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Letter to a T sufferer - Meds, Triggers, Coping
McMurdo
Here's a letter I wrote to a music professor whose T seems to be getting worse. I'm mainly posting it not to be read but for the info to be accessible when people do a search in the above search box on a particular topic.
_________________
Hi XYZ,
I'm so sorry to hear your T is getting worse. My T onset was quite sudden and VERY shrill and loud. It was scary and depressing, so I understand where you are coming from about it being scary that yours is getting louder. I had to go on anti-anxiety meds for awhile, which isn't uncommon with people with bad T. I even had to stop working for three months (I work freelance), because I couldn't concentrate on my work. I went to 10 PCPs, ENTs, Neuro-ENTs, and psychologists from here to as far away as six hours from me.
First, the good news: If your T is consistent each day (doesn't change much in volume, pitch, or tone), you will likely get used to it over time. More good news is that the ENT may find a reason for your T that is fixable. Or it might be that you are experiencing some hearing loss and a hearing aid will help, especially one that includes a white noise or water noise in them you can play on days your T is bad. (Hearing aids will often make T less noticeable, and white noise is especially soothing to T sufferers.) Also, you can find support at the Tinnitus group at DailyStrength.org. The American Tinnitus Association also has a helpful site. TinnitusTalk is another site with support and research information. The final piece of good news is your T might settle down some. It's not uncommon to have a spike that lasts for some time and then settles back down to "baseline."
Second, medical treatments, just in case you are interested: As I said, my T was really, really bad. I'm talking William Shatner bad (he is a long-time severe T sufferer). Unfortunately, there is no cure for T unless they find a medical condition causing it. With me, they did an MRI, checked allergies, and so on but found nothing. Most of the time it's related to hearing loss. I have some very high hearing loss at about 10.5kHz, and that is where my T sits...a super loud, high whine (similar to a jet engine whine when I first got it). Taking antihistamines (I went to an allergist to see if that might be causing it) only made it louder, which I didn't think was possible!
I now take two seizure medications (one for lowering volume, one for lowering pitch) to keep my T quiet most days. Seizure meds are something some T sufferers have found helpful, but it usually takes going to an open-minded psychiatrist who will look at the clinical trials and anecdotal comments you find online about various seizure meds that work for some T people. Then he will write you a seizure med to try. Most ENTs and MDs will not do that except for the mild med Gabapentin (a common seizure medication used for all kinds of things, like nerve pain, anxiety, and so forth) and a few other things. Gabapentin DOES help some T sufferers, so if you get to that point, you might ask your doctor about giving it a try. It usually work better when used with a tiny amount of an anti-anxiety med (such as Klonopin or Xanax) and/or a TRICYCLIC (not an SSRI) depression med usually used for sleep or back pain, such as Amatryptaline or Nortryptaline. Tetracyclics are also safe. None of these meds will make your T worse. (Some antidepressants CAN make your T worse, but not a tricyclic.)
Oddly, Klonopin can cause people without T to have T while they are on it, but for those of us WITH T, it quiets it. Dr. JKL (the ENT at church) and I had a little discussion about this once and he said it's one of those "medical mystery" things. I have also talked to Dr. JKLabout one of the seizure meds I take (Mysoline - but only Qualitest brand...other generic Mysoline didn't work for me! So weird.), and he seemed curious about how it has helped me. I also take Trileptal because it lowers the pitch. Some people feel dopey on seizure meds, but I seem to do fine of them.
My one warning about Klonopin is if you have an addictive personality (I don't), you can get a bit hooked on it--but if you take it forever, I guess who cares? However, if you go off it, like I did, you might have a T spike for awhile before your T settles back down. That happened to me. My T wanted its drugs! :) BTW, Xanax helps some people with T but not me. It made me less anxious but did nothing to lower my T.
