JaneEyre9

Wow Melly, Sudafed. That's awful! That's exactly what i was on 24/7 before i crashed big time in April. Your experience reminds me of when i was offered coffee by a nurse after one of my fainting spells. Great stuff. Well, i'm glad that you had that med student there to affirm you, but sorry you were told that your symptoms (and your son's) are "normal" and that you need to take a tachy-inducer. It really makes you question if they know anything about OI. Hope your experience with the cardiologist is better... Kristen

Thanks so much for the great replies! It's so easy to get caught up in thinking of ourselves in terms of our disorders or medical treatments. It's amazing to me that some of you are/have been nurses. That is a high stress job with a lot of standing. It gives me some hope about my own circumstance. What i enjoy reading the most is how flexible you all have become...allowing yourself time out when you need it, but not letting it pull you down permanently. What an encouragement to me...thanks and keep them coming!

Thanks Evie! I'm really impressed with your attitude and persistence in getting your education. I have always wanted to do that mystery shopper thing. Let me know how it goes, and maybe i'll give it a shot Right now, i'm on a break from grad school. POTS has been lurking the past year or two (though i didn't know i had it), and i've just pushed through it, but it finally knocked me down completely this summer. I haven't been back to work (or school) since. Right now i'm just trying to figure out if it's feasible to keep going, or if i should just figure out a way to earn money from home. (Not a bad thing at all...sounding more and more appealing lately) Thanks for your reply... i think it is great to be in academics. I'm a lifetime student in my heart, so i understand Kristen

i have a friend in grad school in boston, and his main form of transportation is walking or taking the subway...not really POTS friendly, but he loves the city. I've been there to visit and it is quite a fun place...lots of young people because of so many colleges. I also have a friend in grad school at Duke. It's very hot there. She has a tan all the time. She also loves the area. I don't know much more than that because i have not been there to visit. I do know she uses a car to get around most of the time...not as much walking. In terms of distance to the great state of OHIO, Boston and Chapel Hill are about the same, i think. Boston may be a little further. But Texas is definitely the furthest. Good luck with your decision and let me know if you have any specific questions...i'd be happy to email my friends and ask! Kristen

Glad you got a diagnosis! I don't know anything about this particular issue, but i'm so glad you were able to get the problem pinpointed. At least now you can start to work on treating it! Kristen

Sorry I'm so late posting...hope the surgery goes well, Blackwolf. I'll be checking back for the updates. All the best wishes your way! Kristen

I know that several people here work or are in school, and i was curious what types of degrees/careers you are all pursuing. I'm sure some are better for POTS than others...like sitting desk jobs verses a job where you are on your feet all the time. What do you do during the day? What do you feel capable of doing? What do you feel is too much? Can you work full or part time? Are you resting at home like I am? I'm trying to get an idea of what kind of future i'm going to be able to handle...Any advice?

Ah the joy of abnormal test results! That's great morgan... What a good feeling to have documentation of what you know are NOT normal physical symptoms. I truly hope this leads somewhere for you and ultimately to some relief from your suffering. Kristen

Hi Lois, I'm just writing to say i admire your positive attitude about these treatments and your future. I don't have much personal experience with cancer, but i can say that i appreciate you are fighting an amazing, tough battle...and with POTS too! Thanks for updating on your condition. Since I am still fairly new, I'm still trying to figure out what is going on in each person's life. Sometimes it is hard to keep track of who is who, but when I read posts like yours, it really opens my eyes to see that many of us are dealing with a whole lot more than a POTS diagnosis. Sorry for rambling! My thoughts are with you! Kristen

I wanted to add my sympathy about the medical mystery label. I sure know what that feels like. I hope you can get some relief soon. Do you think it might be a damaged nerve? What kind of abnormal results did the doctor find? I can't believe they can't find the source! The mouth is a pretty small place...they should be able to find something! So sorry you are going through this. Kristen

Hi Stace, Welcome to the forum! I can sure relate to what you are saying. I am 24 and it is so hard to learn to cope with limitations. I used to drive everywhere and was constantly busy, but now i'm lucky if i can get a shower for the day. It is so hard, and i don't know any magic answers to tell you right now. Just glad you found this place because it is very supportive and informative. Kristen

