Entire Medical Journal dedicated to HH

Last week, I received an email from the International Hyperhidrosis Society stating that an entire issue of the Dermatologic Clinics medical journal was dedicated completely to Hyperhidrosis! This is ground-breaking news and I wanted to learn more. The issue is found in October 2014, Volume 32, Number 4. It covers topics such as:

  • Prevalence of HH
  • Impact of HH on Quality of Life
  • Special Considerations for Children with HH
  • Topical Therapies
  • Iontophoresis
  • Botox treatments
  • Oral medications
  • ETS surgery
  • Emerging therapies
  • Resources for patients and sufferers
  • Incorporating diagnosis and treatment into Clinical Practice

You can purchase the entire issue or individual articles. This is a really exciting breakthrough for people with HH. The issue will be available to medical specialists and provide education on our condition and the latest treatments available! Just another big step in the right direction for universal awareness and understanding.

Advertisements

Announcing a New HH Blog to the World!

Hi all,

One of my readers has started her own blog about her experiences with Hyperhidrosis. Her name is McKenzie and she had ETS surgery but now suffers from CS (compensatory sweating). Her blog is called The Sweaty Blog and it’s her goal to provide a feeling of community and relief. Check it out!

Best,

Caryn

ETS Surgery, Part 3- Compensatory Sweating

I was penciled in at Columbia Presbyterian Hospital to get the ETS (Endoscopic Thoracic Sympathectomy) surgery in December 2011.

I was all for it at first- too frustrated with living with myself. Every day, struggling with the smallest of tasks.

All of my friends and family seemed pro-ETS. They just wanted me to be happy and live a better life.

At the last minute, I cancelled my appointment.
The reason being the potential side effects.

I began reading horror stories of compensatory sweating. Stories where people began sweating all over their bodies, much worse than their hands had ever been.
Some stories were about people who didn’t leave their houses anymore, couldn’t wear their usual clothes, or refused to hug their loved ones. Many stories were about people who became depressed.

My boyfriend, Francis, started to worry about this surgery. He wanted me to be happy, but he didn’t want me to change. He thought the potential side effects were way worse than what I was currently dealing with. We both didn’t want to risk the compensatory sweating.

My hope is that the surgery continues to improve with a lower risk of compensatory sweating. If this happens, I will most likely get the surgery.

Until then, I am living the best I can.

Best,
Caryn

Glycopyrrolate (Robinol)

After being off the Glycopyrrolate medication for 1 year and 3 months, I started up again this past weekend.

I went off the medication because I was feeling immune to it, but my doctor and I thought we could try it again and see what happens.

This medication worked miraculously the last time I was on it (2007-2011). I was really hoping I would receive the same results.

So far, I have!

The medication worked almost immediately. My hands and feet are dry.

The one side effect I am struggling with is having a dry throat. My doctor says this may go away with continued use.

It is a strange sensation, being on this medication. My hands will still get hot and really feel like they are sweating, but they are not.

Personally, I worry a little because I want to have that visual of sweaty hands to explain to people what HH is. As someone who wants to help the HH community, I feel like I should continue struggling and suffering with it. I want it present in my everyday life.

This might sound crazy to you. To purposefully want to struggle with HH. I guess I just never want to forget about it. I never want to dismiss its impact on my life and others.

We will see how this medication goes. So far, I’m dry. So far, I’m still passionate about helping the HH community.

I recommend this medication to anyone suffering with HH.

Thanks for reading!

Caryn Joan

Have I avoided this enough yet?…Part 2

Okay…no more avoiding.

In September 2011, I went to the Columbia University Medical Center’s CenterĀ  for Hyperhidrosis in NYC for a consultation for the ETS surgery. This was the day of that crazy water main break in the subway systems…remember that? How appropriate.

I went with my mom. When we arrived, I was asked to fill out some paperwork. It started fine, but a few minutes in, my hands started sweating uncontrollably and I had to have my mom finish the paperwork for me. Glad she was there.

