New to the Forum, Looking for Support

[rasmyth]

Hello all!

I'm relatively new to to forum. I've come in search for some support as I don't personally know anyone with tinnitus. My tinnitus began 5 years ago now, when I was 20. It was probably no great surprise as I suffered from many ear infections as a small child which eventually led to my left eardrum bursting. As a result I am left with a hole in that eardrum and scarring on the right eardrum. I've had MRI scans and plenty of hearing tests but the scarring and hole in my eardrums is the most likely cause, according to the specialists.

From what I gather, many of you, like myself, found the first few months very difficult. The sounds my ears were making kept changing and I found sleep very difficult. My tinnitus eventually settled on a low buzzing/humming noise (I think it may be pulsatile). Sometimes when it's really bad I feel like I have pressure around the lower back of my skull.

I have come to terms with having this condition for the rest of my life, I just pray that it won't get worse than it is now. I don't particularly want to take medication for this and have so far resisted any suggestion of antidepressants etc. I think accepting it and trying not to panic is the best way forward for me (though it is a vicious circle!). A huge lifesaver for me has been my sound pillow (http://www.soundoasis.com/products/sleep-sound-therapy-systems/ for any UK/EU based sufferers), it helps me mask the sounds.

I didn't mean for this to end up quite so long but I guess my main question is, what kind of things do people do when they are having a particularly bad 'episode'?

Many thanks for reading!

Rasmyth

 

[Karen]

Hi, Rasmyth, and thanks for your very nice introduction. I'm so sorry you have this condition, but it sounds like you've taken some steps in the right direction in learning to live with it.

Like you, I resisted taking any prescription drugs at the outset of my tinnitus, and I'm so glad I did! Now, I take natural supplements, and there are some that seem to help a bit, including: Magnesium chloride, niacin, and N-acetylcistene. You could consider experimenting with supplements, one at a time, to see if any of them are helpful to you.

I have pulsatile tinnitus, too, and it is harder to tune that out and live my life, but I do my best. Distraction, staying busy and mentally occupied, seems to help me the most. When I'm having a bad episode, I go outside and take a long walk. It gets me out of the silence of the house, and helps me cope. When I return, it seems to calm my T down a little bit.

I'm glad you have the sound pillow, and hope that it does help with sleep. For me, sleep seems to help calm my T down when it is at its worst.

I'm sure others will have additional suggestions for coping strategies. We're glad you've joined us. Welcome!

Best wishes,
Karen

 

[billie48]

Welcome. You have a good attitude @rasmyth, because acceptance is a powerful approach in living with tinnitus and you are doing wise to accept this reality. You show the stamina of character by accepting T, even if it means a life time. Most people freak out at the thought of this. To your credit. You will be just fine over time.

 

[buzztone]

Welcome, Rasmyth!

The sound pillow sounds like a great idea. I've considered that, but mostly I'm afraid I'll end up somewhere without it and so am training myself to sleep with the noise without the anxiety. (I also don't sleep on my left side.)

Because my T is a constant humming tone, it makes it a little easier to bear than something that "pulses" or screeches. But when I'm having a bad time, I try to do the following:

• Surround myself with people who love me and understand my condition
• Watch television or stream something silly/diverting that isn't too quiet
• Go for a drive (I'm lucky--my car's noise currently masks many of my symptoms)
• Give myself permission to turn on a fan or a heater to "mask" the sound for a little while--we can't all be habituating all the time!!

Again, welcome!

 

[Peacemaker]

Welcome Rasmyth,

I'm a Newbie, too.

The suggestions thus far are vital tools. I especially like the notion of getting outdoors, into the elements, and getting a goodly dose of nature, whether it be via exposure to animals, mere landscape, or both. Something about nature is critically therapeutic for me. Equally, simply getting out of the house regularly, period, is key for me. Reason being: those suffering from Mr. T very often have the tendency to "cocoon" (withdraw inward), and isolate, which is destructive. And, me being an introvert by nature (an "INTJ" by Myers-Briggs standards); I have to watch this tendency, and kick myself out the door (not unlike the "Minister of Silly Walks" - Monty Python).

Many years ago a Rabbi-friend introduced me to the sport of R/C Flying (remote control planes). It was very therapeutic (except for instances when eagles and hawks attacked my planes, and I had to engage a dogfight with them, or when I got too close to a tree, and thereafter watched what appeared to be 100 chicken feathers falling from the sky--pieces of my plane ).

What I later realized was that R/C flying not only forced me into the outdoors, but without realizing it I was also being constantly reminded of the BIG PICTURE--while staring up at the sky. In so doing, me and my issues where very small in that moment.

Anyhow, know that there is a large cyber-family herein, always ready to listen. Sometimes that's all one needs, for the present.

I recall that in ancient Bible times there was a man named Job. And at one point in his story of extreme and even unspeakable suffering and agony, it was said that "...his friends saw that Job's pain was so great that they simply sat down next to him, and said nothing, for days." And in this posture, there are those herein who will figuratively sit down next to you, and say nothing, while listening.

Pressing Onward