Hey Jennifer, Let me preface this by saying i'm no expert in how heart watches work. I think though, that they measure heart rate by the interval of time in between two (maybe three) beats [shorter interval= faster heart rate]. If you have an ectopic beat (like a PVC), then it's possible the watch is just measuring between one sinus beat and one ectopic beat to get that really high number. I only say that because you said the number was only there for 2 seconds and then went back to normal. It would make sense because you didn't feel any sysmptoms. Anyway, those are my 2 cents for what they are worth! Kristen

Hey everyone, Thanks for all of your thoughtful replies. I know this is a sensitive issue for most women. I've had my own weight issues, myself. It's comforting to know that staying at a healthy weight is my best bet. I think that getting sick causes many lifestyle changes (meds, lack of exercise, stomach problems) that can really affect weight. It's interesting that these things have affected all of us differently. Thanks again for taking the time to add your personal experience. Kristen

I had the same experience as the others here. Kimberley, who is Dr. Stillman? Is he in Cleveland? Kristen

Man, with all this toe breaking going on, i think i will start protecting my feet. too bad they don't make support stockings with steel toes Sorry you're miserable with pain Stacey...and you too morgan. Hope they heal fast. Kristen

Hey Lauren, Just wanted to say hello! I'm 24 and supposedly in a graduate program, but have had to take the past 4-5 months off. Glad you found this place...it's a nice place to get info and support. Kristen

Happy Birthday, Persephone! I can't wish you anything better than StaceyYount did, so i'll just leave it at that Kristen

Hey Dizzy-- It's great that you had some compassionate people to help you out with the wheelchair! What great news that you were able to get one, first of all, and then take it to the bus stop too. I have to say that it's weird that you had a systolic BP but no diastolic. I've had my BP so low that they couldn't get either one, but never high like that. Hmmmm...not sure what to make of it. It always makes me nervous when they can't get my BP. I wonder to myself "am i still alive?" Enjoy your new wheels! Kristen

I heard from a doctor (not mine) the other day that people who are overweight don't suffer from POTS. Is this true? Would gaining weight ease symptoms?!

I understand a lot of these feelings of frustration. It is so hard to be focused on illness (taking precautions, talking about symptoms, going to doctors, etc.) and to feel like a burden to those around us, especially when we want to be *doing* the "taking care of." I have felt the same way. We are lucky to have people who love us though...and i have to say, if someone i loved was sick, i would feel a great deal of gratification in being able to show my love by nurturing them. In a lot of ways, this trial for all of us in an opportunity to see who our greatest allies are, and it is a true test of those who are loyal...making appreciation and love grow deeper. Kristen

Man Nina, When it rains it pours. Your post about the toe made me cringe just reading it! I hate the "normal blood work news." It makes me want to cry. Then i feel guilty for crying over good blood work. You all know the drill. Just want to find something to fix. I'm still hoping for a ray of light at the end of your long tunnel!!! Kristen

This is a great question. I had a BP reading of 96/60 today before rehab and felt awful. Last Friday i had the same reading and felt better than usual. It makes no sense. Plus it seems to have nothing to do with how i'll do during or after exercise. Sometimes I want to give up on the numbers. I just feel how i feel. Kristen

Just a quick thought...Rachel mentioned it feeling like a hangover...maybe it is basically the same physiologic cause...hangovers are caused by intense dehydration. Us POTS people are more prone to that. I feel slightly nauseous in the morning but it's more a part of a general "yuck" feeling that goes away in a couple hours. Of course that feeling can be replaced with IBS later in the day, but that's a whole other type of nauseous. Kristen

Hi Becca, Dinet has some good info on POTS and exercise. http://www.dinet.org/what_helps.htm It really depends on what you are capable of doing with your symptoms. At first, when i was in bed all the time, i was only doing leg-lifts. Slowly i built up more endurance and was able to try some light swimming and short walks. Now i'm on to much longer walks and it has me feeling better. Listening to your body is the best thing to do. If you don't feel well standing and exercising, then try doing something sitting, like a recumbent bike. Also, the harder you work out aerobically, the more blood will be required by your muscles, leaving less blood available for that all-important brain. That's how a nurse described it to me. It made me realize that walking is less demanding than an elliptical trainer for example. Good luck! Kristen

Hi Faith, Welcome to the forum! It is great to have you here. I hope you'll find the same insightful advice and emotional support (as well as laughter) that i have found here. How old is your daughter? What part of the country/world are you from? I'm a graduate student from Ohio. Kristen