shannon

I'd bring wine glasses so that we could drink our gatorade in style!

Hmm.... I haven't faced the "Tall Thin" diagnosis, but I have been given the "Short, thin" diagnosis --- I guess the docs are flexible in those assessments! And don't forget "eating disorder", "druggie", "anemic", or "anxiety disorder".

Among many other things, I am SO very thankful for this website and the support I feel here. Thanks to all of you! - Shannon

Any book by Octavia Butler is great! I also reccommend "The Secret Life of Bees" Shannon

I hear ya! This totally happens to me. I have lots of trouble vacuuming, and bending over to clean the bath-tub is impossible for me. I think it has to do with the way our bodies adjust (or fail to...) to gravity. Bending over and using our arms while standing can be exhausting. Very frustrating, huh?! Shannon

Good question! I have to admit that I have not quite figured out the best ways to bring up POTS either. I've really been working on learning to trust myself and know my limitations ... and to assert my needs. As far as explaining POTS to acquaintances, I usually say something like: "The autonomic nervous system controls all of those things you don't think about that are necessary for daily functioning (for instance, heart rate, blood pressure, and digestion...). For me, this nervous system is dysfunctional, which means I have lots of chronic symptoms that are seemingly unrelated. I usually look healthy, but that doesn't always mean that I feel well." Still, I know that it can be very awkward to bring this up to acquaintances. I still am trying to figure out how to explain POTS in a brief and clear way. With close friends, I try to be open with them and let them know when I don't feel well so that they can understand my limitations and support me. I am lucky to have one good friend who actually understands POTS. With regular friends, I pretty much give the same spiel as I do with acquaintances. Take care! Shannon

Welcome, Maggy! I am so glad that you joined. This forum felt like a life-saver for me when I found it too. Please consider us a support system for yourself. Come on here and complain or vent ANY time! Take care Shannon

Absolutely! I think there is a huge gap in care for women with POTS, and that's hormone issues. When I told my well-known POTS specialist that my symptoms are horrible during my period, he jusy nodded and said, "That happens". When I talk to my gyno about it, she knows nothing about POTS and dismisses the symptoms. I tried Oral contraceptives, and they did help the dizziness, fatige, and pooling --- but they triggered horrible migraines. You'd think that this would be a larger area of concern since 80% of POTS patients are women! Thanks for starting this topic .... it's an important one. Take care!

Take care, and good luck with your recovery. Just remember that if you're ever feeling alone or hopeless, this forum may be a means of regaining support and hope. Don't be afraid to stop back if you need us. Take care, Shannon

Welcome, Desiree! I am sorry you are having such a tough time with POTS. Come on the forum and vent to us anytime. That's what we're here for! Take care, Shannon

I am a little behind on the forum, so I just got to reading this post. Just wanted to tell you that I nearly cried when I read it. I am just so happy for your improvement in health. Thanks for sharing. Shannon

Thanks for sharing your story! It sounds like you taught those women a lesson. It's important for people to know that illness is not always visible. Way to go!

Hi Nolie, I am not a parent, but I definitely know how terrible it is to be so sick during highschool. I was diagnosed with POTS when I was 17 (though the symptoms started when I was 15) and can probably relate to some of your daughter's frustration. I can only speak from my experience. As a teen, I think it would have helped me SO much if I had a support system of others experiencing similiar problems. I was surrounded by peers who had never dealt with chronic illness and who usually did not understand its persistant effects. I sometimes internalized their negative perceptions of me (as lazy, overreacting, etc). Even though my family was supportive, I really needed people my age to talk to who would understand. Does your daughter come to the DINET forum? Dynakids might be good too. If you or your daughter ever feeling like venting, you can both feel free to send me a personal message. I know how frustrating and draining all of this can be! Take care, Shannon

Thanks, Might Mouse. We all appreciate the knowledge you bring to the forum! After reading all of your replies, I decided it would be advantageous to have my eye doctor contact my neurologist, but he refused to!! I told the receptionist that I would cancel my surgery unless the opthomologist contacted my neuro first. The clinic made me feel as though I was completely overreacting. It was very difficult to stand my ground on this one, but I kept reminding myself that my doctor is here to serve me and that I have every right to ask him to consult! Anywho, I decided to contact my neurologists myself and just postpone the surgery until I hear back. I am just feeling very frustrtated with the elite aspects of the medical field .... my eye doctor is just too full of himself to ask for a fellow doc's opinion. To me, that is completely unethical. UGH! I guess I just wanted to vent. I'm sure you've all had similar experiences. Shannon

That's great that you have an understanding boss. You must be great at your job!

