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Suds3630

Dysphagia

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Hello, this is my first post. I've been diagnosed with orthostatic hypotension/neurocardogenic syncope/autonomic failure by my cardiologist. Over the last year I have developed tremors and dysphagia, so now my neurologist thinks I'm presenting as early Parkinson's? I'm wondering how many members here also have tremors and difficulty swallowing?

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Hi Suds, welcome to the forum! I have difficulty swallowing though not on a permanent base, it comes and goes. Hope you will find the answers you need here!

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I've been struggling with dysphasia on and off for the past year. It comes for a while, leaves, comes back etc. I have occasional small tremors that also come and go.

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Thanks for your responses. My neurologist feels its a dysautonomia just not sure exactly which one. He says as time goes on, it will become more apparent and because of health insurance policies perhaps I don't want an official diagnosis. I have a very difficult time standing, I feel my quality of life has so diminished. I sold my motorcycle, I quit playing golf, if it is warm outside I can't push my granddaughter on the swings, shopping is difficult if I have to stand in line, we sold our ski boat because of heat intolerance and replaced it with a pontoon boat with a giant shade cover.

I'm now wondering if its POTS, since going off my beta blockers ( neurologist want me off for a few months so I can exercise). I kept telling him cardio exercise makes me sick, he thinks its the beta blockers?) my heart rate goes from 56 lying down, to 152 standing up, but then settles down after a few minutes, but then my blood pressure falls after 4-5 minutes and I have to sit down or ill faint.

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I have also been struggling with intermittent dysphagia and tremors. I actually have a prescription for a liquid meal substitute when I'm going through a phase when I have a really difficult time swallowing anything, even fluids...

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My neurologist doesn't think my swallowing problem is related to the POTS or the neuropathy, but I'm thinking isn't this an ANS function?

I'm sorry you're having such a hard time Suds. How were you diagnosed? I'm not sure what it means if your heart shoots up and then settles down pretty quickly, plus you have orthostatic hypotension. My understanding of POTS is that the tachycardia needs to be sustained and happens in the absence of orthostatic hypotension, but then I know people have been diagnosed with POTS who also have OH. I still don't get this. Did they do a tilt test?

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Naomi, that would answer my question, ( My understanding of POTS is that the tachycardia needs to be sustained and happens in the absence of orthostatic hypotension). I definitely have orthostatic hypotension! The longer I stand in one place, the worse I get! I failed the tilt test. It was a miserable test, I resisted the test for a long time, I hate fainting and couldn't understand why I had to "prove it".

If I can share my tilt test, here in my small town here it is: I get strapped in, tilted up and in walks the technicians husband. He is a volunteer at the hospital and had just had a colonoscopy and was waiting for her to drive him home. He begins chatting with me, asking symptoms, picks up my chart etc... I wanted to tell him to leave but was busy feeling like crap. In the meantime I am rolling in and out of naususness. He eventually walks out. I ask the technician if I can loosen the straps a bit because they are pushing on my stomach and chest making it hard to breath, she says ok. Then out of desperation, I'm holding a plastic vomit bin, I say to her, if u just tilt me all the way up I promise ill faint. So she does and that is the last thing I remember. When I come to she says, wow, that was quite a show, you threw the pan across the room and were jerking all over the place, and because you loosened the straps I had to support u up until you quit moving. She couldn't capture my heart rate at faint. Her report stated she couldn't capture the reading, the last she had was 90/60 heart rate 68. Because my heart rate never went into tachycardia my dr. Said it wasn't POTS. He put me on fludrocortisone , later beta blockers were added because the holter monitor recorded irregular heart beats. I get stabbing chest pains, palpitations that go into my throat making me temporarily feel like I'm choking and going to black out. My muscles have atrophied over the last 1 1/2 years so my neurologist suggested I go on a beta blocker break to exercise (since my hear rate wont rise). Since I've been off the beta blockers my heart rate zooms up very high, it has never in my life done that, that's why I was wondering if maybe it was POTS.

