potsyturvy

I'll bring lazyboy recliners massage chairs so we can put our feet and get a massage at the same time. And I'll bring some gluten free/yeast free pizza!!

Weather changes definitely affect my POTS symptoms. I think it might have something to do with the barometric pressure? My grandpa used to have the same thing with his rheumatoid arthritis where is would get worse before and after storms. My POTS symptoms are definitely worse if there is a storm coming or if there is a sudden change in temperature or weather. So, I don't think you're families crazy because we all experience it in my family too!! lol

So, one of my fillings came out . I have been avoiding the dentist for a while now because I'm not sure how my POTS is going to handle it, but now I have to go in and get this filled. The last time I had a local anesthetic, my doctor said it did not have epinephrine in it, however, I still reacted to it. I shook for hours and had tachycardia. Then I had anxiety attacks and dizziness for literally months after. So I am absolutely dreading getting a filling!! Do any of you have any ideas on things the dentist can do so I won't have a reaction like that again? I'm terrified to go in to the dentist, but I know if I don't get it filled it's just going to make things worse

Yes! This week has been horrible! My allergies have been horrible, so I've had tons of the head pressure and dizziness. I was so worried last night that I would have too much vertigo to get up this morning, but after a cocktail of allergy meds and vicks vaporub, I was able to get up this morning I just ordered an air purifier for my room and am hoping that will help. I agree that the heat makes this way worse too but as long as I'm inside it's not horrible.

Thanks for your response Dana! They didn't wait to draw the blood. My doctor said my norepinephrine was high because I was nervous about getting my blood drawn, which isn't true. I have had my blood drawn more times than I can remember and it doesn't make me nervous. That would make more sense though that it causes NE to rise when from the puncture itself. I'm glad to know that it's normal to have lower epinephrine when NE is raised. Thanks so much for your reply!!

My last test results for plasma catecholamines showed that my Norepinephrine was 604 pg/ml (range: 80-520) and my Epinephrine was 30 (range: 10-200). Is it normal to have a lowish epinephrine reading when your norepinephrine is a little high? I really don't know, it just seemed a little stange to me. These levels were tested while I was sitting. I have not had the catecholamine tests done while doing a ttt. I was diagnosed with hypovolemic POTS but have been wondering if maybe I have hyper-POTS too?

Congrats!! That is so exciting!!

Thanks for your reply Maggie! I'm sorry your experience wasn't good! I'm nervous about going to him, because I have read some bad reviews, but I don't know where else to go! Do you have any suggestions of better doctors to go to? Did you see any other doctors when you were at Mayo? I was thinking maybe if he was my primary doctor while I was there, he could still refer me to other doctors there, but I don't know if it would really work that way. I still don't totally understand how Mayo works lol

That is ridiculous that they are labeling her as having an eating disorder! 102 lbs is not too small since she is only 5'3 and especially if you were small when you were her age too. I have had some similar problems with doctors trying to label me as having an eating disorder, although nothing that was as serious as the situation your daughter is in. I am 22 and weigh 98 lbs (which is only because I have been drinking tons of Ensure lately! I had been 93 lbs for a long time before now). However, I am 5'2, eat a healthy diet, and my parents are both small. I finally went to a nutritionist who said I shouldn't weigh more than 105 lbs because I have small bones. It sounds like your daughter probably has a fast metabolism or is small boned also. I am sorry you all are having such a difficult time with the doctors! I hope they can quit focusing on Kayleigh's weight and start focusing on her heart! Sending out prayers for Kayleigh and your family!!

Lieze, you don't sound like a dork. It makes sense to me too. I had an episode like that in January. I had my ingrown toenails removed and ended up bedridden for 3 months because my POTS symptoms were so bad! I tried to get my doctor to test my catecholamines while I was so sick, but he wouldn't do it and gave me an antidepressant instead (which helped but I'm figuring that's because my adrenaline levels were too high!). I would be very interested to hear more about this. I haven't heard of catecholamine dumping syndrome, but would like to hear more about it if anyone has any information on it.

My cholesterol was 231, triglycerides were 222, HDL was 59. Calculated LDL was 128. My doctor isn't concerned about cholesterol though (I'm 22!! and have tested high for several years now!). My HDL was in the normal range though.

Salt mainly helps my bp stay up so I don't get lightheaded. I can tell a pretty big difference if I'm having lots of gray out and near-syncope symptoms and I eat a salt packet, my bp goes up and I start to feel better. It doesn't help with any of my other symptoms though. My EP-cardio told me to eat 10 grams of salt a day and to drink 60 oz of water. I tried salt tablets for a while, but they made me really sick to my stomach. I have found that putting about 3 to 4 grams of salt in a scrambled egg in the morning helps with my salt intake and keeps me from getting sick to my stomach. I also drink tons of gatorade and put lots of salt on my food. Somewhere I read that we should eat uniodonized salt for out extra salt and only have about 2 grams of iodized salt a day so I bought some uniodonized salt. Not sure if it really matters if it has iodine or not, but I heard that large amount of iodine could possibly cause other health problems.

I have migraine auras also. I have had visual snow since I was a little kid. I have also had Migraine Associated Vertigo for about 3 years now. I have never officially been diagnosed with migraine headaches before, but I have symptoms that would make me think that I a lot of my headaches are migraines. I have heard that a lot of people with POTS have migraines too.

I am supposed to go see Dr. Cheshire in October. It is about a 20 hour drive for me to go see him, so I wanted to get other people's opinions about him before I make that much of a time and money commitment. I already have a POTS and IST diagnosis, but am currently looking for underlying causes because I have a bunch of diagnoses some of which go with POTS, but some don't really seem connected (plus some odd thyroid tests and other weird test results). I am just wondering how other people's experiences with him have gone and if he is the right person to see to look for an underlying cause or if my time would be better spent seeing someone else. Thanks!!