Akgirl

I had this a few months before I was even diagnosed with pots. I got a swallow study done. And it was normal because of course I was fine the day of the test!!!! It kind of comes and goes with me as well as most things. I have to avoid sticky foods when It happens and stretch neck out all the way when swallowing and drink lots of water with food. But the two times its flared up and gotten really bad even liquids are a challenge.

Wow!!!! How long have you used this? What about things like tachycardia, and blood pooling. This sounds awesome

It's good to know I am not the only leg waving girl out there !!!!

So my husband has discovered a HUGE help for me for tachycardia and preventing fainting and just general bad pots spells. He can always tell when I am doing bad because he said I am like a hour glass and all the blood drains from my face and lips. Along with this my feet, nose and usually my hands get really cold as well. Also depending how long I let things spiral down I usually begin to breathe different. He has observed all of this as signs that I am entering tachycardia and need to sit/lay down rest, drink, salt, meds, ect ect ect but last week we went to a restaurant and I was doing very bad and had to lay down on the hostess bench because I was fainting coming back from the restroom. I had woken back up and I was on my back and he took my legs and put them straight up in the air. He said he literally watched the color pour back to my face!! I I defiantly felt better and felt my heart rate go down and headache reside and energy come back!!! Since then I have done this when I start to feel not good. I no it sounds weird!! But I lay down on my back and whoever I am with literally holds my feet straight up in the air!! I have gone out into the public a couple of times and both times ended up on my back with feet in the air. But you know what, I didn't faint or go home and crash!!! Yes I was tired and shaky and sick but much better than normal!! its like I am giving my poor brain a blast of o2!!!

Becca, ((BIG HUGS)). I am sorry what a nightmare!! I hope you get It all sorted out...and SOON!!!! My thoughts and prayers are with you.

Good luck!! My fingers and toes are crossed

I also went to ophthalmologist today. They said I don't have high pressure ether but he said my eyes are one tiny step up from completely dry, he said they are not making tears??? He gave day drops and night gel. Also I have a potential peripheral blind spot in my rt eye?? I have to go in for more testing for that. My headache was so so so BAD from seeing him today!! He said my floaters and visual changes are not from my retina and my eye pressure was good but thought I was having migraines and needed to get off the topimax and try something else? He also thought I was over medicated. I tried explaining about dyautonomia and pots but I don't think he really knew what it was. I think he just saw that I was 31 and on a giant list of old people medication and just drew his own conclusions!! S-pot are you on a beta blocker? I am on atenolol and he said that's good as far as eye pressed is concerned. I think dr. Diana could explain that better than I could something to do with beta blocker lowering presher?? I am just so sick of weird floaty things and headaches and seeing my pulse in my eyes ect. But I am hoping that my vestibular therapy will help. I'll let you no if there's any benefit!!!

Thanks s-pot!! I will go see my eye doc! My headaches are super bad!! I am taking topamax for it but I have to keep upping my dose higher and higher to try to compat the headache. I really appreciate the tip.

Ya they are pretty harsh. I can only handle a half tablet at a time or I vomit! And even a half tablet I have to drink a bunch a water with it!!!

I get two different types of burning in my lungs and throat one is from gerd and I take omeprazal 40 mg a day for that. And the other is from tachycardia my chest and throat start burning if I stand for too long. I also got this same same feeling before I got diagnosed with pots sometimes when I would work out I would get extremely nauseated and my chest and throat would burn and hurt. With now I know that I must have been in extreme tachycardia at those times. You mentions that it sneaks up on you when you are up right. Maybe you should where a heart tracker and check your pulse when you feel the burning?

Hello, big (((((HUGS))))) When I sit or ride in the car I also have to have my legs elevated, but not in bed or not my arms ether. I can walk now also!! I only need my wheelchair if I am going long distances. But I feel your pain, I am a mom of three children and a wife as well. Being sick makes you realize how precious life is. You are so right about mothering in 90 seconds! I have pots but I fainted a lot when I was first sick I could make it a little longer than you... 120 seconds instead of 90 I have started to make a very slooooow recovery. I sure hope the best for you.

I am very fortunate and I do not have to work anymore. Although I wish so bad I was able too!! I take my meds at 10:00 and try to get out of bed by 11:00 but honestly It's usually closer to noon! If I don't get about 11-14 hrs asleep every night I literally can't function! Prior to pots I needed 9, which is still waaaay more than the average person.

Let me know what they say if you don't mind!! My vestibular therapist claimed she can fix almost all of these visual disturbances in about 3 months!! I am currently doing eye exersizes 3 times a day laying on my back. I go in once a week to to therapy.

Ashleypooh, do you know what's up with that feeling?? Why is that after a big meal I feel so icky?? I get the whole blood going to the stomach to digest thing but yeesh!! It makes me feel so foggy and I go into a yawning fit, where I can't stop. And I just kinda zone out for awhile. I keep thinking maybe its something more than just the blood in the stomach?

I also feel your pain!! I can totally relate to pretty much all your list of symptoms! I start feeling like I am just a big hypacondriac after awhile!! I must admit It feels very reassuring to read your list and see others being able to relate to all these bazaar things that go in our bodies. It's nice to know we are not alone

Do you no if the vision probs go away when discontinuing the meds.

I agree with the others!! For me personally I have to use thigh high 30-40 compression and also my legs MUST be elevated or its a no go!

Does a normal doc do this exam or do I go to a eye doctor?

Oh wow totally!! I never put the two and two together. I have been wondering what in world is going on with my vision it's gotten pretty horrible I have pressure and floaters and static and sometimes orange balls that are over whatever I am trying to see! I have asked my doctor and they just kinda star at me blankly. I am now doing vestibular and ocular therapy to try to help the vision issues and my dizziness. But maybe it's just a side effect of fludro not even my pots!!

Thanks for the tip I will ask my doc!!

I totally think you are correct racer!! I have absolutely noticed a pattern with the constipation and the urination issues going hand in hand!! I have also noticed since the Miralax my bladder has gotten way way better!! Grrr I swear I am so sick of all of this nastiness, if its not hitting you from one end it's whamming you from the other!!!

Yes I have noticed this on and off as well.

Lol!! My thoughts exactly Naomi

So this is obviously why all the halter minister and heart work up etc usually comes back normal!!

I was having a really good day today so was testing my pots with my heart rate monitor at home. It took 3 minutes for my heart to raise the required 30 beats. This is with me on all of my medication and feeling good!! So I have gathered that's pretty normal for most of us on this forum. But the strange part was I left my monitor on and just walked around went about my day, and the minute I start moving my heart rate starts going down and my tachycardia even goes away for periods of time? But then I stop and the tachycardia crashes back??? Is this normal?