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hiya

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Posts: 19
Reply with quote  #1 
    I'm curious: how many of you with hyperacusis have diagnosed dysautonomia or multiple symptoms of it (IBS symptoms, racing or slow heart, blood pressure issues, migraines, hyperreflexia, dizziness on standing, anhidrosis/ hyperhidrosis, heat/cold intolerance, weakness, fatigue, malaise, passing out/nearly passing out, acid reflux, dry mouth/hypersalivation, dry eyes, photophobia, and of course. . . sound sensitivity, among other symptoms)?

    I'm curious considering the fact that I was diagnosed with dysautonomia (Postural Orthostatic Tachycardia Syndrome and orthostatic hypotension) the very tail end of August. While I'm sure that my sound sensitivity ultimately results from/is influenced by a myriad of factors, it was validating to find that hypersensitivities often present in dysautonomia. It was also good to know that I wasn't just exaggerating or over-monitoring sensation like a hypochondriac. I could finally point to something that explained my issues and explain the issue at my work, b/c it affects my work.
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bellsareriging

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Posts: 16
Reply with quote  #2 
Sorry  Hiya   I cannot  help you,with your  illness  count,of multiple symptoms but  I can relate  to the hypochondriac  sentence, 

but then Maligned is another  word  that I   relate  too

with a  heap of  familiarity, hope you  get some  answers.

 wish you  well with your work


Bell
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hiya

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Posts: 19
Reply with quote  #3 
Yeah, I was also worried that people would conclude that I was malingering. I still get worried about that b/c so many people don't know/understand conditions like dysautonomia and hyperacusis.
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kuhnstefanie

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Reply with quote  #4 
have you checked that to your specialist? 
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sarah_d1

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Posts: 6
Reply with quote  #5 
hiya -

I was also just diagnosed with POTS, and my cardiologist confirmed that hyperacusis is in fact a symptom.  My issue is that mine seems to be vestibular - I get nausea and dizziness with loud sounds.  SO frustrating but I am determined to get help for it.  What are your hyperacusis symptoms?  Have you found any help yet?



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Sarah D.
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hiya

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Posts: 19
Reply with quote  #6 
Mine isn't a particularly severe case, but it definitely gets in the way of stuff. I get general discomfort and sometimes weird "burning" sensations in my face, but I REALLy get feelings of fullness. My right ear sometimes distorts voices if people get too loud, and it's a weird kind of rattling, kind of like a broken speaker. I get middle ear myoclonous not uncommonly.

I can get really overwhelmed by noise pretty quickly. I startle very easily from loud sounds that feel intense, sharp and make my tinnitus spike up. Depending on pitch and volume, I feel some sounds in my face and head. It's been an issue since I was 12 or so, so about half of my life. I have some bad noise anxiety in particular situations, especially when I can't get away from the source. Always have some baseline tinnitus, but sometimes it just spikes and makes my whole head feel like it's vibrating, which is a bit disturbing. . .

Last evaluation I had was at an ENT's office in 2015, and he basically chalked the entire thing up to TMJD, which I do have. I'm pretty sure, though, that A LOT of other factors contributed to developing hypersensitivity.
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sarah_d1

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Posts: 6
Reply with quote  #7 
That's all very interesting.  Glad to hear that it is not too severe.  I saw a cardiologist who specializes in POTS about my dizziness.  He concluded that I do in fact have POTS due to very slight tachycardia after standing for over 20 minutes on the tilt table test.  But  he said that it was so mild that he would not treat it with medication.  

He said that my dizziness is not cardiac - no blood pressure issues.  He said the POTS can be causing the sound sensitivity, but not the dizziness (based on the test results).  So he referred me to an ENT.  A hearing test checked out completely normal, including my LSLs.  I had an MRI last week so I'm waiting on results for that.  

I believe I have vestibular hyperacusis based on my symptoms, but I think I need more testing to rule out other possible causes.  The MRI will help with that, but I'm not sure what else to do in terms of diagnostic testing.  The ENT mentioned that I could be having vestibular migraines, so is referring me to a neurologist who specializes in that type of migraine.  Usually I do not have a headache, which makes all of this even more mysterious.

I have an appointment to see a neurologist that specializes in POTS at the Mayo Clinic in Phoenix, so maybe he will be able to shed some light on all of this.  

Do you plan to do TRT?

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Sarah D.
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hiya

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Posts: 19
Reply with quote  #8 
Barely able to afford meds I'm on now and gas for my car, b/c I'm in an unpaid internship for my bachelor's and doing one shift a week at my job. Don't know when I could ever do it. But anyway. . .
Yeah, migraines are associated with dysautonomia, my mom used to get chronic migraines (she's had autonomic and autoimmune issues), and I get them too. Classic ones with an aura, sometimes an aura without the headache, which is pretty weird. I also just get plenty of milder headaches and weird, random neuralgias in my head. Ugh!

