Tinnitus After Lumbar Puncture

[Reverse]

They found a papillary edema in my right eye and to rule out different illnesses, they did a lumbar puncture on me. I asked for potential side effects, but was only told that I might get a mild headache.

Instead I got a handicapping headache, nausea, different kinds of tinnitus, dizziness, some hearing loss in one ear, had difficulty swallowing... I asked for a bloodpatch after a couple of days, but they told me to just rest and it would get better. A week after the lumbar puncture, my husband drove me to the ER, since I was just getting worse, and they did a blood patch immediately.

I hear high pitch noises, what I guess people mostly think of when you say "tinnitus". The worst is a low pitch oscillating noise, kind of buzzing and at the same time it feels like my ears are vibrating/fluttering... It's a very "living" noise, because sometimes it's fast and sometimes the oscillating slows, like it's being stretched, hard to explain...

The papillary edema they gave me three days of IV Solu-Medrol (cortisone) for about a month after the lumbar puncture. The low pitch noise with the vibrations/fluttering went almost completely away that week, as some sort of side effect... Then it has slowly come back week by week. The high pitch noises have stayed the same.

Doctors I've met here so far are very blasé and tells me to just wait and it will "probably" resolve on its own and prognosis is good after a lumbar puncture. Or I'll learn to live with it.

I am autistic and very dependent on silence for mental recovery in daily life.

I had absolutely no tinnitus before the lumbar puncture. I moved out to the countryside eight years ago to really be able to enjoy the silence, and that I have. Until now...

Forgot to mention that the hearing loss was restored when I got the bloodpatch. I have done three audiograms since and they said my hearing is even better than expected in my age (I'm 40). I have always taken great care of my ears...

 

[billie48]

I hear high pitch noises, what I guess people mostly think of when you say "tinnitus". The worst is a low pitch oscillating noise, kind of buzzing and at the same time it feels like my ears are vibrating/fluttering... It's a very "living" noise, because sometimes it's fast and sometimes the oscillating slows, like it's being stretched, hard to explain...

Welcome to the forum. I have similar tinnitus. One is ultra high pitched tinnitus from the right ear. The other is from my left ear which has lost all hearing about 18 months ago. This one is similar to what you describe, low pitch oscillating, rumbling, vibrating. Yes it can vary so it is like you describe as a 'living' noise. I also had hyperacusis for about 9 months. It has faded now. My tinnitus may not be caused by the same reason as yours but I do understand what you are going through. You have my empathy. It was a bit overwhelming at first but now I am living a normal life and trying to enjoy it as much as I can, fishing, gardening, dancing, etc. So try hang in there and try to stay positive that all will be well over time. Let the body heal without putting too much stress.

Best wishes. God bless your recovery.

 

[Sydnears]

Welcome to the forum. I have similar tinnitus. One is ultra high pitched tinnitus from the right ear. The other is from my left ear which has lost all hearing about 18 months ago. This one is similar to what you describe, low pitch oscillating, rumbling, vibrating. Yes it can vary so it is like you describe as a 'living' noise. I also had hyperacusis for about 9 months. It has faded now. My tinnitus may not be caused by the same reason as yours but I do understand what you are going through. You have my empathy. It was a bit overwhelming at first but now I am living a normal life and trying to enjoy it as much as I can, fishing, gardening, dancing, etc. So try hang in there and try to stay positive that all will be well over time. Let the body heal without putting too much stress.

Best wishes. God bless your recovery.

@billie48, can I ask if your low-frequency noise has changed over time? And if not, have you been able to habituate to it and manage to tune it out at times?

I have the exact same "living" noise, a low-pitched, irregularly oscillating rumble. I'm four months into it and looking for some hope that I won't keep feeling this much despair. How does anyone get used to something that is so irregular?

 

[billie48]

Yes, my low humming varies in intensity. At first, it was very distracting. But after reading so many stories of people habituating to tinnitus, and after experiencing habituation myself with my original dentist drill–like tinnitus in my right ear (which at first triggered nonstop daily panic attacks), I believe it can happen again, as long as I focus on living my life as normally as I can.

