Michelle Sawicki

Dan, As you know, I'm so very happy for you that the ANS problems are diminishing. Hopefully the throat problems will do the same as well. Hang in there! Michelle

Dawn, So good to hear all went well! There is a kids dysautonomia groups at: www.dynakids.org They have info that can help her (and her school) understand what she is going through. Take care, Michelle

The PDR (Physician's Desk Reference) has pics of meds in it. Your local library probably carries it. Michelle

Those are definitely words of wisdom, Tearose. One of the hardest things for me to deal with when I got sick was knowing that my life was no longer "on course". It seemed that everything was out of my control all of a sudden. I never did get back on my original course...but my life has gone in a new direction and I now have new dreams. Meghan, keep in mind that research shows most POTS patients do improve with proper treatment. It probably won't happen over night, but the odds are in your favor that it will happen. Hang in there! Michelle

Hope the Sonata works well for you, Steph. Let us know how things go. Michelle

I take 12.5 mg toprol each morning. Sometimes, when I'm not feeling so hot, I will take another 12.5mg in the evening. I have taken it on nights when I can't sleep, as it helps me get sleepy. Make sure you ask your doctor if it is ok for you to take it at night before you do so. I hope this helps and that you're feeling better soon. Michelle

Dawn, Please let us know how things went at the appointment. Your daughter has been in my thoughts and prayers. Michelle

I still have some sleep issues....as I'm typing this it is 4am. However, I sleep much better now then when I first became ill. Usually I can take a small dose of beta blocker on the nights I can't sleep and it puts me right out. Other nights I enjoy the quiet and get some work done. Tonight is one of those nights... Michelle

Walking always helps me to warm up. Sometimes I can be sitting here at my desk FREEZING, but then I can get up and walk around for 5 or 10 minutes and feel warm again. Michelle

CONGRATULATIONS to you, Pam! Wonderful news! Congrats to you too, Nina! Though I still think you need to come join me in reference... Michelle

I wonder if sleeping with the head of the bed elevated would make a difference? Michelle

I noticably lost weight when I was first sick as well. My bones jutted out and my mom later told me she was really worried about me because my "face was all sunk in". I am still thin and have been all my life. I don't put on weight...no matter how much I eat. I've heard that people with EDS can have "marfan-like features". I'm not tall, but I do wonder if this might be the reason I am thin. Who knows? Michelle

Welcome to the board, Silvia! I was very "trembly" when I first became ill. It is rare that I feel trembly now, almost 5 years later. The beta blocker did help me with the trembling. Hopefully the added salt will be of benefit, especially since you were on a low salt diet before. I also wear the support stockings, though I use the waist high ones. It really is impossible to predict how long it will take for you to feel better. If you get on a medication that really helps you may begin to feel better soon (sometimes you have to experiment with several different meds till you find one that helps). Now that you know what "got you" you will know how to fight it, and what will help and what to avoid. Hopefully these things will set you on the road to recovery. I was very sick with POTS at one point in my life. I now am back to work 3 days a week, I run DINET, I am on the board of another organization, I am on committees at work, I have a family, etc... I live a fairly normal life. Hang in there, things can get better. Michelle

You know Nina, you should come join me in reference....you'd be good at it. If you ever get burnt out on those kids.... Michelle

Thanks for explaining the tax deductible part, Nina. You can send donations to the addy listed on the contact page of the website: DINET PO Box 55 Brooklyn, MI 49230 Thanks for trying to help. Michelle

Thanks Katherine! I will be in touch. Michelle

The link appears to be working now. Thanks for thinking of DINET. We've been operating in the red and really need financial support. Hopefully we'll be able to get some grant money this year to pay for the basics. We're saying our prayers and keeping our fingers crossed! Michelle

It doesn't exactly fit into the "postural" "orthostatic" part of postural orthostatic tachycardia syndrome either, now does it? Michelle

Hi Geneva, I did a little poking around on Pubmed and couldn't find anything about people with certain types of EDS looking younger...but a doctor did tell me that some EDS patients tend to look young. Maybe it has something to do with the very soft, baby-like skin? This website has some good EDS info. Michelle

Doctors are finding more and more links between mono and other diseases. One day it may be linked to POTS...there are a lot who speculate that it is. Here is a link where you can read more about EBV and other diseases, but I must warn you that it isn't pleasant reading: Here is the link Michelle

Nina, you look YOUNG. I wasn't saying that just cuz your short...LOL! When we met I thought you were in your 20s! Michelle

Sorry I did not elaborate.... I was referring to Ehlers-Danlos syndrome. Some of us with EDS have long fingers and tend to look young. You should see Nina....she looks REALLY young! I didn't believe her when she told me her age. If you read this newsletter and this abstract you will understand the connection better. Take care, Michelle

I think my father's mother's sister (is that my great aunt?) may have EDS & mild dysautonomia. She has the same long EDS fingers that I do and she looked very young all her life. She also complained that sometimes "her heart would run away on her". She had a sister that may have had dysautonomia as well. Her sister had the same "running away heart" when she was in her 30s. The doctors treated her with electric shock therapy. She had a stroke and died a week later. This happened about 50 years ago. I do have a sister who experiences pooling blood, especially when getting out of the shower. Like a classical EDS patient she can pull the skin on her face out very far (it looks really gross), as I can the skin on my back. But she is not hypermobile and doesn't seem to have "POTS". My other sister is very hypermobile but doesn't have any skin involvement and doesn't have POTS symptoms. So I think a genetic predisposition runs in my family, and that I was just hit worse than my other two sisters. They both have raynaud's and I don't. Michelle

Yep...it used to happen to me all the time. Michelle

I second what Nina said. I probably sound like a broken record with the "see your doctor thing", but I only say it because I learned the hard way. A few years back my periods were pretty screwed up...I would maybe have a period once every 6 weeks...and I just chalked it all up to POTS. This went on for about a year or so. When I finally did go for a pap smear -which I didn't do regularly- they found I had an ovarian tumor. It was the size of an orange and -luckily- turned out to be benign. Had it been cancer it may have already spread. Not trying to scare you (or anyone else)...but I think it is important to seek out a professional opinion when we have a new symptom or when something is exacerbated or just doesn't seem right. If nothing else, it will (hopefully) give us peace of mind. Take care, Michelle