kayjay

I would say that I feel as though I had the flu, with panic attacks that last for hours and when the fear is over my whole body hurts as though I was run through the washing machine then tumbled dry (with rocks in the load!). HAHA

I am not sure. i know that they want me to redo my TTT. i will be there for a least a week. I don't think I care about stopping the lexapro but the BB has kept me alive- without it my resting hr was about 150.. I am 36 and unhealthy only b/c of POTS (not diet or lifestyle) although I have not been able to exercise for about the last 5 months- I still do a little pilates (laying down). I don't want to sound dramatic but I am worried about what will happen to me if I cut down on meds and then fly out there. How long did you have to stay? I am going to the pots clinic and will meet with a group of dr.'s from different fields. My TTT in PA was very dramatically posititive without any injections I was symptomatic in just a few min. thks

I have my visit to Mayo in less then a month. They want me to stop my meds. 50mg of metoprolol and 15mg of lexapro. How am I going to do this? I feel like I have to have the bb to live. Any advice?

Janey, I really don't like meat... I really hate chicken and turkey. Something about the texture grosses me out... but I do feel better when i eat it. I also do not like eggs but I can tolerate them scrambled with cheese and salsa. It helps me to think about my food as though it is medicine. Last night our power went out and I only had veggies and fruit for dinner. I was horribly sick and panicky all night. If you hate meat like I do try eating it on a bed of salad greens. I also don't eat cheap meat (except I will cook a london broil or strip steak in my crock pot and cook it with seasonings all day). I live in rural Pa so it is really easy for me to buy high quailty cuts on red meat (I will buy a whole filet mignon and have it sliced). I don't think that you need to eat huge amounts of meat but try to eat a little with almost every meal. Anyway I really feel that high quality red meat helps me feel better. I also will buy already roasted chicken from the store and eat it many ways. (sometimes when you don't like meat it helps to buy it already prepared). I personally love seafood but find it harder to get since moving from Md to PA. Be careful about eating to much canned fish because you can get too much mercury. Good luck... I think you are really doing the right thing... but I know it is hard. I would love to just eat bread fruits and veggies... but I can't. KayJay

I want to try stockings but I don't know what to buy. How much compression do I need? I have hyperadrenic POTS. Thank you

Waterbaby, I just had a Cyst removed this past spring. Mine was not complex- it was a bleeding cyst (gross I know). Your cyst could more serious but my dr told me they don't know for sure until they get the cyst out and biopsy it. I was worried about the sugery but I did ok.... You need to be really sure that you get extra saline during the surgery. Good luck to you, I will be praying for you. I don't think that cysts are related to POTS in any way but you might feel a lot better when this is resolved.

Does anyone else feel like they have a strange pain in your back / or side along with adrenal surges? Nothing has shown up on any MRI or other scan but when I have a POTS flare I have a strange nauseating pain where in my kidney area (Kidneys are fine though). PTL

Flop, Yes... i don't have any GYN problems (other than this one) they can't give me hormone pills b/c of my bad reaction to YAZ (although i never had problems with other birth control pills). I would feel better if someone else had this problem due to pots- I don't really want to go back to gynecolgist when it is not a huge probelm... just an annoyance.

Does anyone else have spotting between periods? I have had this problem for the past ten years (I am now 36). It was really annoying when I was teaching. I had a cyst removed thinking that this would cure the problem. It has not. Now I am wondering if it is a symptom of my Hyperadrenic POTS> Please let me know if anyone else has this problem. I don't have any other Gyn problems. THANKS FOR ANY INFO YOU CAN GIVE! Thanks

Have any of you been to the Mayo clinic? I am waiting to hear from Dr. Sandroni- Please share your story!

This used to happen to me all of the time. I had such a hard time eating... even when i wasn't feeling "doom". When I have intense fear I don't even try to eat. I will say that after 2 months on Lexapro... I have noticed that I almost neevr have trouble swallowing. I think this is a positive for me on the medications. Also I still feel fear for no reason and have a crazy startle reflex but the medication has helped this as well. Good luck!

Ram- I know I must have elevated NE levels. I was actually first misdiagnosed with pheochomocytoma 3 times based on 24 hr urine tests. I just get paraniod about the wine b/c I am on a beta blocker and Lexapro.

I have read about flushing... but my husband and mother say I "go white as a sheet". Do any of you with POTS have this? I do not flush. Is this POTS!

