosis as opposed to in other areas as I think its a lot more harder to deal with. Its taken away almost everything in my life.

    I laughed when you descibed coming into a warm room after being out in the cold the change in temp sets of the hyperhidrosis. Thats me all over. People just staring at you wondering how you can be sweating buckets when its -5 outside.

    I moved 13000 miles to live in a colder climate becasue I thought that would help.

    I havent found a cure or really anything that helps (excpet the anti-perpisirants, which help a little)

    The only thing I could say to you is start reading about an overactive sympaethic nervous system and see if there any clues there. After all my research I think thats were it all stems from.

    I really wish I could help you but I cant....becasue I cant help myself.

    • tinaj1962
      tinaj1962 mcbightonbrian

      Posted

      Please get your GP to prescribe OXYBUTILIN, a fantastic cure for C.H, having suffered for over 40 years, i now have my life back. It is prescribed for bladder incontinence, but works brilliantly on craniofacial hyperhydosis. I take 2 tablets an hour before I go out - no side effects at all, except a dry mouth,so I kerp a bottle of water or some mints handy! BRILLIANT,
    • nichole62297
      nichole62297 mcbightonbrian

      Posted

      HI,

      Does this condition exist in the absence of visible sweat?  Every summer for the last 23 years, I experience a sweaty body odor that is IMMEDIATELY set off when I encounter humidity. However, the sweat is not visible.

    • bightonbrian
      bightonbrian tinaj1962

      Posted

      tinaj1962 you are a life saver!!!! Managed to get my GP to prescribe OXYBUTYNIN. The results are just unbelievable. After 20 + years of suffering with this and trying every cure under the sun , these little blue pills are working so effectively. Only 5 mg every other day and the fountain in the top of my head has stopped. Its only been a week since I first took them but it feels like a life time. First thing I did when I realized that the were working is quit my menial job and applied for an IT job and got it. (I have degree but I have never been able to get a job with it because I look like herion addict detoxing when I am in an interview....streams of water pouring from head.....no one would hire me.)

      I just say it again THANK YOU for takeing the time reply to my post and for you help!

    • bightonbrian
      bightonbrian nichole62297

      Posted

      Hi nichole62297            

      Very sorry but my condition is the opposite. I have loads of very visible sweat but there really is no odor from it. However like you humidity does make me sweat (or used to until I discovered OXYBUTYNIN) However I dont know enough to say whether it might be of help to you.

    • diana91800
      diana91800 mcbightonbrian

      Posted

      I received a newsletter from the Hyperhidrosis Society and there are two new drugs coming out - one is a topical which is definitely not good for the head and the other is a combo oral treatment TheraVido is the manufacturef and you want to go on their website and read about THVD-102.  
    • Kibasmommy
      Kibasmommy nichole62297

      Edited

      This is my problem too! I have to take certain medications to stay alive. Unfortunately, as time has gone by I've noticed they change how I sweat. The medications come out in my sweat and the smell is horrible and I never has this problem before. The more active I am and the hotter it is, the more I sweat the worse it is. I've solved the problem by switching to Dial which is an antibacterial soap and using Johnsons aloe baby powder which absorbs extra moisture. However I have found no solution for the swear glands above both ears which is where the problem is the worst. I can just shower and wash my hair and if I walk my dogs and start sweating my hair starts to smell bad as of I never showered or washed it at all! There's only so much you can wash your hair! It's starting to become weak and thin from being washed twice daily. In the past Prell Shampoo used to work incredibly well with hard water to get out any smell (including campfire smoke) and it left my hair incredibly clean. But this new problem of sweating out my meds and these 2 sections of sweat glands have beaten any and all attempts by me to keep it away. I've even had mild success applying baking soda to these areas after walking my dogs but the warmer it gets, the more I sweat the less it seems to work. It's extremely depressing and I have a lot worse things I have to deal with other than this. It makes me not want to be around people or go anywhere without applying perfume. No matter what I do I can still smell it and if I'm outside and I notice my scalp is starting to smell I feel like crawling into a hole to hide. I never thought in a million years I'd have to consider which way the wind is blowing before I stop to talk to someone. Most people don't understand what's going on or how hard I've fought against it. People are just too happy making fun and jumping to all the wrong conclusions. So I don't socialize at all because of it. All I have for companionship are my 2 dogs that know the real meaning of unconditional love. I think I'd die without them as I feel my life is meaningless without them.

