kayjay

I am going back to Mayo ( leave in the morning). It is my follow- up with doctor Feely. I just was wondering if anyone else sees him. I have been really bad the past two weeks and I am not going off of my meds for the re-testing.

My heart isn't small- I also love to exercise- just can't very much now!

Sue, I am 37 and have had this symptom for at least 12 years. I have no hormone problems. For me it is a POTS thing. It only happens when I roll over and I also will get short of breath. You may have both but because you mentioned rolling over... I think it is more of a pots problem. I have this symptom on birth control pill and off.

I might be out of the ordinary but I don't go to a cardiologist. I see a local GI doc (every 6 weeks) and a neurologist at Mayo clinic once a year to every 6 months (too far so I choose once a year). I saw a cardio in the beginning but not for my treatment because my heart is healthy my pots is a "brain problem". I feel like a good GI doc is better because my POTS affects my whole body... not just my heart.

yes. major problem for me. I will say I no longer have the weight loss problem though from drinking coke, gingerale and eating crackers. I feel much worse with an empty stomach. I have a small bucket I keep nearby ( and in the car). I don't vomit very often ( maybe once or twice a month) because I have learned to stop moving when I feel nausea come on.

I took 1/2 of the non-time span dose 2x's a day.

I think the SNRI may have taken about 2 weeks to get used to... but I was worried about taking it. mayo clinic told me it was ok... but I had read on this site that it might not be good for hyper pots. It has been a lot better for me than the SRRI which just made me more exhausted. I have this condition for at least 11 years... maybe even since I was a teen... but on the SNRI I have had less pain and have been better overall- I also take klonopin and a small amount of a beta blocker. Before I was diagnosed.. I was drinking beer before bed just to get some sleep. Also I have been able to exercise on my eliptical ... before I could only use my recumbent bike.

I hope that it is helpful for your daughter. I took it for just over a month and could not stay out of the bathroom. I did not notice if it helped in other ways because it made me so sick.

ram- I have hyper Pots too and I think it is strange that cymbalta seems to help me- it is a SNRI- I prefer it to the SSRI I was on- it seemed to make me even more tired. weird...any thoughts. As a side note my hyper pots is hyper enough that I had 3 positive tests for adrenal tumors (which I don't have) Also I tend to feel better when I drink alcohol.

What pill? I am on kariva ( mayo clinic prescribed) but YAZ sent me to the hospital for a week. Not all pills are the same.

I think I feel a little better when I am retaining fluids... I can tell because my wedding rings are too tight. Normally they slip around on my finger... so I would say yes I feel better when I weigh more. Also I would drop weight very quickly when I was having an episode before I was diagnosed and on a beta blocker.

I take a whole or a half of a .5 Klonopin every night. It help me more than any other drug. If I don't take it my nighttime adrenal surges are unbearable. I never take more than one a day. I have been taking it for a year and my doctor sees no reason to stop. I have not had to increase the dose. I prefer Klonopin to Ativan. I thought about stopping just to make sure I could but since it helps me I see no reason to.

I also have trouble regulating my body temp- I always have a low grade fever (about 99.5 to 100). Mayo clinic told me that my body temp was high and when I had my sweat test they made me stay in longer b/c I started with a hight temp- they wanted to increase it a certain amount. I do think POTS is the issue for me but there is some variation in "normal people" too. A good thing for those of us with cold hands... that is a key trait for a good pastry chef!

I live in pa and feel horrible all winter! I am not sure that cold is any better than hot. I cannot regulate my temp well in general. I do feel better near the sea... but who doesn't? good luck to you.

I'm with Jan, I drink before bed and when I get up at night. I have a large v8 before I get out of bed in the morning. It helps even more if I drink a v8 before bed.

Lillys are a traditional choice. They are beautiful and less pricey. Sorry for the loss of your friend. I am sure the family will be touched by whatever you chose to send.

Just want some advice. Today I just feel extra weird... I feel mentally out of it. Not really tired. I thought maybe my BP was off. instead every time I take my hr and BP that shakey heart thingy pops up. My numbers are fine my heart just isn't beating right. Should I go for a walk and try to get it beating right or take a nap? My heart is healthy just sometimes it beats funky and I don't know what to do about it.

I have this pupil thing. I also have vision loss before a migraine. Also my eyes sometimes don't focus together so reading is hard. My night vision is horrible - can't deal with the oncoming lights. I have 20/20 vision but bought reading glasses before I know I had POTS. I went to the eye doctor ... he said all of my problems are neurological.

Please don't worry about it now. I always was thin and now I am normal...to me it feels fat. I also gained more than 10 lbs when I went on meds. Just focus on getting better. you can deal with the weight later. I struggle with this every day (none of my jeans fit) but just think about how sick you were and what is important. When I think of the weight I have gained I try to remember that I am feeling a little better and I want to be a good mom- even if I am not a skinny one. Illness takes so much from us. A year ago I was sure that I would be bald and my eyelashes were falling out. Today most of my hair is back and on Easter a woman came up to me and told me what pretty eyelashes I have. My point is I know it ***** but try to focus on what is most important. You can deal with the weight later. Your body wil settle. I thought that I would just keep gaining and gaining but after 12-14lbs I stopped gaining. I just now and trying to cut back and lose some. Don't be to hard on yourself. If you can get a few outfits in a larger size that look good on you. It helped me to get a few pants that were (yikes 10). I was a size 6 if not a 4. Sorry you are dealing with this but chin up.... most Americans have weight issues so I don't think anyone notices our little gains!

Just wanted to update. I am convinced I have a problem with gluten. Going off it did not really help my pots but my pain and IBS problems have been much better. Until last night when I was making pasta salad for my family. I put a little in a bowl to taste it to check the seasonings. I swallowed a whole bite. I spit out what I could but about 8 hours later my belly swelled up like I was expecting. Today I feel like I have the flu... everything hurts (hands, elbows, back etc). And I am itchy. For anyone who has been told that they have Fibro and IBS..... it might be worth a try. Now that I am basically off of gluten I can really feel the effects of eating it. Wonder how you are feeling cat lady? And Miss Mouse- found a gluten free bakery in Kennett Square- pizza crust mmmmm.

Fire watcher- did any of your docs mention the use of a light box to try to trick you brain. I do not know what I am talking about but I have a light box and was wondering if it would help me. I don't want anymore drugs... I also nap during the day (sometimes twice) so I do get sleep.

Great exciting news.... thanks for sharing!

Thanks for keeping us up to date. I lost a niece a few hours after she was born so I can imagine how you and your family might feel right now. I'll be praying for the 18th and that everything will go well.

make sure you are hydrated and have salt and potassium. I have hyper pots and I do drink sometimes... it does make me feel better in the short term.... but getting dehydrated can be dangerous. I also will drink "emergency- vit- c packets" I guess most potsies don't drink... I think if you are a fainter it is a bad idea... but i even have less of a headache if I drink. Just stay hydrated!

I think my feelings are hurt.... I thought when Mayo clinic called me "pleasant" it made me special! HA-HA