Ringing in ears

[meadowlark]

Does anyone else have a 24/7 ringing in the ears? (At times it is more of a roar, and at its worst, a whine.) For me, this is very pronounced during periods when my blood pressure is at its highest (180s), but since I developed unpredictable blood pressure (right now it's completely normal), it has always been present. Often, I think it will drive me insane--white noise at its worst.

Am I nuts?

 

[Calathea]

Why should you be nuts because you have tinnitus? It's a relatively common problem. I don't have it full-time, but it's been through some bad patches. My tinnitus is vascular, and it sounds like yours may be as well. Have you tried going to a tinnitus clinic?

 

[maddietod]

I've had this my whole life. It doesn't fluctuate, and I can locate the note on the piano.

 

[Sparrow]

I have this too, except mine is the ringing kind rather than the roaring kind. Many different tones. It gets a bit louder for brief periods now and then, for no reason I've yet been able to figure out.

I had a couple of really bad patches where mine got crazy loud temporarily (very unusually, painfully loud) and then left me with some permanent hearing loss. I'm not suggesting that will happen to you, just wondering if maybe there could be some connection between my own problems and blood pressure or other CFS symptoms. I find it just too strange to be having all these crazy symptoms and not have them be connected. I just hadn't yet been able to figure out what the connection is.

 

[jstefl]

I too have had this problem since my CFS started 21 years ago. The worse I feel, the louder it gets.

i am wondering if anyone has managed to find a cure. It seems like the least of my problems, but I would be interested in a simple fix , if there is such a thing.

John

 

[justy]

I get the ringing too - although only when i am crashed down - other times it goes away completely. The whooshing or roaring in the ears is supposed to be a symptom of high blood pressure, i get the whooshing, especailly when bending over, but i have very low BP - usually about 90/55 these days ( and thats at the hospital which is stressfull) i asked my Doc about the whooshing and he just shrugged (helpful!)

 

[Ema]

This can sometimes be related to hypothyroidism as well. Just make sure to check FT3, FT4 and RT3 along with TSH as many people can have subclinical hypothyroidism that will be missed by only testing TSH. I've known a few people whose tinnitus symptoms have resolved once on an appropriate dose of thyroid meds.

 

[Calathea]

I forgot to mention that mine is pulsatile tinnitus, which I love as a name because it just sounds so seedy. It's a sort of whining noise that's in time with my pulse, it was originally set off by flu, and while it can recur randomly, including when I get tired or dizzy, it gets particularly worse when I have a cold. I was told my the hearing therapist that tinnitus is either caused by deafness or it's psychological, which is nonsense as mine is vascular, and shows you how little some people know about it. She gave me in-ear white noise generators to tackle the tinnitus and the hyperacusis, and the course of treatment actually helped reasonably well. You could probably do the same thing using an MP3 player, earbuds and a recording of white noise, gradually increasing how long it was on for every day. If you look at the RNID's website, they have a tinnitus section and I think they have a tinnitus helpline too.

 

[Sallysblooms]

It is so common. I have had it for years. I got it after the operation to my head, my middle ear. It did bother me a lot for a while, then got used to it. It is worse with allergies or a cold.

 

[meadowlark]

Many thanks for all the advice. I don't know how the idea of tinnitus slipped through my fingers. My doctor and cardiologist just smile at me politely when I bring this up, and over the last month my other symptoms have been so painful that I did begin to wonder if I was imagining it. I'll use the word "tinnitus" with my doctors next time, and tell them that it's common in ME/CFS. Break the wall of disbelief, god willing.

It does seem logical that mine would be vascular.

 

[Tristen]

For me, tinnitus has been a major symptom of this illness 24/7 for at least the last 10 years. It fluctuates in severity with the other symptoms. If in a crash, the noise is horrendous. When feeling better, it's just a dull buzz. Visual disturbance also fluctuates with the illness. All CNS symptoms do.

 

[L'engle]

I've always had it but I can only hear it when there's no background noise. Occasionally there have been additional tones to it but it's usually just the same one that's been there for as long as I can remember.

 

[PokerPlayer]

I just got it after visiting las vegas. I must have been sensitive to some toxin in the environment is my guess. Anyway, I all of a sudden got SEVERE ringing in the ears, and untreated it didn't go away. Severe depression and anxiety came with it. So far I am using gabapentin and it has taken it down about 50%, so that is nice, not great. I got a prescription for lamictal so maybe that will help more. I have heard anti convulsant can possibly help, and benzos as well.

 

[maddietod]

Meadowlark, I think it's common in general, not just in ME/CFS.

 

[Sallysblooms]

Yes, common.

 

[chili]

I've had tinnitus too since the start of the illness. It is ringing, bilateral, and increased with exertion, and improved somewhat with sleep.

 

[dannybex]

I've had it off and on for years...even before CFS, very faint and high pitched. Think it's related to circulation/blood flow issues, and possibly low blood volume. Mine gets worse if I take fish oil...the volume goes waaaay up. No matter the brand...

 

[fla]

I've had it off and on for years...even before CFS, very faint and high pitched. Think it's related to circulation/blood flow issues, and possibly low blood volume. Mine gets worse if I take fish oil...the volume goes waaaay up. No matter the brand...

Tinnitus has many causes and is known to be linked with poor blood flow and with inflammation. PWME have poor blood flow and are in a constant state of inflammation so tinnitus is not a surprising symptom for us. I may try going without my Omega 3 fish oil supplement for a short while when I finish my bottle of pills to see if the volume is affected. I can save some money and observe if I get the same effect on tinnitus as dannybex has or this. The fish oil is suggested by my neurologist for cognitive function so I wouldn't want to quit it permanently.

 

[dannybex]

Tinnitus has many causes and is known to be linked with poor blood flow and with inflammation. PWME have poor blood flow and are in a constant state of inflammation so tinnitus is not a surprising symptom for us. I may try going without my Omega 3 fish oil supplement for a short while when I finish my bottle of pills to see if the volume is affected. I can save some money and observe if I get the same effect on tinnitus as dannybex has or this. The fish oil is suggested by my neurologist for cognitive function so I wouldn't want to quit it permanently.

I totally agree -- it can be caused by so many things.

But that's also why I was (and am) always surprised that at least in my case, it seems to get a LOT worse, every time I take more than one capsule of fish oil, then improves when I cut back. Perhaps I'm not getting enough of the other fats in my diet...who knows.

 

[mrpanoff]

I got it in my right ear after a damned car horn went off right near me.
It's of the same frequency as the horn was so I'd guess the acoustic trauma killed certain cells in the cornea.

Perhaps it could have healed over with the lapse of time if I hadn't had ME. Even the slightest scratch leaves a scar now.