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Does everyone notice fast heart rate?


DSM3KIDZ
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I just had a quick question. Alot of you post about fast heart rates and dizziness and bp stuff and that seems to be most of the concern. I don't experience any of that. I have mentioned in the past a twitching on my right side of chest but that's it. Probally just muscle spasm. Anyways my main symptoms are nausea, migraines, occassional brain fog, heat intolerance, and minor fatigue. Now they are debilitating at times. I'm usually pretty normal for 1 or 2 wks (if lucky) than systomatic the rest of the month. I guess my question is does this still sound like POTS? I failed TTT but didn't really feel any different during the test. Could it be wrong or could I be misdiagnosed? Could I just not be to the point of feeling heart rate bp problems and it comes on later? Or do some people just not have those specific symptoms and have symptoms like mine. I asking because alot of you have ALOT more knowledge about this stuff than I do and sometimes I can't relate to alot of the posts and feel bad not responding but I just don't have those symptoms yet and don't know how to respond. I want to support others like you have been there to support me the last few months. If it's a topic about migraines or nausea I'm the "go to girl".

If anyone understands what I'm asking send me a post

Thanks

Dayna

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Hi!

My understanding is the heart rate and bp issues are the two main key factors in diagnosing NCS and POTS. I don't know of anyone with these disorders that doesn't have some type of problem with heart rate and BP (whether it's too fast or too slow).

The symptoms you describe could be something other than NCS or POTS. You mention you have migraines and migraine could cause all the symptoms you described below.

Have you had your Thyroid checked and/or you thyroid antibodies checked? That might be causing some of your symptoms as well.

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Hi Dayna-

Some type of blood pressure &/or heart rate problems are diagnostic for OI/POTS & NMH/NCS, but that doesn't necessarily mean you need to notice them to the degree than many talk about on here. For instance when my HR goes low, I don't "feel" it...I just feel ill in otherways (until I potentially pass out). Also, when my HR is just a bit higher than normal but not crazy high, I don't notice it greatly...instead I notice other things. When I was originally diagnosed with NCS years ago, I actually felt pretty darn good day-to-day but would then simply pass out seemingly "out of the blue"...sometimes I'd feel rotten for a bit afterward but for the most part I didn't have any "feelings" of HR or BP problems until I actually hit the ground. I did however get VERY ill when I had my tilt...during & for awhile afterward.

In terms of your positive tilt, do you know what made it considered to be positive? HR up or down? BP drop? Do you ever faint? It is a bit odd to me that you didn't feel any different during the test & yet it was still positive. Was the "positive" explained to you at all?

It's good to explore & dive into what your diagnosis really is - not so much to have a name but simply to help in understanding & treatment for now & going forth. But at the same time don't worry too much about having to fit in to others' exact profiles here as we're all different. Keep asking questions...both here & also of your docs. Even if the answers you get aren't complete, you have every right to know what your docs' thoughts are & why. That will likely give you a better idea of how to proceed.

:-)melissa

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Poohbear

Thanks for responding I had all that checked and I'm okay. I think I've had about every test I could now. When the neuro checks my orthostatics over 10 minutes my heart rate and bp go crazy high and low. The neuro was actually alittle shocked at my first appointment but it didn't bring on any symptoms for me. Last time my ortostatics were normal over 10 minutes which I'm excited about but we'll see in 3 wks if the stays or if I was just having a good day.

My heart races faster at rest than a normal person but I don't feel it racing or feel dizzy or lightheaded. I'm not complaining, I know it's a good thing I just think if I'm misdiagnosed than I need to do some more searching. I failed all my Autonomic testing so I'm just confused!!!!!!!

Thanks

Dayna

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Sunfish-

Thanks also for the response. They said my bp dropped during the TTT so that's what determined it , I guess. I don't pass out. I guess when I'm systomatic I should track my hr and bp and see if that plays a part. I've never checked to see if it was causing my symptoms. I have gastroparesis (slow gastric emptying) so I thought that caused the nausea and the nutrition was causing migraines.

Thanks for responding

dayna

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Dayna,

I know all of this stuff can be confusing and frustrating.

I think I hear you saying that you don't necessarily FEEL these heart rate or bp changes but yet the neuro Dr does see these changes in you.

It may be you have a correct diagnosis and your body isn't sensitive (by that I mean you don't notice it so much) to the heart rate and BP. Sounds like you are "in-tune" to other symptoms though.

Everyone is different to what symptoms are most troubling. I've found it can be difficult getting Dr's to agree on what exact type of dysautonomia I have but it's clear to all of my Dr's that there is an autonomic dysfunction.

When you say you've "failed" the autonomic testing are you saying that nothing has shown up positive? I don't know what testing you've had done but sometimes some of the tests they run are designed to diagnose PAF and MSA which are more "extreme" forms of Dysautonomia. So, just because some of the tests have been negative may only imply you don't have these more advanced forms of dysautonomia but you may still have some form.

I hope I'm making sense! It's late and I'm getting brain fog! :)

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Hi Dayna,

Failing a TTT is not a definitive diagnosis for POTS or any autonomic disorders, There are many reasons and underlying causes for failing a TTT. I have done a lot of reading and research over the years and have had tons of tests. It took a while to actually name what I have. There are just so many symptoms and everyone doesnt have the same exact symptoms or treatment plan.

Discuss it with your doctor. I hope you have a good one. Get a good work up. Have you had MRI's, blood tests etc...? My doc took the approach of ruling out many many things. I know i dont have a lot of things. I guess thats good.

There are also many other illnesses and conditions that have similar symnptoms to autonomic disorders and there are also several different autonomic disorders.

I look back now, knowing I have NMH and POTS and I realize i have had it for years. The symptoms years ago were not as regular or intense. I had low bp, urinary retention, headaches, nausea, would pass out occaisionally (just to freak out my husband according to him). But now I guess its taken a toll on my body or maybe my lifestyle (high stress job, overtime, training horses, diet etc...) made my disorder worse.

Who knows. I take one day at a time right now. I know a lot of us here are fustrated with our limitaions. Totally sick of doctors and tests and meds. Who knows why we are on this path. The best we can do is deal with it any way we can and support eachother.

Peace

Janine

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Poohbear-

I just wanted to say I failed all the autonomic testing -TTT, blowing thing, and sweat test. Meaning I didn't pass. I don't sweat and the bp dropped on the ttt and blowing thing. So they say I have autonomic neuropathy- autonomic dysfunction- same thing.

Thanks for your imput. It helps me figure this all out alittle bit. The crazy thing is we'll probally never figure any of this out. We are all probally the same in having an autonomic dysfunction but different in our symptoms :):D:P:D;):D

I'll let you rest now,

Thanks Again

Dayna

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Dayna,

I don't necessarily feel my changes in HR or BP. I can feel most of the times when I have a fast HR, but sometimes I can't even tell that. And I don't feel the arrythmias, PVCs, etc. the way others on the board do, even though I know I get them because they've shown up on my tests.

Most of the time when I have symptoms (nausea, lightheadedness, headache, etc.), I am tachy. But sometimes I also get these same symptoms even when my BP and HR are "normal." My docs have told me these are all part of POTS, even at times when my HR and BP are normal. It sounds like you do have dysautonomia, so this could be the same for you. But if you think you may have something else, I would keep investigating.

When I first got POTS, it helped to wear a Polar heart rate watch so I could press a button and see my HR right away when I was having symptoms and also to check my BP a few times a day. I would write this all down, which also helped. After a while, I didn't need to do this anymore.

Hope this helps.

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