kayjay

Once again I was told to raise the head of my bed. We have a nice bed and a good mattress. I don't want to ruin the only nice funiture we have . has anyone tried a long wedge pillow?

This happens to me all of the time ( when I am not feeling well). I have a pretty good bp monitor. I am not sure but I think it happens when changes are too quick for the monitor to read. I do know that I need to rest when this happens. I know it is scary. The first time it kept hapening I went to the Er. Of course my #'s weren't crazy until they had me walk around with a monitor on and my hr was close to 180. I want you to feel better because this does happen to me but i think when it does happen you should limit you activity just to be on the safe side!

My doctor wants me to start Mestinon. he is not a fan of generic meds. The phamacy game me the generic. Have any of you taken it... should I get the name brand... the $ is not much more. Thank you

I have hyper pots and my dr wants to start me on mesiton. I am wondering how other people with hyper made out with this drug. Please share your story.... it is always so helpful to me! Thankyou

This is normal for me! I always wonder how low it will go when I am sleeping!

I have my M.ed in exceptional children. I almost never sat. You can sit more with older students then with the little guys. i made out ok when not in a flare. I used to chew nicotine gum when I was teaching to help with brain fog.... funny thing is it helepd and I never smoked. i only chewed it at school. i do not reccomend this ...but my point is some kind of meds may help you. I loved teaching and hope to do it again someday but I can't imagine teaching from a chair. Best of luck too you. Maybe you will just be better when the time comes. I really did ok for a few years and I am thankful that I was able to show love and have a great inpact on some children with unique needs

Everyone is different so I can only speak for myself but your numbers don't sound at all like mine. My heartrate off of meds was about 60 at rest and 150 standing. It is normal to have your BP change somewhat when you move. Everyone's does. My bp would be about 90/70 - to 160/110. I hope that you feel better soon. Someone else may be better able to help you but it is hard for me to think you have POTS when your HR is so low. I think it has to go over 120 to have pots but I am not sure. Feel better.. and I hope you get some answers soon. Can you get a real TTT to get a good reading with proper equipment?

I have not changed meds... I am wondering if bradycardia can mess with your heart rhythms?

Jana- low like in the 50's at rest for a week maybe. I can only guess it must be lower when I am sleeping. It will pop up when I exercise ( recumbent bike) but nothing too high( less then 150) When it is low it beats with papitations or something (feels uneven ) but it may still have a sinus rhythm. THANK YOU FOR YOUR HELP!

hello I have a ? for all of you. I have Hyper pots and was making small improvements on a tiny amount of bb and Cymbalta. like most of us my heat rate can be really high or really low. The BB has knocked it back a little so I still have big swing but it is not going up to 170+ like it was. It will go form 52 to 120 when I go from rest to moving. For the past week at rest I have crampy chest pain and a low hr. My heart is not beating in a clear pattern. It is scary and uncomfortable but is it dangerous? I am not sure if I need to try to up my appointment. Thank you for any input you may have to offer me.

Praying hard for you. I know you need answers and help. Hang in there! keep us posted when you can!

Dani- don't worry too much. I had two inductions with undiagnosed POTS and made it though. It is wonderful that you know you have it. With my first child I had a foley catheter. with my second just the drugs. Good luck to you. It is always scary giving birth but so worth it! Just focus on getting to see that beautiful baby!

I have this type. Beta blockers block adrenalin. I take nadolol 20mg, cymbalta 60mg, and klonopin.05 as needed at bedtime. I plan on bakcing of the klonopin over time.

Hi I have a wonderful doc in Philly who got me diagnosed and has been giving me my meds. Mayo clinic was great... it is far and seemed to be more of a place to get diagnosed than to have follow-up care. I saw dr. fealy there. he was ok. mayo was impressive. Anyway my doc in Philly is going to meet dr. sandroni to go over my case (he just sent me an e-mail). I wanted to know if any of you have ever seen her or is she more of a reseacher. I know she is from Italy and now is at mayo. She will be in Philly this week and my doc is a big deal at his hospital (b/c he is pretty awesome- a GI). Thanks for your help.

