blinkofani

Honestly, I think sleep studies are the most ridiculous test ever for people who have sleep difficulties. My issue is not with falling asleep but staying asleep. They put the most disgusting goo in your hair and stick numerous wires to your head, face, chest, arms and legs. Your face is literally covered in tape and you also have a strap across your chest to measure breathing. I am shocked when people actually say they slept enough for any results to be valid. For me, not only was it the unbelievably frustrating attempting to fall asleep and stay asleep but I also had a screaming toddler next door to me. I will never ever agree to one again. It was a complete waste of time as I slept WORSE than I typically do at home.

atenolol has been amazing for me. i'm sensitive to meds, too but have been taking 25mg before bed and it has drastically improved my quality of life. my HR was going up to 200 whenever i stood up and would barely go down unless i sat. now it still goes up quite a bit but no where NEAR as high as before. it is much more bareable. i was afraid to take it at first because i have occasional bradycardia but it has not made that any worse. it has lowered my overall BP which was quite high before. (although it does still lower after standing for a little while)

atenolol has been a life saver for me! i take 25mg before bed. it has lowered my standing HR and BP (it still fluctuates but isn't as high). my HR was going up to 200 when i was standing before the atenolol. now that i'm on it my HR still goes up quite a bit to maybe 130 tops (not that high all the time though) but it is a DRASTIC improvement in my quality of life. i was afraid to take it at first because i get bradycardia sometimes and i was afraid it would make that worse but it hasn't.

i know exactly what you're feeling and my cardiologist said it isn't dangerous. he explained it by saying that the heart fills up with blood then releases in between beats. there are times when the heart takes longer to fill up (the pause) and then BAM you get a strong beat when it finally releases. he says this happens to everyone at least a couple times in their life but for some people it can happen very often. for a few days last week this was happening constantly all day and caused me to cough every time.

hmmm..i actually don't think IST technically goes with pots. i know that several people with pots can also have IST but diagnostically, they don't go together

this is totally just a guess...but maybe it's because the type of dysautonomia that involves heart rate is pots. with pots, typically the tachycardia that is experienced is regular, sinus tachycardia and it occurs on minor exersion or with postural changes. IST is different in that it happens at "innapropriate" times such as when just sitting still, which does not go along with typical pots. i'm guessing that IST is an electrical issue with the heart wheras POTS is a neurological/cardio disorder.

you're not thread jacking! i haven't read or heard anything about pots patients having cholesterol issues. i think mine is partly genetic however i do think there must be something else going on for it to be so high at my age. i'm only 25 and have had high cholesterol since my teens although it is at its highest now. i have been a dancer my whole life and prior to pots (about 4 years ago) was in the best shape ever. i don't have the best diet although it certainly could be worse. i'm seeing a nutritionist next week although i am so beyond picky when it comes to food so i doubt it'll help. i'm on simvistatin for the cholesterol now because my doctor worries since heart disease runs in my family.

I am about 1 1/2hrs away from boston, my neuro is at boston medical center. I actually just got off the phone with my kidney specialist that I saw for the first time a couple weeks ago and he says I have SIADH (syndrome of innapropriate antidiuretic hormone hypersecretion). He said my urine osmolallity was extremely high for the 3rd time and my sodium mildly low. I see him again in a few weeks to discuss some other testing, potentially a catscan.

I actually have high BP and am on atenolol to control it along with the tachycardia although my BP will be low sometimes when laying down or after standing for a little while

I have never passed out on a day-to-day basis but I did pass out during my tilt test. I completely lost my BP (it was undetectable) after just a few minutes so they immediately lowered me back down and already had the IV in ready for fluids.

I wouldn't say I have a pots specialist but I do have an electrophysiologist that is familiar with pots and I have a neurologist that I've seen once who is also familiar with it.

I don't faint but start to feel pretty woozy after standing for a while and lights in stores make it worse. When my tachycardia was at its worse I got a prescription for a walker with a seat and wheels and my insurance covered most of the cost. I'm 25 years old and it is certainly strange to use out in public with people looking at you. It did help me though because I always had somewhere to sit right away if I needed to. I also have a handicap placard so that I don't waste all of my energy getting IN to the store before even starting to walk around.

Thank you!! My doctor told me that my urine was too highly concentrated (and I'm pretty sure concentration and osmolality are the same, right?) I read that the "average" level should be between 300-900. Maybe there was another test that came back off that she's referring to, who knows. High cholesterol certainly runs in my family. It's been high for about 9 years, but certainly never this high. I have a family history of heart disease so my doctor started me on a low dose of simvistatin. I'll be retesting my levels at the end of May. I'll also be seeing a nutritionist in a few weeks to help me find a happy medium between getting lots of sodium but low fat foods (I am an EXTREMELY picky eater so this person will have their work cut out for them! lol) My serum creatinine was 1.0 and urine creatinine was 297 the first time and 364 the second time it was tested (not sure what the normal level for that is). Unfortunately, my doctor didn't specify which lab results lead her to refer me to the kidney doctor, all she said was my sodium was low and had highly concentrated urine. Oh well, can't hurt to see yet another specialist

Lab results always confuse the heck out of me! I recently got some results back that show very high urine osmolality, very high cholesterol, low urine sodium, and low vitamin d. It's weird because I read about people who pee a lot which means their osmolality/concentration would be low. I really have no idea how much I actually pee throughout the day but I'm guessing it's not enough. I drink oodles of water so I know I can't technically be dehydrated. Here are my numbers: Serum Osmolality: 289 (290-300) Urine Osmolality: 991 mOSM/KG Cholesterol: 276 (0-199) LDL: 194 Urine Sodium Random: 62 meQ/L Vitamin D: 19.9 (30-100 ng/ml) These numbers lead my doctor to refer me to a nephrologist so I'll be seeing him on the 19th. Does anyone else have numbers like these? Or anyone have diagnosed kidney issues?

My Vitamin D levels were 19.9 and my doctor had me start taking 4,000 units/day. This was over a month ago and I haven't noticed any difference in energy levels. Some days are better than others still. Not sure when my doctor plans on retesting me