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Sunday, May 08, 2011

An online focus group discussion


Thanks to Paul Kamudoni for letting me know about work being done at the Welsh school of pharmacy, Cardiff University,  to develop a patient-centred instrument (measure) for assessing the quality of life of hyperhidrosis patients. He commented on an earlier post, and I have copied his note to make sure it gets some notice:


An online focus group discussion will be conducted to discuss the impact of hyperhidrosis on everyday life of patients. 

If you are interested in sharing your experiences please contact Paul Kamudoni using the following address KamudoniP@cardiff.ac.uk



Thanks again, Paul. I would like to participate if it is not too late. For those of you on the fence, this type of research is important in convincing insurance companies to cover hyperhidrosis treatments. In addition, this kind of assessment is needed so that health professionals can take the problem more seriously. Because wiping your wet palms on your pants is NOT treatment. Hyperhidrosis affects the quality of our lives.


Tiara
Iontophoresis: Delayed Treatment

As I posted two months ago, I now have a prescription for iontophoresis. Out of pocket, this unit will cost about $600-800 USD, and given all we pay for health insurance, I of course am trying to get my health insurance company to pay for it. The details are too boring and repetitive to share, but in short, I'm getting bounced between the insurance company (who tells me I have the wrong code for the device), the device manufacturer (who says I have the right code), my doctor (who says I should go through a medical device company in order to get covered), and medical device companies, whose representatives claim they have not heard of the iontophoresis unit and won't call me back as promised. Life is so hectic right now and I simply don't have the time during business hours to spend hours on the phone with all of these entities. I am going to take a vacation day just to get around to it. Or show up in person at the medical device supplier myself.

I hope I can work this out soon as I would really like to wear sandals this summer!

Sigh...

Love,
Tiara

Saturday, February 26, 2011

Hyperhidrosis treatment hope?


Yesterday I went to the dermatologist for a general checkup for skin cancer prevention. It was a new dermatologist, fresh from medical school. I had previously given up on getting treatment for my hyperhidrosis. More than 10 dermatologists had informed me that they would not work with me to get an iontophoresis machine and show me how to use it. However, they would be happy to give me expensive and painful Botox injections in my hands and feet. Truthfully, I had given up on getting treatment and had resigned myself to life with sweaty palms and feet.

But the doctor yesterday agreed to try to help me get an iontophoresis unit through my health insurance provider.  She said she would draft a letter of medical necessity on my behalf.

I began to cry as I sat there on the exam table.

She said she'll get back to me in a week or two with next steps.

If you've read my previous blog posts, you'll recall that I believe iontophoresis is my best treatment option for my primary focal hyperhidrosis. Surgery is too risky. Botox is too painful and expensive -- and short-lasting.

Wish me luck!

Saturday, February 12, 2011

Sharing Your Excessive Sweating (Hyperhidrosis) Stories

For several years, I have solicited and published stories by people with hyperhidrosis. I have decided to stop doing so because I feel I cannot respond to the many e-mails I receive with the care they justify. I am a full-time working mom and I simply don't have much time to respond to these personal e-mails. Instead, I wish to focus what little spare time I have on original research and reporting related to hyperhidrosis. So please stay tuned.

I am often approached by other bloggers asking me to link to them. Usually, these bloggers are selling products in such a way that I question their trustworthiness. However, there is one hyperhidrosis website that I particularly admire: no-ets.com. The site has a hyperhidrosis forum that is active and useful. As such, I encourage people to share their stories on this forum rather than e-mailing them to me. That way, you will increase your chances of receiving the support you are seeking.

I like that the website's author recommends other treatments before highly risky ETS surgery. He had ETS surgery with mixed results (he ranks his satisfaction as a 7 out of 10), and suffers from compensatory sweating, as do many other ETS patients. He is still seeking help for his excessive foot sweating, as am I.

I did not vet every single post on his website, but the ones I saw seem impartial and based on research.

