kalamazoo

Weird, i have hyper pots too and was advised against it. I usually eat about half the recommended daily value. 

Im also hyper pots and insulin resistance and yes i have it mostly in my legs though. Some days i get it in my pointer finger or thumb etc, it varies

If your body is hypertensive i wouldnt be drinking salt water as that can elevate your bp. If i have too much salt my bp gets pretty high too especially from emotional stress

Dizzy, i used to have actual EM, so my extremeties would get red and hot to the touch. That rarely happens now its just my veins but they knly cause me pain if im hot. I used to have issues at night too and used to have to sleep with a damp towel over my legs and a fan in them so i could stay cold. It was really horrible. I'm so sorry for your daughter that sounds awful. At night time now i only sometimes get like a full feeling, so my knees feel full of blood if that makes sense. Hard to explain but then i get restless leg syndrome symptoms too.

And yes pots is hyper when your blood pressure goes high but mine isn't really affected by posture. I feel horrible regardless of I'm upright or not, my bloodpressure and heart rate don't fluctuate very much in that regard.  But they did not test my levels during my ttt.

So I was diagnosed with hyper POTS years ago, since then my symptoms have changed but I've never had low blood pressure and when I exert myself even a little bit my blood pressure gets crazy high, and I think that's what makes my heart race so much and why I get so winded. I do get the throbbing head when I stand up but I don't think it's because of low blood pressure, but high instead. I also have this very unique thing I've never found anyone else who has which is where my blood vessel dilate to insane amounts that its like my veins are one fire. They protrude out of my skin and my hands and feet and sometime face get extremely hot and flushes. I was diagnosed with erythromelelgia years ago but I don't have the same symptoms. I'm kind of going crazy the last few weeks as my symptoms have greatly been changing and now I'm in pain almost all of the time in my legs. I'm kind of not sure where to go from here. The only thing that has been consistent on my blood work is elevated c reactive protein which indicated inflammation somewhere, but they don't know where. I'm half venting and half looking for advice on what I should do =/

I have something similar, think mine is caused by my GERD though which is common because of the vagus nerve simulation. If you get a lot of indigestion or stomach issues nigjt be worth looking into. 

I've been taking propranolol for about 3 years, i take it every few days 30mg once a day when I need it or when I know I'm going to be anxious. My BP has always been normal if not perfect. Until the last 6 months my blood pressure has been elevated, so I started taking more pronranolol thinking it could lower it, seems that it just kept getting higher. I was in the ER the other day because my BP was 155/105, I know thats' not hypertensive crisis but for someone with normal BP I was worried. They said everything was fine, well since then I stopped taking my propranolol and my blood pressure is back down to 115/80 like it has been. I'm so confused and now I'm scared to even take my propranolol which was kind of my life line when I was anxious. Anyone experienced anything similar?

Have you had any kind of brain mri or ct?

I relate to everything you said katy. Im EXHAUSTED from about 2 hrs after i wake up for the next 6 or so, then i get a surge of adrenaline around midnight. Its horrible

I have bad insomnia as well. Didnt fall asleep until 7 am last night. But i also have a 1.5cm cyst in my pineal gland which also may contribute to it. Wither way im exhausted during the day and awake at night time

When your veins are visible and prominent it ususally indicates vasodilation. Which is when they expand when you're hot or anxious. I personally have "flares" when im hot and my veins protrude, bulge and hurt. The vasodilation causes my bp and heart rate to freak out. If you get cold your veins shoild vasoconstrict and become less visible. Maybe take a shower and change the temp to see. Sometimes though the anxiety of health issues makes us more aware of stuff that was already there. Could be normal and you just noticed but i dont think there's any reason why your veins would be more prominent except something causing vasodilation. But your skin would be warmer and redder and maybe flushed too. In my experience and research anyways.

I had this too when i first started getting "sick", turns out i had extremely low blood sugar and was having rebound hypoglycemia. Kind of random but might be worth checking out.

The way the medication works is different which is why I opted away from ivabradine. Propranolol works with adrenaline and ivabradine works with the heart (from my understanding) Do you have reynauds phenomenon by chance? I know that's common with hypo or normal pots iirc.