I'm not trying to push meds on you--I was a very "I don't want to take any meds" until I developed severe T. Hopefully, you aren't at the point where you are feeling desperate like I was, but gabapentin is relatively harmless if you just want to see if it helps. Dr. JKL knows well about my suffering with T and knows that Gabapentin and Klonopin helped me. I don't take the Klonopin anymore, but I still take a little bit of Gabap and Nortryp before bed. When I do, I generally seem to have a quieter day the next day most of the time--probably five days a week. Of course, I also take other seizure meds now that I discovered some that enrich the GABA in the brain...a known benefit to many people with T.
L-Tryptophan (the stuff in turkey and other foods but available in pill form) before bed (this also enriches GABA in the brain) helps some people, too. Now they are saying probiotics with Lactobacillus rhamnosus in it helps brain GABA, too! It may be worth a try. :)
One last thing about meds: some docs will try steroids for hearing loss and/or T. I went that route and it helped for a bit, but it didn't last. I've never heard of a success story with steroids for T, and I read about T all the time, and have been doing so for four years. My audiologist in Dallas said she never heard of a success story with T and steroids either. and she works only with T patients at the Callier Tinnitus and Hyperacusis Center.
Finally, coping skills: My biggest advice is to never be in silence. This is called "sound therapy" and the idea is over time you will get used to noise, including your T. I work from home and have the radio on all the time. I used to love silence, but I have to admit that being in noise all the time has helped me cope with my T better. Also, always try to keep yourself distracted or working on something. I admit this is a really a pain--it's hard to be busy all the time! But working at listening to/focusing on things around you other than your T (like work or a movie) does help you habituate more quickly to your T (esp if your T is the same every day--sadly, mine fluctuates from day to day).
Water noises are SUPER helpful to people with T, so if you have a white noise machine with water sounds on it, you can play either the white noise or the water noises. (Mine has a rushing stream I like, and also a falling rain sound.) I slept with mine on every night for years, or with ear buds attached to a computer playing water noises on my bed stand, using a site like this: http://mynoise.net/NoiseMachines/rainNoiseGenerator.php?c=0&l=00996941244532502765 (Click on "Rainy Season" or" White Noise" in the first paragraph and set the sliders to what works best to mix with or even cover your T, depending on how loud your T is.)
My friend has a sound machine in her bedroom and one in her office. Also, some people find success in sleeping with sound pillows (you can find them on Amazon). Some of them have a place to plug in your Mp3 player so you can play your own music. (Sleeping is generally a problem when you first get T--I don't know if you are dealing with that at all. Many people also can't take naps or they wake up with louder T. I'm one of those people, so no more naps for me!)
Other things that help some people: therapeutic grade helichrysum italicum essential oil from Young Living, DoTerra, or AnandaApothecary.com rubbed on the back of your neck (both sides of your spinal column where the nerves come out) before bed. I also ingest a little. It's super expensive, but I do think it gives me more good days, so I bite the bullet and buy it.
Eating differently: Some people notice a difference by avoiding MSG (called "natural flavor" packaged foods), chocolate (even dark), Parmesan cheese, and soy sauce. (All of these are notorious T triggers.) Others benefit by avoiding processed sugar and switching to Stevia or natural fruit sugars in their cooking, tea, and so on. I have found this helps me--I never buy anything with sugar ADDED. If it has sugar as a part of it naturally, that is fine, but if it lists sugar (or its equivalent) in the "Ingredients" section, I don't eat it.
I can't eat within three hours of bedtime. Green tea (or green tea pills) helps some people. This reduces sugar in the bloodstream--maybe that's why....no one knows. Ditto for red wine. There is some evidence that better digestion helps GABA in the brain, especially if you take probiotics with Lactobacillus rhamonsus in it. There is a connection with the disease GERD and T, so it my be worth trying this probiotic.
T is just a weird, relatively not understood problem. They do know it comes from the brain, not the ears (from the hypothalamus, just like Epilepsy, Parkinson's, and Alzheimer's do). That's probably why I have found that seizure meds help me. (I tried Parkinson's meds for awhile because a fair number of people reported success with it, but I didn't do well on it, so I stopped).