Please keep following my blog, as I will continue to post.


Underarm Sweating: Is a Cure in the Works?

A medical device company recently won government approval for a device it claims stops excessive underarm sweating, according to the Wall Street Journal.

The company, Miramar Labs, Inc., seeks funding to help bring this product to the market. However, it is unclear when this might happen.

Miramar CEO told the Wall Street Journal's Dow Jones Financial Information Service that the device sailed through a recent randomized, blinded sham-control study with 120 patients, which was followed by a 510(k) approval by the Food and Drug Administration.

For more information, see the Financial Information Service article, "No Sweat For Miramar Labs; Gets Device Approval, Seeks Funding" and the Miramar Labs website.



Friday, December 10, 2010


Public Speaking Next Week!

Next week, I must make a presentation in front of approximately 25 people. Just thinking about it makes my hands sweat. I've got to ramp up the yoga again. Practice the presentation so I am ready and expecting to succeed.

Photo courtesy of WordRidden, Creative Commons. http://www.flickr.com/photos/wordridden/205941900/

Saturday, September 18, 2010



Medications for Hyperhidrosis: What's the Latest?

New from sweathelp.org:

Medications for Hyperhidrosis: What's the Latest?
Oral medications can be used by certain hyperhidrosis patients to successfully control their excessive sweating. But it’s not a one-size-fits-all therapy; only specific kinds of hyperhidrosis respond well to oral treatments. In this article, we discuss the in’s and out’s of anticholenergics and other oral medications used for treating certain types of hyperhidrosis. Could systemic medication be the right for managing your type of excessive sweating?
Botox for Sweaty Palms: Fail.
Drinking Alcohol to Ease Hyperhidrosis Anxiety: Danger.

A sad story from a reader who tried Botox for palmar HH and found his sweating was worse than ever. I am quite surprised to hear about the bad results because I had heard that others had good results from Botox injections. The main complaint I have heard about Botox is that the treatment is too expensive. However, I have heard that axillary (armpit) injections are more effective than those on the hands and feet. In any case, I am not a medical expert, so please talk to your healthcare professional.

The reader's letter brings to light the all-too-common and dangerous self-treatment technique: alcohol and other drugs. I used to drink excessively in my late teens and early 20s to relieve the anxiety caused by my hyperhidrosis. Thankfully I was able to stop, but for others who have a genetic predisposition to addiction, stopping is much more difficult. In any case, self-medicating with alcohol and other drugs is NOT a good idea and is not a sustainable strategy.

His letter also underscores the problem with our healthcare system. Botox is much more profitable for physicians than treatments such as iontophoresis, which is a recommended treatment for palmar hyperhidrois, but it is so hard to find a doctor who will prescribe that treatment. The upfront investment likely costs less than a Botox treatment.

Any suggestions for this young man? Clearly, he is intelligent and has much to offer others. I would suggest going to sweathelp.org, reading up about the other treatments besides Botox and surgery, then talking to a primary care physician or dermatologist.

Love,
Tiara

--------------------------------------------------------------

Hi Tiara,

This is my story and you may share it:

I have been living with hyperhidrosis for over ten years now. I noticed the "problem" when I was 13 years old. I was in eighth grade, sitting in math class one day, when I looked down at myself and noticed that the armpits of my T-shirt were completely soaked. Beyond embarrassing, it was so confusing to me since the classroom was comfortably cool. I began to realize that there was something wrong with me when the sweating persisted day after day, usually during a class session. I guess over the next couple of weeks or months, the sweating spread to my hands as well as my feet, making it extremely difficult to focus and take notes in my classes. Despite the fact that both my father and grandfather are surgeons, my fear of humiliation got the best of me and I never talked about my problem to anyone. At the time, I figured that I was the only person on Earth with such a condition, and that nobody would be able to treat me. I felt like such a freak, even though I had great people skills, good looks and health, and thought of myself otherwise as a pretty normal kid.

