Desperate for answers and help

[Kara]

I have been sick for about a year and a half. Have seen more docs than I can keep track of- many tests. All normal. I had a cardiac ablation for a fib about a year ago. Thought I would feel better..unfortunately not. It seems I've always had issues feeling dizzy when standing, and have to grab on to something to keep from fainting, but docs say I just have low BP. My question is- I have recently been testing my BPM w/ my phone. Many times, but not always it will exceed an elevation of 30 when going from lying down to standing. Does this have to stay elevated for a prolonged period of time to be considered POTS? Does this excessive elevation in BpM have to happen every time to be considered POTS? 

Thanks! 

Kara 

[SarahA33]

Welcome to the forum, kara.   I don't think there is any length of time that your HR has to stay elevated.  For a POTS diagnosis the only "time criteria" I'm aware of is that some doctors will wait 3-6 months after you've been experiencing symptoms to diagnose.  The diagnostic criteria is a HR over 120 or 30 BPM increase from sitting/supine  to standing, with the absence of orthostatic hypotension.  Sorry to hear about your a-fib, my fiancé has it and he's had two ablations. Knock on wood but the second ablation seemed to do the trick for him - he takes medicine for rhythm control but hasn't had a flair for a few years now. I wish the same for you!   Did the electrophysiologist who did your ablation tell you it could affect your POTS symptoms, or did they start post ablation?  You can do a search in the upper corner for something like ablations and pots, and read past members threads.  Wishing you well - Sarah

[Kara]

Thank you so much Sarah. I am feeling fairly sure that POTS is a good possibility for my poor health for the past year and a half, but my family fears that I am grabbing on to something out of desperation for an answer. I get a heart monitor on Monday to wear for 48 hrs and do the tilt table test on the 13th. I have had many symptoms over the past year and a half. It started with shoulder pain. I thought I may have dislocated my shoulder. Then it seemed to manifest into chest pain on my left side. Feels muscular. Sometimes goes into my neck, jaw, down left arm. I will list below other symptoms I've had since. If you or anyone else has comments or similar symptoms, I would love to hear. 

Chest pain- feels muscular - on left 

shoulder pain on left

neck pain

for about a month I was extremely sensitive to sound- now the sound sensitivity comes and goes. 

Quick shooting chest pains from time to time

Pain when I take a deep breath, seems like lung pain

a feeling of wanting to cough when I take deep breath

a feeling of pressure in my face- I have this a lot and it is very annoying 

found out I have silent reflux and a small hernia in all the testing that's been done

burning or electric sensation on the sides of my toungue 

tingling on scalp

extreme brain fog at times- can't think of certain words- sometimes the wrong word will come out. For example- yesterday I meant to say, "it was really easy" but what came out of my mouth was "it was really early" So strange!!!

 I am going to start journaling my heart rate. Last time I saw my cardiologist he took my Blood pressure and said he didn't think it was Pots b/c my blood pressure was ok and I didn't fall in the typical age perimater. I'm 41. I have had extreme dizziness when standing for the past 15 years. I don't seem to be sensitive to temperature when it's hot, but if I get cold I have trouble warming up. My hands, and feet are always cold. 

My heat rate this AM- 

laying down 73

standing- jumped around. Got up to 115, but 110 was what it seemed to be most of the time. 

As I said before, if anyone can add anything, I would really appreciate it. I would love to know if I'm going down the right path with this. 

Sincerely, 

Kara 

[BuffRockChick]

Hi Kara!  Trying lying down flat on your back for 15 minutes, then stand absolultely still for 10 minutes.  Muscle movement assists in pumping blood back, so it messes up the test.  Be careful that you're not swaying, curling your toes, tensing your butt, moving your kneecaps or other subtle fidgets.  Check your pulse at 2, 5, and 10 minutes. 

POTS doesn't have much a blood pressure change usually.  There's a subtype that blood pressure will go up with standing.  Your doctor may have mis-spoke or been unfamiliar with POTS?

I discovered mine by myself after 13 years of symptoms.  I was online looking for reasons for my fatigue, and was delightedly shocked to stumble across POTS.  Been confirmed by 2 doctors now, but still waiting for cardio workup and tilt table test. 

I also have muscular chest pain, shoulder pain, and forearm pain in some positions.  It's from being in bed a lot in a bad sleep position.  Physical therapy didn't help much, but I found instructions for trigger point release of the pectoralis minor muscle and that works for me!  Fast relief too!

[DizzyGirls]

Have you checked to see if you cervical/craniocervical instability?  Causes a lot of very strange symptoms.  Many that you listed.  Just a thought...

[haugr]

Welcome to the forum Kara!  I'm so sorry that you are dealing with this. I believe that the night sweats are unique to the hyperadrenergic subtype, and the frequent urination might indicate a RAAS dysfunction (which is one underlying cause of hyper pots).  I highly suggest tracking your blood pressure while you are learning how to manage this.