    • julie17125
      julie17125 tinaj1962

      Posted

      Tina, I cannot thank you enough!!!!!!  I have been suffering for eight years now.  My face and head have been drenched so bad that I would go through a roll of paper towels when I was not in an airconditioned environment.  I stumbled across your response and called my doctor.  He prescribed this medicine for me, 5 mg. 2x daily, and I have been dry for 3 weeks now.  Because of you, I have my life back!  I was stressing about going to any activities this summer in the heat because I just couldn't do it anymore, but now I have been to so many picnics and the temps have been close to 90 degrees! I am not afraid to go outside anymore.  My doctor was so excited to hear about this also.  He has already started prescribing it to his other patients with the same problem.  I told my cousin about it and she called her doctor and now she is dry too.  Please know that you are incredible for taking the time to post on here and help so many people.

    • ro2geek
      ro2geek tinaj1962

      Posted

      This is the answer i would have given to anyone a few months back, Oxybutenin had been my saviour however it one day just stopped working. I don't know why and as i'm apparently on the highest dose already (5mg twice daily) i have nowhere to go from here. I am in desperate need of help but have been told by my gp that there's not much they can do as it's on my face. i literally look like i'm melting and it's humiliating. i'm at this point thinking i'll have to quit my job in hospitality. who wants to be met by that before they eat??? 😭

  • pamela81695
    pamela81695 Andi36

    Posted

    Hi Andi36,

    I have just found your sweating problem and wanted you to know you are not alone.

    It is terrible you are experiencing the unusual sweating at such a young age.

    I also have the problem of when the body changes temperature; by entering a room or putting on a sweater; anything temperature related will bring on a large sweat of the head, neck, face and arms. 

    Even lying in bed with a sheet over me and the body changes temperature will bring on a sweat.

    I've now taken to having a wet face washer near me to wipe the excessive perspiration and always a hand towel.

    Numerous tests show everything is fine but I have another ultra sound tomorrow to eliminate the adrenal and carcinoid artery ??

    In the past doctors have always thought it was menapause and prescribed hormon tablets which seemed to control the glands.

    this sort of problem make you want to hybinate and but there are lots of lovely, understanding people out there.

    It is a shame there is not more written publicity on this type of problem to make people more acceptable and aware it can happen occur.

    This week should show some results to my tests..

    Sorry I haven't helped you with a remedy but wanted you to know you are not alone, I'll let you know if I find a cure to our problem.

    Hang in there and please don't be embarrassed when you sweat; it seems we are a unique bunch 

     

    • tinaj1962
      tinaj1962 pamela81695

      Posted

      Please get your GP to prescribe OXYBUTILIN, a fantastic cure for C.H, having suffered for over 40 years, i now have my life back. It is prescribed for bladder incontinence, but works brilliantly on craniofacial hyperhydosis. I take 2 tablets an hour before I go out - no side effects at all, except a dry mouth,so I kerp a bottle of water or some mints handy! BRILLIANT,
    • nichole62297
      nichole62297 pamela81695

      Posted

      Hi Pamela81695,

      I experience the same. However, I smell like sweat AS SOON as I encounter humid temps. But visible sweat/perspiration is not present.  It's extremely embarassing and I dread summer time. 

      Does this sound familiar?

    • amy30810
      amy30810 tinaj1962

      Posted

      Hi 

      After reading your post on Oxybutilin I saw my doctor and told him what I'd read on craniofacial  hyperhydosis I've been effected with really bad head and face sweats for years had many blood tests and nothing has been done to elevate the problem .

      He gave me Propantheline Bromide 15mg 3 x a day . I have only had 4 tablets and I've hoovered right through my house dusted and not a drop of sweat 😅 I have a dry mouth but  I can cope with that . Thank you so much .👍

