I've been to many ENTs, Chiropractors, Holistic doctors, Acupuncturists, MD's, GP's, and Endocrinologists. My form of tinnitus is in the brain. My hearing is perfect. The volume ranges from 3 (annoying but ignorable) to a 10 (I don't want to live anymore). The primary frequency sits at 8.3 KHz. At times, there can be up to 3 tones in my head at the same time, and it/they move from ear to ear. For those of you with incurable brain-generated tinnitus, I have a couple tips to maybe help get you to the other side.
It WILL get better. I mean it. If you are new at this, you need to realize, from someone who's had this and had thoughts of suicide (me), that your brain is an amazing organ that is capable of change. Even though you wake up at 12:56 PM with a siren in your head that makes you pray for death (literally), your brain will slowly (very slowly, over months) adapt to some degree. This will help you cope, while you figure out how to deal with this life changing event that seems to be actively trying to kill you.
THE BAD
1. For me, eating makes it worse. I'm going to see a GI specialist about this. Example: if I eat raw vegetables, the volume doesn't get worse. If I eat a cheesesteak, the volume goes up significantly. Eating at night makes me sleep less. I've lost a lot of weight. Weight loss (30lbs so far) does not seem to make a difference at all, however it allows me to look forward to something, which is a critical piece of not ending yourself. You NEED to work for some kind of goal, ANY goal, and no matter how small.
2. Marijuana didn't work for me. I tried small amounts of two varieties, but instead of taking the edge off, it just made the focus…different. It's hard to explain, but it didn't help.
3. I kept a log for months with moods, reactions, times, medications, foods, and volume levels. I could not pin down a pattern or any way to change the condition. Eventually, I learned that keeping a detailed log of the thing in your life that is trying to kill you, is not a good idea. The best idea, is to NOT log it, and keep it out of your mind as much as possible. While I write this letter, I am not following my own advice, and see? All I can focus on is my condition.
4. Sleeping for long periods of time makes the volume much lower and better when you wake up. Unfortunately for us, sleep is near impossible. White noise, brown noise, and audio books help me to change focus, which helps me sleep. You are going to be up a LOT. I go to sleep at 11 PM, and I'm up for the night at 12:56P and its LOUD (odd, but the wake always seems to be the same time). That is one of the hardest things to get used to in the beginning, because before this condition, you probably slept through the night. You will need to occupy your time. Try reading Anthony Weir novels, watching TV, Movies, and Computer games. I tried a treadmill, but exercise made me physically tired, and mentally alert, and then my wife got mad because I was tread-milling at 2 AM, which makes her prone to also staying up in the middle of the night and throwing things at me. You need to accept that this non-sleeping change will be around while you figure this out. You will be missing time from work due to the lack of sleep. Be as honest as you can with work, family, and those around you - this will take some of the mental stress out of the equation.
5. Drugs - I have unsuccessfully tried Diazepam(Valium), Ambien(max dosage), Diphenhydramine, Amitriptyline, Trazodone, Gabapentin, Medical Marijuana, Street Marijuana, Flexeril, Lipo-Flavanoids, over -the-counter Tinnitus formulas and all sorts of weird herbal remedies from India. None of them helped, and they cost me a small fortune.
THE GOOD
1. Any Goal: As stated earlier, you need something to live for, something to look forward to. For me, it's losing weight. I'm going to lose so much weight, that by the time I'm done, my body will fit into a medium-sized sock and I will use it as an inexpensive sleeping bag.
2. Drinking alcohol helps. It does not make the tinnitus better, but a SMALL amount (a few ounces of whiskey-just enough to dull the edge) after work allows your brain to "not care" - which offers a break of about 2 hours. When you have 24 hours of torture, a 2 hour break per day is amazing. Having too much alcohol and getting drunk will make the volume worse the next day.
3. KLONEPIN is the only drug I found that helps this condition - A LOT. I take 1mg at 7:30 PM, and it gets me to sleep. Although it doesn't actually fix the tinnitus, it allows me to more effectively focus my brain around the noise, and unlike the other medical solutions I've tried, this one allows me to stay sharp.
4. THE POSSIBLE FIX: There is a new, FDA approved device called the LEVO. It has had success in Europe for the last 2 years, and Canada for the last year. It's an iPod with special software and custom earbuds that pumps the bad frequency back into your brain at night while you sleep. This process is called habituation. As an example, think of your nose. Everyone on the planet should be able to see their nose all the time. We don't, because our brains have blocked it out. If you focus, you can see your nose, but other than that, we just bypass it and look at Reddit instead. Hearing can work the same way. Although tinnitus cannot yet be cured, the brain may be able to ignore the bad frequencies. LEVO isn't cheap, the device, and a years' worth of ENT visits is $4000, but my insurance is telling me it's covered as DME under an E1399 Class 2 Medical Device (ICD-10 Tinnitus H93.13). I can't confirm as I have not yet been reimbursed. After months of research, this is the best solution I could come up with, for me. I wish you all the best.
