My story, any similar experiences?

[hardtohavefun]

Hi everyone, I stumbled upon this forum when I was searching my symptoms a while back and now I decided to post my story/journal.

My story begins 6 months ago when I was tying my shoelaces and i suddenly started to feel dizzy and i started to lose balance and ever since that day I only have gotten worse, now I am bedridden for 70-80% of the day. if Im lucky one day passes by with minimal symptoms and almost no dizziness.

 

I have done blood tests to check my vitamin levels and I had a Vitamin-D deficiency which Im now treating with vitamin D oil

I did heart tests (ECG, ultrasound and blood pressure) everything looked normal except for my blood pressure which was a tiny bit lower than average.

 

My Symptoms:

Dizziness when i stand up/walk after a while.

60-65 Resting BPM and around 110-140 Standing/Walking BPM 

My skin and head/neck feels weird, hard to explain but something like polyester fabric. (This symptom came a bit later)

My feet are blood pooling.

Tingling/Sticking in feet and hands

When I turn my head to the left I start to get white circles and spots in my vision (This symtom came a bit later)

Shortness of breath (This symtom came a bit later)

My face looks really pale usually after I have walked or stood for some time.

 

My doctor doesn't have a clue or a guess on whats going on with me despite sending me on these tests mentioned above. I have been trying to think back on what could have caused this and I remember that I had a bad habit of cracking my neck and back, I also have constant phlegm in my throat, just a thought.  I wonder if someone who reads this experienced similar symptoms.  Right now I don't know what to do.

Thank you for reading this, have a good day.

 

 

 

 

 

 

[SammyJo]

Did your cardio suggest a tilt table test to official diagnose you? That could be something to try. I have all symptoms you listed except the white spots and phlegm.

[hardtohavefun]

Tilt table tests and POTS in general is really unheard of in my country and many doctors don't know about it. I'll ask my doctor if he can refer me to a tilt table test and see what he says, thanks for the suggestion.

I wish i could talk with a cardiologist 1 on 1,  the only time I ever met one was when my physician refered me for those heart tests and you don't really get a chance to talk because its really crowded. 

[kalamazoo]

The pooling is an uncommon symptoms of pots, but it still considered a symptom. I have severe pooling in my extremities and was told it is not dangerous. Just to kind of give you a bit of comfort, if that's possible.  

[corina]

Welcome!

I'm not sure where you are located but here's a link to DINET's physician's list, perhaps there's one you hadn't heard of!

https://www.dinet.org/physicians/

[haugr]

Welcome to the forum hardtohavefun.  That sounds like it could be what I have been dealing with.  The paleness could be explained by really high norepinephrine levels.  Are your hands and feet tingly even when lying down?  If you have access to a blood pressure machine, it would be interesting to see what your blood pressure is while you are standing when you are pale.  

[jvherenow]

I have those symptoms. You may have POTS or a different form of dysautonomia (I don't have POTS but have dysautonomia). Getting someone to diagnose you is key so you can get on medicine that may help. In the meanwhile, try hydrating with gatorade or the like...all day long and more than you think you need. Add a high salt diet on to this and see if it helps. I did this and my improvement was a key part of getting the diagnosis.