Welcome to the forum, Danni! I'm glad you found us. Anytime you're feeling frustrated or needing to vent, there will always be people here who want to listen. I'm about your age (21), and I was diagnosed when I was 17. Feel free to message me if you ever want to talk. Take care!

Yes, my symptoms vary greatly from day to day. They are pretty well under control right now with my medications. Sorry to hear you were having a rough day. It is so frustrating to become symptomatic all of the sudden!!! Take care.

Thanks for your replies, everyone! I'm sorry that I have not been able to come online in a while. The way some of you described the speech problem --- as having "thick" tongues and slurred speech--- that was exactly how I felt! I'm sorry to hear that you had the symptom too, but also a little relieved to know that it's probably just part of POTS (and nothing new). As far as the eyes, I was evaluated by an opthamologist, and he said my corneas were fine for the surgery. I may double check with my neurologist, but I think I will go ahead and do this. Some of you mentioned EDS.... I'm not sure what that stands for. Anyone?

Hi all, Two questions: 1.) I'm planning to have lasic eye surgery next month. I'm not being put under, so I don't anticipate any problems with POTS. Just curious, though --- have any of you had the eye surgery? Can you think of any reason why POTS would cause problems? The eye doctor didn't seem concerned, but (of course) he has no idea what POTS even is. 2.) Last week, I had a new symptom. When I opened my mouth to talk, my words came out funny (like my tongue wasn't cooperating). I went to the doctor, but he just said to go to ER if it happens again. I'm just wondering if any of you have experienced this symptom. Thanks, Shannon

Hi all, Last week, I got a letter in the mail from my doctor. It was about my last pap smear. She says that even though I tested negative for HPV, there were signs of new and abnormal cell growth. I have to go in for another appointment in a few weeks. I know this could be a number of things. It may be completely unrelated to POTS, but I am wondering if there is any possible connection. Has anyone else experienced changes in cell growth? Thanks, Shannon

I'm so sorry that you have to go through this. It is bad enough being sick, and having friends who don't understand is just an added stress. I'm glad to hear you are thinking about what is best for your health. I know that's not easy to do, especially when the social support isn't there. Hang in there Take care, Shannon

1. Shannon 2. 21 3. POTS 4. diagnosed at age 17 5. Minnesota 6. at worst: where do I start? .... At worst I was almost always in bed and constantly weak and fatigued. 7. I am at my best right now! I am still tired a lot and need to maintain a regular sleep and food schedule, but I am able to keep up at college full time as a double major! 8. Imitrex (for migrains) made me verrrry sick. Also I'm allergic to the anti-nausea med phenergyn. Topamax (for migrains) also made me sick...wasn't able to keep my food down which also caused weakness. 9. Currently I'm on Mestinon and Inderal (and use stockings PRN), and I am healthier than I've been in years.

There have been times when I felt that I shouldn't be driving, but for the most part I think it is medically safe for me to drive. On longer drives, I try to pack lots of fluids and salty snacks and make sure I am well rested before driving. I only rarely have troubles with it. Hang in there! Shannon

That must be so frustrating! Maybe you could always carry a brochure on dysautonomia with you, incase you end up needing to explain it to doctors. I know I get frustrated trying to explain my illness to doctors when I already feel like crap. I should probably carry a brochure too! Take care, Shannon

I used to get terrible headaches. I still have them daily now, but they are no longer severe. Every person is different, but for me a regular sleep schedule and pattern of meals seems to help. I know that advice is easier said than done, but it's about all I've got. Good luck! Shannon