What They’re Saying About Tinnitus on Facebook

I have tinnitus – badly. For five years it has been my constant companion, the one thing that I can count on to be there for me at every moment.

But if I manage to forget about it, a Facebook alert that someone is posting about their constant companion, brings mine back to front of mind.

My tinnitus – or T, as people like me often refer to it – is a fickle beast; it whoops and hollers, whooshes and screeches, hisses and bitches. Very seldom, actually never, do I have a simple ringing bell in my ears. No, mine is like a symphony played by demons with no musical training – off key, discordant, with drumbeats changing rhythm every few seconds. And so that I don’t get bored, every so often a demon gives that stupid triangle thing a good whack for a high-pitched dingety-ding-ding!

I have somatosensory tinnitus as well as hyperacusis (this is not a good combination). This means that muscle movement or being startled or loud sounds can spark my tinnitus and hyperacusis,which make every external sound much louder.

I belong to several tinnitus groups on Facebook, which are populated with thousands of people dealing with T. I don’t follow them religiously, but occasionally I’m hooked by a FB alert: “Has anybody here tried this…”. I’m a sucker for those posts, as are most people who have T. I start reading with a heartbeat of hope, only to finish with “sure, yeah, right.”

If you don’t have tinnitus, it’s hard to appreciate its impact or how far we’re willing to go for something resembling a cure. We will try anything. We have medicine chests filled with supplement bottles. We’ve tried any number of processes which have not solved the tinnitus puzzle. We don’t know how to fix this condition and most of us don’t know what caused it, because modern science hasn’t yet solved it, either.

Facebook groups fill a void created by modern science that has so far made little progress in offering universal relief for tinnitus. A great deal of research is taking place, which excites me. I believe that in the not too distant future, we will be  liberated from of our head noise – perhaps through technology, or medicine or a combination of the two. But until the time when our physicians say, finally, “Hey, I’ve got fantastic news for you!”, Facebook groups are our outlet for fear and frustration and even hope.

Many people post, “Hi, I’m new, thank you for letting me join this group. I’ve had T for 80 days now, and I’m going nuts. Any suggestions?” And then many people respond, most of them not even trying to answer the question, but simply to commiserate: “Me, too. I hate it.” Some make soothing and even helpful suggestions, while others err on the side of misinformation, by assuming that everyone’s T is the same as theirs.

But then there are the ones that stop your heart every time. These are the people who make it clear they’re slowly going mad, and occasionally someone tells us they simply can’t go on.

When a  Facebook post like that appears, everyone jumps on it. It’s nothing to see 150 comments appear within a short period of time. They offer words that try to support and to calm down the person who feels desperate enough to end their life. They give shoutouts to the person in pain: “Hang in there!” “Please talk to your doctor for your depression.” “It can get better, please try!”

Most people just want to ask questions, to denounce fake “cure your T” supplements, or to share success stories. And many people do experience  a lessening or quieting of their head sounds. According to people posting on a tinnitus Facebook group, my tinnitus should disappear or lessen if I use any or all of the following:

• Herb and mineral supplements such as melatonin, zinc, gingko biloba, magnesium, vitamin B12, coffee, herbal teas, CBD oil, and various commercial blends involving some of all of these
• Thrumming and snapping my thumbs at the back of my head
• Earplugs, especially the odd-looking ones
• Drinking more coffee
• Drinking less coffee
• De-stress with exercise
• De-stress some more with meditation
• Sound therapies
• Behavior modification
• Get more sleep
• Reduce alcohol **
• Drink wine
• Pull up your earlobe, hard, five times in quick succession.

(Disclaimer: I added in the wine thing because I like wine and, in moderation, it doesn’t spike my tinnitus.)

Some of these items may help, and I think the ones that don’t should be obvious. This is my experience and if you have T, don’t make assumptions about another person’s pain – we are all different.  But the first goal of everyone impacted by tinnitus  is to reduce our related anxiety, and there are many ways to do this. The second objective is learning to shift our focus away from tinnitus to other things – conversations, a movie, a hike, etc. Anything that moves our attention away from our own heads. 

Social media offers a mishmash of misinformation and truth. If you are on Facebook Tinnitus groups, I hope they give you support and comfort. But, when you can, take a moment to encourage others to look outward, to more positive things beyond our (you-know-what).