I do have hyper pots, and yes it does help me. I also have a lot of anxiety and it curves it a lot. I can definitely feel the difference. It doesn't necessarily lower my heart rate a lot but I feel it keeps the spikes under control. I get less pounding in my head too. I have a lot of pooling issues in my hands and feet too, especially when I'm hot.

No, I decided against it, my blood pressure ranges a lot and get fairly elevated. 140/100ish, so I didn't feel a medication that would raise that would be good for me. I have started taking my propranolol 3x a day now though instead of 1

I was extremely anxious during mine too, i think it's expected and somehow factored in because they didn't need to alter or redo it

I'm overly paranoid about being allergic to things but I'm curious if anyone has ever used an epi pen and how it affected your POTS? My allergist told me I couldn't take my beta blocker for my allergy testing in case they needed to administer an epi pen.

My vision has been rapidly getting worse, I used to have perfect vision, but within the last few years my far sightedness has just gone to poop. I know it's not glaucoma, but I wonder if my POTS is related to my vision issues, I do also have a 14 mm pineal cyst too though, who knows. 

I am also obsessed with tea, i drink it all day but i found out i cant use honey anymore, what do you sweeten your tea with? And I'll have to grab some hibiscus tea, that's the only kind i don't drink right now. 

Monkey. What kind of magnesium drink do you drink? I was seriously considering taking some fish oil as well because of my high triglycerides cause by my pcos & insulin resistance but ive been vegan for so long im really not sure. How come you don't eat legumes? They're a big part of my diet

It's amazing how medication can affect us so much. I'm sorry this bothered you =/ I hope they can help you another way

Make sure you let your doctor know about your health issue. And u just recently had kidney stone surger and i have pots along with several other issues. I was fine, let my doctor know everything and surgery went well. Jist never get any type of local anesthetic with epinephrine as it may bother your heart like it did to me

Ask for copies of your records, of EVERYTHING and use the internet to help you. It'll open your eyes, but may also make you anxious. And I don't mean this as any type of doctor recommendation, I just mean this is what I would and have done several times. Doctors have a million patients and it's easy to get pushed aside. I analyze my own labs all the time. It can be eye opening to different results and might give you some answers. But never take anything without doctor's word as concrete. Just get your own results and see what you can find. 

I'm either too hot or too cold. I have a heated blanket and sometimes i turn on my blow dryer under the covers haha. I never feel "normal" temperature wise

Was disagnosed today with polycycstic ovarian syndrome and insulin resistance. My insulin levels were off the charts with a normal range of 2-26 (forgot the unit) and mine was at 140. This explains so many of my symptoms though. Do any of you have issues with glucose/insulin or hormone imbalances? I'm going to be put on metformin 

I have a doctor who helps and is open to new information I find, but she's also just a Nurse Practitioner.  Her knowledge is limited, but she's willing to help, more than most doctors I've found. I wouldn't say that I even have a "root cause", I just think my body is a mess. My symptoms were severely aggravated when I was about 17 though and I was bulimic, so I know I worsened my own issues. Prior to that I had issues and my whole life I always got winded very easily and have had a high HR. Autoimmune type disease run in my family and my moms side is pretty unhealthy with cancers and such. I think my mom has symptoms of dysautonomia as well but she doesn't care to get tested. I think some people may have a root cause, but I also think that the body is intricate enough that sometimes thing go wrong without any major cause. And I gave into how much rest I needed. I sleep about 10 hours a night, I don't nap though, that way I can fall asleep later. I NEED at least 10 hours to function, I don't do morning apts or classes and I make sure I have time during the day to sit down and take a moment to relax. I basically have the same story though, I was on Yaz I think it was called, don't know if there was any correlation but my symptoms did get worse around then. I was labeled with panic attacks for years too and would go to the ER several times a month, I finally found a pediatrician who helped me but it still took years to get my actual disagnosis. I think with a disease like POTS we might always be searching for the cause, even now I'm going to UW to their autonomic testing center. Hopefully they can find maybe some kind of trigger, maybe hormonal or something I'm not sure because the entire community seems to have a lot of similar stories but also very different ones as well.