kayjay

I found that any upright exercise is a nightmare for me. I ride my recumbent bike but I cannot do the eliptical ( yet). I also use hand weights on a back roll -you can roll up a blanket or a towel and put it under your spine. This is how I do flys, chest presses etc. I also joined a gym to use the leg press machine. I do many leg press exercises, seated leg curls, hamstring curls, seated rows, lat pull downs. I do not think I can really do any cardio. I wore my hr monitor in the tub (130) and in the shower 150+ even on a beta blocker!!! I am starting to do a little yoga- I was always stong but not flexible. Now that I am in my 30's I think stretching is important. I do core work on a ball- only if it makes me not feel like vomiting. I have to do everything slowly and with the bike I don't push myself. If don't feel right I make myself get off of it. My thinking is that cardio is not to important to me... I know how frustrating this is.. I am working on changing the way i think. I mentioned before on this site I gave away my tennis equipment- that helped me... it was mocking me! I need to rid myself of my roller blades next- I don't even want to risk a fall b/c the recovery would be a setback. Good luck to you.

nadolol seconded by klonopin at bedtime.

I took lexapro for a few months (a ssri) but recently switched to Celebrex (a sNri). I was really worried because I have hyper pots and thought that it might make me worse. i was worse for about 2 weeks but my dr. told me to stick with it and I am soo much better. I have been able to exercise a little and have even gone to the grocery store alone. I had High Blood Pressure but I don't now. My next visit to the dr I am going to ask him if I can reduce my beta blocker. Good luck... give your body time to adjust to the med.

Ok... I'm a pusher. I don't want to miss out on life altogether. I am trying to exercise every day now that I am on meds. I ride my bike for 30 min... and then I have to take a nap. My legs are getting stronger. I have to force myself to get on the thing and then I use a combination of music, book, and tv to distract myself from the pain. It is helping though b/c my legs are stronger. When I am in a big flare I spend most of my time in bed. This is my deal though. If I start to do something and I really feel off (or my hr monitor goes above 150 - I am on a beta blocker and at rest my hr is about 50-60). I stop. I don't let myself feel bad for listening to my body. What is bugging me is that for my 34th birthday my husband bought me an eliptical. I love it. I hate it. Every once in a while I get on it b/c it is so much fun. I can't even stay on it for 10 min. Someday I will get rid of it. I know that pushing myself upright is just stupid. I am also getting tired of taking baths. I got in the shower today...started to feel "off" got out and got into the tub instead. I don't know if you can relate... I try to do as much as I can without being stubborn. I am cutting myself some slack and have learned when to quit. I also have embraced the nap! I am doing better now on medication and having been diagnosed I have learned some things that help keep me from crashing. If I didn't push myself to MY limits (the sane limits) I would get weaker and spend more time in bed. It is silly hard for me to even lift my 5 lbs weights. I can do more than I could 6 months ago and I am happy for that. Mayo Neuro told me that most likely I will have this for the rest of my life. I gave away my tennis things and avoid stairs... But I am learning to do some yoga poses and pretending that I am not sad. Sorry for the rant... I just think you should do what you want ( within reason) because you know yourself best! Even with POTS our bodies were created to move. Best to you!

Hi - I was there for 5 days in August. I just now paid the rest of my bill. They are not more expensive than other hospitals (actually things were less because I was not an inpatient) also they eliminated tests that I did not need ( for example I didn't need the tilt table test because my heart went up during another test). I don't think you will know how much it will cost until you are done. I will say that for me it was money really well spent. I came home with copies of everything and I am not planning on going back. I feel like my local dr can help me now. I had to pay for co pays and my insurance would not pay for blood pressure monitoring... They said it was not required. I tried fighting this though the insurance commission but ended up having to pay for the test myself. Good luck to you. I am glad you are able to go I think you will find that it is money well spent.

I found increasing my salt and potassium really help me "hold"fluids better. Once I started drinking v8 a couple of times I day I realized sometimes I even sleep though the night without getting up to use the bathroom. Mayo clinic told me that I was drinking too much plain water. You can drink sports drinks... that should help.

Klonopin does not make me drowsy in the AM. But Lexapro did. I switched to Cymbalta over a month ago and I am much better in the morning. Good luck. You could try taking it at dinner time to see if that helps. I know beta blockers make you sleepy I don't know about Paxil but Lexapro really drug me down ( no pun intended). K

I wear them under regular socks. They are pretty thin and I always wear warm shoes b/c my feet get so cold.

I should add that I really felt worse before I felt better. I do not do well with med changes and I was a chicken. Mayo clinic said it was ok and my mom really encouraged me to stick it out. I had a night where it felt like there was a bird in my chest and my bp was high for a few weeks. Now it is great though. I wonder how many of us need to really give a chance for our bodies to adjust to the changes. I realized how much better I am doing when it was time to get a refill. Just for example it is 9:30. I used to be asleep by 8:00. Everyone is different but I know in the past I would have quit before the drug had time to help me.... we have SERIOUS concerns about drug reactions.... for example my first and only ambulance ride! I think I learned that with some meds I really am going top need a month to know if it is helping me.

I know this is my second post but compression comes up a lot here. I finally figured out how to be comfortable and compressed I combine high-waisted shape wear with compression socks that end below the knee. I couldn't stand the bunching of the full length hose behind my knees. Soo much more comfortable. Cheaper and works really well for me. I actually have been buying shape wear from JC Pennys and I got the compression socks from the drug store. It is easier to get your fit with separate pieces. Traveled to Fl this way and made out like a champ!

