Hi

[Kasandra]

I am new to this site. I have had tinnitus since 2005, and it is what you call reactive t
Does anyone here have reactive t?

 

[Jim]

Welcome Kasandra, is reactive tinnitus an actual diagnosis or just what you call yours? Yes mine reacts to exercise, every time. Mine also fluctuates like crazy for no apparent reason. One minute I can barely hear it, the next it is screaming.

 

[Markku]

I'd like to hear more from Kasandra too, but here's a little something I found:

Well, in my opinion "reactive tinnitus" is a poorly used and greatly misunderstood term, which is why I do not believe it should be used at all.

The reason I say the above is that almost everybody's tinnitus reacts to something - be it noise, stress, fatigue, waking from a nap, etc. So if we are going to use the term "reactive" tinnitus and have it mean something, everybody will have to agree what it is we are talking about the tinnitus reacting to ... and how long the tinnitus must react before it is called "reactive."

Moreover, if we are to use the term "reactive" tinnitus, then it should have some therapeutic or prognostic implication. And the only "reactive" tinnitus I know of where the "reactive" element has therapeutic or prognostic implication already has a name - kindling (or winding up or Category 4).

Finally, as we have seen on other boards time and time again, people whose tinnitus reacts to sound to any degree at all (and who have thereby labeled themselves as having "reactive" tinnitus) are of the mistaken opinion that their tinnitus is therefore "worse" than the "non-reactive" type and that they have a poorer prognosis, neither of which has ever been shown to be the case (except for Category 4). So in labelling themselves as having "reactive" tinnitus, they are essentially doing their own negative counseling.

It is for these reasons that I believe that healthcare professionals who promote or encourage the use of the term "reactive" tinnitus do the tinnitus community a considerable disservice.

Kindling/Reactive Tinnitus:
An extreme condition in which a person's tinnitus is exacerbated after exposure to mild or moderate levels of sound. This increase in tinnitus tends to last for more than a day.

PS. Welcome, Kasandra, to our community!

 

[Karen]

Hi, everyone! My name is Karen, and I'm pleased to have discovered this community.

I've had severe tinnitus since May 2010, when I took blood pressure medicine for the first time. I first took Lisinopril, then was put on Propranolol, then Toprol XL, and finally hydrochlorothiazide. I think the first drug (Lisinopril) caused the tinnitus to become severe, and the other drugs just continued it. I'm now off all blood pressure medications, and still have both pulsatile tinnitus and regular tinnitus. It is better during the day, difficult in the evening, and very bad at night when I'm trying to sleep, especially the pulsating (heartbeat sound and feeling in right ear).

I've been to several doctors, had various tests, and have not found an answer as yet. I'm hoping to find some support, and possible solutions, from this community. Thanks for being there!!

 

[Markku]

Hi, everyone! My name is Karen, and I'm pleased to have discovered this community.

I've had severe tinnitus since May 2010, when I took blood pressure medicine for the first time. I first took Lisinopril, then was put on Propranolol, then Toprol XL, and finally hydrochlorothiazide. I think the first drug (Lisinopril) caused the tinnitus to become severe, and the other drugs just continued it. I'm now off all blood pressure medications, and still have both pulsatile tinnitus and regular tinnitus. It is better during the day, difficult in the evening, and very bad at night when I'm trying to sleep, especially the pulsating (heartbeat sound and feeling in right ear).

I've been to several doctors, had various tests, and have not found an answer as yet. I'm hoping to find some support, and possible solutions, from this community. Thanks for being there!!

I don't know where Warren is, but he was a member here, haven't been online for a while. He did have pulsatile tinnitus also, and also "regular" tinnitus if my memory serves right.

PT is complicated, but sometimes treatable. Whooshers.com is a great site for all things PT. I even some time last year suggested their owner that tinnitustalk.com could have own category for Whooshers, but unfortunately they weren't interested.

But yep, night is usually the worst for all kinds of tinnitus...

I think you came to the right place; there are good folks here and we're all in this together.

 

[Karen]

Thanks, Markku! And, yes, I am familiar with Whooshers.com. Glad to know there are other "whooshers" inhabiting this community from time to time.

Regarding the articles on reactive tinnitus (above), I agree that it is pretty much universal that all of us with tinnitus react to something in our environment that can exacerbate our condition. It's hard to define, and I agree that we should probably not try to put a label on it. I know mine reacts to a lot of things; I even have trouble watching television in the evenings. Yet, sometimes, (in the mornings, for me) it isn't so bad.

I'd like to hear from others as to what their tinnitus is like, and how they cope with the day-to-day, hour-to-hour changes.

 

[Markku]

I'd like to hear from others as to what their tinnitus is like, and how they cope with the day-to-day, hour-to-hour changes.

Well as I've said, I'm fortunate that my tinnitus is pretty constant. I mean, I have two tones. But they stay almost the same always.

One tone is a high pitched ringing. The other is like clicking. Low clicking sounds. Forever and forever on repeat. The clicking sounds are lower in volume, thus I don't hear that in environments rich in sound.

I do also have the fleeting tinnitus phenomenon. Every once in a while, like a couple times a week a noticeably higher volume high pitched ringing appears from nowhere, related to no apparent situation, can happen anytime, anyplace. It only lasts for a maximum of 20 seconds or so and then it's back to that usual tinnitus.

It's really unfortunate that there aren't more people with pulsatile tinnitus here. Even though PT is rarer than normal tinnitus, there are lots of people out there with PT. If you happen to stumble upon anyone with PT who'd like a good support community, you are very welcome to ask them join us.

 

[Karen]

Thanks for sharing, Markku! The clicking sound must be annoying; it's good that you can drown it out in sound-rich environments. I have the high-pitched ringing, too, so I can totally relate to you on that. It is almost electrical in nature. I also have that occasional phenomenon when a new tone comes "out of nowhere" for just a few seconds. It's as if a change in barometic pressure, or something similar, causes that to happen. Very strange!

Yes, I wish there were more people on here with pulsatile tinnitus, and would certainly recommend this community to others. As you have probably read, pulsatile tinnitus may be curable in some cases. I've had the usual tests (MRI, CT scan, carotid artery screening), and nothing was found. I still haven't given up hope, and would enjoy sharing/communicating with others who have this condition.

I'm very glad to have found this community; everyone is very caring and supportive!

 

[Don H]

Hi guys, there are some treatments, operations to help with the pulsatative T. It's your body telling you it's alive and well. I would continue to look for blood pressure medication alternatives and/or doses. could your Doc "turn down" your prescription a bit. I would be curious too see if the T changes at all if you take your meds at a different time of day. On a scientific note, my wife told me today that the first hand held calculator sold to the public was in 1971, weighed one pound and sold for $395. Look how amazing far we have come in 40 years! I'm convinced we will have PROFOUND medications for T in a few years. the pieces to all the brain puzzles are falling into place, alzheimers. epilepsy, parkinson's, etc.