  • wormwoodbush
    wormwoodbush Andi36

    Posted

    Hi Andi, I too suffer craniofacial hyperhydrosis (CFH), it's a pig of a condition and it can really mess up your life. One thing that I wish someone had told me when I was your age is that, everyone sweats, it's normal. Some, like us, just sweat more than is considered normal, but it does not make us freaks!! So my biggest helping hint for you is to do what I do and wear bandanas as sweat bands every day. Just plain old cotton square decorative bandanas, that you buy at clothing stores. Fold it first into a triangle. Then bring/fold the top point of the triangle down almost to the long bottom side of the triangle, leave it about half inch off the bottom. Then start at the top and fold the bandana into about 2 inch widths, until you have one long length. Put the middle to the middle of your forehead and tie it behind your head. Yes you will catch your hair. So I tie it and remove it immediately and tighten the knot then put it back on. I put mine on and bring it down to around my neck, pull yourmyr through and then put the bandana back up on my forehead, so it sits just on the hair line, then make sure it's behind my ears and I'm done, I usually have at least 2 folded at any time, as I use mine for at least 2 days, but sometimes I sweat so much, it doesn't dry by the next day, so I use the other one. Also, I try to coordinate colours with what I'm wearing. I have about 8-10 different bandanas, so I can coordinate them. I wear mine everyday, even if I'm just veging on the couch watching tv, it's gotten to the point that I feel naked without one one. If I don't wear one and break out in a sweat, my hair gets so wet, it literally drips! The bandana almost completely stops that from happening. I hope this has helped you. I've put quite a few CFH people onto it, and it's really helped them. I often carry a spare on hot or humid days as they get wringing wet! I'm also currently trialling clinical strength anti perspirants, they're expensive, but I'm finding medium level results so far. I apply to my upper lip, chin and forehead, also lower neck, chest and under my breasts, it's stopped me from chest sweating at night and slowed my upper lip and chin sweatinng noticeably. These clinical strength antiperspirants are newly available in the general shops in australia. Previously they were prescription only. I don't know what you have available in the UK. I wish you lots of luck, I'm 41 and have been CFH sweating for most of my living memory, I've been wearing the bandanas for the past 4 years and they've literally revolutionised my life! I'm no longer afraid to go out anywhere on a warm or hot day, and we have pretty warm weather here in Australia. So I really do know what you're going through. Please try the bandana thing and see how it goes, you've got nothing to lose. oh I also use scarves in winter, same principle, just fold up the middle and tie it up. Scarves are easier to coordinate and look fashionable in. But make sure you get cotton or at least absorbable material ones.
    • wormwoodbush
      wormwoodbush

      Posted

      *....around my neck and pull MY HAIR through, and then put the bandana....

      Is what that should have said lol

    • tinaj1962
      tinaj1962 wormwoodbush

      Posted

      Please get your GP to prescribe OXYBUTILIN, a fantastic cure for C.H, having suffered for over 40 years, i now have my life back. It is prescribed for bladder incontinence, but works brilliantly on craniofacial hyperhydosis. I take 2 tablets an hour before I go out - no side effects at all, except a dry mouth,so I kerp a bottle of water or some mints handy! BRILLIANT,
    • wormwoodbush
      wormwoodbush tinaj1962

      Posted

      Hi Tinaj1962

      Thanks for the suggestion. Unfortunately oxybutinin interacts with other meds I take, as well as that, I already suffer dry mouth from some of my meds, so I'd be reluctant to take anything else to make that worse. I've read studies on oxybutinin and CFH, and I know it works in most cases. I just dont want to take any more meds, I already take 15 prescription meds and some of them are what's making my CFH so bad, as well as a genetic predisposition. I hope it keeps working well for you though. Go to your pharmacy and get mouth spray or gel or even chewing gum, specifically designed for dry mouth problems. In Australia we have Hamiltons brand and Biotene brand, I like the Biotene better, it lasts longer than Hamiltons in the mouth. I prefer the Biotene mouth spray above all else, I also like the mouth gel. I didn't think the gum was much good, I also tried the mouth wash, it's good, but it doesn't last long. They even have toothpaste! I highly recommend you try and find them or something similar if you're suffering dry mouth problems. Good luck

    • moving_mountain
      moving_mountain wormwoodbush

      Posted

      Hi wormwoodbush,

      I wanted to say hello because we seem to have a lot in common besides having lawn sprinklers on our heads. I am also on 15 meds and 4 "as needed" Rx's   I have to start undergoing more tests tomorrow as my liver enzymes are showing something wrong. 

      I would love to be able to take a medication to stop all this embarrassing sweating. I'd love to be able to style my hair or even wear makeup now. Anyway, I guess you can only take so many meds before your system goes toxic and starts rebelling. 

      Your biotin advice was good. We have that in the US. 

      I wish you very much good luck in finding a solution. 

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