Autonomic Dysfunction and Pulsatile Tinnitus

[Coyotesheaven]

This is one of those symptoms that is affiliated with autonomic dysfunction. Has anyone here been diagnosed with POTS, multiple system atrophy, or another autonomic disorder?

I have pulsatile T and likely have an autonomic disorder, so any insight helps!

 

[Karen]

Hi, @Coyotesheaven

I have pulsatile tinnitus, too, but mine was not caused by an autonomic disorder. Mine started after taking a blood pressure drug.

Here is a link to an article I found about autonomic disorders:
http://www.healthline.com/health/autonomic-dysfunction#Symptoms2

I'd be interested to hear more about your symptoms. Also, have you had any tests? Have you been to a doctor or doctors, and what did they say?

 

[Coyotesheaven]

@Karen

Hello and thank you for replying and giving me some information.

All I know is that taken together, my symptoms look a lot like POTS or a dysfunction of my vascular system in my brain/neck (that page you showed me, a lot of my symptoms are consistent). So many things have been ruled out now , but autonomic dysfunction is one of the few things suggested that we haven't explored completely; and it was suggested as a cause. Nothing has ever been totally confirmed via diagnosis because most of my doctors are not that insightful about less common neurological disorders, or just don't listen to what I tell them :/.

I have had a zillion audiograms showing inconsistency and erratic hearing changes, most staying barely in the normal range, but my tympanograms, ABR, OAE, have all come back normal (as of May 2016, things have likely changed now). My MRI and MRA are fine, nothing on the auditory nerves and no problems with the major vessels. MY CT scan of the temp. bone was also fine, but it was done before most problems began so I do not trust it at all. No infections or common autoimmune disorders as indicated by blood tests. So I have gone through most testing available.

Um there are so many symptoms I won't cover, but concerning my ears:

• High and low frequency tinnitus, both of which are now more pulsatile in nature
• Tiny sudden hearing losses and fluctuating/deteriorating hearing in the high and low frequencies every day, slightly impeding on the speech range. Audiograms are roller coastering a lot of the time.
• Occasional ear fullness and ear pains
• Eustachian tube problems
• Vertigo and dizziness. I have had rotary, rocking boat, and shaking up and down vertigo types.
• All of this has an enormous variety of triggers. Loud noises, fast changes in (head) blood pressure, straining activities (coughing, laughing, bending over, moving heavy things), emotional stress, even swallowing and ear popping, have all set it off. It's impossible to control the triggers because there are too many.
• Sudden, painful jolts followed by a huge tinnitus spike and hearing fading lasting a few seconds in my ear(s). The phenomenon is called 'the aliens are calling', and should only last a few seconds, but once it happens the tinnitus and hearing takes a long time, if ever, to go away. I think it is a vasospasm somewhere around my cochlea

 

[Karen]

Hi, @Coyotesheaven

Yes, you certainly have a lot of symptoms, many of which are erratic. Are there any neurologists or neurotologists in your area, preferably at a teaching hospital, who could look at your scans and discuss your symptoms? Or, since you have symptoms of POTS, I wonder if a cardiologist would be able to help?

Another suggestion: There is a new clinic that has opened in San Francisco that specializes in pulsatile tinnitus. You could consider contacting them to see if a specialist could view your scans or otherwise assist you long-distance.

I will say that when my pulsatile tinnitus first started (which has been more than 6 years ago), I also had Eustachian tube problems, feelings of fullness in the ear, dizziness and several bouts of vertigo. Now, I still have the pulsatile tinnitus as well as regular tinnitus, but the other symptoms have gone away. It could be that it takes time for the brain and the ears to adjust to this new condition, and it may settle down over time. I would love to get rid of my pulsatile tinnitus, too, but at least I am better able to live with it now than I could at the beginning. Perhaps I can at least offer you some hope, that some of your symptoms may fade with time.

Best wishes,
Karen

 

[just1morething]

autonomic dysfunction is one of the few things suggested that we haven't explored completely

I had a autonomic nerve test done earlier this year indicating peripheral neuropathy. My toes would burn and sting. I don't know if that can cause tinnitus or other problems associated with your conditions. I thought there was a possibility that neuropathy could be related to my tinnitus to some degree but I just don't know for sure.

 

[just1morething]

I have a B12 deficiency that could be helped by fish, milk etc. I'm just looking into that now and how it could be related to neuropathy and possibly tinnitus.

 

[Coyotesheaven]

@just1morething

That's all interesting. I don't have a B-12 deficiency but some level of neuropathy is possible.