Change of Direction

Thank you so much for your input Sheryl. I'm so glad that your problem is, at least, partially better and I hope the Botox fixes the remainder.

gail, did you have any side effects with Oxybutynin?  If so, what were they?

Also, re botox.  How do they apply it - knowing it is different to applications for relaxing of wrinkles?  Many and very shallow injections?  All over the face?  What about the head - in my case, currently it is the back of my head.

I have finally got my oestrogen hrt sorted out after dr messed it up with an inclusion of a progestin, which caused my oestrogen to be ineffective, causing head sweating.  Now it is working, but the head sweating has come back.

Can stand up to all the other stressors thrown at me, but this constant saturation of my hair, and the heat with it, is really getting to me.  I wake up with it, and all day the sweat drips onto my shoulders.  I had avoided taking medications for it because of the threatened side effects, but desperate enough now.

I am investigating botox but so far I am told I will have to pay for it, as they only provide medical rebate cover for excessive underarm sweating where I live.

 

I have had no side effects from the Oxybutynin. As I said in my previous comment, I have been prescribed the prolonged release tablets. The recommended dose on the box says 'once a day' but the dermatologist prescribed one to be taken twice a day, so double the dose. The only side effect is the one I want and that's no sweating. I need to be careful in the sun as I could get heat stroke and I need to drink plenty of water but after living with sweating for 20 years I can live with that. My son's wife organised a party for my son for his 40th birthday. He thought he was there to play a gig (he's a drummer) and just before they set off we had to close the door to the balcony and so a room full of people would see me sweating buckets but I got slightly damp. The botox was injected across my forehead just below my hairline. Again, no side effects but I do have 2 inches of forehead that doesn't move but I can live with that too. It's only just started being offered at my local hospital so I was lucky. I can have more in six months. I know you are worried about the side effects of Oxybutynin which is prescribed for an overactive bladder but it's the side effect that you want, i.e. stopping normal secretions. What have you got to lose? I would say go for it and if it doesn't agree with you can stop taking it. I empathise with you, I know how bad it is to be sweating a river in the middle of winter. Walking outside with a t-shirt on in December attracts some funny looks, lol. Get back to me if you want to know anything else, Sheryl. 

Thanks so much for your reply Gail. I'm so happy for you that you found something that worked. Unfortunately, my GP has been very dismissive of the problem, but it's worth another try.

Oh, Helene, I get so angry when GP's are dismissive of the problem. You need to arm yourself with the evidence. GP's and all health professionals should be up to date with the latest research. If he or she is dismissive then you might want to ask him or her what they know about the condition. Is your GP a partner or just an employee? Might be time to complain to the practice manager about the way you've been treated. I'll have a look for the research and post the link. You need to write down how you feel when sweating especially in public. How it's affecting your daily living and your mental health. Your GP would be advised to take your concerns seriously. If you make a list of how it affects you then show him or her and at the top of the page write 'GMC number?'. The last thing your GP needs is a referral to their governing body. Even if you don't intend to report them or make a complaint it's sometimes enough for them to realise that you mean business. Ask for a referral to your local hospital's dermatologist, they will be the expert, your GP isn't. Go to your hospital's website and have a look for any information regarding dermatology while waiting for your appointment with your GP. I'm with you all the way so don't hesitate to contact me.

Thank you so very much Gail. That's so kind of you.

To be fair, my old GP was good and was willing to refer me for a sympathectomy operation, but he's on the verge of retiring and only puts in the occasional appearance for a day or two here and there now. He was a sole practitioner. When I went to the surgery to follow-up on getting a referral letter, there was a young female doctor (obviously his replacement) who was clearly all about budgets and costs. She told me the NHS was broke and that she wouldn't refer anyone for "non-essential" surgery. I told her it might seem trivial to her, but that it was ruining my life! Her reply was "Well, you'll have to learn to live with it!" I think that was well over two years ago and I've never been back, for any reason since!

I really appreciate your kind interest and input. At the moment, I have a lot of family stuff going on and pretty much everything has gone on hold. When I'm less stressed, and feeling stronger, I'm going into battle though! I'm dreading the approach of Summer and we shouldn't have to feel like that.

Actually it was my dr who thought the side effects would be too bad for me. Currently, a reduction in overactive bladder and stress incontinence would be a huge benefit.  I have a bad cold and every cough ....

As I already have fatigue problems and memory problems, etc because I have an aggressive haemochromatosis, the other symptoms were considered to be a worry.  But I am going to France soon and during the past two visits, the sweating put a huge blight on otherwise wonderful trips.  I also had 6 years of constant total face and head sweating until they finally looked and found a small tumour on my pituitary gland which increased my prolactin which made my oestrogen ineffective.  So that problem was hormonal.  Now, what is it?