T is also often unique to each person---some people hear a hiss, some a buzz, some a sizzle, some locusts, some more in one ear than the other, some "hear" it in the middle of their brain. For some people it's a high pitch, some a low pitch. Some people have it really loud, some not, and for some it fluctuates in volume from day to day. Lucky me, I have all of these--I never know what to expect from day to day! That makes it harder to habituate to.
Also, because T is unique to each person, so are the things that work for each person. Some things work for some people, some don't.
I also paid the big bucks and bought white noise generators from my audiologist (like hearing aids that sit on your ears) and that got me through my first awful year. Your brain notices the white noise and not the T and it's VERY soothing and calming. I still use them on very, very bad T days. The white noise "mixes" with your T sound. Interestingly, it doesn't affect your hearing at all--you can hear just fine with them. You can adjust the volume based on how loud your T is that day. These generators are used in "Tinnitus Retraining Therapy" to help people get used to their severe T.
Sorry this is so long(!!), and I'm sorry for any typos--I'm not going to go back to proofread, so I'm sure there are plenty! I imagine I gave you much more than you ever wanted to know about T. People with T are everywhere (50 million of us in the US alone).
And don't forget to wear your ear plugs in loud noises--Professor ABC in your department has a really nice pair of musician's ear plugs.
_________________
Hi XYZ,
I'm so sorry to hear your T is getting worse. My T onset was quite sudden and VERY shrill and loud. It was scary and depressing, so I understand where you are coming from about it being scary that yours is getting louder. I had to go on anti-anxiety meds for awhile, which isn't uncommon with people with bad T. I even had to stop working for three months (I work freelance), because I couldn't concentrate on my work. I went to 10 PCPs, ENTs, Neuro-ENTs, and psychologists from here to as far away as six hours from me.
First, the good news: If your T is consistent each day (doesn't change much in volume, pitch, or tone), you will likely get used to it over time. More good news is that the ENT may find a reason for your T that is fixable. Or it might be that you are experiencing some hearing loss and a hearing aid will help, especially one that includes a white noise or water noise in them you can play on days your T is bad. (Hearing aids will often make T less noticeable, and white noise is especially soothing to T sufferers.) Also, you can find support at the Tinnitus group at DailyStrength.org. The American Tinnitus Association also has a helpful site. TinnitusTalk is another site with support and research information. The final piece of good news is your T might settle down some. It's not uncommon to have a spike that lasts for some time and then settles back down to "baseline."
Second, medical treatments, just in case you are interested: As I said, my T was really, really bad. I'm talking William Shatner bad (he is a long-time severe T sufferer). Unfortunately, there is no cure for T unless they find a medical condition causing it. With me, they did an MRI, checked allergies, and so on but found nothing. Most of the time it's related to hearing loss. I have some very high hearing loss at about 10.5kHz, and that is where my T sits...a super loud, high whine (similar to a jet engine whine when I first got it). Taking antihistamines (I went to an allergist to see if that might be causing it) only made it louder, which I didn't think was possible!
I now take two seizure medications (one for lowering volume, one for lowering pitch) to keep my T quiet most days. Seizure meds are something some T sufferers have found helpful, but it usually takes going to an open-minded psychiatrist who will look at the clinical trials and anecdotal comments you find online about various seizure meds that work for some T people. Then he will write you a seizure med to try. Most ENTs and MDs will not do that except for the mild med Gabapentin (a common seizure medication used for all kinds of things, like nerve pain, anxiety, and so forth) and a few other things. Gabapentin DOES help some T sufferers, so if you get to that point, you might ask your doctor about giving it a try. It usually work better when used with a tiny amount of an anti-anxiety med (such as Klonopin or Xanax) and/or a TRICYCLIC (not an SSRI) depression med usually used for sleep or back pain, such as Amatryptaline or Nortryptaline. Tetracyclics are also safe. None of these meds will make your T worse. (Some antidepressants CAN make your T worse, but not a tricyclic.)
