Oxybutynin works for me!

RGirl82

New member
Hi, I wanted to share a little about my HH issues and what I've found to be somewhat helpful. I've suffered from severe HH as long as I can remember, all over my body - hands, feet, face, everywhere!

I've never tried an iontophoresis machine (sp?) - (too expensive) and I've vowed to never have the surgery since there are so many awful horror stories out there. I finally tried oxybutynin pills (generic Robinol I think?) and THEY WORK! Definitely not perfect, but it's helped me so much. I ordered from an online UK-based pharmacy so I didn't need a prescription ($50 for 500 pills - great deal), but once I'm out I'm going to see if I can get an Rx from my doc. They take a few days before they really start working, but I've noticed such a difference! I take one when I first wake up, then one in the afternoon and one in the evening. The key is to take one when you first wake up or right when you get out of the shower (before you're even sweating). The side effects are not pleasant but I think sweating all the time is much worse! The worst side effects I've noticed are dry mouth, dry eyes and headache. I was actually able to get a manicure for the first time in my life without worrying about sweaty hands! It was a great feeling. Also, I'm amazed because where I live it hardly ever gets below 90 degrees during the day! If anyone also has tried oxybutynin or has any advice, please share! :D
 

cars

New member
HH and Oxybutynin - DITROPAN

hi there. i also have been taking oxybutynin for HH for about 5 years - it works GREAT...that is, it WAS working great until i started to develop bladder problems. i have been having trouble with urine retention. i am 26 and female and am totally frustrated about my recent problems with the drug. the last five years i have been virtually sweat free - except under seriously stressful pressure. its amazing how well it worked for me. now, however, i'm very worried about the bladder related side-effects. my gyno and urologist think that i could continue with the oxy, but frankly i'm so scared that i'm going to develop permanent bladder problems - i'd rather have HH then not be able to pee for the rest of my life. i've also had some problems with 'floaters' in my eyes from the drug - but this side effect has thus far been tolerable. still, i really can't imagine taking this for the rest of my life...

i am completely out of ideas on what to do - my next little HH experiment is to start popping sage tablets - i heard that could help...i'm a bit skeptical tho.

anyway, anyone else taking oxy!? i'm dying to learn about the long term side effects... anyone?
 

cars

New member
HH and Oxybutynin - DITROPAN

hi pinker. thanks for the reply. i am considering other medications - like robinul - but robinul and oxy both can cause bladder retention (at least that's what i've read). like you said, side effects vary per person, so who knows without trying - i'm just becoming less and less interested in taking a pill for the rest of my life. still, i don't see another option...i just wish there was some literature on the nature of these drugs and their effects on HH as well as information on the LONG TERM side effects. my cousin is a pharmacist and even he has had some trouble gathering this type of information.

when i first started taking the oxybutynin i only had one side effect - drymouth. i was taking the medication once a day, 5 - 10 mg depending on the severity of my HH. the drymouth went away after about a month (or at least it became VERY tolerable). then i began to develop floaters - i saw many eye specialists all of which knew i was on OXY and all of which failed to connect the floaters to the drug. i am also near-sighted and they thought that perhaps the shape of my eye was causing the retina to shed a bit. only recently did i read that OXY can affect one's eyes - still its hard to know what exactly caused the floaters. i also do (or DID) a lot of yoga. my HH was BARELY controlled by the OXY during that type of workout - but it worked well enough for me to at least participate. during class i noticed that sometimes i would get really dizzy - sometimes i would come close to blacking out. i honestly never thought this was related to OXY, but now i wonder...especially since it is listed as a side effect. and now this whole bladder retention thing...what a mess. its like my body was slowly telling me that it didn't like the medication - i just missed the signs. i think bladder retention is a serious thing and it's not worth the risk. i just hope i haven't done some serious damage to myself - after treatment for the bladder retention i am still having trouble with it. and yet...my urologist thinks i should START TAKING OXY AGAIN for HH! i'm confused and upset. i'm sorry for the rant, but it's nice to have an outlet finally.

anyway, i'm still interested in learning about oral medications for HH, so if anyone can comment, don't be shy!
[/i]
 

margiehope

Well-known member
I'm writing to Rgirl82, who is so far having positive results with oxy. It's a different drug from Robinul (itself a brand name for glycopyrrolte--Avert in Canada.

