What info to bring to Dr?

[September]

Hello everyone, I'm new and would love some advice. I'll try to keep this short.

When I was a teenager I started having episodes of blacking out. I would feel dizzy, I'd get tunnel vision, my vision would then turn completely black, I'd lose my hearing, and I'd fall out. I hesitate to say fainting only because I never lost the ability to think while this was happening.  This most often happened if I stood still for too long. (But also when I first stood up or when I bent down to get something and stood back up)

The doctors never figured out what caused it, told me I had an irregular heartbeat and that probably had something to do with it and left it at that. A friend in the military told me I was probably locking my knees when I stood still, and that's the closest I got to any sort of answer.

I went a few years without any overly serious episodes and basically just accepted that I shouldn't stand still too long, but a recent stay in the hospital after three episodes in one day, where I still couldn't get any answers or even a hypothesis, had me deciding to look into it myself.

I found POTS. Symptoms that resonate most with me are low blood pressure (resting is about 90/45) fatigue, frequent nausea, forgetfulness and trouble focusing, insomnia and frequent awakening, shakiness/tremors (especially after adrenaline surge) excercise intolerance, constipation, and cold extremities (my friends used to call me Elsa because my hands are always freezing) and, of course, blacking out when standing up/standing still.

While I know these can all be symptoms of other illnesses and there's no guarantee it is POTS, I feel it's something I should definitely look into. However I also read that it's hard to diagnose and/or frequently misdiagnosed, and I'm worried if I try to bring it up, I'll be dismissed without the dr really looking into it.

 

Tldr: I want to look into the possibility I have POTS, and I would love any advice on how to bring it up to my doctor, and any evidence or research or anything I might should bring to get him to take it seriously.

Any and all advice is appreciated.

[Pistol]

Dear @September - I was in exactly your shoes when I first became ill. I too had had syncope when I was a teenager. When I became severely symptomatic with POTS 10 years ago No one knew what was wrong with me. Since I was a nurse I went online and fairly quickly I realized I had POTS. My PCP sent me for a TTT which showed neuro-cardiogenic syncope ( also a dysautonomia ). After seeing many more ( useless ) physicians I asked my PCP to refer me to an autonomic specialist and all is history after that ... 

What you describe sounds like dysautonomia to me. You mention low BP - does your HR increase at all upon standing? If so you may have POTS. If not - you may have neuro-cardiogenic syncope ( NCS ). With NCS you do not have to completely loose consciousness, what you describe is still considered syncope. The low BP probably causes constant fatigue, frequent nausea, forgetfulness and trouble focusing ( as you describe ).

1 hour ago, September said:

insomnia and frequent awakening, shakiness/tremors (especially after adrenaline surge) excercise intolerance, constipation, and cold extremities (my friends used to call me Elsa because my hands are always freezing) and, of course, blacking out when standing up/standing still.

These symptoms typically stem from excess adrenaline - could be a compensation effort by your ANS to counteract the low BP by releasing too much adrenaline into your system in order to raise the BP. I have Hyperadrenergic POTS and this happens to me, I also get ice cold hands and feet when this happens. 

 

1 hour ago, September said:

I want to look into the possibility I have POTS, and I would love any advice on how to bring it up to my doctor, and any evidence or research or anything I might should bring to get him to take it seriously.

There is a definite POSSIBILITY that you have POTS, and your doctor should refer you for a TTT, that confirms the diagnosis in most cases. Once you have a diagnosis usually a cardiologist ( especially EP ) might treat you - but they commonly are very underinformed about how to treat it. Therefore most of us seek help of autonomic specialists, a list here

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

PersonallyIi brought articles about POTS, highlighted all of my symptoms and showed them to my PCP. That's when he ordered a TTT.  Here is moe information on POTS that may be helpful to you: 

I would print out articles and highlight your symptoms and then bring them to your physician. If you do not have tachycardia upon standing you most likely have NCS rather than POTS - which is still dysautonomia. Both POTS and NCS are treated with increase in salt and water intake ( a lot!!!!! ), and wearing compression hose, 30-40 mm pressure recommended. Especially in your case these measures could improve your symptoms significantly. Also daily exercise and avoiding standing still helps. 

So - read up, bring articles and a list of symptoms to your PCP, take your BP and HR lying, sitting and standing ( each after 1 minute and standing also after 3 and 5 minutes ) and bring the results to your doc. Ask for orthostatic Vital signs to be taken in your docs office ( make sure they wait 1 minute after sitting up and standing up - do not let them take them right after changing positions, the body need 1 minute to adjust to position changes - therefore the abnormal response is only proven after 1 minute ). 

Also - the book "The Dysautonomia Project" is extremely helpful, you can get it at amazon. It is written for both patients and physicians and has a wealth of information for both of us. 

I hope this helps!!!! Good Luck!!!!!

[September]

First, I want to thank you for such a detailed, well thought out response!

23 minutes ago, Pistol said:

What you describe sounds like dysautonomia to me. You mention low BP - does your HR increase at all upon standing? If so you may have POTS. If not - you may have neuro-cardiogenic syncope ( NCS ).

Yes, my heart rate does increase when I stand up, as does my blood pressure. The highest my blood pressure got during my last hospital visit was 117/70 while I was standing. My heart rate spiked from resting at 94 to 138 when I stood up.

28 minutes ago, Pistol said:

There is a definite POSSIBILITY that you have POTS, and your doctor should refer you for a TTT, that confirms the diagnosis in most cases. Once you have a diagnosis usually a cardiologist ( especially EP ) might treat you - but they commonly are very underinformed about how to treat it. Therefore most of us seek help of autonomic specialists

I have an appointment on Monday with a cardiologist a few hours from my hometown to have an ECG done and heart monitoring vest put on for 48 hours. I plan to call when they open and ask about adding the TTT, since I'll already be there, but I'm not sure if they'll do it without a referral from a GP.

31 minutes ago, Pistol said:

I would print out articles and highlight your symptoms and then bring them to your physician.

This is a wonderful suggestion, and I'll definitely be trying it.

34 minutes ago, Pistol said:

Both POTS and NCS are treated with increase in salt and water intake ( a lot!!!!! ), and wearing compression hose, 30-40 mm pressure recommended. Especially in your case these measures could improve your symptoms significantly. Also daily exercise and avoiding standing still helps. 

It's funny you bring up water intake--When I was in high school (when the episodes first began) I drank a lot of dark soda, rarely any type of juice, and never water. When I moved to college, I couldn't afford sodas on my student budget, so I started drinking almost exclusively water, and a lot of it. I rarely had any episodes in this time (still a few, but not nearly the level they had been at). I continued that habit until a couple of weeks ago, when I was put on "color code" (random drug testing, for an immature mistake.) My first test came back diluted, and they warned me to stop drinking water for the six months I'm on it. So I cut water out of my diet completely, and this week has been the worst I've had with all of these symptoms since high school. Even before I turned to the internet, I told a coworker I was almost positive the lack of water was, if not causing it, definitely exacerbating it. I've read a couple articles that say sports drinks might actually be better than water, because of the added electrolytes. I'll ask my CO if they have the same problem of diluting tests when I see her next.

I'll check out all of the links you included (again, thank you!)

I'm very hopeful that a diagnosis is FINALLY in my near future.