Oddly, Klonopin can cause people without T to have T while they are on it, but for those of us WITH T, it quiets it. Dr. JKL (the ENT at church) and I had a little discussion about this once and he said it's one of those "medical mystery" things. I have also talked to Dr. JKLabout one of the seizure meds I take (Mysoline - but only Qualitest brand...other generic Mysoline didn't work for me! So weird.), and he seemed curious about how it has helped me. I also take Trileptal because it lowers the pitch. Some people feel dopey on seizure meds, but I seem to do fine of them.
My one warning about Klonopin is if you have an addictive personality (I don't), you can get a bit hooked on it--but if you take it forever, I guess who cares? However, if you go off it, like I did, you might have a T spike for awhile before your T settles back down. That happened to me. My T wanted its drugs! :) BTW, Xanax helps some people with T but not me. It made me less anxious but did nothing to lower my T.
I'm not trying to push meds on you--I was a very "I don't want to take any meds" until I developed severe T. Hopefully, you aren't at the point where you are feeling desperate like I was, but gabapentin is relatively harmless if you just want to see if it helps. Dr. JKL knows well about my suffering with T and knows that Gabapentin and Klonopin helped me. I don't take the Klonopin anymore, but I still take a little bit of Gabap and Nortryp before bed. When I do, I generally seem to have a quieter day the next day most of the time--probably five days a week. Of course, I also take other seizure meds now that I discovered some that enrich the GABA in the brain...a known benefit to many people with T.
L-Tryptophan (the stuff in turkey and other foods but available in pill form) before bed (this also enriches GABA in the brain) helps some people, too. Now they are saying probiotics with Lactobacillus rhamnosus in it helps brain GABA, too! It may be worth a try. :)
One last thing about meds: some docs will try steroids for hearing loss and/or T. I went that route and it helped for a bit, but it didn't last. I've never heard of a success story with steroids for T, and I read about T all the time, and have been doing so for four years. My audiologist in Dallas said she never heard of a success story with T and steroids either. and she works only with T patients at the Callier Tinnitus and Hyperacusis Center.
Finally, coping skills: My biggest advice is to never be in silence. This is called "sound therapy" and the idea is over time you will get used to noise, including your T. I work from home and have the radio on all the time. I used to love silence, but I have to admit that being in noise all the time has helped me cope with my T better. Also, always try to keep yourself distracted or working on something. I admit this is a really a pain--it's hard to be busy all the time! But working at listening to/focusing on things around you other than your T (like work or a movie) does help you habituate more quickly to your T (esp if your T is the same every day--sadly, mine fluctuates from day to day).
Water noises are SUPER helpful to people with T, so if you have a white noise machine with water sounds on it, you can play either the white noise or the water noises. (Mine has a rushing stream I like, and also a falling rain sound.) I slept with mine on every night for years, or with ear buds attached to a computer playing water noises on my bed stand, using a site like this: http://mynoise.net/NoiseMachines/rainNoiseGenerator.php?c=0&l=00996941244532502765 (Click on "Rainy Season" or" White Noise" in the first paragraph and set the sliders to what works best to mix with or even cover your T, depending on how loud your T is.)
My friend has a sound machine in her bedroom and one in her office. Also, some people find success in sleeping with sound pillows (you can find them on Amazon). Some of them have a place to plug in your Mp3 player so you can play your own music. (Sleeping is generally a problem when you first get T--I don't know if you are dealing with that at all. Many people also can't take naps or they wake up with louder T. I'm one of those people, so no more naps for me!)
Other things that help some people: therapeutic grade helichrysum italicum essential oil from Young Living, DoTerra, or AnandaApothecary.com rubbed on the back of your neck (both sides of your spinal column where the nerves come out) before bed. I also ingest a little. It's super expensive, but I do think it gives me more good days, so I bite the bullet and buy it.
