Helping Hyperhidrosis sufferers get the answers they need.
08-Aug-2011
Latest Newsletter August 2011
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PATIENT SUPPORT GROUP NEWSLETTER
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This is the first newsletter to be sent since launching our new website and I hope you will like it. It is thanks to the British Association of Dermatologists who gave us a grant for this website that has made it all possible.
It is also thanks to Hilary that our new site is now up and running and is now nearly complete. We need to add a few more photos and fine tune a few bits, but apart from that, it has most of the information on it that is necessary.
Thanks also to Jenna and Joe for their help is sorting out a few things for us. We really are most grateful for their time.
The website has considerably more information on it than the previous one and any latest products that we have found useful for Hyperhidrosis will be added sooner rather than later from now on.
It also has useful video’s which may help you chose which treatment is best for you, if you have not already.
Last year the British Skin Foundation Walk for Skin raised £1004.25 for our charity. Thank you to those who supported us and especially to Phil Peters & Bibi who did the walk with us in Southampton and helped enormously to raise funds.
Sadly we have very little uptake in fundraising and, although we don’t need a huge amount of money to keep going, we do need a certain amount of funds to pay for things such as information leaflets for sufferers and also for medical staff in surgeries and hospitals, not to mention the upkeep of our new website. If you do consider donating just a small amount, it would help a great deal. Thank you. We have now set up a permanent fund raising page at Charity Giving, a simple and secure way to make a donation.
We will not be doing the Walk for Skin this year as sadly, the BSF have cut their venues; so I would be grateful for anything you feel you can give.
Our website gets about 100 hits a day and I answer all emails personally to anyone that has a query that cannot be answered on the website.
I’m a specialist nurse and work full time and run the support group in my spare time as a volunteer. I am more than happy to do this, but please don’t email asking about information that you can find on the website, as I get many emails a day and am sometimes just not able to reply as quickly as some may like. I will do my best to help in any way I can as my mission is to help those with Hyperhidrosis get the treatment they need and also to ensure that medical staff are well informed on treatments available.
HYPERHIDROSIS BASICS
So, how do you know which type of hyperhidrosis you have? And how do you know where to turn for help?
Primary or focal hyperhidrosis is a longstanding medical condition that generally begins before the age of 25 and usually in childhood. Primary hyperhidrosis can affect one or more body areas, most often the palms, (palmar) soles of the feet (plantar) armpits, (axillary) or face & head (cranial/facial) and sometimes the groin, the back & the chest and almost any other part of the body.
Secondary Hyperhidrosis, on the other hand, is often generalized, typically involving the whole body. This type of excess sweating may seem to come on for no apparent reason – although a closer look will typically reveal a root problem. This is why this type of hyperhidrosis is called "secondary." The excess sweat is secondary to the more primary condition.
Whether you have primary or secondary hyperhidrosis can be determined by asking yourself a few simple questions. Ask yourself if you have experienced focal visible excess sweating for at least six months without apparent cause. If the answer is "yes," then the next step is determining whether you meet at least three of the following criteria:
It is primary Hyperhidrosis that we mainly deal with at The Hyperhidrosis Support Group.
If you don't meet the criteria for primary hyperhidrosis, then it gets a little more complicated, as your doctor may end up needing to do a complete check up to determine why you are sweating excessively. The cause may be as simple as a new medication you've been taking. Or, you might be suffering from one of a range of medical conditions – infection, thyroid disease, malignant disease or other medical disorders such as diabetes or gout. A hormonal imbalance related to pregnancy or the menopause could be another potential root cause. For a list of medications and diseases that can cause excess sweat, go to "Causes of Secondary Hyperhidrosis".
If you see one physician and don't get the sense that the answer given is sufficient or satisfying, you certainly may need to seek out a second opinion. Sometimes that first response is: 'Don't worry about it. It's not going to kill you.' If you get an answer like that, and it's not satisfying to you, you should go and get a second opinion.
A FEW THINGS WHICH MIGHT INTEREST YOU:
OXYBUTYNIN modified release 10mg – 30mg is very helpful for people who suffer from Hyperhidrosis all over their body or for those who suffer from compensatory sweating following ETS. It has less side effects than normal oral Oxybutynin.
LAULAS T-SHIRTS:
Reports back were generally positive saying that they were very comfortable & soft to wear. However back & chest sweat tends to come through if you suffer from compensatory sweating, but very good for hyperhidrosis of the axillae.
