Anyone else have constant tinnitus from POTS?

[VerdantPikmin]

Does anyone else have constant tinnitus because of POTS? It was my first symptom I noticed, when it first started it'd completely go away within 10 minutes of lying down and very slowly come back when sitting up or standing. It started to very gradually become less positional around the same time I started getting bad (160-180 bpm) tachycardia from eating meals. It never completely goes away anymore, but I notice it's usually quieter when I first wake up and it gradually gets louder with being upright. Exertion, stress, low blood pressure, and eating a big meal make it louder on top of that.

I've had my hearing checked, an MRI scan of my brain and ears, ear nerves, CSF leak was ruled out. If I get out of bed too quickly that can make it very loud for 1-2 hours even if I immediately lie back down again. It's still positional in that it gets noticeably louder when I've been upright for too long, just less so than before.

[Pistol]

@VerdantPikmin my family has a history of HPOTS in three generations, and many of them have tinnitus as well as intermittent hearing loss when the BP drops and the HR increases. We were told by autonomic specialists as well as ENTs that this is most likely due to a loss of cerebral circulation. 

[VerdantPikmin]

8 minutes ago, Pistol said:

@VerdantPikmin my family has a history of HPOTS in three generations, and many of them have tinnitus as well as intermittent hearing loss when the BP drops and the HR increases. We were told by autonomic specialists as well as ENTs that this is most likely due to a loss of cerebral circulation. 

Thanks for the reply! Mine is still sort of positional, but I'm wondering why it used to completely go away in 10 minutes of lying down, then that time span got longer, until gradually the tinnitus decided it was here to stay no matter how long I lied flat.

[MaineDoug]

I also have tinnitus. It is worse when I am flared.

[Sarah Tee]

@VerdantPikmin, there was some research recently that showed cerebral hypoperfusion after a tilt table test took longer to resolve according to how unwell the subject was in their everyday life. This was only measured on one occasion per subject, but maybe for some of us the hypoperfusion is slower to resolve when we lie down as things go on.

This was tested in patient groups with CFS and POTS or OH, or just CFS. Unfortunately I don’t think they had a group that had only POTS.

I have cerebral hypoperfusion, not from POTS. Lying down doesn’t help me all that much. I feel a bit better, but not much. Mine hasn’t been measured in detail like in the study yet. I am working on it though.

 

“Cerebral blood flow is reduced in ME/CFS during head-up tilt testing even in the absence of hypotension or tachycardia”

https://pubmed.ncbi.nlm.nih.gov/32140630/

“Cerebral blood flow remains reduced after tilt testing in myalgic encephalomyelitis/chronic fatigue syndrome patients”

https://pubmed.ncbi.nlm.nih.gov/34667909/

[MikeO]

I have constant tinnitus in my left ear. have had it for years. can't say it's from "POTS" as i do not have it or from a autonomic dysfunction. It is suspected to be vascular in nature just from the fact when i have a skipped heart beat the tinnitus stops for the second or two it takes my heart to get back on track.

Just like @MaineDougmentioned mine gets worse when i am in a flare but then so is my other vitals.

[Water Lover]

I also have tinnitus. It may not be quite constant—there are times when I do not notice it—but it is most of the time. My impression is that it has been worsening over time, though it is not at this point interfering with my hearing and I tolerate it. 
 

I’ve also noticed the connection with flares—in fact I’m experiencing worse than usual symptoms today, and I remember noticing last night that my tinnitus was worse than usual. Tinnitus as early alert system?

[MikeO]

2 hours ago, Water Lover said:

I also have tinnitus. It may not be quite constant—there are times when I do not notice it—but it is most of the time. My impression is that it has been worsening over time, though it is not at this point interfering with my hearing and I tolerate it. 
 

I’ve also noticed the connection with flares—in fact I’m experiencing worse than usual symptoms today, and I remember noticing last night that my tinnitus was worse than usual. Tinnitus as early alert system?

as @Pistolmentioned and from my experience hearing changes can be a heads up. here is what a young gal wrote in a POTS writeup. i can send the link in a message if anyone wants it.

• Hearing; heartbeat in ears, whooshing/ waterfall/rushing sound, ringing in ears, can’t quite hear or understand people talking to you or they sound far away, sounds are really muddled 

 

[akj]

My diagnosis in 2019, about ear sounds, was pulsatile tinnitus in R ear.  The sound I hear is my heart beat.  It is constant.  

But I can’t say if it is from POTs as my Dysautonomia diagnosis seems to keep changing.  ER doctor said I had vasovagal syncope, neurologist said POTs, cardiologist labeled symptoms orthostatic intolerance, another said neurogenic cardiac syncope.  Neurogenic  orthostatic hypotension was also suggested??

I was surprised to get such a clear diagnosis of my ear problem, when a set diagnosis of my Dysautonomia has not happened.  Midodrine has helped me keep my BP and HR more stable.

But to answer the question you asked, VerdantPikmini, while I can’t be sure they are related, I certainly believe they are.  They both, pulsatile tinnitus and Dysautonomia problems, seem related to circulation issues of some kind.

As always thanks to all who contribute and support this site. It is a lifesaver for those of us who keep searching for what on earth is wrong with us.

 Thank you, akj

[Sarah Tee]

@akj, I wonder if it’s a matter of how the ANS goes wrong. It could go from a “healthy” pattern to a “wrong” pattern, which can then be given a label such as POTS. But maybe it can also go from a “healthy” pattern into bouncing about into various wrong patterns, or even no discernible pattern.

Just a thought of my own. Haven’t heard any experts say this 🙂

[Pistol]

12 hours ago, akj said:

 ER doctor said I had vasovagal syncope, neurologist said POTs, cardiologist labeled symptoms orthostatic intolerance, another said neurogenic cardiac syncope.

@akj Huh, I have the same words in my never-ending tossed salad of diagnoses! My first TTT showed NCS ( neuro-cardiac syncope ) and the second was positive for POTS. In the end we have to recognize that ANS dysfunction is difficult to label, Physicians need to go by symptoms rather than data. That - I believe - is the reason many docs wont touch dysautonomia with a ten foot pole. 

[MikeO]

3 hours ago, Pistol said:

That - I believe - is the reason many docs wont touch dysautonomia with a ten foot pole. 

Know this one first hand. I do give my primary and cardiologist credit for trying to help. both recognize dysautonomia or a better word autonomic dysfunction. both of my TTT showed disimular results. my cardiologists complaint is that the faint clinic i was engaged in should have been helping. at this point it is clear they want nothing to do with me. after his phone conference with them and he ended up taking a lead to get more testing done, is telling.   

[MaineDoug]

I’m doing an “experiment” on Tinnitus amd dysautonomia flares right now! 🤪 After being fairly stable for months, as long as I drink, eat salt, lie flat, and limit standing to <30 minutes per day, my condition has been flaring for 10 days. Started feeling vaguely off, then symptoms like sweating, headaches, sleep disturbance, and has worsened everyday. Now seeing bad tachycardia (185) and BP (200/100) with ANY standing activity AND FOR PURPOSES OF THIS DISCUSSION my Tinnitus has started raging, mostly in my left ear, with sudden increases and slow decreases. 
 

No idea why I’m flaring. Just staying flat to keep my vitals under control and waiting on my Neurologist. I’ll ask her the Tinnitus question when she calls. She’s a professor at Columbia and does research 4/5 days so she may have some interesting perspective!

Stay flat and stay well all!

[Pistol]

@MaineDoug I have episodes of either high or low BP with flares, and I experience tinnitus ( or more rushing sounds in my ears ) during both. With the high BP the sound is more pulsating and with low BP it is more steady.