Irish Dancing Update

Hi All,

Sorry I’ve been quiet lately! I was on a family vacation on a cruise to the Western Caribbean! It was a fantastic trip and I was sad that it had to end.

Now that I’m back, I’ve been catching up with emails and work. Slowly but surely, I’ll get back in the swing of things.

I wanted to write a quick update about the team Irish step dancing class I took.

It was really fun, but I won’t be continuing. I was so anxious during class because my fingers were sweating like crazy and I had to hold hands with the other girls. We were all sweating a ton, (and it didn’t help that we were in a classroom with no air conditioning or windows!!) but I was still too self-conscious about my hands. I couldn’t relax and have fun. I was checking the clock every 5 minutes to see when class would end. It’s unfortunate because the dance part is actually pretty cool, and apparently I am needed for a competing team.

No one said anything about my hands or gave me funny looks, but I still couldn’t get past it. I’m sure you all know how I feel!

Anyway, I’m still taking 2 hours of Irish dance a week (soft and hard shoe) and love it. I’m lucky I found a dance where I can keep my hands to myself, down at my sides.

I wish HH didn’t have to be my deciding factor with something I love, but I guess I’d prefer to not be anxious and self-conscious so that’s how this one has to go.

My next goal with my partially dry hands- learn knitting! 🙂

Thanks for reading and enjoy the end of summer!

Caryn

Further Experiences with Iontophoresis- Success!

Since my first treatment with the R.A. Fischer Iontophoresis device, I have been able to work the device myself without help. If you work the machine yourself, it will take 40 minutes, even if you are just treating your hands.

While by myself, I use one tray for my left foot and one tray for my left hand. I am then able to work the machine with my free right hand. After 20 minutes, I repeat with the right hand, using my left hand to work the machine.

Generally, I will only feel a little discomfort when using the device with the vibration sensation. However, I have felt pain during a few treatments. Sometimes my hands or feet will feel like they are burning. When this happens, I immediately decrease the milliamperes until I feel comfortable again.

The pain may be caused from excess tap water in the tray. The extra water by my wrists causes some pain and I noticed after the treatment that my skin near my wrist turned red and it was also itchy. After the first treatment, I even noticed a little swelling. The swelling went down within a few hours. I have also experienced a red line along the entire side of my hand, from where the water level rested. You can see this in the picture below. Don’t worry- the red irritation goes away. My hands were fine by the next morning.

R.A. Fischer president, Bill Schuler, suggests if switching charge midway through the treatment causes discomfort, I can switch every other treatment instead. So far, I haven’t had a problem switching mid-way through.

Bill also suggests that you use the machine every other day for the best results and that results are most commonly seen after 6-10 treatments. After that, I read that you may use the machine as needed, usually once every 2-4 weeks.

Although the NYC heat is doing its best to work against me, I am seeing results with the device. I have even tried to will myself to sweat and am unsuccessful. Is this too good to be true?

I still feel the same sensation as when my hands and feet did sweat.  My hands and feet get very hot and tingly, but my palms and soles of my feet are dry. The sides of my fingers and feet will get clammy but I think that is because the water in the trays does not reach that area. This doesn’t really bother me. Also, I am happy to report that I have experienced no compensatory sweating from Iontophoresis!

I have finished initial treatments but I am going to keep an eye on my progress and will continue to devote my time to the machine when needed. I will keep you posted, but so far, I recommend this machine to people with HH!

All best,

Caryn

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Irritation from the Iontophoresis device. This goes away fairly soon.

My First Experience with the Iontophoresis Device

A couple of months ago I was offered an opportunity to try an Iontophoresis machine for my Hyperhidrosis. The makers of the R.A. Iontophoresis device loaned me a prescription machine- the MD-1a Galvanic Unit! I have been working with Bill Schuler, R.A. Fischer president and long-time supporter of the International Hyperhidrosis Society, over the phone and via email for tips and coaching and updating him of my progress.

What is Iontophoresis, you ask?

Defined from the R.A. Iontophoresis website: “In cases where antiperspirants are not effective, a physician may recommend “Tap Water Iontophoresis” for treatment of palmar or plantar hyperhidrosis. In medical terms, iontophoresis is defined as the topical introduction of ionized drugs into the skin using direct current (DC).”

My first experience with this machine caused a lot of anxiety. I opened the case and saw a lot of wires and many booklets and sheets of paper with instructions.

Francis and I read through all the directions, we set up the machine and prepared the trays with tap water. This being the first time, it took us about an hour before we actually turned the machine on. I’m glad we went through everything thoroughly because I felt that the machine could be dangerous to me if something was set up incorrectly. Francis used to work for the American Red Cross and I was happy that his medical instincts took over as he carefully made sure everything was hooked up properly. He let me focus on calming my nerves. I already knew the general idea of the device as I had tried Iontophoresis about 10 years ago with no success, but this machine looked a lot more intense.

