Jacquie802

Amy, Hope your feeling better.... Michelle, Thanks for keeping us posted!

If you lose enough blood, etc. hypovolemic shock is life threatening.

Just curious if anyone else noticed that their heartrate goes way up when they have to pee...Once I urinate my heart is still tachy but not as high....

I almost always have the blurred vision when I get up in the AM. It usually lasts for about an hour then I am fine. It is quite annoying though..Sometimes if my BP is shabby I get the vision probs at night as well...Always good to check in with your doc though, to be sure that is what's causing your problem! Jacquie

Hi Lina, Welcome to the forum. For me fatigue/lack of sleep is one of my worst symptoms all around....I have not taken any sleep meds or anything like that for it though. I do get the numbness/tingling in my lower extremities, especially my feet. I have been diagnosed as having autonomic neuropathy/POTS. Also on my TTT it showed that I had a decrease in cerebral blood flow...(they know this because they used a helmet type thing while they did the TTT). I always wake up at least once during the middle of the night due to sweats, palpitations, or as you describe an adrenaline surge. I was prescribed a Beta Blocker to help with the palps that wake me up during the middle of the night but I find that when I take the BB, I wake up in the AM unable to move because my BP is soooo low from taking the BB...So right now I am just trying to deal with the palps, etc. As for the driving, for me it depends on how I am feeling that day as to whether or not I drive and also the distance I am going to drive...I usually have someone else who is a licensed driver come along with me just in case I get an episode of dizziness, etc. Have your doc(s) put you on any meds to help control your symptoms?? Hope you can find some treatment that helps you! That alone can take some time... Jacquie

Since I was diagnosed w/ POTS my weight went up...I went from being 5'8" and 123 lbs. to being 5'8" and 150lbs. Jacquie

OH my goodness! I don't like how 2007 is sounding soo far for soo many people here...Does anyone know what has caused Amy's sepsis??? Amy, hope your better and back home soon! Jacquie

Hi guys, Quick update, the covering doc gave me an RX for Zantac 300mg...Hoping this helps some. I have to follow up with my PCP so I'm hoping he has the notes from the Neuro I saw at BMC regarding the Gastric Emptying Study.... Thanks for all the helpful tips! Jacquie

Em, thanks for the update! Melissa, Hope your out of the hospital SOON...We are all thinking about you. Jacquie

Ooops! I need to change my signature, I am no longer on Florinef...but boy that was a HEADACHE...pun intended!

Nausea just woke me up.. Still horrible feeling. Guess I am going to call the docs office tomorrow.

As I was laying down my vision began to get the black fuzzies...Is this common/normal for us with POTS to get, even though we arent sitting or standing?

Hi guys, All I am managing to keep down is soup and popsicles. I can't even drink any liquids...I think I may be a tad dehydrated because my lips are cracking and my heartrate is all over the place. I'm trying to figure out if it's worth seeing the covering doc tomorrow...I mean what can they really do??? It's hard because I am forgetting to eat because I don't feel hungry, so basically I feel nauseas and am forcing myself to eat. I had a flu shot, but maybe this is some type of stomach bug???? Not sure...Thanks for all the tips, hopefully I can have something to drink soon. Jacquie

Melissa, you continue to be in my thoughs and prayers...I wish there was something more we could do for you...Just know that we are thinking about you...Keep on fighting. I also agree that it would be a good idea to be sent to a larger university hospital. Jacquie

Is doc you know who lol going to have to work your way up to .3mg. I was having the same probs before...the BB's were making my bp bottom out, therefore my heart pumped faster trying to make up for the low bp....I also had an arrhythmia as well that made my rates go up...Have you thought about a second opinion?? Did you get my message I pm/emailed you???

My docs dont do those either much anymore. They know somedays I am okay and others not so okay...Have/Are you on an extended release BB such as Toprol XL, etc.?... Jacquie

Sorry I am chiming in so late....I hope your mom is able to have the tumor out ASAP...Lets hope the clots dissolve soon as well. Jacquie

Sorry to hear your son isn't feeling good...Keep us updated on any info you get..Hope Mike feels better very soon. Hang in there. Jacquie

hi guys, i hate complaining but right now i really feel like crying. i have felt sooo dizzy and nauseas all of a sudden, i just wish i could throw up...i have never felt this bad before...is there any type of fast acting meds out there for me and my stomach??? i had zofran in an iv before and it helped somewhat, i just feel horrible. i really wish my doc would prescribe the zofran. my bp is kinda high for me, jumping around 150/? and 133/?...i dont think its anything to do with my bp.

My BP fluctuates all over the place. It can be 110/84 for example and I can feel very dizzy, etc. Interesting post you have started, I can't wait to see what others have to say! I always thought that the BP had to be super low to feel crappy but I have noticed lately that it isn't exactly true! Jacquie

1) What are some aspects of your doctors and the care they have provided you with that you liked/appreciated? I liked the fact that my first cardio didn't know much about POTS, actually admitted that to me and referred me to an EP/Cardio who knows ALOT about it. My PCP helps to treat each actual symptom I have, besides the obvious palps, and low bp, he gives me meds to help out with my horrible stomach problems, which began with the POTS...he basically listens to what I have to say and treats me the best he can. He also follows up with my specialists and KNOWS what is going on. 2) What are some aspects of your doctors and the care they have provided you with that you did not like/appreciate? My first PCP said I had anxiety probs, the guy didn't even run an EKG on me, which ended up showing one of my problems (reentry tachy) in addition to POTS. 3) What improvements would you suggest or value (even in the good circumstances)? Getting POTS, etc. more known!! As well as the various treatments (which meds to try) out there. I can't tell you how many docs I have seen in the ER, etc who didn't even know what Midodrine was! Also, have it be known that it has alot of the same symptoms as anxiety, BUT is not anxiety. 4) What are things that you look for or would like to see in a your primary medical facility? This can be things like having wheel chair service, bench to lie down on so you don't have the floor, place to sit while you wait in line, etc. Comfy chairs, even some that recline a bit would help. Im not saying all out recliner, but just a little something to help us out. 5) For those in a college/university setting, what accomodations have been/ would be helpful to you? Had to leave. 6) For those who had to leave a college/university setting, what were the greatest challenges to your staying in school? Was there anything the school could have done to help you be able to finish your education there? I think I would do better doing some online courses. I am not always able to get to school in the AM, which tends to be my worst time. So being able to have courses in the afternoon would help alot. I know alot of schools let you pick your schedule, but usually the afternoon ones (all the good times) fill up very quickly...It'd be nice if there were some spots left open for us! Also, have some benches, etc. around campus for us to take a quick breather! I wouldn't be able to live at a college, etc at this point in time. Thanks for taking the time to help your dad as well as getting the word out! Jacquie

Congrats! I am soo happy for you!

Let's hope the treatment kicks in ASAP! Feel better soon Melissa!

Emily, thanks for the email. Melissa, you are one strong person, keep fighting and know that we are sending our thoughts and prayers your way. Jacquie

Hi guys, I have been having horrible palpitations and headaches, when I took my bp it wasnt too bad for me..So what's going all with all this? ANyone else have this prob and also what has helped?? I tried taking a dose of Metoprolol, guess only time will tell if it's going to help me... Jacquie