shannon

Lauren, Thank you for sharing your poem with us. It was beautiful!!! You are a wonderful writer.

Hmm, this is a tough one to answer. One of my weirdest symptoms is probably this feeling that I can't get a deep breath. It is more uncomfortable than anything....and also very difficult to describe. I've also had temporary blindness and loss of hearing.

Mornings are the worst for me. I really have to pace myself while getting ready. Evenings are usually the best time of day. I had never heard any explanation for this before until Lois' post. That was really interesting.

My pupils are dilated a lot too. I'm wondering (for those of you who wear glasses), have any of you been successful in discussing POTS with your eye doctors? I am interested in how POTS may effect my pupils and eyes, but my eye doctor (OF COURSE) doesn't want to know anything about POTS.

For me, that can happen when I watch anything that has a lot of flashing lights and/or quick movements (and loud noises). It is the busy environment that causes my symptoms. I think that certain movies and (especially) video games are more apt to have that. Sorry you've been having symptoms this way! That is no fun Take care

UGH. I hear you. My symptoms are---without a doubt---the WORST during my period.

You guys are awesome. I feel so much better reading all of your replies. Sorry I haven't been online in awhile. But thanks SO much for your support!!!! Take care

Thanks Patti, I probably will talk to the disabilities office about getting a chair. I had never even thought of that! I am lucky enough to be able to go to school full time --- 15 credits! I'm in my 2nd year as a social work major. I hope school is going well for Chrissy too.

Thanks, everyone!!! Maybe I'll look into getting a shower chair .

Hi all, I feel sort of silly complaining about this. But I guess this is the place to do it, because you are the people who actually understand! Well, I live in the dorms on my campus, and on my bad days I have to use the bath tub instead of the shower. Somehow this came up in a conversation with two of my best friends yesterday, and they were both totally grossed out. They thought it was disgusting that I would use a public bath tub. I feel grossed about it too, but sometimes it's my only choice. They just don't understand that I actually get THAT sick. I don't know how to explain this illness to people. It's just so frustrating. I mean, if I was like missing a limb or something...they wouldn't make fun of me. Just because they can't SEE my illness, they think that it doesn't exist. That's how they make me feel at least. I feel stupid because I got all worked up and defensive in front of them. I just get so emotional when I feel like people don't believe that I'm sick. I just wish people would understand. I mean, these are my best friends.

Hi everyone, Thanks for your input! Ern, the compression stockings do help me. They don't make everything better, but they help. I wear knee-highs, but I know that some people on the forum wear longer stockings. It's completely individual. There is a website where you can order them: www.brightlifedirect.com However, if you talk to your doctor he/she might direct you to a local store where you can buy them. Maybe you could even get them at a discounted price with a doctor's note or prescription. Take care!!

haha! That IS a good question!!

Thanks for the idea, Marli!

So I know that a lot of us wear compression stockings. I wear mine pretty much all the time!! The only trouble is that we get sick in the shower/bath, and we can't wear comression stockings there. Today (as I was having an episode in the shower), I thought to myself....why don't we have waterproof compression stockings?! Is that a crazy crazy idea, or do you think some company could actually market it. I think we have enough consumers right here. Does anyone know if they already if they exist?

yep, sometimes my face and lips itch/tingle during an episode. sorry to hear you've been having symptoms

Hi!! It's been nice to read everyone's replies to this question. My name is Shannon, and I am 20 years old. Right now, I am working on a degree in social work. I'm also co-chair of 2 student organizations on campus, which is lots of fun. I love school, but it is so tiring. By the time the weekend comes, all I want to do is sleep!! I was diagnosed with POTS at age 17 (in 2003), but i think my first symptoms were at the age of 13. When I was about 15, I really crashed. I had a good doctor, but he thought the problem was cardiac, so he couldn't figure out what to do with me. Eventually, he referred me to Mayo, and I got to see Dr. Low. Finding this forum has really made a huge difference in my ability to cope with POTS. Emotionally, it can be tough having a chronic illness ... and even tougher having one that nobody has heard of!! I still feel isolated with POTS, but now I at least know that there are other people going through many of the same physical and emotional pains as me. It makes things a little less lonely. Thanks for your endless support, everyone!

Hi Sunfish, Congrats on the new treatment!!! I've never heard of it... sounds interesting. What is Procrit? Take care!

Amy, I wish I knew exactly what to say right now...I just feel like I can't find the right words. The truth is, you have a right to feel frustrated right now. You are going through a lot ---physically and emotionally I''m sure. I think that POTS is a tough illness to live with in the social world. You were talking about how you worry about what people think of you when you use a handicapped spot. And, you know, I find myself having similar thoughts when I do things like use an elevator at school (where usually only people in wheelchairs use it). I feel as though when I walk off of the elevator and people see that I'm not limping, they'll think I'm lazy. Maybe we need to stop thinking so much about what other people think....i don't know!! It is tough. The point is.... we're sick(at least for now), and we have the right to take care of ourselves. Sending you hugs!! Take Care

It sure seems like POTS can effect metabolism, either by slowing it down or speeding it up. When I first got sick, I lost a lot of weight. Some kids in high school used to call me anorexic because they didn't understand. It's hard to figure out how much my medications have played a role in this though.

Hi, this past week my lowest was 71/36 (I was nauseaus and dizzy), but I've been lower than that back in high school. I think a normal reading for me is 90/60. A lot of us may vary on BP ....but we know when we are not feeling well. Don't be afraid to talk to your doctors about it. Take Care!

Good for you, Vanessa. It is not easy to take initiative with doctors, especially when you're not feeling well!!! I hope that you will recieve a diagnosis and a good treatment plan. You deserve some validation from the doctors. Take care!

I've been on it for over a year, and it has made a huge difference. Although I still have some bad days and some fatigue, my daily life is really pretty normal. Oh, for me, I needed to have mestinon time-release. I tried it just regularly and that did NOT work well at all. Have a nice day everyone!!

UGH!! I am soooo sorry that you had to experience that. Doctors should provide us with the best care possible....they definately shouldn't stop to consider our insurance situations before recommending treatment. I just feel terrible that you had to experience that. Doctors should be there for their patients, not their paychecks. I hope you find another doctor and that future visits go better. Take care!

I'm so sorry that you were stuck in bed on Christmas!! That just plain *****. I hope you are having a better day. Rest up and take care

Everybody is different. This is a more severe symptom for some POTS people than for others. Thankfully, I've never wet myself. But I have experienced days when I feel the need to urinate unusally often, to the point where it is an interferance. Thanks for the topic, Belinda!