From Canonbury Healthcare: Gehwol caring foot deo spray, Gehwold liquid foot spray, Gehwol foot cream
PEPITA SEEDS: One of our members has even said that his Hyperhidrosis has improved dramatically with eating Pepita seeds. Pepita seeds are pumpkin seeds or seeds from members of the squash family. He said ‘I've been munching on them for the past week or so and after approx 2-3 days I noticed that the sweating under the armpits reduced to almost nothing. A theraputic dose is around 1/4 cup.’ PLEASE DO LET ME KNOW IF YOU HAVE SUCCESS WITH THIS.
MOBILE BOTOX SERVICE: Although often used as a cosmetic treatment, they do a reasonable amount of treatment for hyperhidrosis too. I do not normally advertise services such as these and have as yet had no feedback, so PLEASE DO LET ME KNOW IF YOU USE THIS SERVICE AND TELL ME HOW YOU GOT ON.
The company says: ‘We have been successfully treating Hyperhidrosis Axillar, Plantar and Palmar since 2006. We also treat scalps, foreheads, backs and other areas.
Free Consultations: 07553 533790
£300 for both armpits, £400 for both hands, £400 for both feet
Other areas depend on how much botox is needed (i.e. backs vary in size)”
They are a fully mobile service. They come to your home, workplace, office, gym etc. They work evenings, bank holidays, weekends and late nights to ensure their clients get an appointment that really suits them.
http://www.smoothface.co.uk
They cover London, Greater London and M25 areas, Surrey, Berkshire, Hampshire, East Sussex, West Sussex, Dorset, Wiltshire, Devon, Somerset, Oxfordshire and Gloucester.
Please note, botox is licensed for Hyperhidrosis of the axillae only in the UK, so if you chose to have treatment by botox for any other area, then this is given on a named patient basis only
DRUGS: Come off cannabis! It takes 2 weeks for sweating to reduce apparently. Other recreational drugs have also been responsible for excessive sweating.
Many antidepressants cause excessive sweating.
IONTOPHORESIS
We have talked about iontophoresis in previous newsletters and I have chosen to discuss it again as it the mainstay of treatment for those who suffer from Hyperhidrosis of the hands, feet and axillae. A few trials have taken place in hospitals where they have treated other areas such as the back and chest and also stumps for amputees. To date these have been successful, but there is not yet enough data to write a paper on the subject.
Used correctly and adjusted to individual situations, iontophoresis has proven to have a very high success rate (about 85% using just tap water) for people with sweaty palms and sweaty feet and about a 70% success rate for those using it to treat the axillae.
Iontophoresis uses water to conduct a mild electrical current through the skin’s surface. It’s not entirely understood how or why iontophoresis works, but it’s believed that the electric current and mineral particles in the water, work together to microscopically thicken the outer layer of the skin, which blocks the flow of sweat to the skin’s surface. Once this sweat output is blocked or interrupted, sweat production on the palms and soles is, often suddenly and dramatically, "turned off".
How to Use Iontophoresis Effectively
During iontophoresis treatment, patients sit with hands or feet, or both, immersed in shallow trays filled with water for a short period of time, (20 minutes) while the device sends a mild electrical current through the water. Wet pads are applied when treating the axillae. The process is repeated 7 times over a 4 week period. Once the desired dryness has been achieved, patients are switched to a maintenance schedule, ranging from once or twice a week to once every four weeks, depending on the individual. To maintain dryness, iontophoresis must be repeated as soon as sweating begins to return.
Sometimes, tap water in certain geographic locations may not contain enough minerals for iontophoresis to work & we suggest adding about a teaspoon of bicarb of soda to the trays of water if you do not get a cessation of sweating having completed the full protocol. It does help some.
If iontophoresis with plain tap water or tap water with bicarb of soda doesn't produce the desired dryness, a prescription medicine called an anticholinergic may be added to the water. In the majority of cases this works. This is called Glycopyrromium Bromide or Robinul. It is available in liquid form and generally only available from dermatology departments.
Women who are pregnant, people with pacemakers, or substantial metal implants (such as joint replacements or plates), some cardiac conditions, or epilepsy should not use iontophoresis. All jewellery & body piercings should be removed before iontophoresis treatment, though the current does not travel above the neck, so amalagam fillings and dental braces are not a contraindication.
If excessive dryness of the skin occurs, skin-friendly, non-perfumed moisturisers (emollients) are recommended. Skin breaks & cuts, should be covered with Vaseline or a similar barrier before iontophoresis commences, to prevent skin soreness. If the skin along the water line becomes irritated due to iontophoresis, Vaseline should be applied to that area before each treatment. To relieve skin irritation that has already occurred, a simple 1% hydrocortisone cream is recommended.