Just to say that more than 2 years later, I have good results with Avert, and no unpleasant side effects. Dry mouth comes and goes, but it's tiny.

A few days ago I took my meds a bit late, and when at the gym, I had a brief deja vu--sweat trickling down my sides, back of hair soaking wet--yuck!

I don't know what to say to the person with fluid retention. I'm surprised your doctors don't want you off oxy, though maybe they don't think there's a connection. Maybe there isn't, either, but I can imagine your worries. I guess just go with your gut (so to speak).

Good luck to you both!
 

theboat

Member
I have been on and off Oxy for about 5 years now. I don't take it daily, only when i know that I might need to be sweat free. When I know, I have to plan three days ahead for the pills to be effective.

I sweat a lot, in meetings, sitting around, warm places...blah blah all the usual extremely excess people have. I do think the worse place is the forehead. I can't for the life of me figure out a way to hide that. If I could just not have my forehead sweat I could get through anything. It is actually pretty bad. I have learned to get really good at hiding it and preventing those sweat flashes from lasting too long. Running cold water on my hands and arms for a minute or so really helps get past them. I've always known that I should not be on Oxy all the time. So when I can go off it I do.

I do have floaters in my eyes. When I am on Oxy for extended time it really drys out pretty much everything. My eyes get really dry and it seems that my vision has gotten worse. It gets hard to talk sometimes because my mouth is so dry. I think it is directly related to the Oxy.
When I am on Oxy for extended periods of time it does actually get difficult to use the bathroom. This always goes away when I go off of Oxy.

Now that someone else is seeing similar problems I know for a fact that I have to stay off of Oxy, no matter how great it works for sweating. Don't get me wrong, it feels so damn good to be sweat free. It makes me feel like I can do anything! It makes me feel normal. It makes me enjoy life so much more.

Do not listen to your doctors. They are idiots! You need to go off of Oxy before you have permanent damage. You may still have a chance to recover. Take a look at all the articles and studies about how drugs are messing up peoples bodies. How could you not think that Oxy could not be what is causing your bladder problems? You are taking a bladder control drug when you do not have bladder problems and now you developed bladder problems...hmm. Stop taking bladder control drugs!

I use to come to these forums years ago, but I have stayed away since I could control my sweating with Oxy when I needed it and wearing proper clothes. I had a pretty embarassing meeting today and it made me want to come back on to see if anything new was out there to try.

My next thing I am going to try is going on a full health diet. I am going to try to start a Juice diet. Get my body healthy and away from all these chemicals and drugs we are spoon fed. Lots of organic fruits in the morning and vegetables throughout the day from a juicer. Might work, might not. I've tried so many things that I have read. I'm sure you all have as well. Apple Cider Vinegar was one I am going to also try again. I never stuck with it long enough to see if it would work. I do 3 shots of Braggs apple cider vinegar...

I gotta get away from these drugs. They will really mess me up in 10 years if I have to continue to stay on them.
 

cars

New member
hi boat. glad to have another reply on this topic - sounds like you and i have been on the same track with this medicine for a while now. i obviously agree with you - oxy is messing up my life! i'm still have fluid retention problems...though its been over a month since the last time i took oxy...and i'm lost on what to do about it. i'm headed back to the urologist tomorrow for another opinion, but i'm pretty scared. i took oxy pretty much every day for the last five years or so (minus a few days / weeks when i ran out of the meds or over holidays when i was less stressed) - so i guess i shouldn't be so surprised that my side effect hasn't vanished just yet. be thankful that your retention appears to stop when you end treatment with oxy...