Hang in there Bella.... I am praying for you and your family. take care of yourself. sent with love- kayjay

I had this as well.. just like Sophia. I think it was helpful to me as I clearly had Hyper pots. I can't imagine that it is too costly because no special equipment is involved.

I was just told that I do by my doc on Monday- but I didn't have any tests done. I am always cold but only noticed the severe discoloration when i got into the bath. Could that still be what you are talking about?

Nikki- not sure if this will help you or not. i am on a beta blocker and still my blood pressure jumos around even if I am not moving. Last night I wasn't feeling grate and was sitting with my feet up on the sofa. My bp was 112/80 then it was 150/90 and then 140/104. Not normal for me but I could feel a little chest discomfort. I took some baby asprin (just in case) and went to bed. Today things are better but I took a nap this am. For me these blood pressure jumps are normal when I stand and change position. I get more worried about them when they happen at rest. I was told that it is very important that your bp will settle down when you go to sleep. You may want to take it before you get out of bed in the am just to make sure it is not staying high. I also know that sometimes I feel the worst when the top and bottom numbers are close to one another (narrow pulse pressure). Hope you feel better but try not to worry too much ....sadly i think the Abnormal is Normal for many of us.

had the same (except vit D) when I first got sick and I don't have Lupus. they had to spin out the sample - took a few weeks. Mine was "an unusual speckled pattern". Hopkins determined that I did not have Lupus but 10 years later my ANA is normal and I have dysautonomia. I know it is great to get some feed back. just wanted to let you know that your #'s can improve and you may not have lupus (which would be good. POTS is enough). Keep us posted and hope you are on your way to doing better!

Yes I have been helped and hurt. i ended up in the hospital for a week after taking YAZ. mayo clinic put me on kariva and I have done well with it. Make sure that it is a monophasic pill- You want the level of hormone to be the same every day. Also i think the newer pills are more of a risk. make sure that you do not get a pill with any kind of diuretic. With the right pill taken the right way I think you will do better. Good luck

Summer- I'll have to look at my feet and legs next time it happens. I was so distracted by my hands... I got right out.. they were soo dark- and my skin is pretty pale. does it happen to you when you are cold and then you get in a hot tub? i got in trying to warm up.

Hi. When I get into a hot bath my hands turn so purple they almost look black. My nails are blue and my fingers look like they are covered in ink. I was just wondering if this happened to anyone else and if you know why.

I just went to the Dr. today and mentioned this symptom. For me it is more noticeable when I take larger bites or the if food I am eating needs more chewing (if that makes sense). I don't notice a time of day but I don't have trouble with foods like yogurt or bananas. I don't have any advice for you but I wanted to let you know that I believe (for me) it is my POTS. Do you think you eat slower at dinner so you notice it more? Is it worse when you are tired. When this symptom is really bad for me I almost feel like food is caught in my esophagus. I don't want to do anything about it at this point. It was worse when I was taking labetalol. ( probably not a factor) but I do wonder what symptoms are side effects. Good luck

hey- I am far (in pa) but I think we are facebook friends - I am almost always home and you can call me! PM me if you want the number. I should warn you... I don't always make sense when I talk and I nap a lot...but I think I am a good listener. kayjay

Detrick- I have these exact symptoms. I rarely take showers anymore or I put a stool in the shower. I don't have an answer for why. I know that when I get off of my bike I sit in a chair and drink and rest before I even try to walk upstairs ( my stuff is in the basement). I think it has to do with how our bodies are messed up BP wise. I wonder if you could do more on a bike (get more of a workout) then the treadmill? I really just want to be a strong as I can be and I find i can work out harder in a seated position with less problems. Also I take a klonopin every night and actually took one today before I went to yoga class. I think that it has helped me. Try drinking a V8 as soon as you are done on the treadmill. I do this and even take one in the bathroom when I want to shower. Seems to help me.