Hello all, I have hyperadergenic pots ( I know I spelled it wrong ). I have it to the point that I was misdiagnosed with Pheochromacytoma at Johns Hopkins based 3 or 4 positive 24 hour urine. Mayo also confirmed that I had Hyper pots based on my plasma tests. I was on lexapro and Lyrica. Also tired all of the time. I wanted to try Cymbalta but I was afraid b/c some docs think you should not take this with hyper POTS. Anyway I slowly made the switch and had mild high PB for about 2 weeks. I was worried and thought about stopping. My Doc suggested that I give it a while longer and I am glad I did. It has helped me so much. My BP has come back down and I have way more energy. I could not stop sleeping before. I am not "cured" and don't think I'll ever be able to play tennis.... but I have been able to work out... have not been napping.... have less pain ( cymbalta helps Fribromyalgia too). Maybe this spring I can play golf! I thought I would post about the meds I am taking b/c they are a huge help. I have not had a panic surge in weeks. I take cymbalta, nadolol, and klonopin at bed time. Hope this helps someone else. I have learned that when I switch meds I have to get over my FEAR (bad past reactions) and give them more time to work then a "nomal" person. I even flew last week to FL to see my mom. NO PROBLEMS.

When I have had bad hives... it has always been due to an antibiotic. I would check with your dr on this one. I have had hives from bactrum and avolox. The last time I had a problem with hives it happened 2 days after I finished the antibiotic. I had to go see a dermatologist. Good luck

I think that I first got sick because of mold. A doctor that I was seeing at the time said that my symptoms were like I was being poisoned. I think toxic mold exposure is not so much an allergy. I had a systemic reaction. Even ALL of my lymph nodes were swollen. I did not have typical "allergy" symptoms. I wonder how many of us who know we have had mold exposure have hyperadergenic POTS. Maybe this kind is more likely to be cause by toxins.

I can't say enough about Klonopin at bed time. really has helped me!

I think Jana is really correct. Your son must be fighting a virus, infection or the like. I have been sick for 11 years and have never had a high WBCC although I usually have a bit of a fever. Last fall I was sick with a temp of 103 and my WBC count was fine. Helped me get my diagnosis. I was having a drug reaction. I hope things are better soon... sorry for your suffering.

PS. To be really personal ...ask about treating your husband. Men can sometimes have yeast issues and pass it back to their wives. I don't know much about this b/c my poor husband is neglected ...but I have read that yeast can live on the skin.

yes... I do. I got a RX cream from the GYN. Over the counter stuff doesn't work for me. Also to be a bit personal... make sure you wear cotton underwear and try using a baby or unscented laundry soap. Once you get this cleared up I really suggest you make sure to use a probiotic. ( I know I am spelling it wrong. this is the only prevention that I have found to work. I have know idea how POTS and this are related. But they may be. I think yeast infections are so awful I really think about prevention. Don't suffer though. I would call your dr. and get something to knock it out. I have heard of people putting vinegar in the tub. The salt will not make you smell like an Easter egg. I think the point is to change the PH of the water. good luck!

Thankful, If you wear compression that could be part of your problem. Also this condition can mess with your blood sugar ( and depending on what you eat). yeast thrives with sugar. I take a probiotic daily and I eat yogurt daily. I know how awful these things are. You can try sitting in a bath with baking soda. I bathe with epson salts. Also if you must wear compression try sleeping au natural (at least your lower half). Hope this problem clears soon. They S@ck.

Mayo put me on Nadolol. It seems to help how a beta blocker should.

I just wanted to chime in and say that I have had at least 3 positive 24hr urine tests for Pheo- was even sent to NIH for a PET scan... and I don't have one. I "just" have hyper pots. You can have positive urine test and not have this tumor. The blood tests are more accurate. Johns Hopkins was so sure I had a Pheo that they sent me to NIH for a week. I know it is a tricky diagnosis, but for most people POTS is much more likely. If your plasma test are not positive pheochromocytoma can be ruled out. If you see an endo. they will be much quicker to diagnose you with a pheo. This past spring when I was in the hospital the endo. doc was convinced that I had a pheo ( I don't). I also have flank pain ( in the adrenal area). I spent 6 years waiting for this tumor to show itself... I am not sure if your tilt table test would be positive with Pheo... I have heard of people having High Blood Pressure while urinating because of the location of the tumor. Good luck

Cat lady, I just wanted to tell you that 6 years ago (before I knew I had POTS). I had a crazy high ANA and the "pattern" was speckled. Johns Hopkins "spun the sample out" - took two weeks. It was not lupus but they didn't know what it was. Long story short, my ANA test is now fine. Looking back I was having bad problems with mold/allergies at the time. Sometimes our bodies do strange things. I hope that you will remain hopeful that you do not have Lupus. Maybe this is a little "hiccup" in your blood work. please keep us posted... I'll be thinking of you...I know this can be scary while you wait to hear.

not the Reebok- i have never tried them. if someone else has please share. I have a few pairs of Fit Flops. they are comfortable but DO NOT HELP WITH POTS. They are too flat on the bottom.

So sorry- I am praying for you and your family- I hope you feel love and peace.

Hi all, I feel worse than usual. I took my bp it is 150/100. I am on a beta blocker....but I did start a new med (snri) last week. How High do you let your bp get before you call you doctor?

What a nice post- I too am so thankful for this site. I realize that many people have taken the time to share knowledge and help me. I think I at least look in every day... I don't know what I'd do without DINET!!!