I opened the case to find that it conveniently slides apart to become two tap water trays. One metal plate rests in each tray and a cloth goes on top of the plates to avoid any direct contact with the skin. Each plate is connected by a wire to the main device where you change the level of milliamperes. The instruction booklet said that you should aim for setting the device to 12-18 milliamperes.

Finally, after making sure everything was hooked up correctly, I was ready for my first test with the device. Each of my hands rested in a tray on top of the cloth covering the metal plates. We were ready to turn the machine on.

Although I knew the machine was safe, I couldn’t help fearing that I would somehow be electrocuted and pass out once the power button was switched on. I could feel knots in my stomach and my breathing was fast. I was really nervous.

During the first treatment, Francis was responsible for working the device and changing the level of milliamperes. He counted to three and he turned the machine on.

Phew- I was okay!

Francis gradually increased the milliaperes to 12- we didn’t go any further than that on this first try.

What I noticed most was vibration. The vibration was pretty severe during my first try- vibrating my fingers, palms, wrist, and half-way up my forearm. If the sensation was getting to be too much, I asked Francis to lower the milliamperes slightly.

The vibration sensation was not painful, just a little uncomfortable.

After ten minutes, it is instructed to gradually decrease the milliamperes to 0, reverse the charge, then gradually increase again between 12-18. This lasted for another 10 minutes, and then my treatment was done for the day!

I was happy to find that the treatment wasn’t painful and that I felt safe. The treatment takes a lot of time, but I was able to watch TV during it. Watching TV also helped keep my mind off of any discomfort I felt with the vibration sensation.

I was also relieved that Francis was with me for my first treatment. He was very supportive and protective of me and made sure I was feeling okay.

After the first treatment was over, he wanted to try the machine to see what I was feeling! I let him try it very briefly, and we only went up to about 6-7 milliamperes. He could feel the vibrations from the plates.

This really showed me how much he supports me and that he was willing to step into my shoes, so to speak. His actions spoke largely about his character.

Stay tuned for another entry about my other treatments with the Iontophoresis device!

Best,

Caryn

Carrying case for the R.A. Fischer Iontophoresis device. The case comes apart to become two tap water trays for the treatments.

Carrying case for the R.A. Fischer Iontophoresis device. The case comes apart to become two tap water trays for the treatments.

The milliamperes are adjusted on this device during treatments.

The milliamperes are adjusted on this device during treatments.

During my first treatment, I treated both of my hands at the same time because Francis was adjusting the milliamperes on the device.

During my first treatment, I treated both of my hands at the same time because Francis was adjusting the milliamperes on the device.

 

Luann Comic- Hyperhidrosis

Hi All,

This weekend, the popular Luann comic strip mentioned Hyperhidrosis! Thank you to my Aunt (who also has HH) for bringing this comic strip to my attention!

I am so happy and surprised that HH is mentioned, and by name too! I feel like this comic strip just made HH history. So many people read the Luann comic. It was my favorite comic strip growing up!

Greg Evans (Luann creator) was just able to reach thousands about HH. I am so curious what the response is! Thank you!

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All best,

Caryn

Tell Someone about HH- Challenge!

Hi All,

Now that you have some tips for telling people about HH, I present you with a challenge: Tell someone new about your HH this week!

Telling people about my HH has made me feel more comfortable in my own skin and has helped me cope with the emotional aspects of the condition.

I am less anxious when I go to rehearsals with my quintet because they know why I need to use a towel sometimes. I am less embarrassed and self-conscious as I sweat uncontrollably in the hot summer sun when I’m out with a friend because they know I can’t help it.

Now, I want to hear from you!

Please leave a comment about a time you told someone about your HH.

How did you do it?
What was their reaction?
How did you feel?
Did your relationship with that person change?
How is your relationship with that person now?

Good luck, and as always, thanks for reading!

Caryn

How to tell Someone you have Hyperhidrosis

Hi All,

I know that telling people about your HH is really difficult and scary. Sweat is a taboo subject at the very least, but it has also proven to have negative connotations in society. So, we hide, conceal, disappear, and avoid doing what we love.

HH creates a physical disability, but also a social one. One day, I hope that HH is a commonly known condition. One way we can help the cause is by telling people about HH.

Every person you tell is one more person with understanding and awareness. Knowing this gives me a little boost of courage. I tell people about my condition for the HH community.

Here are a few ways I have told people about my HH:

1. I find the most effective way to tell people about my HH is in person. Usually, I will wait until I have visual example to show the person, ie. Excessively sweaty hands. I don’t tell just anyone. At this point in my life, I am only telling people who I have known for a while and trust/care about a lot. After some time, I know I can trust my relationship with the person to remain the same even if I open up about HH.

Sometimes, the opportunity will present itself. Maybe the person will notice and ask about it, or you’ll experience an embarrassing situation where there is absolutely no way to hide, or it’ll be really hot out and you are sweating much more profusely and noticeably than they are.

