kayjay

Have you considered a gluten free diet? If you are sensitive to gluten it can cause pain. I still have nausea but some other gi problems are better.

It took me more than 10 years to get diagnosed. When I first got sick I went to doctor after doctor. One told me that I had depression. One told me I was a "hypochondriac". A third sent me for a drug test ( street drugs). As a young woman in my twenties I was very poorly treated by doctors and nurses.

Tachy, thank you! Elkton is in Maryland. I live in PA but am only about 20 min away. I asked if if she was on dinet and she said she was but not often. It was hard for both of us because we were both in the store and both standing. I am very frustrated with myself. She was very excited to meet someone else with Dysautonomia. I am hoping that this post will get bumped up every once and a while.

This is a little selfish but I think any of you with brain fog will understand. I was in the grocery store on the 14th. The woman behind me had a seat very much like the one that I have. I felt compelled to ask her if she has POTS. She told me that she had OI/ disautonomia (me too!) . Anyway we exchanged information and I told her that I would contact her. It was pretty exciting because she told me that she doesn't know anyone with our condition. I meant to pin her number to my corkboard. I was feeling sick (shocker!) and I am guessing that I felt the scrap of paper in my jeans later and tossed it in the trash. I would like to find this woman so would you fellow potsies mind if I bump this post every once in a while? I feel horrible every time I think of her because I told her I would give her my doctors information. Thank you for understanding, kayjay

Hyper pots has to do with adrenal "dumping" when you move from a resting position to moving around a little. Most people with pots do not have hyper pots. I think the number is thought to be around 10%. I have hyper pots and have had low and high blood pressure. Beta blockers help me because they block some of what the adrenals are producing. You can have hyper pots without high blood pressure.

I had two children before I was diagnosed but I was sick. I got sicker with my first child and was induced early. Both of my children are healthy ( Praise God) and I would do it again in a (tachycardia) heartbeat. I agree with the previous poster that things would have been much better for me if I had been diagnosed. Mine are 20 months apart and that has worked out well for our family. I do have very supportive parents and that has been a huge blessing.

I started on lexapro and now am on cymbalta. Did not like the lexapro. I think it made me emotional distant too. I do agree that these drugs do take time to work. \

I am sorry. I have passed out at the YMCA. Once I got to my car I called my mother and cried. I was so embarrassed! My mom reminded me that it would be worse if no one cared. Everyone in my swim class forgot about it pretty quickly. Most assumed I had low blood sugar. I am sorry this happened to you, but I hope you don't let it stop you. I was afraid for some time. Hopefully this will never happen again.

I gained weight on meds. Looking back I was a little too thin and could eat anything. For me things leveled out and I stopped gaining. Are your finger swollen? Some of the weight for me is water retention. I can tell when my rings get tight.

I found mayo to be very helpful. I went though the POTS clinic. I have a local doctor in PA, but the trip to Mayo was worth it for me.

Yes! I never was carsick until I had pots. I had to travel with a bucket ( gross I know ) when I was at my worst. I do better if I am the one driving. Sorry that I am not helpful but I just wanted to confirm to you that this may be the pots.

when I fly I get a bulkhead seat and put my feet up on the wall.

I have the hair loss also. I don't eat gluten, dairy and am starting b-12 shots next week. you may want to look up b-12 deficiency.

Have any of you had b-12 shots? i am supposed to start next week. I am hoping that they may help my energy level. Any thoughts? Thank you!

Lexapro, cymbalta. I prefer the cymbalta but I also am on a beta blocker.

All of the time! I actually am wearing a heart monitor as I type this ( for the next 10 days). For me they are just a part of pots. I don't recall not having them. I had an echo yesterday and although I have slight MVP... my heart is just fine.

I had two healthy babies with undiagnosed POTS. With my first child I was on bed rest and induced early because I had high blood pressure. ( Now we know I have hyper pots). Unlike people with high blood pressure during pregnancy, my BP did not come down after I gave birth. My oldest is 13. I wish you well and would just like to add, i think it is a great benefit to know you have pots. I had no idea what was wrong with me.

The only thing that has really helped me get any sleep is ambiem. I also have a bucket next to my bed. It just makes me feel better. I don't know what the cause is. I usually don't vomit in bed ( but I have super gross)! Moving around when I am feeling sick makes me sicker. Ambiem ( not sure how to spell it ) does not help with any actual symptom, it just knocks me out enough that I am able to get some rest. Sorry you have this. I have even lost my vision while reading in bed - not moving. My heart rate increases at night seem to go with night sweating.

V8 and pedialyte help me the most. Just don't always like the taste and pedialyte is expensive.

Can you contact your insurance company and mayo to see if you can push it though? Sometimes they deny everything at first. I was able to get everything covered except for the 24 hour blood pressure cuff. I was there 2 times for 5 days as an outpatient. It is a pain and a waste of time, but if you if you persist they may cover it. Good luck... but don't be like me. I think they didn't cover the ambulatory bp cuff because I waited too long to fight about it.

I have very hyper pots- was actually misdiagnosed with an adrenal gland tumor bu Johns Hopkins and sent to NIH. Mayo clinic's plasma tests on me confirmed hyper pots. I take cymbalta snri, Lexapro ssri did not help. I am also on a beta blocker. I tell you this because I think you need to find what works best for you. My hyper pots is not effected by the cybalta and it gives me pain relief that lexapro did not. Everyone is different, but if you trust your doctor, you may want to try what he suggests. I have not had any problems on a snri, but again I take nadolol too.

Works for me. Lyrica worked a little better but it caused weight gain. Cymbalta has knocked my pain back. I have been on it for over 2 years. It is expensive so you could ask your doctor is something else would work for you.

This may not help you... I have no problem with the vitamins, but crystal light makes me a mess. I had the the newer kind and every time I drank it I had a reaction. Took me a long time to figure out what the problem was.

My 24 hour urine was positive for pheo every time ( at least 4 times). The plasma levels are more accurate. I know Sue and I already mentioned the Dr. at NIH. I also read that you are frustrated by the way you have been treated. The nurses at nih were wonderful ( even got me a birthday cake because I turned 30 there)... but the dr. had the worst bedside manner of any doctor I have ever seen. My husband was quite shocked. He never spoke to me and never made eye contact ( again I was an inpatient for a week). Expect to be treated a little like a lab rat. Who cares though if you get the help and info you need. You don't have to have any of these people over for dinner . Best wishes to you. I hope you get some answers soon. You may ask about an alpha/beta blocker to see if that helps with your symptoms better. I am not sure if this is helpful, but the Dr. at Johns Hopkins told me that he was 100% sure that I had a pheo. He is the doc that sent me to NIH. I remember where I was when he told me on the phone that it could not be anything else. He also told me that it must have been too small to see but it was still there. The reason why I am telling you this is that I don't know how you can tell the difference between Pheo and truly HYPER POTS. If I saw an endo tomorrow they would be sure I had a pheo based on my symptoms and labs. My MIBG scan had a "shadow". My confidence that I was finally properly diagnosed at mayo clinic is really somewhat based on the lying/ vs standing plasma test. My adrenals dump out so much "c%@*", my 24 hour urine indicates pheo. Have you looked into Mayo in Arizona? I am truly sorry for your suffering. I am so much better now but really thought that I was going to "kick the bucket". Have hope that you will not always feel this horrible!

I will go with Sue's spelling of the Dr.'s name because it has been so long. I spent a week at NIH with Dr. Pacak. He really is a "go to guy" for pheo's. If you have one, they will do what they can to get you out there because they want the tumors to study them. He was right in my case. I don't have pheo. It really might be worth looking into. PET scans are more sensitive then the cat for this.