kayjay

I was supposed to see this neuro but saw Dr. Fealy instead. She came to Philadelphia and my doctor was very impressed with her. Of course I still have POTs but mayo was very helpful. You are in a great place and I am glad you get to go. Feel free to message me if you have any specific questions.

Can you get out to the Mayo Clinic in Rochester Mn? I have been to hopkins many times and could not get a proper diagnosis there. Other than doctor Rowe... They seem to know little to nothing about dysautonomia. mayo has (and designed) all the the testing and equipment you should have. They took my insurance and now my local doctor in pa helps me... I cannot tell you how valuable my trip there was. Hopkins is a great place, my friend had a brain tumor removed there, my father had major back surgery... but Mayo clinic is much better.... it is even cleaner and the nurses are nicer .

It is great to know that you have POTS before you have anything done. My worst problem was with the birth of my second child... didn't know that I had pots and i just bottomed out. Thought I was dying. Don't know if it was the epidural or not. A good doc can work with you. I had surgery after my diagnosis and made out really well. They will be careful with you because you are "special"

OK this is rude but we could all bring our meds and swap! Im not sure what's hurting or helping. We could have standing contests... that would be "fun"

Funny! yet sad. i went to a medical aid unit about a sinus infection. The doctor there acted like I had the plague when I told him about my POTS. He acted like I was insane.

I'm chiming in here. I was told NOT to get the generic. I only take the name brand. The prescribing doc was adamant about that. i have been on it for a year and a half. I went off of it worried about addiction and found that I am much better on it. For me taking it over time has helped. I can sleep. I have never increased the dose and I feel that along with the betablocker.... this med has done me the most good.

Mine will go up to about 190. I am on a beta blocker. I think the issue more is does it go up and stay up? I know if mine gets too high... I rest. Before I was diagnosed I was in the hospital and just brushing my teeth it would go up in the 170's. I wear a hr monitor if I am doing something out of the ordinary. A long as it settles back down when you rest i wouldn't worry I was told to really pay attention to how I feel and not stress about the numbers because... I have POTS ! It has also gone as low as the 40's. That's weird too!

Firewatcher, I have wondered the same thing. I would think that we would be at greater risk for a host of problems- blood pressure can mess everything up. My grandmother died suddenly in her 40's. she had recently been put on BP meds. I think she may have had pots. Very sorry about the kidney thing. That's really hard.

Totally agree with firewatcher and I would add that Neilmed is the best, least expensive rinse. My doctor told me if your water is ok to drink it is ok to rinse with. I use it in the shower with tap water. My son has not had an ear infection since we bought this. By now you might need something more (antibiotics). Hope you feel better soon. I have lots of drug issues but I do ok on a z pack. Once you have an active infection do not use the rinse or it may end up in your ears.

My pain was wide spread. I felt as though I had been tumbled dry or beaten up! Cymbalta has helped me a lot. Lyrica also helped.

My pain was wide spread. I felt as though I had been tumbled dry or beaten up! Cymbalta has helped me a lot. Lyrica also helped.

Jodie, just wanted to welcome you. I don't have a pacemaker so I don't think that I can be much help. I had undiagnosed pots with both of my children. I can tell you that it is better now that they are older ( caring for them... not the pots). I take klonopin and nadolol. I do want to mention because you have young children that Mayo clinic docs told me to drink v8 even before I get out of bed and to drink pedialyte if I get a fever. This has helped me a lot. Also did they say anything to you about using compression?

Sadly I think many of us can tell you similar stories. When I finally found out that I had POTS I wanted to smack some of the doctors I had beg to help me over the past 10 years . You are not alone. Don't let some moron get you down. Can you imagine how unhappy a nasty person like her must be! I had a doctor "fire me" because I would not agree that I was depressed! She sent me a letter. Hope you get to a good doctor soon. They are out there. Don't let yourself care what she thinks about you or what she said to you. There is a certain doctor at Johns Hopkins that I would like to hurt . He sent me to NIH to be a lab rat. I have no idea how much radiation I was given...I get angry... And then I remember he is not worth even thinking about! (hug) to u!

