Dizzy Dame

Jennifer, I can totally relate to how you feel. I'm also new in the POTS diagnosis (6 months), and I still have horrible anxiety. When my pressure starts to drop, and keeps dropping, I always worry it's never going to come up . I've been staying with my grandparents recently in rural North Georgia, and the nearest hospital is 20min away. I'm used to living in the city (I live three blocks from a hospital) so when I first came here, the thought of having to wait 20 min scared the **** out of me. I had to get over my fear though, and I've been here a month and haven't died. Mostly I feel better since I got emergency meds from my doctor. For example, I don't take Midodrine, but my doc gave me a small prescription just in case my pressure gets deadly low, I also carry an epi-pen for my latex allergy. My anxiety has gotten better, but only because I'm beginning to BELIEVE that POTS won't kill me. Before, I knew on some level that it wan't deadly, but I had a hard time trusting that I could feel as bad as I do without dying. I hope you can go visit your family, and begin to overcome this anxiety and start to feel better Cheers, Lauren

Hi Gena, I also have bad brady episodes at night (in the hospital, they said my pulse went down to the thirties when I was asleep). I've managed by using my POTS against the brady: I prop up my head/upper body slightly when I fall asleep (using 2 pillows); and to counteract the blood pooling in the lower half, I also prop up my legs on one of those foam wedges. It seems to work for me, and I've managed to keep my brady to a minimum. I tried wearing the compression hose, but I just pull them off in my sleep I too used to feel like I was "fainting" when I fell asleep, to be honest, I wouldn't be suprised if I learned that's actually what was happening. Good luck, Lauren

Julia, I'm so sorry to hear what you're going through. Here's a ((((HUG)))) and I really, really hope you start feeling better. Hopefully things will start calming down - lauren

Morgan, I'm sorry to hear your doc's are being so poopy. I got angry reading your post, I just can't believe that doctors, who took the hippocratic oath to "do no harm" are blowing you off. I can't offer words of wisdom, but I can offer you a cyber hug: (((HUG))). I really hope you see your doc's soon and get to the bottom of your paralysis Cheers, Lauren

Hi Em, I had to fly from Hawaii to GA recently, and on monday am returning. I prepared for the long trip by getting 1L. of Sodium Chloride IV four hours before departing. I also was able to lay flat on the plane. I hope it goes smoothly and it doesn't wipe you out. If you can do the fluids, I'd reccomend it, it really made a difference for me. Good luck, Lauren

Right now I'm seeing a doctor every two weeks, sometimes more. However, I'm new in my diagnosis, and my POTS/NMH is pretty severe (I'm bedridden most of the time, and have just gotten a wheelchair which I need to go anywhere). My health insurance has never given me a hard time, but I'm sure they'll start soon with all the doctor's visits. I hope you get things resolved, it stinks to be sick, but stinks even more to be sick and getting grief for it

Funny thing, I asked my doc about this yesterday. He said that having IST can cause heart problems, because one's heart is constantly working doubley-hard. POTS patients however, in most cases, only have tachy when standing. He told me that I could go into heart failure if I stood for 20 years without sitting down (he's a joker) ) My doc's wife has POTS, and has had it since she was in her early 20's, she's now in her late 40's and doesn't have any problems with her heart.

Great news Ernie! I'm really happy everything worked out.

Persephone, I had something similar happen to me. When I first got sick, I went to the campus clinic and my pressure was just falling and falling and they didn't know how to help. Finally, I felt myself falling backwards into the stretcher (I was lying on a stretcher) and at first I was scared, but then this feeling of total peace washed over me. I suppose some people would say I had a "spiritual revelation", but in reality I think my bp had just dropped so low that I was near death. The doc's said I turned white as a ghost and stopped breathing, but I don't remember any of that... just a feeling of absolute love and peace. The experience has changed me forever. I'm not trying to sound dramatic, but I no longer fear death as a result of it.

Hey there, I'd go with what you know. I had an allergic reaction to a dye in a generic form of a med I was taking. I'd been taking the "brand name" with no problem, but the generic set me off. You may not have any problems, but better to be safe than sorry.

"Get thee to a doctor..." A problem with adjusting to light is no joke. I'm not trying to scare you because it may not be anything serious but you should really try to go see your doctor I've only had vision problems a few times but they figured out it was some wierd POTS/migrane thingy. Good luck and keep us posted, Lauren

Good luck! Beat 'em up! - Lauren

I've never had what the doctor's considered "syncope". They call my "faints" near syncope. I feel like someone is pulling me down to the ground, the room goes grey, and I collapse. I am aware that I'm falling and I usually manage to fall without hurting myself, but I bruise (sp?) the crap out of my knees every time (I tend to fall to my knees, then down on my side). I was confused about this also, since my falls aren't voluntary. It's really interesting to see how different, yet similar we all are. Good post

It seems mean-spiritedness is going around... Earlier today I went with my grandfather to pick up my mom at the airport in Atlanta. On the way back we decided to stop at a restaraunt called "The Varsity". I went inside to eat with them, but suddenly began to feel very dizzy. I told my mom I felt sick and left to go lay down in the car. When I got out to the parking lot, I found the car was locked but at this point my heart was racing and I was starting to see grey. That's when I fell. I lay on the asphalt for a minute or two, then managed to prop myself up on the side of the car, with my legs splayed out in front of me. Everytime I tried to stand, I greyed out again and collapesed. I sat in this position for nearly a half hour, people kept walking by me but no one offered to help. How is that? If I saw someone laying up against a car (which was parked in a handicapped spot by the way) who had a CANE, I'd at least ask if they needed anything. Finally my family came out and saw me up against the car, they helped me in and we went home. Has anyone ever had an experience like this? After reading Persephone's post today I'm beginning to loose faith in humanity.