It WILL get better. I mean it. If you are new at this, you need to realize, from someone who's had this and had thoughts of suicide (me), that your brain is an amazing organ that is capable of change. Even though you wake up at 12:56 PM with a siren in your head that makes you pray for death (literally), your brain will slowly (very slowly, over months) adapt to some degree. This will help you cope, while you figure out how to deal with this life changing event that seems to be actively trying to kill you.
THE BAD
1. For me, eating makes it worse. I'm going to see a GI specialist about this. Example: if I eat raw vegetables, the volume doesn't get worse. If I eat a cheesesteak, the volume goes up significantly. Eating at night makes me sleep less. I've lost a lot of weight. Weight loss (30lbs so far) does not seem to make a difference at all, however it allows me to look forward to something, which is a critical piece of not ending yourself. You NEED to work for some kind of goal, ANY goal, and no matter how small.
2. Marijuana didn't work for me. I tried small amounts of two varieties, but instead of taking the edge off, it just made the focus…different. It's hard to explain, but it didn't help.
3. I kept a log for months with moods, reactions, times, medications, foods, and volume levels. I could not pin down a pattern or any way to change the condition. Eventually, I learned that keeping a detailed log of the thing in your life that is trying to kill you, is not a good idea. The best idea, is to NOT log it, and keep it out of your mind as much as possible. While I write this letter, I am not following my own advice, and see? All I can focus on is my condition.
4. Sleeping for long periods of time makes the volume much lower and better when you wake up. Unfortunately for us, sleep is near impossible. White noise, brown noise, and audio books help me to change focus, which helps me sleep. You are going to be up a LOT. I go to sleep at 11 PM, and I'm up for the night at 12:56P and its LOUD (odd, but the wake always seems to be the same time). That is one of the hardest things to get used to in the beginning, because before this condition, you probably slept through the night. You will need to occupy your time. Try reading Anthony Weir novels, watching TV, Movies, and Computer games. I tried a treadmill, but exercise made me physically tired, and mentally alert, and then my wife got mad because I was tread-milling at 2 AM, which makes her prone to also staying up in the middle of the night and throwing things at me. You need to accept that this non-sleeping change will be around while you figure this out. You will be missing time from work due to the lack of sleep. Be as honest as you can with work, family, and those around you - this will take some of the mental stress out of the equation.
5. Drugs - I have unsuccessfully tried Diazepam(Valium), Ambien(max dosage), Diphenhydramine, Amitriptyline, Trazodone, Gabapentin, Medical Marijuana, Street Marijuana, Flexeril, Lipo-Flavanoids, over -the-counter Tinnitus formulas and all sorts of weird herbal remedies from India. None of them helped, and they cost me a small fortune.
THE GOOD
1. Any Goal: As stated earlier, you need something to live for, something to look forward to. For me, it's losing weight. I'm going to lose so much weight, that by the time I'm done, my body will fit into a medium-sized sock and I will use it as an inexpensive sleeping bag.
2. Drinking alcohol helps. It does not make the tinnitus better, but a SMALL amount (a few ounces of whiskey-just enough to dull the edge) after work allows your brain to "not care" - which offers a break of about 2 hours. When you have 24 hours of torture, a 2 hour break per day is amazing. Having too much alcohol and getting drunk will make the volume worse the next day.
3. KLONEPIN is the only drug I found that helps this condition - A LOT. I take 1mg at 7:30 PM, and it gets me to sleep. Although it doesn't actually fix the tinnitus, it allows me to more effectively focus my brain around the noise, and unlike the other medical solutions I've tried, this one allows me to stay sharp.
4. THE POSSIBLE FIX: There is a new, FDA approved device called the LEVO. It has had success in Europe for the last 2 years, and Canada for the last year. It's an iPod with special software and custom earbuds that pumps the bad frequency back into your brain at night while you sleep. This process is called habituation. As an example, think of your nose. Everyone on the planet should be able to see their nose all the time. We don't, because our brains have blocked it out. If you focus, you can see your nose, but other than that, we just bypass it and look at Reddit instead. Hearing can work the same way. Although tinnitus cannot yet be cured, the brain may be able to ignore the bad frequencies. LEVO isn't cheap, the device, and a years' worth of ENT visits is $4000, but my insurance is telling me it's covered as DME under an E1399 Class 2 Medical Device (ICD-10 Tinnitus H93.13). I can't confirm as I have not yet been reimbursed. After months of research, this is the best solution I could come up with, for me. I wish you all the best.
Member
Humor helps too!!
. But I go back to sleep. Actually after ten years I only sort of perfected this mixture in the past few months. However I'm considering kicking the Diazepam. 
