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K.Soph

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 #1 
Hi Dr. Nagler,

Let me start by saying thank you for creating this forum. It’s nice to have a place where the difficulties of tinnitus could be understood.

My story...

I’m 29, fit, and haven’t had any major health issues in my life until June 2018, when I experienced a perimensencephalic subarachnoid hemorrhage (try saying that fast). Basically, a non-aneurysm hemorrhage in my midbrain, from what I’ve been told. I was working out at the gym and experienced and a sudden and intense thunderclap headache, followed shortly by vomiting. I’m no doctor, but I figured those two things together were bad and had the gym call me an ambulance. CT confirmed blood in the subarachnoid space.

The good news: almost all of my symptoms (severe headaches, vomit, back spasms, dizziness, noise sensitivity) have disappeared with time. For this, I’m grateful. Hemorrhages are scary as hell, if I may say so myself. I spent a week in neurosurgery and my issues, although very real, were put into perspective. I was the only person there who could both walk and talk, albeit slowly and painfully.

The tough news: I started experiencing tinnitus two weeks after my hemorrhage, starting only in one ear but it has graduated to both ears. It’s multitonal and asymmetrical, with high pitched ringing in both ears, and two additional pure tones in the left that are absolutely maddening. It’s more maddening for me because there’s no consistency. The sounds keep piling on, and it makes it hard to ignore and tune them out.

Adding to that, I’ve been experiencing a lot of fullness and intense pressure in my ears. I had some ear fullness in the beginning, but intermittently. Ever since I had a cold in December, followed by bronchitis in January, they feel watery and full, especially after eating (my observation).

I’ve seen both an otologist and a neurologist. The otologist I saw in September said my tinnitus was my brain, not my inner ear, but this was before the constant fullness, ear pressure and strange popping in both ears. The neurologist provided similar feedback in that this was a brain issue (I mean, isn’t it always with tinnitus?) and nerves, including the 8th nerve which is close to where my blood vessel burst, can take up to two years to heal.

Sorry for the lengthy preamble. All of this said, my questions:

A) Can a hemorrhage/stroke in my midbrain cause something like ear fullness, or (my fear) cochlear hydrops? From what I’ve read as a layperson, tinnitus isn’t uncommon for brain injuries, but the fullness, increasing tinnitus and variation throughout the day is what concerns me.

B) Why would there be a steady increase in tones over 8 months, given my (presumably) causative event was eight months ago? I started with one and toggle between 4/5 now.

I’m waiting for a second opinion from another otologist, given the fullness. I’ve not had any vertigo and my hearing doesn’t seem to fluctuate, or if it does it’s certainly not noticeable. Last audiogram in my possession was from August, so not super recent, but I am happy to send that over.

Thanks for taking the time to read my novel. It’s been a tough road since June, and any advice is welcome.

Kat

Dr. Nagler

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 #2 
Hello Kat ... and thank you for your interesting question.

I want to give it a bit of thought before responding, but meanwhile it would help if you would clarify something for me. Early in your post you referred to the "difficulties of tinnitus," but your post discussed the fact that you have tinnitus (presumably as a result of your subarachnoid bleed) without giving me an idea of the degree to which your tinnitus is affecting your life. So let's assume that you never had a subarachnoid bleed and moreover that you have no feelings of fullness, pressure, or popping. In other words, around eight months ago out of the blue you noticed that your ears were ringing, and since then you have detected an increase in tones and some variability. What I would like to know is on a scale of 1 to 10 where 1 is "I have tinnitus and I'd prefer not to have tinnitus but in the grand scheme of things I do not care much one way or the other because my tinnitus does not affect my life," and 10 is "I have tinnitus and my tinnitus has totally, completely, permanently, and irrevocably destroyed my life," where would you place yourself along that huge continuum these days? Please just give me one overall average number. Again, please keep in mind that for the purpose of this hypothetical you never had the subarachnoid bleed and have absolutely no symptoms other than the ringing in your ears.

Thank you.

Stephen M. Nagler, M.D.