Do any of you do better when you have alcohol? I do not like to drink but with a little wine (I mix it with water) my heart rate and blood pressure are so much better. I do take a Beta blocker (metoprolol) and Lexapro and I worry about drug interactions so i make sure to not have more than one drink an hour... but it really slows me down (and that is a good thing). Does this happen to anyone else? Is there something else that could have the same effect that is not alcohol (I really don't care for it)? TKS

Yes- many times if I have been moving around at all my EKG is abnormal- I can usually feel it. If it is really bad it feels like a bird fluttering in my chest. For me my POTS gives me heart symptoms- but they are not lasting like they would be if I had a heart problem. IMHO because POTS is a Brain problem -I don't worry to much about the heart symptoms b/c as much as it feels like a heart problem ...it isn't. A friend of my mothers has POTS and she has been treated by a cardiologist not a neurologist. As a result she has had 2 ablations -now has a pacemaker and is worse off then she was before her treatment. I don't know why I went off of the subject like this. My heart "events" are caused my my adrenal glands! I will also have High Blood pressure when I am potsy but normally my bp is good. I hope you are feeling better soon!!

Erika- I also have MANY ventrical events PVC's. In my case it is from POTS. You could ask for a stress test if you are worried about the health of your heat. I am 36 and wore a monitor for a month when I was in my late 20's. I had TONS of PVC- yet my heart is still healthy... I just don't have to do any cardio like the rest of the world!! HA HA - Hope this helps Kayjay

Dr.'s also thought that I had a pheo years ago. I have even had 3 positive 24 hr urine tests for pheo. This year I had 2 drug reactions like the one you are describing. Horrible lasting panic. One time I had taken Motrin and the other time I was taking YAZ birth control pill. I have had undiagnosed POTS since my first pregnancy, but these drugs caused major flare ups and sent me to the hosipital. The YAZ is how I finally go the correct diagnosis- Hope this helps you.

Thanks for all of the info. everyone! I really think my hair loss is related to my POTS. I had a recently had a really bad episode that lasted 2 months. I have surges of panic that last for hours. My body is reacting to the stress I guess.

I hate to be so vain but on top of feeling crappy my hair is really falling out. Does this happen to anyone else? Did it stop when you got treatment? I am still waiting to go to Mayo so maybe some other meds would help. Thank you!

Hi, I have just started treatment for my hyperadrenic POTS a few weeks ago. I am on Lexapro and a bblocker. I am doing "better" but I not even close to "normal". Do any of you have info about Lexapro to share?

Can anyone suggest a neuro near me? I am still waiting to hear from the Mayo clinic in Rochester and really would like someone to help me closer to my home. My cardiologist in PA to me to see Dr. Sandroni at Mayo. I do want to see her but I think I also need someone closer to home. I have hyperadrenic POTS Thanks!

Please only take it under the care of a good allergist. My POTS has been made more severe by drug allergy reactions. I cannot take NSAIDS at all and I am going to the allergist on Monday to find out if i can take Alive. My drug reactions in the past led me to the hospital and I had hives for weeks. GOOD LUCK

No they did pet scans and 24hr urine tests. This was 6-7 years ago and my plasma tests were never positive. Looking back I think that the Dr. I saw at Hopkins wanted me to have a pheo. I know they wanted the tumor to study it.

Hi, I am 36 and was just diagnosed (after a long hospital stay) with POTS. My resting heart rate was in the 160's and I seemed to have set a new HR record at the hospital during my TTT. I am waiting to see a Dr. at the Mayo clinic and I was wondering if anyone else has a similar story. I first had high blood pressure out of the blue during my first pregnacy. I now know that I have had POTS with high blood pressure for 10 years. Six years ago Johns Hopkins told me that I had Pheochomacytoma based on 3 positive urine tests. They sent me to NIH to be used as a lab rat and no tumor was ever found. NIH thought that I did not have Pheo. Hopkins thought that I did but that it was too small to see. I went without any kind of treatment for 6 years. Then I took the birth control pill YAZ and ended up in the hospital. The good news is that the pill made me sick enough to get diagnosed with POTS. I know many of you realize what a relief this was as I have been sick for more than 10 years. Does anyone else have a similar story? If so will you share what meds you are on? I am taking 50 mg of metoprolol and 15mg of Lexapro. I also had MAJOR TOXIC MOLD exposure when I first got sick and have developed bad allergies. Thank you for your help. I still don't quite know what I am doing but I am so thankful to be learning from all of you. Kayjay

Shell, Please be careful with taking hormones. I was just diagnosed with POTS last month but I have had it for 10 years (since my first pregnancy) I was misdiagnosed at Johns Hopkins For pheochomacytoma (adrenal gland tumor) any way I was getting by for several years undiagnosed and untreated but then I was given Yaz for my endometriosis. It made my POTS symptoms very bad. My resting heart rate was in the 160's and my ttt after beta blockers was crazy high. Every body is different and I am thankful to finally have a diagnosis... but the birth control pills almost killed me at the age of 35. Good luck to you! I would be weary of "new pills" ...consider something that has been around for a while... I never had a problem with pills before the YAZ.