Feeling Very Confused

[Zap]

I've been frustrated lately, as there hasn't been much progress since my "dysautonomia" diagnosis. During my TTT, I apparently did not meet the criteria for POTS, but my QSART and sweat tests were abnormal.

I recently discovered the iPhone app that lets you test heart rate on the fly - this is fascinating to me. I've been having, at least to me, what feels like a fast heart rate/tachycardia.

My seated heart rate is in the high 80's to low 90's. Standing, it fluctuates around 100 give or take (usually a bit higher). Activity seems to drive it even higher. The worse this is, the worse my sweating seems to get, too. At least right now, it feels like pounding in my chest and I am all worked up and couldn't sleep if I wanted to.

When I asked my autonomic neuro, what else could be done (aside from the 10 mg Nortriptyline, which is keeping my migraines at bay so far) he suggested Topamax or Propranolol. I'm so confused - isn't this a similar method to how POTS is generally treated? Is there a reason that I'm not being officially diagnosd with POTS? I'm not doing well enough at all to go back to work yet, but I'm so sick of waiting for something to change, as I've been off work for a year now. I'm starting to wonder what I should do next.

Also, I've been doing reading about Mitral Valve issues again - are EKG's a common test that is done with dysautonomia, and do they generally find anything?

[firewatcher]

When I was tested for Mitral Valve Prolapse, it was an exercise stress test with an echocardiogram to image the heart. I had no regurgitation and the valves all closed, but the doc noted an unusually high HR and contraction strength in response to exercise. You might check your orthostatics first thing in the morning for a couple mornings, just to confirm/refute the TTT. EKG's are to see trends in the heart's firing, to see if there is an electrical glitch or arrhythmia.

Waiting to get better stinks...let us hope relief comes soon!

[GingerA]

I have MVP and it was diagnosed with an echocardiogram. However, even the cardio doc that I see doesn't think that it is a big deal. So I don't know if the docs just don't know enough about POTS or if they just try to find every detail about a person before diagnosis. (I am betting on their lack of info). Sorry you are feeling frustrated. I went through the same thing and finally had a melt down in the doctor's office. He sent me to Mayo to PROVE to me that it was all in my head.

It took the docs at Mayo less than 5 minutes to tell me what was wrong. Then they did tests to back it up.

So have a melt down if you have to! Stress to the doc that you know your body and something else is going on that he is not addressing. I hope you get some results.

[Clairefmartin]

You can have dysautonomia with tachycardia and not POTS - the POTS criteria just means 30 beats per minute when you stand within 10 minutes. They sometimes also diagnose "Orthostatic Intolerance" if you don't quite meet the criteria. Either way, POTS and OI are both caused by something - and if your QSART was abnormal that suggests (according to the literature, I'm not a doctor or trying to diagnose you) neuropathy of some kind. The "fun" thing with neuropathy is that it's like POTS - you have to find out what is attacking your nerves. I wrote a big long blog post about it here with a list of possible causes and links to papers on them. I hope you find a doctor that will dig deeper - the abnormal sweating is a big red flag for neuropathy. Best of luck!

[yogini]

What is your BP during all of this. A seated HR in the 90s is very high. Mine used to do this when I first got POTS, but no more. An increase of 80s/90s to just 100 is not that much of a difference. Have you looked into inappropriate sinus tachycardia, that is tachycardia without the positional change required for POTS. Also,I would measure pulse manually, just to make sure your iPhone app isn't screwy.

[Zap]

Many thanks to all of you for the replies!

firewatcher - Mornings are my sworn enemy, especially since they were when probably 80% of my migraines were happening. My symptoms were ALWAYS worst in the morning, and eating always made them worse, probably because of the blood pooling in the abdomen after eating.

Ginger - WOW! Part of me feels that I could almost be in your story, being sent to Mayo to prove I'm nuts only to come back with the experts validating me. I've had a few melt-downs, and I think part of that is why I've even had any dysautonomia testing at all. Sadly, I think that I'm either trying to downplay my symptoms subconsciously or they aren't being taken for as severe as they are, and I may yet travel to Mayo. I still think there are one or more things hiding yet. We've made some progress, but I know things could be better.

Cfmartin - See, I wasn't even dx'd with tachycardia - that is where I'm a bit confused. Maybe I was just having a really good moment during the TTT, but at the time my one leg went numb and I was having some symptoms, however my test listed me as asymptomatic, which I don't fully agree with.

yogini - Thanks for the confirmation. I tested my blood pressure at one of the machines at the store the other day. I tried to sit for a minute and be calm. 123/84 with a pulse of 90. I have not looked into inappropriate sinus tachycardia, but this seems like a very appropriate thing to check further. I do sincerely believe that the anxiety, sweating, and adrenaline response is probably at least mediated by something underlying that has yet to be found. I also wonder if I'm having a reaction to the Pamelor, which has been keeping 95% of my migraines away, as well as suppressing the constant auras I was having. The iPhone app is surprisingly quite accurate, as I've verified it when tested by other means (by hand, BP machines).

At least thus far, I feel that my treatment has been too conservative. There are many weeks to months between appointments, and very few new things tried. I'm hesitant to drugs due to my medication sensitivity, but I'm been getting restless and asking the doctors if there is anything else we can try!! This may also be a telltale sign that I should at least look into IST further - I've recently tried Eucommia bark, which is an herb that is a non-selective Beta blocker, and is being discussed elsewhere on the forum. It definitely made a very distinct change in the way I feel, at least calming the feelings in my chest and bringing a calm I haven't known in a long time. Given the high prevalence of using Betas in these various disorders, I'm not surprised at its beneficial results.

As a matter of fact, I've been talking about Betas with BOTH my neuros for months, and neither has even suggested trying them (dismissing my suggestion, if anything) until I pressed at my EKG that I'm not well enough to work yet, and I wanted to know what other options we had. At that point I was told Topamax and Propranolol might be options.

I'm just wondering at this point if it would be easier to start over at a place that handles this more often, like Mayo, and make sure all the stones get flipped over, just in case there is something else funny going on in conjunction with / in addition to the presentation of POTS like symptoms, that wouldn't normally be considered.

My inquiries about a Holter monitor, MCAS testing, etc have fallen on deaf ears thus far.

I've babbled enough for now - my racing heart wouldn't let me fall back asleep , so I went outside and pulled some weeds after last night's much needed rain, and then decided to reply here.

I've got to say that it feels nice to finally realize I'm not alone with all these crazy symptoms, and that I'm most likely just starting to find things that can help bring balance back to this insanity.

[flyingsquirrel]

I'm new here, but I have had IST for a long time.

IST is tricky to diagnose because it consists of a relatively high resting heart rate (which can still fall in the "normal" range for some people) and an inapproprate rise in heart rate to even the most minor exertion (walking, eating, etc). This is caused by overactivity/hypersensitivity of the cardiac sympathetic innervation and/or a deficiency in the cardiac parasympathetic innervation.

Tilt table tests should be negative for a diagnosis of IST, although people with IST will be hypersensitive to isoprotenonol (my last TTT they used less than 1/4 the normal dose and my HR was over 180 before they stood me up (and I was still on all my meds)).

Non selective beta blockers are the first line treatment, however such a high dose is usually required that some people cannot tolerate the side effects.

Good luck if you decide to go to Mayo...I didn't have a great experience with cardiology there. They kept wanting to treat me like a POTS patient and when my testing didn't fit the POTS profile (because I don't have POTS) they pretty much told me it was all in my head (despite years of documentation and a soild IST digagnosis.)