__________________

The best way to find yourself is to lose yourself in the service of others.
- Mahatma Gandhi

No bird ever soared in a calm. Adversity is what lifts us.
-
David McCullough quoting Wilbur Wright
K.Soph

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 #3 
Thanks for the quick response! While my ringing has not improved, my management of it has. But, whenever a louder or new tone sets in it’s a setback in my attitude and the anxiety, that’s for sure. In your hypothetical where all the other aspects mentioned are not a factor, i’d put this at a 6.5 (if decibels are accepted).
Dr. Nagler

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 #4 
Kat, please bear with me. I assure you that there is a method to my madness! :-)

Many folks with VERY LOUD tinnitus are hardly affected at all. Many folks with very soft tinnitus are all-but-incapacitated by it. At there is every imaginable combination and permutation in-between. Moreover there are many folks with VERY LOUD tinnitus who used to be greatly affected by it but who are no longer affected by it to any appreciable degree, even though their tinnitus has not changed a bit! None of this has to do with how "tough" they are; rather it has to do with how their brains process sound, something over which they have little, if any, conscious control. And the same sort of thing holds true for fluctuating tinnitus, multi-tonal tinnitus, etc. 

So when you write above parenthetically "if decibels are accepted," my answer is that in this particular hypothetical decibels are not accepted. What I am looking for is a number from you on my 1 to 10 scale that represents the overall degree to which your tinnitus affects your life ... period. 1 is "I have tinnitus and I'd prefer not to have tinnitus but in the grand scheme of things I do not care much one way or the other because my tinnitus does not affect my life," and 10 is "I have tinnitus and my tinnitus has totally, completely, permanently, and irrevocably destroyed my life." Give it a little more thought and come up with a single number that represents where you are overall these days, some eight months after the onset of your tinnitus irrespective of any other symptoms.

Meanwhile, I'll continue to think about your question.

Thanks -

Stephen M. Nagler, M.D.

__________________

The best way to find yourself is to lose yourself in the service of others.
- Mahatma Gandhi

No bird ever soared in a calm. Adversity is what lifts us.
-
David McCullough quoting Wilbur Wright
K.Soph

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 #5 
Sorry, I meant if you accepted a decibel number (6.5) rather than a whole number (6 or 7) as a response to your 1-10 scale. Then, Let’s go with 6 as my answer in your hypothetical. Thanks!
Dr. Nagler

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 #6 
Ahh, I see the confusion! You meant decimal number. Easy mistake to make since we are dealing with sound. We can stick with 6.5 if you like.

OK. Check back tomorrow, and by then I should have my thoughts together. Thank you for your patience.

Stephen M. Nagler, M.D.

__________________

The best way to find yourself is to lose yourself in the service of others.
- Mahatma Gandhi

No bird ever soared in a calm. Adversity is what lifts us.
-
David McCullough quoting Wilbur Wright
K.Soph

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Posts: 5
 #7 
Too funny! You’re right, sorry - of all the words to mix-up! You know you’ve been reading too much about tinnitus when...[ also, Brain is still
A bit foggy these days :) ]

I appreciate your responsiveness, Doctor. Thank you!
Dr. Nagler

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 #8 
Kat, now that I've had some time to think about your questions, I'll respond. But what I am about to say is more the product of how I have come to look at things over the years rather than anything written in stone.

So some nine months ago you had a subarachnoid hemorrhage. As you have since learned, a considerable number of folks die from intracranial hemorrhages, and many others are left with some sort of permanent neurological impairment. In your case you are very fortunate in that as best I can determine you have pretty-much returned to your pre-bleed state, not without a good bit of hard work on your part I might add. Indeed, it appears that the only adverse sequela is your tinnitus that began two weeks after the incident. And you are also concerned about a feeling of fullness/pressure as well as some popping.

I use the word "appears" in my last sentence above because you really have no idea whether or not the tinnitus was actually caused by the bleed. It might have been pure coincidence. Or the emergence of your tinnitus might have been related to your (totally understandable) stress and anxiety, given what had just occurred. Your otologist told you that your tinnitus is due to your brain, but everybody's tinnitus is a "brain thing" - you just hear it in your ears because it's an auditory signal! It would be very weird indeed to hear it in your knees, no? The good news, if you wish to call it that, is that by now (some eight months after onset) whether or not your tinnitus is directly related to your subarachnoid bleed is completely irrelevant. Either way there is still a decent likelihood that it will resolve in time. And even if it doesn't, you will likely habituate it over time so that instead of its being a 6.5, it will be more like a 2!