I usually start by saying, “I have a medical condition called Hyperhidrosis. It’s difficult for me to talk about, but I struggle with it every day and I’ve had it my whole life.”

When telling people about your HH in person, you are able to answer questions and have a dialogue about it. You are also able to make sure they fully understand all aspects of the condition and how it impacts your life. Understanding the full impact is very important, as we all know that HH is NOT Just a Little Sweat.

Last, when telling people in person, you are able to see their facial expressions and gauge their reactions. When I email people about my HH, and they don’t respond right away, I can never be sure what they are thinking. By telling people in person, you have a much more immediate and honest reaction.

2. You can email/snail-mail people you trust about HH. I have done this several times. Sometimes it’s just easier to hide behind the computer. I have emailed and sent Facebook messages to some of my closest friends. Some members of my quintet found out about my HH through email. I have also emailed co-workers and old college friends.

I try to write a very open and honest letter describing HH and what it has meant for me to live with it every day. I also mention how important it is that I can be open with them about it from now on. This does not mean that I need to talk about HH all the time. I just don’t want people to be quiet about it and treat it like some secret that I want hidden. That’s not the point. The point is to start feeling normal with our condition.

3. If you want to stay anonymous but still help the cause, tell someone by blogging about HH! That’s how I started. I wrote this blog anonymously for a really long time.

Blogging was and is very therapeutic for me. I used to be so angry about HH, but recently am focusing my efforts more positively. As a result, this blog has helped me and others.

Please feel free to add any other tips for telling people about HH. Have courage and good luck to you all out there!

Caryn

Hyperhidrosis Genetics Study

This past year, I participated in a study conducted by the Albert Einstein College of Medicine on the genetics of Hyperhidrosis.

In today’s e-newsletter from the International Hyperhidrosis Society, I learned of some findings from the study. You can read the article HERE.

If you are living with HH, I encourage you to contact the College of Medicine and participate.

My experience with them was very positive. I was mailed a free kit that included a HH questionnaire and supplies for DNA samples (mouthwash samples).

After the questionnaire was complete and mouthwash samples were collected, I mailed the kit back to the Albert Einstein College of Medicine, free of charge.

It is important for your family members to also participate in the study whether they have HH or not because genetics and heredity are being tested.

Thanks for reading,

Caryn

 

What do you say?

Hey All!

I’ve had a great time responding to all your comments from the article, and it’s time to get back to posting! Thanks for your patience!

For some time now, I’ve wanted to write about my palmar HH and what I say or think  about my hands when they are extra sweaty.

Palmar HH is really difficult.
If my hands are extra sweaty and I’m in a meeting, I literally can’t take notes. I can’t even move.

The other day I was in an awfully stressful meeting. I literally sweated through half a notebook- just by holding it.

If the sweat wasn’t enough, I was also super self conscious about my neck and chest blotching and was trying so hard to cover it up.

Other examples of Palmar HH struggles:
If I’m on a hot platform waiting for the subway, I can’t read a paperback book or a newspaper- I can’t even hold it! (Recently switched to Kindle and loving it)
Also, just last night, I was trying to answer emails on my Mac and my sweat was interfering with the trackpad! Can’t catch a break.

Palmar HH is so annoying!

Here are a few things I say about my hands:

My hands are…

1. melting
2. not working right now
3. broken
4. bad
5. a mess
6. not behaving

I’m sure I missed a few.
What do you say about your palmar HH?
Please leave me comments!

Thanks for reading,
Caryn

Thank you!

Hi All,

I wanted to thank you for reading the article posted by the International Hyperhidrosis Society this week! This article has been a very positive experience for me and I feel like it connected the HH community even more!

Thank you for your emails, comments and supportive words. Reading through all of your messages has been very powerful and emotional.

I identify with you all your stories and am just like you- trying to live as “normal” of a life as I can with HH.

Please continue to be strong and have the courage to tell someone new about your HH today. We can all get through this together.

I hope you all enjoy your weekend and stay cool! 🙂

Best,

Caryn

I was featured by the International Hyperhidrosis Society!

I wanted to share some exciting news!

Today I was featured in an article in the International Hyperhidrosis Society eNewsletter! Sharing my HH story with others has been a really rewarding experience and I thank the International Hyperhidrosis Society for giving me the opportunity to share with so many of you!

Please click HERE to read the article.

The International Hyperhidrosis Society is a fantastic support site for people with Hyperhidrosis. They share a wealth of information including HH education, tips for coping, stories from others with HH, deals and discounts on sweat-helping products, research studies, treatment information, a comprehensive search for doctors, ways to get involved and more! I have had a really positive experience communicating with them in preparation for this article and always find their website helpful. Please check it out!

All best, and stay tuned for an entry about the Iontophoresis machine that was just donated to me from R.A. Fischer iontophoresis devices !

Caryn