Cardiologist Today...the verdict is in!

[Guest]

I haven't been on here for a while.  I've been really unwell.  It's looking like I have a healthy dose of MCAS too, but I won't get answers until I see a hematologist in January.  

Anyways, a neurologist earlier this year recorded my laying/standing heart rate..it went up 42 bpm within 2 minutes of standing, even though I'm on florineff and metaprolol.  He said he thought it was POTS or a POTS type condition and recommended my gp send me to a specific cardiologist for a tilt table test.  I saw the cardiologist today. 

I had a surprise stress test (almost did me in, but I made it).  When I saw the cardiologist we talked about my symptoms and history.  He took my heart rate laying down then standing, and crouching then immediately after standing. 

Then he told me that even though I was referred for a tilt table test, he isn't going to do one.  He said it is so obvious that I have a legitimate issue.  He said at this point, the tilt table would simply give me a label.  He said whether what I have is called Orthostatic Intolerance or something similar (or both) is irrelevant, because we know it's happening and can treat it.  

He said him and I are going to become good friends, because treatment is not quick.  

He told me to start taking the salt tabs marathon runners take, drink Gatorade x 4 every day (I also have an ileostomy, so fluid loss is a concern), get a stress ball and use it all the time and fidget with my feet (he said this will make a difference over time in the amount of fluid that stays in my hands and lower legs), and he said to stand with my back leaning against a wall for 15-20 min 3-4 times a week.  If I feel like I'm going to pass out, lay down immediately and call it a day.  

In 2-3 months if I haven't improved enough he's going to add midodrine and consider replacing metarpolol with something else. 

He told me that he has had great success eliminating symptoms with this protocol.  He also told me to start laying down immediately when I feel my symptoms getting worse.  He said trying to tough it out can actually make things worse in the long run.  

I'm so glad he's taking me seriously!  I'm not sold on the idea that he can eliminate my POTS type symptoms, but time will tell, and I'm willing to try anything, and I'm sure my symptoms will be better than they are now!

[DizzyGirls]

So glad to hear that someone listened!  Hey, there are doctors out there like that.  I hope you get some improvement in your symptoms.  It's a long haul, that's for sure!  My oldest daughter takes Thermotabs, but my youngest doesn't need to add salt - she eats enough in her meals (that's an understatement!)  The salt works.  My oldest likes the electrolyte water and they both like Vitamin Water.  Sometimes the Vitamin Water is good because it has some sugar AND all the electrolytes.  Be patient, it is a ton of trial and error.  Mostly error, until you get the right one.  Hope you feel better soon!

[DoozlyGirl]

Hi.  Congratulations on finding some answers.  I haven't been on this site for a long time, but saw your post come through in my email.  I have been managing OI for 7 years and MCAS for 4 1/2 years and a few things popped in my head when I read your post.   Take notice if you react to the Gatorade, as many with MCAS degranulate/react to the dyes and preservatives.  Also many with MCAS can't tolerate beta blockers, and betas are contraindicated in patients who carry epi for anaphylaxis.  If betas are absolutely necessary, you may need to carry glucagon to overcome the effects of the betas in the event you need to epi.  In my own case, I have found managing my MCAS eliminates my OI symptoms, so my mast cell regimen and avoidance/figuring out my triggers really allowed me to get my life back. 

Best wishes on this part of your health journey. 

      

[corina]

That's really good news Draven! Hope you doctor will be able to get you "on your feet" onwards and upwards!