I felt the orthostatic hypotension/ autonomic failure/ neurocardogenic syncope label he gave me fit, but I have lately developed weakness, resting tremors, body rigidity and dysphagia, so he thinks the dysautonomia is heading into Parkinson's or parkinson isms. He put me on mirapex and it took care of the rigidity, and restless leg and my feeling of being unbalanced, but has done nothing for my main complaint : not being able to stand without shortness of breath, fainting, heat intolerance,& headaches,

Sorry for the long post, I haven't had anyone to talk to that has any idea what it's like to live in a body like this,

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Don't worry about the long post. Sometimes we need to get it out and share it with the only people who will truly understand. These are just thoughts based on what you said... the tech's husband shouldn't have been talking to you while tilted. During my last tilt I was instructed not to talk, I assume because it can affect results. Also, I don't understand how they failed to capture your heart rate - did something come loose when you were jerking around? Assuming you didn't have tachycardia before initiating medication and only developed it after stopping the beta blocker I'm wondering if there can be some rebound tachycardia- sort of a withdrawal symptom, until your body gets used to being without the beta blocker? Again, just thoughts, I'm no Doctor. You could bring up POTS with your neuro and see what he thinks. Are you comfortable with this Doctor and his plan to wait and see how this progresses? If not and you are able, you could consider seeing an autonomic specialist.

I was curious so looked it up.... here's a conversation between patient and Doctor about after effects of stopping beta blocker (but of course ask your own Doctor).

http://www.cardiachealth.org/ca-blog/fast-heart-rate-after-my-beta-blocker-was-stopped

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Wow, I bet that's it, I haven't checked my stats since. I'll do that.

I was encouraged to talk during the tilt, she wanted me describing my "feelings". Her husband should NOT have been there!! She said she had to run over and hold me up so she couldn't capture the rates when I actually fainted?

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Guest Alex

Suds,

welcome to dinet!

I have come off my beta blocker a while back (I did a very slow taper - slower than my dr suggested I'm assuming you haven't stopped yours cold turkey) and I have experienced some rebound tachy similar to what you have described for quite a while. I didn't'find it very worrying as I had tons of cardiac tests and was assured and reassured that my heart is fine. From my experience, it may take a while for your body to re-adjust after the beta blocker. I found that drinking more water and slightly upping my salt intake helped a lot while I re-adjusted.

Also, during my TTT I was encouraged to describe my symptoms after I was tilted, but I had my HR and BP continuously monitored. I was hooked up to an ECG machine and a beat to beat BP finger monitor, so my doctors have seen the continuous measurements/fluctuations of my vitals - my test was performed in an autonomic lab, and this is standard procedure for them. As Naomi mentioned above, I have a hard time understanding why the nurse failed to record your HR, weren't you hooked up to a HR monitor? The monitor should have recorded everything...

The tremors you're mentioning, are they present only when you're standing by any chance? If so, I suggest you look into something called "orthostatic tremors" - I have some articles that I can share with you if you are interested.

Best of luck and keep us in the loop.

Alex

Edited by Alex

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I've been on bb's for about 8 years and when I tapered down I kept getting high hr's. My cardio told me that it was a rebound effect from being years on bb's on a high dose. It took about 2 years for it to wear off. Of course allways get in touch with your doctor/cardio when you think necessary!

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Sorry it's taken me a bit to get back, I took 2 beta blockers a day, one a.m. , one p.m. I didn't get anything specific about tapering off. I just went to 1 pill a day, for 3 days then quit, my idea because I wasn't told otherwise. I seem to be feeling better but thought that was due to cooler weather. So maybe it was temporary and due to rebound. The fact that I never had high heart rates before would make sense.

Alex, your comment is exactly what I was thinking. She kept watching the monitor and the fact that she reported heart rates and BP in her report meant she captured them, so I have no idea why she couldn't get it when I fainted, unless its a timing issue and she might had had to "mark" the readings at the exact moment of the faint, but couldn't because she had to walk away from the monitor. Do you think if I went to the hospital where they did the testing they would have more than the 2 paragraph report I was given? It was probably 3 years ago.

My tremors started in my right hand, and now both, it only happens when they are at rest. I'm now on Sinmet and while it has helped tremendously with body rigidity, balance and restless leg . it has not helped at all with shortness of breath , heat intolerance or not being able to stand. I have many many other symptoms but not being able to stand for very long is my main concern as it is what is limiting my quality of life. The swallowing problem started around July. The study showed weakness on the right side of my throat and a timing issue. It's not severe but they sent me to therapy because they said if it is due to problems with the nervous system it could get worse.

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