Trying To Wrap My Head Around Things Before Next Pcp Visit

[iheartcats]

My PCP is nice. He's willing enough to work with the specialist I see in a couple of months. But I don't think he 'gets' how bad POTS is. I want to give him a fair chance and know he's waiting on me seeing the specialist in a couple of months.

I'm trying to exercise more, which he's pushing, and I want to, but I can only do so much. I need to start working again and we all know there's only SO MUCH energy available!

I've only been told my POTS may be post-viral. I've not been to a ANS clinic or anything. I do know Beta Blockers make me feel MUCH BETTER. If I miss a dose I feel horrible. Midodrine and Mestinon in small dosages also help a bit. Is there anything you could suggest I could look into - I'm not asking for medial advice, I know no one here can diagnose me - I'm asking if there are 'types' of POTS that these treatments would benefit more than others? He's never heard of it so the more I can print out and take to him the better, I hope.

Thank you so much.

[firewatcher]

Cat Lady,

There are several excellent articles on POTS in general. The summary by Dr. Raj in the Indian Pacing Journal is one of the most comprehensive and there is a shorter, similar article by Dr. Grubb. Do some digging on the main pages of this site and download the pdf's of articles that you think would be helpful (not too many though!) then burn them to a CD and give them to your doc. Very few of my docs will read paper at this point, so don't bother printing them out. Both articles stress the disability aspect of having POTS and how it disrupts EVERYTHING! Just don't overload him or he won't read any of them.

Postural Tachycardia Syndrome, Blair P. Grubb, Circulation 2008; 117;2814-2817

The Postural Tachycardia Syndrome (POTS): Pathophysiology, Diagnosis & Management, Satish R. Raj, Indian Pacing and Electrophysiology Journal (ISSN 0972-6292), 6(2): 84-99 (2006)

[Broken_Shell]

Hi,

I came across this article the other day and thought it was well written and gave a good overview for individuals with both medical and lay background who weren't familiar with dysautonomia...

http://www.supportdysautonomia.org/pots.html

I am glad that you have an open-minded PCP who wants to better understand your condition.

~ Broken_Shell

[potsgirl]

This is a great article. Thanks so much for posting it!

Jana

[iheartcats]

Thank you everyone. It's all very helpful.

Firewatcher: I never thought of giving a CD. I'll try that!

[erik]

Sweet! That's a new one for me "Shell"... adding it to my top top descriptions.

Maintaining activity as best you can seems commonly recommended as it seems to give better outcome on average (and can minimize some known factors that exacerbate the situation). It is inherently challenging, to say the least. Perhaps make specific mention of the activities that you have been able to perform, the ones you have pressed yourself to do, and the balancing of reserve and "bite-back" issues... all with some patience & confidence (fake it if you have to). That's an impossible balance, I know, but it's a goal Seems like the most likely thing to assure him you are making solid effort and facing physiological challenge. I'm just saying to make sure you aren't "on the defensive" from the get-go... that can come across badly and feed any misconception the doc has. In the end, it's up to him to "get it" or not... no guarantees.

Consider "couching" it a particular way (to avoid inherent issues of ego & role)... for example, instead of saying "Here are some articles I want you to read" which can in worst circumstance translate to "I think you're an incompetent doctor and even I know more than you"! I'd say something like "I came across some information that really seems to describe my situation... for example, when I push myself too hard I pay the price afterward so it seems like this exercise-intolerance thing is a big challenge. Do you have some tips to overcome it?". This informs the doc, invites positive participation, communicates that you are making effort (not depressed & helpless beyond what is inherent), etc. It can backfire and it is easier said than done, especially with a rushed primary care doc, a challenging condition, inherent frustration, fatigue, brain-fog... but anyway, something to shoot for. It's like "relationship advice" here... tough to say anything useful that isn't overly general to begin with!

As for a profile of a beta-blocker responder... they say that one who responds well to beta blockers fits the profile of having "over-active sympathetic nervous system activity". What that means precisely, whether that is "literally" the real culprit, etc. is still pretty mysterious even though some very precise mechanisms are understood to a great degree (specific "receptors" and neuro-chemical interactions, etc). Here's a quick blurb from a CFS angle for a specific beta-blocker.

Note that they point out some potential "detrimental" responders to beta-blockade too. This doesn't mean you have one thing or don't have another... one might be able to address blood-pooling with fludrocortisone/salt/water and a little midodrine and then get use from beta-blockers... They say one key rule is that treatment follows what works even if it is paradoxical or mysterious, baring clear contraindications, of course.

Sounds like overall your doc is taking a decent approach. There is a chance he is trying to encourage you but is not a good natural "coach" or communicator... it's probably just not his strong suit. I hope that he comes around and gets solidly behind your effort... it is a shame to face extra challenge in an already challenging situation. I wish you the best.