We sat in the waiting room, and I felt like no one around me had HH. It was the waiting room for Thoracic surgery. I quickly noticed all of the old men and woman I was waiting with. They couldn’t breathe very well.

It makes sense. ETS does have the word “Thoracic” in it, since the procedure includes going through the chest. But why do I still feel out of place? I guess I just wish the Center for HH really felt like a Center for HH.

The consultation was pretty good, but I didn’t get the best vibe from it. The surgeon assured me that deflating the lungs was the least of my worries.

Never the less, I started tying loose ends with my insurance company and penciled in the surgery for December 29, 2011.

I still have HH, so I obviously didn’t go through with the surgery.

Why you ask?

Well, I’m realizing that this entry will be a multiple post entry. There’s a lot to say, and this is why I’ve been avoiding it I think. It’s very sensitive.

Stay tuned for Part 3.

Thanks again,

Caryn Joan

Have I avoided this enough yet?…Part 1

ETS stands for: Endoscopic Thoracic Sympathectomy.

For the most vague and quick definition, WIKI says it pretty well- “Endoscopic thoracic sympathectomy (ETS) is a controversial surgical procedure where certain portions of the sympathetic nerve trunk are destroyed.”

This surgery is most commonly used to cure palmar hyperhidrosis. Some doctors will guarantee that 100% of palmar sweating will be cured following this procedure.

This is how and why I found about the surgery:

Last summer was probably the worst summer of my life. It was my first summer living in NYC full time. And it was HOT!

As you know from my previous entries, you know that I struggled a lot. But what you don’t know is that I told my parents last summer that my HH was so unbearable at times that I wanted to throw myself in front of an oncoming subway train.

There, I’ve said it. Please don’t worry about me. I’m fine and mentally healthy now. I didn’t want to end my life for any other reason than feeling disgusting in my own skin due to HH. But, I’m sure you can imagine, this is a pretty big deal. In the heat, I literally can’t move. I need to stand, frozen and still. I need to bury myself so deep inside and try my best to meditate out of the distress I’m in.

Here comes another summer…pretty nervous about it, as it’s already really hot- and it’s just May!

Anyway, my parents were pretty worried about me. My mom had researched about the surgery for a while and gathered all these materials, yet she didn’t tell me until the end of July.

My family and I were going to Arizona for vacation. We were in line for security. I’m wearing sandals.

Why did I wear sandals? How did I forget that you need to remove your shoes before going through the metal detectors? And what’s that up ahead? No rug! Black linoleum.

So there I was, freaking out in line that I was going to 1.) leave embarrassing sweaty foot prints on the linoleum and 2.) cause myself danger by slipping and sliding on it 3.) cause attention to myself in a place where I really shouldn’t be.

My heart is pounding, I’m sweating profusely, and all of a sudden my mom goes:

“You’re getting surgery.”

What?!

My mom tells me about her research and that there’s a surgeon in NYC who does the procedure. She seems very enthusiastic, yet, there’s something she’s not telling me.

“I’ll tell you later,” she says.

No, tell me now.

“They need to deflate your lungs.”

No way.

 

I don’t think I’m alone in the fear of doctors and hospitals and needles and anything invasive. So, my first reaction to learning about the surgery was me freaking out about the prospect of my lungs being deflated.

My mom brought all of her research with her, and I read through it on the plane to Arizona.

I literally started crying on the plane reading the material.

It was just so emotional to know there was a “cure” out there that would help people like me. I just thought about all the pain (emotional) I’ve been through and other people have been through and how much HH sucks.

 

If you have HH, I suggest you do a TON of research about ETS surgery. As WIKI says- it’s a “controversial surgery.”

Please don’t take this post to mean that I support ETS.

Stay tuned for Part 2 to learn what I have decided to do.

 

Thanks for reading, and feel free to ask questions.

Caryn Joan