I go to my doctor's office, or local ER when I need fluids. But I only get IV fluids in emergency situations (like if my BP falls below 90/50 and I can't bring it up). The doctors at my local ER are really understanding, and they seem not to mind. I just carry a prescription (sp?) for 1 liter of Sodium Chloride. I've talked with my doctor about getting a port so I can give myself fluids, but we decided it wasn't necessary right now. I know there're people with IV ports on the forum. Hopefully they'll be able to give you more informaiton about those. Cheers, Lauren

First let me just say that I'm not a doctor. I've heard that if one takes in more than 4 liters of fluid a day, they can dilute thier blood and cause a decrease in electrolytes. One can actually have symptoms of dehydration as a result of too many fluids. My doctor talked to me about this a few months ago, and reccomended that I drink no more than 3 1/2 liters a day, supplimented with salt and potassium (I drink gatorade and eat high sodium food). You may want to talk to your doctor about the amount of fluids you're drinking, and if the high volume has anything to do with it. Also, I get IV's when I just can't bring my pressure up. They REALLY help. If you think they may be something you'd like to try, talk to your doctor about them. Best of luck, Lauren

I'm sorry but what kind of amoral **** would openly laugh at a woman who'se fallen from her wheelchair? That made me soooooooooooo angry! What the heck is wrong with people?!?!? Persephone, I really hope your housing situation gets resolved quickly. Your flatmates sound nice, but it still sounds intolerable. good luck, Lauren

That sounds like so much fun!! I'm sorry to hear that you had to go in, but at least it was pleasant and you felt better by the time you left I had to go to the ER earlier this week and the trip was a total waste of time. I figure you win some...you lose some. Hope you're feeling better Cheers, Lauren

Yay! the show focused on a child with celiac disease and a woman with MVP syndrome!! Although they didn't go into much detail about it, and didn't mention that it falls under the larger umberella of Dysautonomia, but it's a start. Hopefully lots and lots of people will see it.

For those who are interested, TCL's "Mystery Diagnosis" is doing a show on celiac disease. It's airing tonight at 11:00pm, and I'm sure will air again. Yay publicity!!! Just thought I'd give everyone a heads up... -Lauren

Melissa, I'm sorry you're going through so much crud right now. It kind of pushes the limit of the cliche "what does not kill us makes us stronger" I really hope things start getting better for you and your ears stop acting up! And shame on that cop picking on you? I guess there's been a rise in ear-related crime in the area (LOL) - Lauren

Hi all, First of all, I'm sorry if this post caused confusion. Ok. That said, I went to urgent care last night, and, of course the doc had no idea what was going on. He told me I proably had gas after a less than 5 minute exam. Just as they were getting ready to send me home I had some sort of wierd "grey out" (I'd just stood up to shake the doctors hand). I fell and hit my head on the exam table. Of course, the doctor freaked out and called for an ambulance to take me to the ER. It's interesting how the doctor reacted. I'd told him that I had Dysautonomia, and OI: he knew I had the capacity to grey out. Still, I guess they don't believe you until they see it. Soooooo I was in the ER for about 5 hours. They did bloodwork, took x rays and everything was normal (which I could have told them to begin with and saved everyone a little bit of time and money ). Bottom line: waste of a trip. I guess I'll have to talk to my POTS doc when I see him on monday. Thanks for listening to my ramble. Hope everyone had a better day. Cheers, Lauren

Goldicedance, I was not trying to illicit medical advice from anyone. I was simply asking if anyone had experienced my symptoms before. I was looking for support, which I obviously did not find in you. As I stated in my post, I am going to urgent care.

Hey there, I can't excersize at all, so I can't offer any advice. Glad you got some answers. Hopefully the extra salt will put you back on top. - Lauren

OK this is reaaaaally wierd. Yesterday I felt fine, but today my stomach started acting up again. I look like I'm about six months pregnant right now, my abdominal muscles hurt from being stretched. I have been "regular" the past few days so it couldn't have anything to do with that. This is too strange. The only thing I can think of that could have caused this is I ate three cookies about an hour ago, along with a bagel and cream cheese. I usually avoid flour, and carbs, but I was having a "baked goods" craving today and decided it would be fine. I think I'm going to have to go over to the urgent care, my tummy feels like it's about to explode Has anyone here ever had this happen to them? Could the bread-stuffs have done it? averybloatedandsorelauren