Not sure what I have?

[kjm85]

Hi all - this might be a little long lol but would appreciate any help or advice

I'm a 25yr old female and basically I've been getting a variety of symptoms for the last 2.5years and no one can figure out whats wrong with me! My main symptom is lightheadedness which is almost always present.. sometimes really bad and others days is ok. when I get it i get very tired, confused, headaches, foggy in the brain etc. It mostly will feel better if i lie down but sometimes I still even get symptoms then.

The past 6months or so I've also had heart fluttering on and off which has been scary and pain on the left side of my chest that comes and goes. My breathing in the past few months has also been a little weird.. i kind of feel like i just cant get enough air in, like im in a really humid room and need fresh air. that also comes and goes but has been more constant lately.

I have fairly low blood pressure (not alarmingly low but low all the same) but otherwise doctors cant really diagnose me with anything specific. I've also noticed that sometimes my heart rate seems really low.. but never seems really exceptionally high.. sometimes I feel like all jittery like ive overdosed on caffeine or something but I feel my heart rate and it feels ok.

I've had an MRI, seen and ENT specialist, had countless ECG's blood tests, etc... and all nothing!!

finally my dr has sent me to a cardiologist as I had a holter monitor and my heart rate was a little strange I guess.. resting rate ranged from 47-130. the cardiologist now wants me to have a stress test and tilt table test and has suggested i may have POTS.

I cant get a tilt test for another month and I guess I'm just getting a little impatient!! I just want a diagnosis, no matter what it is.. after all this time I need an answer!!! So I'm just wondering if this sounds like POTS at all??? I know everyone has different symptoms and experiences but I just wanted some advice from people that maybe have it or know of it.

It would give me great relief to know what this is.. its a horrible thing to live with and has had a big impact on my life. And I’m sick of doctors telling me its just anxiety or stress.. I know its not that.. ive tried convincing myself it was just to get an answer but deep down I know its something else. would appreciate any help!

Thank you :)

[kells75]

I am very confused about what is going on with me as well....I had cardiac heart abaltion two months ago and have not felt the same since...I am depressed and evertime i stand up my heart rate goes from 60 to 120... I have every test done by my cario and he says the surgery went great. Been to the ER and they said anxiety as well wich I already had before all this started. But i have no energy to leave my house and when I do my heart rate stays at 125 til i sit down. Anyone have any ideas?

[lucy189]

Just to show you how different every doctor's interpretations are - my 16 yo son had a holter monitor. It showed a hr range of 48-148, but that was "normal."  As far as I can tell from the diary he submitted, the 48 was when he was sitting at his computer, and the 148 was when he was sleeping. I think his symptoms are POTS, but this cardiologist says vasovagal - but his hr does not go down when he feels lightheaded.  The times he has had near syncope were not triggered, except for strenuous exercise. His echocardiogram shows three areas of minor regurgitation and "flow consistent with hyperdynamic circulation" in the left aortic arch, and I am wondering if this is worse under strenuous exercise conditions.

Good luck with your appt and I hope you get some answers. It is so hard to wait for the appts and worry/wonder what is going on.

[Sharingme2]

I am not an MD, however all of your symptoms sounds like POTS!!  I experience everything you described including the light sensitivity (photophobia).  I turn the brightness down on my puter everyday, please try doing that, it helps so much!  I relate to what you said about anxiety too.  This is not anxiety, but anxiety can be a symptom of POTS (not the cause), and anxiety can be a normal reaction to being so scared when you get these symptoms.  Problem is that anxiety/stress worsens POTS symptoms so it is really important to stay as calm as you can.  Do as much reading about POTS and talking to people who have it as you can.  You will learn so much and it should decrease your anxiety the more you understand it and the less alone you feel.  You don't have to wait until you get a diagnosis to try some of the recommendations for POTS treatment....like increasing your salt (as long as you don't have high blood pressure which it doesn't sound like you do), increasing your water, wear compression stockings, lie down when you feel you need to (don't fight the feeling and try to stay standing you will just make yourself worse).  There are lots of suggestions if you just google POTS treatment.

Keep us posted!
Shari

[kjm85]

sorry I also forgot to mention (and I have no idea if its even relevent) but often I get light sensitivity - especially when I have the bad lightheadedness.. i even have to squint when looking at a computer