As bad as the problem was, I taught myself to just deal with it. I would only wear certain clothing, I would constantly stuff my armpits with papertowel underneath whatever I was wearing, I would keep some type of super-absorbent material in my backpack and when the sweating got really bad, I would covertly reach down into the bag and wipe my palms with whatever it was. I was pretty good at concealing the problem from everyone, despite its magnitude.

My sweating continued from that point on, with highs of profuse sweating and lows of slight dampness depending on the timeframe. It wasn't until halfway through my senior year of high school that the sweating got really out of control, particularly in my hands (or at least I focused on my hands since they could not be hidden as well as other parts of my body). I briefly saw a psychologist, but terminated therapy because my sweating seemed to increase just talking about it.

Somehow I managed to do well academically in all the schools I attended, until my junior year of college. It was then that the sweating got so bad that I just stopped showing up to my classes unless absolutely necessary. My GPA dropped dramatically and I almost did not graduate on time. In addition to taking its toll my studies, the problem affected my relationships with important people in my life. Having usually been outgoing and popular among my peers, I became reclusive and anti-social, I became estranged from most of my family members, lost several good friends, and I began to think I was destined to live a very lonely life. I dated casually, but was never able to maintain a serious relationship since I would not allow myself to get too close to others. Behind closed doors, I drank heavily and tried a multitude of recreational drugs. I felt as if I was living such a duplicitous life, which in retrospect, probably explains my interest in spy-themed movies and novels.

I got a job at a non-profit organization immediately after college (two days after graduation) to avoid having to move back home with my parents. In the last twelve months, my job has required me to do more "spotlight" work, such as giving presentations to large crowds. Being at the center of attention triggered my sweating to what felt like a dangerously high level. The first time I seriously considered suicide was the week I found out that I would be speaking at a national conference. I don’t exactly know how I made it through that speech since I drank so much beforehand to calm my nerves. Miraculously, it went very well from what I was told, but the memory is still a blur since I was secretly drunk for that 30 minutes in front of the podium.

I finally sought help the following week when I returned home from the conference. After all the research I had done, it seemed that Botox injections had a very high success rate for curing palmar hyperhidrosis. Since my health insurance covered only so little, I would have to pay mostly out of pocket. I managed to save up enough money to cover the deductible (just under $1500) to get it done at the office of a reputable plastic surgeon that specialized in hyperhidrosis. Starving myself for two weeks and paying my rent over a month late was, in my opinion, a small price for what seemed too good to be true: dry hands. After a painful 50 injections in each hand (100 shots total), I left that doctor’s office feeling as if my life was about to change for the better. Unfortunately, that s*** did absolutely nothing.

Ever since that conference this past May, my sweating is the worst it has ever been. My hands are wet even as I write this email. The sweating has also spread to other areas of my body such as my chest, stomach, and thighs. No matter where I go or what I do, whether I am riding the subway or lying in bed watching a movie, I cannot tried hypnosis. Nothing works to alleviate the problem. I’m sure most people would not know it by looking at me, but this is the most depressed and hopeless I have ever felt.

A 24 year-old man, I have always considered myself an independent and resilient individual with so much life to live. But if this sweating disorder is a problem I must live with forever, let’s just say I am not looking forward to the rest of my life.

Monday, September 13, 2010

Acupressure for anxiety

For those with mild to moderate hyperhidrosis, acupressure might help. Basically, you apply pressure to various points of your body. Some believe that acupressure can relieve anxiety. Sure, massage is better. But acupressure is free.

Try these acupressure techniques and let me know if it helped. They helped me! Then again so does chasing soccer balls, petting puppies, and watching Will Ferrell movies.

Love,
Tiara






Saturday, April 24, 2010

Hyperhidrosis and Me.com

I'm just starting to review this website -- definitely worth checking out -- http://www.hyperhidrosisandme.com/.

More later...just wanted to pass on the link.