gdomaracki

Hi I have nausea 24/7. Sometimes I am just so afraid to eat, that it will make me feel even more woozie. I do hope that you find something, maybe a medication that can help you deal with yours. I too have a wonderful diet because of my hypoglycemia and it doesn't really seem to help matters much. I have finally found a specialist nearby (two hours) who specializes in POTS so I'm really interested in what he has to say. I'll make sure to mention my tummy pains and send the suggestions to you. Hope your tummy is feeling better soon. Nicole

Goodness me, Im sorry I confused you all. I take midodrine 2x a day, after it has been five hours since my first dose I sometimes lay down if I am tired. I know not to lie down before then because it last in your system four hours, and I dont wanna do any damage getting suspine hypertension. Sorry about the confusion! Nicole

I was wondering how many of you use iv fluid. . . If you do, Does it help? What symptoms does it help relieve? And how do I go about getting some of this magical elixir? lol Thank you! Nicole

~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~ During that time of the month, do your symptoms seem EXTREMELY worse?!? The past week has been nothing short of miserable for me, with new symptoms along with bad fatigue, memory fog, and the whole nine yards! Wondering if anyone else has this problem? Is there anything they can do to help? THANK YOU! *Nicole* ~*~*~*~*~*~*~**~*~**~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*

He he.. My knees pop out and make all kind of crazy noises after a bad spell. I am going to be trying therapy soon, hopefully it will help. Nicole

Thank you for this post! So many people think that it must be wonderful not working, but let me tell you it ain't no vaca thats for sure. I too am running low on ideas to keep from the boredom. Nicole

~Sorry you are having so much trouble right now. I do hope that this doctor can get everything straightened out for you. I am learning how illiterate doctors really are about illnesses, especially pots. I went to the doctors the other day about a stomach bug, or possible side effects of a new drug. And I mentioned what I had been diagnosed with, pots. She was like, ummm...I just knew she had NO idea, and then mentioned, "isn't that what baby's develop, an irregular kidney or something." I wanted to get up and leave. Of course I informed her of what it was not like she cared, but...anyways! I have found a doctor that knows some about my condition and is willing to push to have things done for me and it is truly a blessing. I mean whatever referrals, paperwork, tests, ect I need all I have to do is call. In my thoughts and prayers. Nicole

Lauren~ Thats GREAT!! Midodrine lets me get up too. Without it, I would be back on the couch! Nicole

Sarah~ I'm glad your still sticking it out and going, cause I got soo bad I had to take the year off. I still write down things to do everyday to keep me motivated, but either I have no energy or I forget. . . Good luck with your paper! Nicole

Linda, Sorry to hear that you aren't feeling quite well right now! I do hope you get a little energy and get to enjoy the day I know i have horribly vivid dreams, alot of times waking up covered in sweat. (i know, gross!) And i too have had syncope, and near-syncope after waking up in the morning, or during the night. Your not alone hun! Wish you the best and hope your pcp has some answers for you! Nicole

Hi! Yep, i got hit by the little blizzard we got yesterday! Boy it sure is deep, especially for here. I would say maybe a foot an a half, or so. I didn't do any shovling either, hunny got out the snow blower! Lucky us We deserve it though, having to go thru this pottsy stuff. I'm hoping it melts soon too. I really can't stand the cold, especially when I got the chills all the time. Plus, as goofy as this sounds...spring makes me happy! And I need all the happiness I can have right now. Keep Warm! Nicole

Jacquie~ I was wondering the same thing?!? It happens to me ALL the time, if i lie down for a nap in between doses of midodrine. And alot of times in the morning. Hope you head gets to feeling better Nicole

Hi Suzanne~ I think for the most part we all are in that same situation or have been. I was just diagnosed 2 weeks ago and i know how hard it is. I have gone from all to nothing, work to bed, friends to being alone. And I can't imagine how u handle kids along with that?!? I can't even take care of my birdies Just keep your head up and I hope you can get out of the house, even if its just someone taking you for a short drive. I know now how precious life truly is, and the littlest things make me happy. Find what makes you happy, and run with it. In my thoughts and prayers, Nicole

Pray, to whatever you believe in, pray. In my thoughts and prayers, Nicole

Hello, I really don't know anything about this drug, but I will let you know that I took florinef and my blood pressure went SKY HIGH!! I mean we are talking about heart attack number, for a 19yr old. It was CRAZY, and I didn't feel good at all. , Nicole

Linda, I know how you feel, i declared this week the worst "pots week" ever for myself. I got the unfortunate opportunity of having my first paralysis episode, let me tell you i never ever ever ever want that to happen again. Try to relax and think. . .that JUST maybe the sun will come out tomorrow! Your in my thoughts and prayers dear, Nicole

No, my ep NEVER called me back but a nurse did to tell me that they would call me next week for a follow up. . .go figure! They frustrate me so bad. I still feel extremely weak, exhausted, and my legs are still achin' and sore. Hopefully this goes away. . .

Okay, so I might have a breakthrough for why I have POTS but I'm not sure and would like to ask you all what you think... I was diagnosed with anxiety/panic disorder many years ago and they put me on 100mg of zoloft and .25mg of xanax up to 6x a day. That was 6 years ago. I have been doing alot of research and am finding that you are not supposed to be on xanax for an extened period of time at such a high dosage. Along with the fact that I was only 14 when I was put on it. It comments that xanax is a benzodiazepine, which depresses the central nervous system. Now at 19, I am having dysfunctions with my autonomic nervous system. I haven't yet gotten ahold of one of my docs to ask them, but they did push the idea of getting me off the drug (addicted) because it can aggrivate hypotension. Do you think that there could possibly be a corrilation? Please let me know. I am searching for any kind of answers, or suggestions! Thank you all, Nicole

Good Afternoon, Yeah, I also get spells as if my skin is on fire and also a burning sensation in my chest. Don't know what it is from and I am all new to this~ But, your not alone! It normally goes away for me after my spell and I rebound with a cold spell. My body can't make up its mind, lol. As far as the aching this, oh I hurt with ya sister! Nicole

This morning I awoke to a sharp pain in my stomach, didn't really think much of it. About five minutes later, everything got really blurry and I got extremely dizzy/lightheaded. I laided down, waiting for this nightmare to end. This hot, burning feeling came over me. I tried to keep my eyes open, oh I was sooo scared and I was too out of it I guess to yell for help. I tried, but I just couldn't. Like I didn't have the strength. And then my legs went numb/tingling. I couldn't move. I am able to move my legs now, but it hurts so very bad. And if I try to walk~ they give out on me?!? I tried called my electro to inform her on my situation, but of course its four hours later and I probably won't hear from her. What should I do? Will this happen again? Is it all POTS? How can I bring back feeling in my legs and dull the aching? Sorry, I just need to vent. Im just so scared!

(((BIG HUGS)))

Yep, everyday. Sometimes I'm tingling, sometimes I'm numb, somtimes I feel like I'm on fire. . .Guess it's all because we don't regulate blood and temp throughout our bodies Hopefully, you get some relief from it, Nicole

Belinda, Im scared too. I have felt like I'm having trouble breathing and didn't know it could be related to POTS. I just thought it was all anxiety?!? I wish you the best And hope that you find peace.

Went through the same thing today hun! Grab a blanket and try to keep warm Nicole

Mary, Whatever your cross Whatever your pain There will always be sunshine After the rain Perhaps you may stumble Perhaps even fall But God's always there To help you through it all Your in my thoughts and prayers, Nicole.