Every Doc is different. My main doctor thinks my CFS is a result of mu Dysautonomia. I think they often go hand in hand and POTS can certainly cause CFS. My doc said that with my form of POTS the fatigue is worst thing to try to treat. I am so tired of napping.

Gluten free has really helped me. Yesterday... no nap. It takes a long time ( for me anyway). I went GF totally in September and had been mostly GF before that. If you have been told you have IBS... I really think it is work a try. With IBS it can be hard to absorb what your body needs from your food. Yesterday I cleaned my closet. I was quite impressed with myself I still have POTS and other issues but I take any little bit of improvement I can get! Good luck to all of you. Thanks for sharing this info!

Praying for you Bella. ((((BIG HUG))). I have no doubt that she felt blessed to have you for a daughter in law. She must have loved you very much.

I see Dr. David A. Cohen in wynnewood ( lankenau Hospital). He got me diagnosed. he is a General Internist and he sent me to the mayo clinic but he now handles my day to day stuff.

just want to tell you you are not alone... not much help. But I went to my son's conference and told my husband " she is going to thing I am a drunk". Hang in there! I have broken more than I want to think about.. but you adjust and even when it is your great gramas china ( yes happened) it is just stuff. ((hugs)). PS HILBILgrl... your chapstick is in my dryer haha. Don't forget that even "healthy people" do dumb stuff. Please give yourself a break! I fall a lot ( I passed out 2 times last month) and my knees are super ugly! POTS makes things worse I know. I could tell you some ugly stories of me breaking things or people thinking that I drink!

I know that it is hard but be really strict for a while. It will help you ( I bet). You can't do gluten free halfway. I have become the rice queen! PM me if you need help. you have to fight your mind on this one!!! So worth it though. good luck pm if you need a cheer leader! check your hair products for wheat.... first winter with no itchy scalp... burts bees you can buy at Target.

Lise, don't worry too much. My BP is 170/120 ( I'm thin and 37). The feeling is worse than anything I think that with lower bp you are in better shape!

Before I knew I had pots I was diagnosed with asthma. I do have allergies but I have never had wheezing and the meds for asthma did not help much. Now I know that I do not have asthma but my pots really affects my breathing. Shortness of breath has always been one of my worst syptoms. I take nadolol and have much less trouble breathing. I do believe that hyper pots does cause panic attack type symptoms. Hope you feel better soon.

I have had lots of trouble with this and have posted before about hair loss. I have noticed that mine has really stopped and wanted to share what I am doing in case it helps someone else. I have had a history of bathroom problems "D". Anyway for the past few month or so I have been drinking pedialyte almost daily. I have noticed that my hairloss has all but stopped. I do know that pedialyte has zinc in it and I found that not enough zinc can cause hair loss. I also am taking different vitamins and so I cannot say for sure that zinc is the cure... but I think it is. I am using burts bees shampoos and conditioners as well... and staying away from anything with wheat in it. If you have "d" problems I think it might be worth looking into zinc. On Christmas my brother asked me if I had fake lashes on... also my eyebrows are less patchy. Hope this helps.

Does tumeric raise blood pressure? Right now I am able to drive myself but I am chewing nicotine gum which doesn't seem like a good idea ( I don't smoke).

YAZ sent be to the hospital before I knew I had pots. beware of any pill that messes with potassium. now I take Kariva and have not had a problem. Thoughout my illness ( starting in my mid 20's) I have had problems with spotting and bleeding between periods. As I got sicker I had bleeding nearly every day. That is why I was put on the pill to begin with. Good luck to you. Mayo clinic put me on kariva and I take it for 3 months at a time ( tossing the pills that are "blank". My problem bleeding is gone. I also have endometrosis- confirmed by laproscopic surgery... Sorry I can't spell! Hormones are tricky!

My resting hr is anywhere from the high 40's to about 100. I do take a beta blocker. It has gone up to 170 upon standing ( before meds). I ignore it at this point and just pay attention to how I feel not my "numbers".