Pots, Neurocardiogenic Syncope, Cfs

[EricCartman]

Hello everyone, new to the forum, hope to get some answers!

I have had difficulty getting a diagnosis.

Have had 20 years of what doctors generally called CFS, with the following symptoms:

• Intolerance of exercise
• Brain fog and cognitive impairment
• severe fatigue
• frequent urination
• tremors (onset recently)
• upset stomach and diahrrea
• muscle and general body pain
• chemical and EMF sensitivity

So in November 2014 my neurologist took my heart rate standing and lying down and said I had POTS because my heart rate increased.

Then an electrophysiologist a few months later did a Tilt Table study where I started screaming and passing out after receiving a small amount of nitroglycerin. She said my heart rate never increased, so she diagnosed me with neurocardiogenic syncope.

While I understand the forum rules do not allow members to diagnose each other, I am wondering if anyone has had a similar experience with these varied symptoms and these diagnoses.

[Katybug]

Hi! Both of my TTT showed POTS, so that's my official diagnosis. But my second ttt did show 2 split second severe drops in my bp. I also have extremely low bp on occasion, my lowest recorded was in a doctor's office at 62/45. That was an unpleasant day. I also have had very narrow pulse pressures recorded at my neurologist's office (16 pts sitting which dropped immediately to 10 pts upon standing.) I used to generally have low bp all the time but recently it has been a little high. I guess, after writing this out, I'm really all over the board.

[Katybug]

As an aside, now that I'm diagnosed, I don't regularly take my vitals at home because I don't want to obsess over the numbers, so I may have these variations more often than I know.

[TCP]

Hello and welcome!

I had ME after Glandular Fever or what was called ME/CFS as there was no other explanation for it 31 years ago. I now think it was POTS as the symptoms are pretty much identical. I found out last year that I was born with Ehlers-Danlos and have joint hypermobility. These conditions are linked. POTS/autonomic dysfunction became worse 8 years ago when the BP and HR issues became a lot worse.

[EricCartman]

Is chronic low blood pressure a symptom of POTS?

Can someone have POTS if their heart rate never increases as it typically does with POTS patients?

[Katybug]

POTS is one form of dysautonomia. To be diagnosed with POTS, it requires your HR to increase from supine to standing at least 30 bpm within 10 minutes of standing or your HR exceeds 120 bpm within 10 minutes of standing. Some people with POTS have cchronic low bp but others can actually have high bp. BP readings are not part of the POTS diagnosis. Other forms of dysautonomia such as Neurocardiogenic Syncope or orthostatic hypotension would be possible diagnoses that would relate to BP. You can have more than one type of dysautonomia such as POTS and NCS.

[Kkb1216]

Hi,

My HUTT said I didn't have POTS because my heart rate started in the 130's and only went up to the 160's while tilted. My blood pressure sunk like a anvil in a swimming pool. I had no idea I was ever experiencing that on an everyday basis. I just knew I was sick.

So officially I have Neurally Mediated Syncope (an umbrella that NCS fits under now I think). I have a high heart rate no matter what happens, and my blood pressure falls when I sit or stand upright for too long. For fun, the universe decided I needed to be a sweaty mess, and have GI trouble too, because the blacking out wasn't enough Because my blood pressure starts normal and then drops, I have cognitive issues because my brain is literally not getting enough juice to swim in.

To further confuse things, my current neurologist disagrees with the electrophysiologist and says I have both POTS and NMS. He also admits he's never treated anyone with either, so I have an appointment to see a specialist this summer.

So really, in answer to your question, you can have dysautonomia that doesn't look exactly like anyone else's. And even Doctor's can be all over the map. I know it's super frustrating. Hang in there and keep pushing the subject matter experts for more information.

Also, I apologize for all the pool and water references. I've been looking for a place that does water therapy this week.

Good Luck,

-K

[TCP]

Kkb1216

You sound just like me. Your symptoms match mine! I am having a hard time trying to get a diagnosis of anything. My heart is pumping fast all of the time and I black out and get severe gastric issues and feel very unwell. My brain isn't functioning as it should and it's all very unsettling and I am getting frustrated trying to get doctors to take in what I am telling them.