icesktr189

I have this too almost daily and do not have seizures ( I was tested). I think its just from low blood pressure because when I lay down for awhile it seems to go away... but it can be so annoying when I am trying to read something cant!

My cardio told me OI was just a different name than OH? Most reports I have read used them interchangibly (sp?)

Technically the my body does better in the changing seasons because its more of a decent temp, but then my allergies really start going. Then summer comes with the 115 degree heats and the winters I dont do well, so I never really catch a break. Summer is my best though because I just stay in the AC all summer.

Well since the diagnosis of POTS is an increase of 30 bpm when standing, bp really has no factor in it, it just varies why each person has the increase. Some high have NE levels that contribute to it...ect. Mine hr has been above 200 bpm so I really doubt that because I have OI that I dont have POTS lol. Obviously when my bp gets more controlled, my hr does better because my body doesnt need to compensate as much, but I have had decent reading of bp and horrible hr's. Its just a wonky nervous system

I think its the drastic change of weather also. In AZ I literally used the Ac one day and the heater the next.. the temps are crazy over here. It was hot today and I needed the AC in the car, when just yesterday it was so cold that I could only stay at the park with my daughter for a couple mins.

OI= Orthostatic Intolerance which is the same thing as Orthostatic Hypotension. I have both POTS and OI. Because my blood pressure drops when I stand, my heart rate has to increase dramatically to keep up. Others dont have the drop, but still have the increase and then you have others that have bps that go high upon standing. Its just all a part of dysatuonomia. You can for sure have both POTS and OI (my cardiologist diagnosed me with both)

For me, when my POTS was under control a couple years ago, I could take pretty much any med and not have issues..even the Z pack which I had a horrible time with a couple months ago. Now I am super sensitive.

Me too... I feel terrible in the winter..I am in a huge flair right now just as temps in AZ went cold. I wont feel better until March when it warms up. I have no clue why this happens, but my dizziness, fatigue, and brain fog are terrible right now.

Yeah I would wait too! But that would kind of stink if your symptoms increased during the holidays

You eventually get used to the increase and no longer feel that much... there is no harm in trying it. The worst that can happen is an increase in POTS symptoms for a bit and insomnia

4 years for me In Janurary

klonopin for really bad days and lots of salt and water plus rest. however, I cant because I have a toddler, so I just go around randomly crying and feeling depressed...it stinks. walks help too just dont over due it. also realizing your not crazy, but dealing with a very crazy illness.

I get this all the time and its from adrenaline. When you walk or move around it gets used up...adrenaline cab make you cry, feel depressed, ect.

Midodrine, compression stalkings and TONS of water before I get up. Havey you tried SSRS? Also, I cant take midodrine if I have already got up. It has to be before I get out of bed or my bp will drop and then increase with midodrine and i will get a migraine from the fluctations.

The well being feeling is the increase of endorphins Its completely normal!

Also, when I took BB, it didnt NOT affect my breathing whatsoever, just my bp (it lowered it even more). That was when I was having the shortness of breath/chest pains.

Rich- I too used to have extreme shortness of breathe and chest pains. I had 2 or 3 ECHOS that suggested pulmonary hypertension.. to say at the least, I freaked out. The only way they can determine it, is a heart cath. I waited one month and got another ECHO done which showed no PH. A couple months later the chest pains and out of breathe feeling stopped and then the dizziness and other POTS symptoms set in. If you want to see about PH, they told me you need 2 positve ECHOS then they will do a heart cath, but it has to be a certain pressure on the ECHO. (i forgot what it was )

My cardio wants me to do another and I am thinking of video taping it (if they let me) and sending it in to my disability examiner...do you think that would help my case? Sorry if I took over the post!

My twin brothers are only 15 months younger than me (they just turned 21 and im 22) and they are perfectly healthy with no symptoms of POTS. Actually one is in the Navy and the other runs like crazy. My mom has POTS though, and my grandma had symptoms. It only affected the women of our family... i really hope my daughter does not get it :/

I know we all cant tolerate heat, but my body always freaks out during winter time. I actually do better in summer because I stay cool in my 75 degree house, but even with the heat on now, I feel absolutely terrible. My brain fog increases and bp drops. I have no clue why this happens EVERY single winter for the past 4 years. It stinks. I know exactly when I will flair just by looking at the weather decrease. Its more than weather changes, because this will happen all the way until March. The only thing I can think of is that my body is putting out so much energy to get warm... but I am in my heated house a lot, so that theory does not always work.

I want to try melatonin, but I hate starting new supplements because they always get me extremes (makes to too tired or jittery feelings). Right now I am focusing on getting my bp up (why I have the surges so bad right now) but its so hard because this weather change really ramps up my POTS!

I think I have low flow POTS but I havent been tested. Definently a lot of low bp issues and high hrs, but mine does not go high on standing. It really didnt effect my POTS in a good or bad way, just gave me more energy because I think I was sleeping better at night. Ill let you know how it goes when I start it up again!

I cant handle Robittusin either... gives me extreme surges :/

My experience was bad.As soon as they lifted me up I knew it would be. I started throwing up and crying, then lost my hearing and mumbling stuff. I was begging them to put me down and they brought in a crash cart because my bp was around 50/20. somehow I was still conscious, but I had a seizure and they put me down. I think I was only up 6 mins or so. everything went back to normal after and I didnt have to take any meds. it was definently not fun, but it was needed and very quick for me. sorry if I scared you, but I wish I would have known because I had no clue what to expect and it freaked me out. good luck!

Yup I have POTS and OI. My OI symptoms are way worse than the actual POTS (heart racing, ect)