The biggest issue in terms of your moving forward may be the barriers that you yourself (like many others) unwittingly place along your path. For a brief introduction to what I am talking about, see Barriers to Habituation.

Regarding the variability of your tinnitus, that is nothing particularly unusual. And as I see it, the fullness has yet to be fully evaluated. Possibly it is related to some middle-ear pressure that will be revealed at the time of your upcoming otological examination. Or it might be related to a threshold shift. Or it might be related to your auditory system's being on "high alert," given the course of events. Or it might be due to any number of other things. I am sure that you will agree that it would be irresponsible of me to guess. You will have a much better handle on the fullness and popping after that exam.

I suspect that you were hoping for more in my response, but I'm afraid that's the best I can do for now.

Kind regards - 

Stephen M. Nagler, M.D.


__________________

The best way to find yourself is to lose yourself in the service of others.
- Mahatma Gandhi

No bird ever soared in a calm. Adversity is what lifts us.
-
David McCullough quoting Wilbur Wright
K.Soph

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Posts: 5
 #9 
Thanks, Dr. Nagler. It helps to have perspective on all the things that could be contributing to my fullness symptoms, and it sounds like it could be many things. I have an apt with an ENT coming up so hopefully I’ll have a better idea after that. And, I certainly look forward to moving in the direction where my tinnitus either disappears or is irrelevant to me. Either would be an improvement.

Intellectually, I know I am fortunate to have bounced back from a subarachnoid hemorrhage and things could have turned out very differently. Emotionally, it’s still a raw experience, and the thought of continued complications with symptoms (tinnitus, fullness, etc.), whether they are related or not to my hemorrhage, are enough to keep the anxiety high. Sometimes I forget that 9 months is really not that long in the scheme of acquired brain injury recovery, and progress has been made.

I appreciate your response and practical outlook, Dr. Nagler. Thank you for making my day better.

Kat
Dr. Nagler

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 #10 
Quote:
Originally Posted by Kat
Thanks, Dr. Nagler.

Glad to help.

Quote:
It helps to have perspective on all the things that could be contributing to my fullness symptoms, and it sounds like it could be many things. I have an apt with an ENT coming up so hopefully I’ll have a better idea after that.

Right. The ENT appointment will be very important in that regard. It is always reassuring to be able to boil a variety of symptoms down to one common denominator, one cause. But in many cases one symptom will have one cause, while another symptom will have another cause.

Quote:
And, I certainly look forward to moving in the direction where my tinnitus either disappears or is irrelevant to me. Either would be an improvement. 

I think that sort of thinking can be counterproductive. You can have a full, productive, and enjoyable life even if your tinnitus is not irrelevant to you. My tinnitus is certainly not irrelevant to me; it is less relevant to me than in the mid-1990s, that's for sure. But it is not irrelevant.

Quote:
Intellectually, I know I am fortunate to have bounced back from a subarachnoid hemorrhage and things could have turned out very differently. Emotionally, it’s still a raw experience, and the thought of continued complications with symptoms (tinnitus, fullness, etc.), whether they are related or not to my hemorrhage, are enough to keep the anxiety high. Sometimes I forget that 9 months is really not that long in the scheme of acquired brain injury recovery, and progress has been made.

It is not at all uncommon for a tinnitus sufferer to lose sight of the progress he or she has made. Circumstances change. Life is fluid, not static. Here's another trap - discounting one's own suffering compared to this event or that. I recall when in 1995, at the height of my own misery, news of the Oklahoma City bombing hit the headlines, and I said to myself, "What am I complaining for? Think of the loss of life in Oklahoma. now that's real misery." I felt guilty and ashamed until I realized that I was being totally unfair to myself. Misery is a very personal thing. One's misery cannot in any way be compared to another's. Indeed, doing so is guaranteed to make you feel worse and not better - because you have no conscious control over your own misery. It is what it is!

Quote:
I appreciate your response and practical outlook, Dr. Nagler. Thank you for making my day better.

You are most welcome, Kat. And if I may, I just want to remind you that you can make your own day better anytime you like. You don't need me to do it! :-)

Stephen M. Nagler, M.D.

__________________

The best way to find yourself is to lose yourself in the service of others.
- Mahatma Gandhi

No bird ever soared in a calm. Adversity is what lifts us.
-
David McCullough quoting Wilbur Wright
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