So I tend to ignore it and let time work its own kind of healing through habituation, and it surely does. Nowadays, I can go through the day without noticing it much, unless I'm talking about the subject of tinnitus.

 

[Sydnears]

Yes, my low humming varies in intensity. At first, it was very distracting. But after reading so many stories of people habituating to tinnitus, and after experiencing habituation myself with my original dentist drill–like tinnitus in my right ear (which at first triggered nonstop daily panic attacks), I believe it can happen again, as long as I focus on living my life as normally as I can.

So I tend to ignore it and let time work its own kind of healing through habituation, and it surely does. Nowadays, I can go through the day without noticing it much, unless I'm talking about the subject of tinnitus.

One more question, if you don't mind. Did the hum change? You mentioned earlier that it was living, oscillating, and irregular. For me, this is the hardest part. If it were a steady tone or hum, I wouldn't mind as much. Did yours change over time, or is it still the same?

 

[billie48]

It changes in both intensity and quality. Sometimes the humming feels like it is wrapped in water in my left ear, similar to the sensation after swimming. Other times it becomes very sharp and intense.

After so many years, though, my brain and nerves have hardened to it, and it no longer scares me the way it once did. That allows me to focus on living and enjoying life—fishing, gardening, playing badminton, traveling, and even ballroom dancing with my wife.

I never thought I'd be able to do these things back when it was at its worst. So never say never. You need to give it time and try to live life as normally as possible.

 

[Sydnears]

They found a papillary edema in my right eye and to rule out different illnesses, they did a lumbar puncture on me. I asked for potential side effects, but was only told that I might get a mild headache.

Instead I got a handicapping headache, nausea, different kinds of tinnitus, dizziness, some hearing loss in one ear, had difficulty swallowing... I asked for a bloodpatch after a couple of days, but they told me to just rest and it would get better. A week after the lumbar puncture, my husband drove me to the ER, since I was just getting worse, and they did a blood patch immediately.

I hear high pitch noises, what I guess people mostly think of when you say "tinnitus". The worst is a low pitch oscillating noise, kind of buzzing and at the same time it feels like my ears are vibrating/fluttering... It's a very "living" noise, because sometimes it's fast and sometimes the oscillating slows, like it's being stretched, hard to explain...

The papillary edema they gave me three days of IV Solu-Medrol (cortisone) for about a month after the lumbar puncture. The low pitch noise with the vibrations/fluttering went almost completely away that week, as some sort of side effect... Then it has slowly come back week by week. The high pitch noises have stayed the same.

Doctors I've met here so far are very blasé and tells me to just wait and it will "probably" resolve on its own and prognosis is good after a lumbar puncture. Or I'll learn to live with it.

I am autistic and very dependent on silence for mental recovery in daily life.

I had absolutely no tinnitus before the lumbar puncture. I moved out to the countryside eight years ago to really be able to enjoy the silence, and that I have. Until now...

Forgot to mention that the hearing loss was restored when I got the bloodpatch. I have done three audiograms since and they said my hearing is even better than expected in my age (I'm 40). I have always taken great care of my ears...

Do you still have your "living" low hum? I developed the exact same thing after an ear infection.

 

[Reverse]

Do you still have your "living" low hum? I developed the exact same thing after an ear infection.

It is mostly gone now. A couple of years in, it started taking breaks every so often, and for almost a year it has been quiet most of the time, with only the occasional bursts when it comes back.

I live in the countryside, so I know what real quiet sounds like. It is not just habituation. When it is gone, I cannot hear it no matter how hard I try. Maybe it will disappear completely someday, who knows.

It is still very distracting and terrible when the humming starts again, but what keeps me sane is that it goes away at times, and those quiet periods have become longer and longer over the years.

 

[Jammer]

It is mostly gone now. A couple of years in, it started taking breaks every so often, and for almost a year it has been quiet most of the time, with only the occasional bursts when it comes back.

I live in the countryside, so I know what real quiet sounds like. It is not just habituation. When it is gone, I cannot hear it no matter how hard I try. Maybe it will disappear completely someday, who knows.

It is still very distracting and terrible when the humming starts again, but what keeps me sane is that it goes away at times, and those quiet periods have become longer and longer over the years.

You're lucky, amigo.