still, it sucks right?! i mean, i've been SWEAT FREE for SO long! i was able to get two architectural degrees while sweat free! now, i'm in the architecture profession (some ridiculous amount of money invested in my education) and now without oxy or any other working solution to HH, i can't even make my drawings, build models, or be taken seriously in any meeting because i'm just dripping in my own disgusting sweat. i think i have to leave my career...

crazy what sweat does to you...

maybe you could tell me a little more about yourself - age, location, career, etc... i'm just interested since we seem to have similar issues / jobs / whatever.

oh, and i should add that i started taking sage tablets about a week ago - menopause tablets to be exact (I'M 26!) and they haven't kicked in just yet...i'll keep you all posted on that front.

...hang in there...
 

theboat

Member
I wouldn't have been able to get my college degree without oxy... It does work so so good. I am currently early to mid 20s Male. I like to remain private so I don't want to go into to much details on a public forum.

I am comfortable in my current job enough where things are more controllable. It is just those meetings or surprise things that can really trigger it. I don't want to use oxy anymore, but I know that when some big event or planned big presentation comes up I will have no choice but to use it.

I always try to identify what is causing sweating it when it happens. Like I can be walking to my apartment and feel 100% dry and comfortable. Then like 10 secs later I can get this tingly feeling and everything slowly gets a little moist. Also a lot of the times extreme heat is coming off of my body. Everyone always tells me when they touch my skin how warm i feel. What controls our body temps? It is so weird. I think my brain sends the message to start sweating, due to a false alarm or from my body being abnormally at a higher temp. It is as far as I know an uncontrollable response from the brain.

I don't think it is a question of some people sweat more than others. It is a matter of something in my body isn't functioning correctly. Sweating could just be a side effect of whatever the other thing is that isn't functioning properly. Maybe I have been going about this all wrong. I am trying to stop sweating, but maybe there is something else that I need to fix so my body doesn't feel over heated all the time and feel the need to sweat. This is the reason why I want to start an organic health body cleanse. This would be a hard change to make and keep for an extended period of time. Results wouldn't come within 3 days like Oxy. It could take months for my body to get normal...this will be the hard part.

I am going to start by cutting out sugars and coffee. Eating lots of fruits in the morning and vegetables throughout the day. Hard parts will be when I go out to eat with people from work. Thanksgiving will be hard. Quick meals when I am starving will be hard to avoid going to fast food. I guess its better than crippling my body even more with drugs.

I am going to try and go the natural path and eat the raw foods our bodies were designed to eat and digest.

One thing people forget with going natural and eating healthy is that it is not a quick fix like what drugs do. Drugs quickly hide the symptoms we feel but don't resolve the problem. Natural usually won't cover symptoms, but will heal the problem, given time and dedication. It gets our bodies back in balance and allows our bodies to do what they are best at, healing.
 

Jezza

Well-known member
I don't think it is a question of some people sweat more than others. It is a matter of something in my body isn't functioning correctly. Sweating could just be a side effect of whatever the other thing is that isn't functioning properly.

That's my conviction as well...Personally I'm guessing it's an endocrine disorder of some sorts. Particularly, the pituitary, adrenal, and thyroidgland are under my suspicion. But what would be wrong with them exactly is a difficult question (tumor? infection? malformation?).

Maybe it's even some hormone that's as of yet 'unknown'. It's a wild theory but then again people find new human hormones quite often with new research techniques.

I think though that if it is physical, which I believe it is, it will probably need some good old fashioned surgery and medication. Maybe medication that's cleansing?
 

Jezza

Well-known member
Yeah absolutely, between the two of them, the hypothalamus together with the pituitary gland (also called master gland, for a reason) are the main regulators for the endocrine system in humans, which is among others responsible for body heat regulation.

Personally I therefore would say that it should be SOP for HH patients to get an MRI of these glands (and adrenals), but unfortunately, HH is usually seen as a minor inconvenience (still) and is being treated as a dermatological problem in most cases or sometimes as a psychological disorder. So most of the times, the medics will not go beyond doing some standard stuff, also because insurance companies start moaning if they would.
 

theboat

Member
Well, if they find out that there is something funky going on in there, what could they possibly do? Drugs to make it in balance again I suppose...?
 