And that it what I thought - let me try it and I can stop taking it if a problem.  I notice there are patches for Oxybutynin which would be preferable so it does not have to pass through the stomach, but not up front while I am trying it, I suppose.

The concerns to be considered also, if I get an infected bladder, kidney, etc while I am in a foreign country.  I shall have to ask my dr to prescribe medications to take with me just in case.

I will print off a description of Oxybutynin and take it with me to my dr.

What do you think worked best - the Oxybutynin, or the botox, or is a combination the most successful.  Otherwise, why go to botox if the Oxybutynin was so successful?

Thanks so much for your description of your experience.

 

In the greater scheme of things, excessive sweating does seem trivial - until  you experience it, constantly and forever.  Like menopause, a lot of drs dismiss the symptoms of that too.  I also had a battle to get other symptoms diagnosed for 9 years which turned out to be an aggressive form of haemochromatosis.  It was diagnosed when my hips broke up from osteo-necrosis!  This was pre google otherwise I would have found out for myself.  One wonders what drs study.  It seems they do no more reading of research after they graduate.

I find the constant sweating and the heat in my head I feel, makes it harder to deal with other stress in my life.  So maybe we should get that treated first.  But I know what you mean, about everything else and everybody else taking over priority.

 

I know that there are those who consider excessive sweating a minor issue compared to terminal cancer but have you paid National Insurance? If the answer is yes, then you have paid for your treatment and you are entitled to ask for it. In the meantime, if you want to research Oxybutynin this is the link to the Patient Information Leaflet from medicines.org.uk https://www.medicines.org.uk/emc/files/pil.6803.pdf ; From a previous sufferer of facial hyperhidrosis it is anything but trivial. It affects every aspect of your life, you can't wear makeup. I'd go out with a nicely made up face and end up winning an Alice Cooper look-a-like competition, and I didn't even enter!. My advice to anyone going to see their GP for facial sweating is to ask to be referred to dermatology. Bear in mind that the Guardian wrote in February that GP's are being offered cash to refer fewer patients but also bear in mind that knowledge is power. You KNOW what's been said so you can ask your GP if they'll be accepting cash for fewer referrals. I am a retired midwife so GP's hold no magic, they are Jack of all trades, master of none. If anyone wants to discuss further don't hesitate to contact me. 

You're a diamond, Gail. I quite agree (whilst accepting that the NHS generally does a great job under extreme pressure) that we should get the treatment we need and are entitled to. As you say, you pay your NI for 40+ years and then are made to feel guilty on the rare occasion you want to use it. It will be some time down the line with all that's going on, but I'll let you know of any developments. x

Gail, I am from Australia and I pay for an expensive health insurance plus the 'free' Medicare (where they will refund a %age of what they consider is the proper charge  - not what the drs charge).  However, neither cover botox for sweating except for armpits!!!

Oh, most definitely, excess head and face sweating is soul destroying to us and when I was going through the worst, I had thoughts of 'jumping off the cliff'.  So decided on botox instead regardless of the price.  However, that was when it was finally discovered (6 years later) that I had a small tumour on my pituitary gland.

That was cured, sweating miraculously stopped but it has now returned like a leaky tap needing a new washer.

At my worst on the face, it was very difficult to apply makeup to a wet face, which would then drip off, my hair stank of sweat all the time, etc. etc.  I can't understand why my dr allowed me to suffer so much when there was medication for it.

I am going to find out how much it will cost me (has to be by a neurologist - next appointment available in July) but I am reliably informed it could be $1200-$1500 per quarter.  So I really hope the Oxybutynin will work by itself.  

Thanks so much for your information.

 

PS:  There are a number of brands of Oybutynin on the website you suggest.  Which one do you use?

 

I'm so sorry, Sheryl, I don't know why I assumed you lived in the UK. I don't know how the healthcare in Australia works. If your healthcare insurance pays for Botox for your underarms why wouldn't they do it for your face? expect that there is not much research done on Botox for the face or head. If I had a choice I'd choose for my face. The brand of Oxybutynin I've been prescribed is Lyrinel XL 10mg, it's a slow release, once-a-day med but the dermatologist prescribed one to be taken twice a day. I'm a great believer in researching products to know what they can prescribe and for what, as you are, otherwise you wouldn't be here. Don't hesitate to get back in touch with me if you need any other information. I wonder if it might be an idea to go at it from a different direction. How sympathetic is your GP toward your mental health? If the facial sweating is getting you down and you're concerned about the odour and the fact that you can't wear make-up as it will slide off your face after a few minutes. If you can persuade your doctor that the sweating it's detrimental to your mental health you may get a different response.