Patients are often concerned about getting an electric shock during iontophoresis treatment, but the current used is not strong enough to cause harm. It is normally described as a mild surge, rather than an electric shock and only happens if the hands or feet are taken out of the baths of water when the current is on. For this reason, it is recommended that hands & feet remain in the baths at all times when the current is running.
Most NHS hospitals in the UK provide an iontophoresis service and sufferers can buy their own machine for home us for just over £300. STD Pharmaceuticals provide a good and informative website and they will send out information packs to all those who request them enquiries@stdpharm.co.uk. They provide machines to most hospitals in the UK and their home machines such as the Idrostar are just as effective as the hospital machines.
I do not recommend iontophoresis machines that are directly plugged into a mains socket when in use. I have seen for myself the harm that these machines can do!
CASE STUDY
The British Medical Journal (BMJ) put together a paper on hyperhidrosis a couple of years ago. Laura, a sufferer of palmar Hyperhidrosis explains how Hyperhidrosis has affected her life and the treatment she has to contain it. Unlike many, Laura needs to add Glycopyrromium Bromide to her iontophoresis machine baths and she does suffer some side effects. However, even in extreme cases like Laura’s, you can see how it has changed her life. Most people do not feel the discomfort that Laura experiences when she has iontophoresis, but, even though her reaction is quite severe, she still persists with it as it enables her to carry out day to day activities as normal. Read Laura’s story here.
Laura is happy to to offer advice and mentoring to younger sufferers. If you feel it would be helpful to talk to Laura, please email me for her mobile phone number. CONTRIBUTE TO IONTOPHORESIS STUDY
I would like to put together some data on iontophoresis and would be most grateful if those of you who use a machine at home would contact me via the website. I plan this to eventually be the most comprehensive study ever done on iontophoresis and if you contact me, I will send you a simple and non-time consuming form to fill in and your data will be added to my study. No names or personal details will be published or sent out to anyone. I promise! When the study has been completed, if we have enough data, it will go on our website. Thank you in advance for all of you who use iontophoresis.
ARE YOU WILLING TO BE INTERVIEWED FOR A SCIENTIFIC STUDY?
Paul Kamudoni from the Welsh School of Pharmacy is doing some research into Hyperhidrosis and plans to make a document to bridge the gap between physician and patient, which will hopefully help sufferers when they are newly diagnosed with Hyperhidrosis.
The document will eventually be published in a scientific journal which will of course help raise awareness of Hyperhidrosis worldwide and not only in the UK.
Paul has already interviewed some people, but needs more participants and hence I am asking you if you would care to join in his research.
This is Paul’s letter and I’d be most grateful if you would contact him directly if you would like to be of help.
Research on the impact of hyperhidrosis on the daily life of sufferers.
Dear Respondent,
I am inviting you to give your input in the new patient centred instrument (measure/index) for evaluating the quality of life of hyperhidrosis patients, currently being developed by the Welsh School of Pharmacy. Our aim is to create a user friendly measure that could bridge the communication gap between physicians and patients and thus improve the diagnosis and management of hyperhidrosis. The input you will provide, by sharing your experiences on how hyperhidrosis impacts your life, will form the items of the instrument, thus enhancing its accuracy and relevance to patients. Additionally, what you share will also contribute to raising the awareness of hyperhidrosis in the medical world, as we intend to publish the results of this study in a scientific journal.
I ask you to share your experiences on hyperhidrosis based the attached guide questions. Please E-mail back your response to Paul Kamudoni . I would like to also ask you for a telephone interview, to further discuss the same topic. Indicate your availability in your E-mail. Further information about the research is available on the blog.
Your response to this invitation indicates your consent to participate in the research project. I would like to assure you that the information you share with us will be treated with utmost confidentiality. Your details will not be shared outside the research team, and the information you provide will not be directly attributed to you in the publication.
Sincerely,
Paul Kamudoni (Lead Researcher)
Please do look at our new website if you haven’t done so already and if you would like to put together a summary in one paragraph of any successful treatment you have had, we may be able to publish it on the website. We are not able to publish all received, but try to give a selection of responses to help others.
Please also remember to tell us if you change your email address, otherwise you will not receive any up to date newsletters. I promise not to inundate you and in fact will probably only write a newsletter once a year or so, as we can now put all new treatments available up on our website very quickly.
I wish you all a successful and pleasant year ahead and I hope you have found this newsletter helpful.
With best wishes
Julie Halford
RGN
Charity Giving: http://www.charitygiving.co.uk/hyperhidrosis
Web Address: www.hyperhidrosisuk.org
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