Jezza

Well-known member
Well, if they find out that there is something funky going on in there, what could they possibly do? Drugs to make it in balance again I suppose...?

Probably. If one of those glands are damaged, I don't think there is anything you can do about that with surgery (unless the gland itself is ok, but affected by something like an infection or tumor). However, it would in any case still be helpful to know exactly what is wrong and therefore what you are trying to treat, to understand the cause of the sweating, so that you can create a good treatment as opposed to blindly attacking the sweating itself with the crude methods used today (ETS, Botox injections, anticholinergics etc) that cause numerous side-effects.
 

MMCFLY

Active member
Hi all, this thing about floaters, i suffered from that after my eye laser surgery and i do remember that my eyes were very dry for many months after surgery. Now that they are back to normal (but with 20/20 vision), the floaters are gone. I have done an eye test last yr and all is well and have not seen floaters in over 18 months. So yes, definitely related to dryness.

Guys, just get off the medication. I know it is easy for me to say but i taken ditropan 4 times only and thought: na, i prefer to sweat than get some weird side effect. Dont care about sweating from my body, as long as i dont sweat from my head and forehead so im looking for a topical treatment. I think we should all aim for that. As for Sage pills, used them for over a month with not much success except for night sweats. found them very effective but on the downside, the made my tummy fell funny and gasy and dried my mouth, so maybe they do work.
 

RGirl82

New member
OxyB and eye/bladder issues??!

Hi - oops, I've been gone for awhile! Thanks margiehope for your input!

I've been taking oxybutinin for about 4 months now and am starting to notice more (more serious) side effects. I feel like I should stop taking it, especially after reading some of the responses here.

To Cars and Boat- I've also noticed the bladder issues lately :( It seems like I feel like I have to pee more often than usual, then when I go it's only a small amount (sorry to be offering too much info here…). Basically I feel an urgency but then it's more like a "false alarm". Very annoying! Now I'm scared to know that there may actually be permanent bladder damage!! Really?

Re: the eye issues - my HH has been so embarrassing that I have never even said anything to my family - although I'm sure they've noticed throughout the years, they have never mentioned it to me for fear of embarrassing me (I think). So my point is, that my mother is an eye doctor and I still haven't gotten the nerve to ask her about the dry eye side effects. As I recall, I did see a commercial for Detrol LA (which I believe is Robinol or something similar) and it said "consult your dr. if you have glaucoma). A sign of glaucoma is the "floaters"…and I have noticed that I feel pressure in my eyeballs sometimes after taking the oxy - not good!

Boat - I am a very healthy person - don't smoke, hardly ever drink, no caffeine and a gym rat to boot! I'm also a vegetarian and raw/steamed veggies make up the majority of my diet. I still sweat (when I'm off the oxy)…but please keep me/us posted on if lifestyle changes are giving you any positive results.

The dry mouth is also pretty bad…I'm constantly drinking water or chewing gum, otherwise my throat starts to hurt.

I am seriously thinking of not taking this anymore…although to start sweating again (esp in my hands) would be devastating…I'm so much more comfortable at work and started dating a new guy (who has no idea about my HH since the pills have worked so well). I've cut the amount I've been taking to 2 a day instead of 3 (I find that since it's wintertime I don't need as much).

And this is probably common sense but I also noticed that alcohol and oxy do not like each other! I don't drink much but I'm also not exactly a lightweight, and the first time I drank after I'd taken one, the wine went straight to my head to the point where I could barely walk. That was the first and last time I'll be doing that!

Lastly, has anyone ever had a colonic?? The only person I've ever mentioned this to (my best friend) swears by colonics and how they "purify" the whole body and rid the body of toxins. I'm curious to see if anyone's tried this??

Happy holidays to everyone. :D
 
Top