That sounds rough! Even though I don't have dizziness associated with loud noise, I at least can empathize to an extent considering I get dizzy pretty often!

When I did the tilt table test, my blood pressure dropped pretty dramatically, I think the systolic dropped maybe 18 mmHg, which is close enough to diagnostic criteria for OH to reasonably call it. My heart rate, though, shot up from 81 bpm to 127 bpm. 48 bpm. . . I'm glad it actually showed up during the test!

I get tachy sometimes while lying down, but mostly on standing. I also get arrhythmia (PVC's) seemingly at random. I take multiple meds for multiple issues, dysautonomia included of course, and it ends up coming to 6 or so meds every morning, and often enough others in the day. You get prescribed anything for the POTS? They put me on fludrocortisone and propranolol.
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sarah_d1

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Posts: 6
Reply with quote  #9 
I'm not currently taking anything for the POTS.  I get tachy if I drink wine [frown], and when standing for long periods.  On the tilt my bpm went from about 68 to 100, so just barely met the POTS criteria, but like you, I'm glad it actually showed up because I knew something wasn't right and my primary doc just thought I was perpetually stressed and making these things up.

So my doc and I decided that I would not do meds at this point since it is mild and intermittent.  I do take meds for other things though - I have gastroparesis (slow digestion) - so I take motilium for that.  Also insulin since I have type 1 diabetes (autoimmune).  

All of that is really nothing though compared to this dizziness, nausea and sound sensitivity [frown].  I need to treat this because it is effecting how much I am able to do day to day [frown].

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Sarah D.
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hiya

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Posts: 19
Reply with quote  #10 
Yeah, that's hard. I see how it would get in the way. Even though my sound sensitivity is on the milder end, it still affects me significantly everyday. . . especially in social situations. It gets to be so isolating. It affects everything. . . It used to be more severe, and it fluctuates, of course.

Even the transient dizziness that I get randomly or associated with low blood pressure is definitely disorienting and limiting at times, so I would imagine having that to a severe degree like you do is debilitating. I'm sorry you're dealing with that.

I have gut issues and would also get nauseated, but in my case it was likely mostly related to acid reflux. I have to take an acid reducer everyday or it flares up and it doesn't seem to matter what I eat or anything else, really :/

I take fludrocortisone and propranolol. The propranolol makes life with the tachycardia bearable. Interestingly, it is sometimes used to prevent migraine and cluster headaches. I really hate it that people, including doctors, just so readily dismiss these issues, specific things like hyperacusis and systemic issues like dysutonomia. People didn't believe me when I said this felt different from anxiety. I know what anxiety feels like, b/c I've had it since I was a child! If GP's knew about POTS and OH, they could even test for it themselves. It's not too hard to screen for it by having someone lie down, check hr & bp, then have them stand up for 10 min. or so and check it a few more times. :/

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sarah_d1

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Posts: 6
Reply with quote  #11 
Thanks hiya [smile].  Definitely let me know if you hear of any good treatments for any of our issues and I will do the same.  I am surprised we are the only POTS people on here!
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Sarah D.
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hiya

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Posts: 19
Reply with quote  #12 
Yeah. I have to wonder if there are some others who just don't realize it, since it usually takes forever to get it diagnosed. . .

My dysautonomia is causing me substantial trouble right now, as I'm doing a social service internship to complete my bachelor's in psychology and social work. I'm in a long-term care setting, and on bad days it feels so draining to get up and move around. Low blood pressure, tachycardia, and air-hunger aren't exactly conducive to functioning at optimal capacity. And the noise gets to be a problem. Be it a heavy door, loud voices on the phone, high volume television from a nearby resident's room, an office-mate slamming a stapler or suddenly crunching paper into a ball, feedback from a resident's hearing aid, or someone speaking in the room and making it hard for me to hear someone on the phone from a resource agency, it gets pretty frustrating. Of course, when I'm having trouble dealing with it, I have some earplugs that I bought specifically for social or work situations.

Early last year I shelled out for a small pair of earasers high-fidelity earplugs, and even though I wish the NRR was a bit higher, they are helpful in situations when I still need to hear people pretty well, b/c they have a flat attenuation across frequencies. And the thing that really sold me on them is that they are virtually invisible when well-inserted. It's nice to not have people ask embarrassing questions! If they weren't so expensive I'd have multiple pairs of them.
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