Newbie: can you guys relate to these symptoms at all?

[azara]

Hi everyone, you have a lovely community here!

This could easily become a long story, so I'll try keep it brief.  Basically, all my life I have experienced some dizziness when standing up - more than most people.  My grandmother also had these symptoms.  I thought it was normal, and it was certainly never debilitating, so I ignored it.

Fast forward to January this year.  For the past few weeks, my legs had been feeling weak and my hands had been shaky, but I brushed it off.  One morning, I stood up from the breakfast table and came very close to passing out.  I became mentally foggy and exhausted, as well as shaky and weak.  Doctors tested thyroid, vitamins etc. in blood, and eventually after I had to go to the ER for hyperventilating.  They did blood gas (whilst I was lying down) and an ECG, which were fine.  They even did a chest X-ray - also fine.  They noted my heart rate was extremely high ("are you anxious?") and sitting to standing my blood pressure barely changed.  They found no real answers though, and sent me home.  They basically said I was stressed and please could I go away now.

Four months later, I still do not feel well.  I have episodes of extreme dizziness when standing up.  Walking, or just generally being upright, turns my hands bright red, and they feel "full".  Worst is the almost constant mental fog and "hanger" headaches which extend through my neck and shoulders.  I feel like a drunk and stupid version of my former self.  How I'm still doing well at uni, I have no idea.

My vision sometimes blurs. I also experience shortness of breath, chest pain, and nausea.  I struggle to adjust to temperature changes and am frequently hot.  I feel lightheaded and drunk, have a poorer memory than I used to, and I tire very easily.  I do find lying down relieves my symptoms, but the more I lie down, the worse I feel when I next get up.  

Although I can't run due to asthma, I do walk frequently and have no problems, which seems very un-POTS-ish.  I am an avid (but pretty bad) gymnast, also with few problems except tiring easily and almost passing out when I do forwards rolls.  I do get exhausted easily from just standing still.

As no doctor could work out what was wrong, I began to research, but nothing has fit all my symptoms.  Naturally, WebMD told me I have a brain tumour, but even delving into more realistic options didn't seem to help much more.  The other day, I came across POTS, and the description is really quite accurate! 

I have a doctor's appointment on Wednesday.  As diagnosed POTS patients, do you members think my above symptoms sound enough like the condition to warrant a mention? I do not want to diagnose myself at all, but I think the realms of "normal" illness have been exhausted and I want to prompt the GP to think outside the box.

I hope you're all having a great week, and thank you for your time.

azarah

ETA: wow, this did become a long story.  Sorry about that!

[StayAtHomeMom]

Yes I would mention the POTS. I have suffered with my symptoms ( a lot of yours) for a year and a half before I found the info. I went to one cardiologist who blew me off as anxiety and smoking. And I took readings at home everyday for a month, went to another at a different clinic and showed him the data, he put me on a tilt table and it confirmed my data and now I have my diagnosis. I am working on a cause right now with my internist, but at least I have proof that I am not crazy I wish you luck and hope you find the answer. Try not to get discouraged.

[Guest KiminOrlando]

When mine first started, I could relieve my dizziness/feeling like I am going to faint issues just by starting to walk. What you are saying sounds like it could be POTS, so hopefully you get a doctor with an open mind who will consider it. 

Probably back then if they had put me on the florinef, I would have been fine for longer. Obviously there are times you have to stand still so the answer isn't, "so just start moving."

Good luck!

Kim 

[azara]

Thanks guys, I will mention it.

These problems don't impact enormously on my life - as opposed to some posters here, and testimonials that I have read - so I consider myself extremely lucky.   I have plenty of symptoms, but none of them are so serious that they severely affect my quality of life.  I attend class, get good marks, and do light exercise + gymnatics weekly, so all things considered I am extremely functional.  Inside my head though, I am anxious of what the causes could be and I'm tired of fighting with my own thoughts and body to get what should be easy things done.

What I would really like is some closure, for someone to say "here's what's wrong, look we can support this diagnosis with results" - and not to just hear that I have anxiety because before all this happened, I definitely didn't.  

[corina]

Hi azara, welcome to DINET. I would def mention the possible POTS and try to get a referral to a dysautonomia doctor!