Eating differently: Some people notice a difference by avoiding MSG (called "natural flavor" packaged foods), chocolate (even dark), Parmesan cheese, and soy sauce. (All of these are notorious T triggers.) Others benefit by avoiding processed sugar and switching to Stevia or natural fruit sugars in their cooking, tea, and so on. I have found this helps me--I never buy anything with sugar ADDED. If it has sugar as a part of it naturally, that is fine, but if it lists sugar (or its equivalent) in the "Ingredients" section, I don't eat it.
I can't eat within three hours of bedtime. Green tea (or green tea pills) helps some people. This reduces sugar in the bloodstream--maybe that's why....no one knows. Ditto for red wine. There is some evidence that better digestion helps GABA in the brain, especially if you take probiotics with Lactobacillus rhamonsus in it. There is a connection with the disease GERD and T, so it my be worth trying this probiotic.
T is just a weird, relatively not understood problem. They do know it comes from the brain, not the ears (from the hypothalamus, just like Epilepsy, Parkinson's, and Alzheimer's do). That's probably why I have found that seizure meds help me. (I tried Parkinson's meds for awhile because a fair number of people reported success with it, but I didn't do well on it, so I stopped).
T is also often unique to each person---some people hear a hiss, some a buzz, some a sizzle, some locusts, some more in one ear than the other, some "hear" it in the middle of their brain. For some people it's a high pitch, some a low pitch. Some people have it really loud, some not, and for some it fluctuates in volume from day to day. Lucky me, I have all of these--I never know what to expect from day to day! That makes it harder to habituate to.
Also, because T is unique to each person, so are the things that work for each person. Some things work for some people, some don't.
I also paid the big bucks and bought white noise generators from my audiologist (like hearing aids that sit on your ears) and that got me through my first awful year. Your brain notices the white noise and not the T and it's VERY soothing and calming. I still use them on very, very bad T days. The white noise "mixes" with your T sound. Interestingly, it doesn't affect your hearing at all--you can hear just fine with them. You can adjust the volume based on how loud your T is that day. These generators are used in "Tinnitus Retraining Therapy" to help people get used to their severe T.
Sorry this is so long(!!), and I'm sorry for any typos--I'm not going to go back to proofread, so I'm sure there are plenty! I imagine I gave you much more than you ever wanted to know about T. People with T are everywhere (50 million of us in the US alone).
And don't forget to wear your ear plugs in loud noises--Professor ABC in your department has a really nice pair of musician's ear plugs.
I need to check out the medical part you wrote on. I took 10mg. of Elevil a few weeks ago and ended up with "exploding head syndrome". It was like an auditory siezure, harmless but quite terrifying. My T is like yours in that it changes all the time and habituation is very difficult. Not to mention all the dizziness at night..anyways thanks again, your are so knowledgable. Rose
I'm so sorry you have the variable T. It really IS a pain to get used to all the sounds it can make, not to mention the variety in volume and location! I've gotten used to some but not all of the sounds. I'm also really sorry you deal with dizziness at night. Dizziness is just so UGH!! That is a really hard thing to deal with, esp on top of T. :/
Rose
Bob
You are also right that docs seem, for the most part, unsympathetic. Only my psych cared enough to try to help! My audiologist at the Callier Center for T and H in Dallas was sympathetic to a degree, but she sees T and H people all day so I'm sure it gets a bit old for her.
And like you, Loaa...I miss silence! :/
You are spot on about eliminating harmful food additives. I also have gotten off most medication. Not everyone can do that, but I'm healthy, and I believe that my tinnitus is less loud because there's less to aggravate it.
I'm resigned to there not being a cure in my lifetime. But it's reinforcing to read what you have done and reported on and to know that I'm on a good path for dealing with tinnitus.
Thank you,
Kasandra