Gerrik1

Thanks for all your updated. It's been very interesting. It's Dr. Robertson wonderful? He was the one who tested and diagnosed me with POTS all those years ago. I really liked him and am glad you got to meet him. Enjoy that cup of coffee.

I've just spent the last 3 days in bed, I marked month but it never has been that long usually a week or 2 at the most and it just hit me out of the blue. So dizzy I can not sit-up, get-up or even roll over. MD has me increasing my antivert and seeing her on Thursday, unless I get worse then I'm to call her back ASAP.

I have Vestibular Dysfunction in my right ear. Was tested right after my POTS diagnosis and they did a test were I was strapped to a table and they put cool water into each ear. Left ear no problem but when water went into right ear I thought they had tilted the table and I was falling off. I screamed and grabbed the sides even though I was strapped down. Very bad reaction and dizzy for hour after test.

I have been on Midodrine since I was diagnosed in '03 and without it I do not function. My B/P's are to low. I do need to take a Beta Blocker to help lower my heart rate also but thats not all from the Midodrine. When I'm off my meds, my B/P's are low and my HR is high when ever I try to stand and I will usually pass out. So I stay on my meds. My MD has tried a few times to tapper me off but just does not work for me. I need the meds.

I agree with the last 2 posts, keep hydrated is very important and NO OTC meds. Those cold meds can really mess-up your B/P and Pulse rate. If you get worse call your MD. It can get scarry if a POTS pt gets dehrdrated and to sick. Feel better soon.

Thanks for sharing. it sounds so interesting. Vanderbilt is a Great place.

If you leave within traveling distance to Pittsburgh. There is a group of POTSies who are going to try to meet for the first time on Saturday, January 26 at 1pm at the Kings Restaurant in Bridgeville, PA. We are from a forum on Face book. And wanted to open it up to anyone else in the area. We have some coming from Ohio, Uniontown, Wexford and Canonsburg. Address of restaurant is: Kings Family Restaurants (412) 221-1119 3049 Washington Pike, Bridgeville, PA

Yes, you are not alone.

I was diagnosed with POTS at Vanderbilt in 2003. I was there for 4-5 days. Was not on any medication at that time and they started me on my meds. It was a great place and Dr. Robertson mainly worked with me. I could never think of going off my meds now to do a study. I am on so many and for so long. I have been off them for a few days when I've had surgery and I was flat on my back in bed, B/p down and pulse up any time I tried to get up. need those meds badly to just function.

I went through this 8 years ago. I used my POTS and my migraines. My attorney had extensive medical records from all my Drs. I was very lucky I got to the hearing and judge approved me without a hearing. But my attorney has prepared me to answer honestly and to the best of my ability. Mine was in the morning also and I was such a mess,. So I feel for you. I'll be thinking and praying for you.

I really don't know what I would do without my Italian Greyhound Grace Kellie. She is my constant companion. On my worse days I lay and just cuddle with her and having another breathing being helps me get through.

I have had an abnormal EEG and suffer from migaines and my Dr has me on Zonegran it has really helped. He had to increase it till I got to the right dose but now I do faily well. .

I started to have symptoms after a D&C in 2003 and I was in m y early 40's. I started passing out, getting dizzy, intertinal problems and high heart rate. Many hospital stays for many days-weeks. Many miss diagnoses for 9 months till I got the POTS diagnosis. I've always had a low B/P my whole life.

Sorry to hear about your son. I had a 24 hour EEG and it shows slight seizure/migraine activity. I am on anti-seizure medication that helps with my migraines and no seizures

Oh yes, I use to sleep with 2 quilts and 2 blankets on my bed and long sleave and long legged PJ's and was still cold. Now I sleep with just a comforter, the window open all winter and the lightest PJ's I can find. Some times I get so hot it all comes off then I get cold. Durring the day the same thing happens. The temp in the house stays the same but aI go through Hot and Cold spells. I dress in layers and have blankets around to handle what I feel like.

I use to have very oily skin and hair. When it changed to dry I thought it was age but now that you say it, it did start to change after the POTS. Wow! My skin went from VERY OILY to VERY DRY. Major change. Also my hair. I could wash my hair 2x a day and it still looked greesy. But now it is very dry and I only wash it with moisture shampoo everyother day. Major change again. Part might be my low thyroid but now I need to rethink this as POTS. Thanks for bringing it up.

The 60mg is time release so it will slowly release into your system over time. In my opinion night time is the best time to take it. I take 40mg a day. 20mg am & 20mg pm and they are not time release. that is why I have to take them 2x's a day.

Well I tried the drinking this morning brfore I got up. I drank 20 oz of fluids and when I got up I am so dizzy. Not sure if it's the fluids or because I didn't sleep well last night. Insomnia has set in again. Been uo for over 2 hours and still dizzy, not going to be a good day.

It depends on the day. A good one I can drive a bad one no driving. At first 8 years ago when I was first diagnosed had a Dr who wanted to take my license away from me but my neurologist stopped her, so glad he did. I was faiting but only when I stood up and I never stood up and drove

Mornings are the worse. if I have had insomnia the night before just forget it the next morning. Going to try drinking more before I get up. Makes sence, I drink all day long then night comes and I don't drink at all. Very dizzy, tachy and weak in mornings. Have been for years

I go back and forth between being to hot and can't cool off and being too cold and can't get warm. When it's hot I stay in the airconditioning and use fans. But when I get cold like I'm starting to now with the weather change. I bundle up and keep my little dog close to keep me warm. And I have blankets on my couch to snuggle under. And drink warm things. Hot cider, tea, coffee or hot chocolete. But sometimes nothing works and I have to turn up the heat and just snuggle under in bed with the dog. I have a roommate and she does not handle the house to hot so I have to take her into consideration. That is why I bundle up so much. The dog really helps. She really gives off alot of heat. She is an Italian Greyhound about 15 pounds. My constant companion.

So sorry to hear this is happening to her. I agree get checked for the apnea. But I also suffer from insomnia. I just finished a week of only sleeping 2-3 hours a night. I was a reck for that week. Now I'm sleeping OK. It seems like it happens to me at least once a month. Good luch and keeping your daughter in my thoughts and prayers.

I am 51 and was Dx 8 years ago. I go through good spells and BAD spells. But all in all I would say I have gotten worse slowly at a slight decline over the years. When I was first Dx and put on meds for my POTS things really improved but each year I have more bad days than good ones.

Sorry, not here. I take 20mg Bid.

I'm on Prozac right now and it seems to be helping so far. I have been on almost everything out there in the last 8 years. Either doesn't work or adverse reaction. When we find something we try to stick with it. I've been on Prozac for over 1 1/2 years so far. Longest of any anti-depressant.