kayjay

I am really slow to anger... but when I had adrenal surges ( before I was diagnosed ) I would get suddenly angry. For anyone who knows me well they would see a big disconnect. i am very mild mannered by nature and really don't get angry. Now that I am on a beta blocker I am back to normal in terms of temper. I don't know if it is just hyper pots- but adrenal surges are all about fight or flight. I kicked my kitchen trash can in front of my children once. I had to apologize and fix the dent. They thought it was really funny. I was mortified. I know without POTS, anger is not my thing. I am more likely to react to things with hurt feelings I have never even honked my horn at someone!!! I have thought about it though

I take it with no side effects. Not sure if it is helping my hair.

I have hyper pots ( very high levels in plasma and urine tests). Lexapro did not help me at all but cymbalta does. I am not sure that anyone really knows completely how they work but an SNRI is much better for me.

I second the compression and wheelchair... or cane seat. Ask to pre board. I kind airline staff to be very helpful but I have had other passengers be rude to me. If you are sitting in a wheelchair people will not be rude. I request bulk head seating and put my feet up on the wall. Best wishes. It is scary but I found it not to be as bad as I thought it would! Also I had a note from mayo clinic and no one even looked at it. Airlines are used to seeing all kinds of things.

Short answer "yes". my heart rate will go from 50-60 to 170-180 just standing. However beta blockers for me have decreased the highs and unless I am exerting myself or standing too long it now usually stays under 120. I know it is scary but try not to worry... this is POTS and even in "normal" people your heart can increase to almost 200 depending on your age with exercise. My doctor told me not to worry about it unless it wont come back down with rest. It always does .

I have CFS but am having a really hard time sleeping at night. I fall asleep because I am exhausted but wake up throughout the night. Klonopin used to help me sleep but I think I have now gotten used to it. Do any of you take sleep meds? Do they help you? Are you more tired in the morning? Fatigue is one of my worst symptoms and I am starting to wonder if sleeping better at night would help me. Thank you.

CM... I also "pee" a lot. Even before I was diagnosed. I even get up in the night many times. I have been though all kinds of testing, Johns hopkins, NIH, and Mayo clinic. Nothing has ever been found. If I push on my back where it hurts I can make my self sick to my stomach. My doctor suggested it was muscle but I know that it is not. So basically I think in my case it is a POTS symptom. It feels worse sometimes when I am worse. Everyone is different and I think I am just really "sensitive" in a way and I feel something that does not show up in testing. I would like to know do you have hyper pots? several 24 hour urine tests show that my adrenal glands dump a lot of metanephrines... It seems to make sense that there is a connection.

Bella... so sad for you right now. I will be praying for you. I hope everything goes well on Monday. I understand what you mean by feeling like a burden... but family and relationships are "burdens" by design. We all have to depend on others at one time or another. We all would wish ourselves healthy if we could. So hugs to you and keep your chin up! I am glad that you had such a loving mom. You are very loving to others. Take care!

I have had flank pain with my pots from the start. No other cause has been found. I always wonder if it is my adrenal glands. for me the right side is worse.

My husband gets me a v8 and water when he leaves for work. i can get up an hr later. I know many people don't like v8... pedalyte also works. Dr feely at mayo clinic suggested these drinks and they really do help me.

I think I know exactly what you are talking about. I have them less and less often now.... but they are horrible. Beta blockers block adrenaline so over time I think that helped. I take Klonopin, Nadolol and Cymbalta. Hang in there. I will never forget how this feels and hope I never do again!

I really wouldn't worry about it. If you see a doctor that has time to google you... he must not be good enough to busy. Finding a good doctor and getting proper help took me 10 years. I was even sent for a drug test by one doctor. Many doctors will think that people with pots are a little crazy because our problems are so seemingly random and vary so much. I would guess that most of us have been misunderstood by many doctors. Find one who is at least willing to learn about POTS and move on if you are not treated with respect. best wishes.

I had this problem ever since I got sick. I have been gluten free for over a year and no longer have IBS. I think it really took about 6 months to help. I am sick today because 3 days ago I ate a cookie. Gluten does not cause a problem for me right a way but a few days later I will be sick. I also take fiber. It seems odd bot it helps with both problems. Hope you feel better soon. bathroom problems are one more problem we could all do without!

yes. I take cymbalta. Lyrica helped more but I had side effects. Cymbalta takes a while to work and I am not pain free but I am able to basically ignore my aches.

I have been having horrible night sweats since I was in my 20's. My hormones are good and I believe i have them because of my POTS. Does anyone else have these? Any Idea why?

It's because we are so sweet!.... No... I was a hospice person... after social work...got my M.ed also have POTS. I think if u care about others u may try to share info here!

I drink when I get up to use the restroom and have found a V8 is a good thing to drink before I get out of bed.

I don't know if this helps but I have hyper pots- diagnosed at mayo clinic by blood draws. Resting and then after walking a little. My heart rate on the tilt table went up over 100 beats so maybe that will make you feel better? on meds it still will jump up 70 beats... from the 50's to the 120's. YUCK.

I have a great Gen. InternistI see every 2-3 months and check with him before I do anything. I am his only POTS patient. If you are near a great hospital find the best doctor there you can that will work with you. My doc helped me get diagnosed and sorta oversees everything... like when I should go see a cardio. and what to do when I fell and broke my nose. he is an hour away but always gets back to me by email. I think you should look for a "regular" doc who is willing to learn about POTS and can handle things like the flu, ear infections, allergies, or anything else that might come up. Good luck with your search... but there are a few great doctors out there.

I also took klonopin for some time before the cymbalta. It helps me a lot.

Yes Pedialyte really helps me. It is a bit expensive but it is sooo much better than spots drinks. V8 first thing in the morning helps me

My children are more compassionate than most, and are less likely to judge others based on an outside appearances.

Coffee is too much for me these days. I drink small amounts of green tea sometimes. It has less caffeine but can give me a little boost without palpitations. Funny I used to drink coffe every morning when I was teaching but after my last big flare up I lost interest in it.

I gained weight on Lyrica but got great pain relief. I switched to cymbalta. My pain is not as well controlled... but I'd rather have a little pain then gain any more weight. If you are unhappy with Lyrica side effects you could try cymbalta. I might even get more pain relief from it but I am unwilling to up my dose. It is being used a lot more to treat pain.

Haven't started it yet but my cardiologist just suggested I try this. I have to have surgery next weeks so I haven't started yet, but I am on Cymbalta. She warned me to start with a small dose and to check my bp. She said that it will increase supine bp. I have high bp so I will be using it very carefully.