jvlgato Posted November 4, 2017 Report Posted November 4, 2017 https://geardiary.com/2017/07/25/even-h2-wireless-headphones/ My Christmas present this year! So, I haven’t been able to enjoy high end audio gear for almost three years now due to an inner ear infection which left me with high frequency hearing loss above 8khz, tinnitus, and intolerance to spl above 80db ... all only in my left ear. If you’re interested, it’s called secondary endolymph hydrops. Basically I have too much pressure of the fluid in my left inner ear. It sucks. Nothing sounds good any more. Detail in my left ear... gone. Soundstage ... gone. Anything above a minimal volume hurts in my left ear. Minimal volume which is tolerable doesn’t allow me to hear any detail. I’m hoping this headphone will let me listen again because it will tune the frequency response to my specific hearing loss and allow me to enjoy music at a low volume listening level. Fingers crossed. Also wonder if other middle agers with known or unknown hearing loss may benefit. 3
gepardcv Posted November 4, 2017 Report Posted November 4, 2017 Fascinating unit. Please post an update when you try it out. 1
skullguise Posted November 4, 2017 Report Posted November 4, 2017 Interesting concept! Best of luck John! 1
Pars Posted November 4, 2017 Report Posted November 4, 2017 Hope this works out for you John! Fingers crossed... 1
Absorbine_Sr Posted November 6, 2017 Report Posted November 6, 2017 I really hope these help you get back to music John. Sent from my iPhone using Tapatalk 1
Hopstretch Posted November 6, 2017 Report Posted November 6, 2017 Really interesting, thanks, and I hope it is a solution for you, John. 1
morphsci Posted November 6, 2017 Report Posted November 6, 2017 Hope these work out for you John and thanks for sharing the information here. Definitely subscribed to your updates. 1
Torpedo Posted November 6, 2017 Report Posted November 6, 2017 On 4/11/2017 at 2:05 PM, jvlgato said: https://geardiary.com/2017/07/25/even-h2-wireless-headphones/ My Christmas present this year! So, I haven’t been able to enjoy high end audio gear for almost three years now due to an inner ear infection which left me with high frequency hearing loss above 8khz, tinnitus, and intolerance to spl above 80db ... all only in my left ear. If you’re interested, it’s called secondary endolymph hydrops. Basically I have too much pressure of the fluid in my left inner ear. It sucks. Nothing sounds good any more. Detail in my left ear... gone. Soundstage ... gone. Anything above a minimal volume hurts in my left ear. Minimal volume which is tolerable doesn’t allow me to hear any detail. I’m hoping this headphone will let me listen again because it will tune the frequency response to my specific hearing loss and allow me to enjoy music at a low volume listening level. Fingers crossed. Also wonder if other middle agers with known or unknown hearing loss may benefit. So sorry, John. For a different reason I'm going through the very same process, with the same symptoms, even the same left ear. It started almost a month ago. If it doesn't improve a tiny bit I could be selling all my headphones, and I would ask you about those Even H2. I wish they work. 1 1
mypasswordis Posted November 6, 2017 Report Posted November 6, 2017 Good luck to the both of you, and I hope the vertigo issues are minimal as well. 2
tyrion Posted November 6, 2017 Report Posted November 6, 2017 On 11/4/2017 at 9:05 AM, jvlgato said: https://geardiary.com/2017/07/25/even-h2-wireless-headphones/ My Christmas present this year! So, I haven’t been able to enjoy high end audio gear for almost three years now due to an inner ear infection which left me with high frequency hearing loss above 8khz, tinnitus, and intolerance to spl above 80db ... all only in my left ear. If you’re interested, it’s called secondary endolymph hydrops. Basically I have too much pressure of the fluid in my left inner ear. It sucks. Nothing sounds good any more. Detail in my left ear... gone. Soundstage ... gone. Anything above a minimal volume hurts in my left ear. Minimal volume which is tolerable doesn’t allow me to hear any detail. I’m hoping this headphone will let me listen again because it will tune the frequency response to my specific hearing loss and allow me to enjoy music at a low volume listening level. Fingers crossed. Also wonder if other middle agers with known or unknown hearing loss may benefit. Sorry to hear about this John. I've been having issues with a form of vertigo, maybe related to migraine for more than a year. I also have a finding on one side similar to yours. I am finally able to go some days without almost constant nausea. Despite some improvement in that regard, I still have tinnitus in both ears to the point that I am on a 30 day trial with hearing aids that produce a white noise which my brain should adjust to and cover the tinnitus. Not sure whether it is going to work but since I get a full refund within 30 days, I figured I would try. I stopped listening to music, in particular headphones for a while. It wasn't painful but I was afraid of making things worse. I am not back to listening to speakers and headphones without an issue. With the headphones I can either take out the hearing aids or turn off the white noise as the music covers up the tinnitus. I've tried topomax (never again) and diamox for the vertigo. I find that the side effects of the meds are worse than the vertigo symptoms. Fortunately, I do not have much in the way of hearing loss other than. Certainly nothing that would justify hearing aids. 2 1
n_maher Posted November 6, 2017 Report Posted November 6, 2017 Shit, Mike, I was hoping that things had gotten better. 3
Torpedo Posted November 6, 2017 Report Posted November 6, 2017 Sorry Mike, vertigo is much worse. I just had an episode as a side effect of one of the intratympanic injections I got as a treatment, due to Lidocaine used as local anaesthesia to avoid the steroids being painful into the middle ear. The episode lasted for six hours and was really awful. If I had that on a regular basis I'd take whatever they'd feed me. The condition in my case is just affecting hearing. I can stand the tinnitus pretty well though. The worse part for me are loud and high pitched sounds becoming annoying and not sounding right. You spend your life learning to listen and to become a discerning audiophile and once you can tell good from bad all becomes bad 3
jvlgato Posted November 7, 2017 Author Report Posted November 7, 2017 (edited) 6 hours ago, tyrion said: Sorry to hear about this John. I've been having issues with a form of vertigo, maybe related to migraine for more than a year. I also have a finding on one side similar to yours. I am finally able to go some days without almost constant nausea. Despite some improvement in that regard, I still have tinnitus in both ears to the point that I am on a 30 day trial with hearing aids that produce a white noise which my brain should adjust to and cover the tinnitus. Not sure whether it is going to work but since I get a full refund within 30 days, I figured I would try. I stopped listening to music, in particular headphones for a while. It wasn't painful but I was afraid of making things worse. I am not back to listening to speakers and headphones without an issue. With the headphones I can either take out the hearing aids or turn off the white noise as the music covers up the tinnitus. I've tried topomax (never again) and diamox for the vertigo. I find that the side effects of the meds are worse than the vertigo symptoms. Fortunately, I do not have much in the way of hearing loss other than. Certainly nothing that would justify hearing aids. So sorry to hear, Mike. I remember reading some of your posts a while back and thought I should have posted something. But I couldn't find the words, being in the middle of my own problems with the same, and being so lost in it. I'm glad you were able to post here. This stuff is really hard to sort out. I saw two ENTs before the one who helped me - the first said everything looked good, she had nothing for me. The second was a specialist in neurotology and I was referred to him by the audiologist I called, to get some relief from the tinnitus, thinking I'd get a similar device to what you're trying. But she said she saw something in my hearing test that suggested something wrong to her. She set up an appointment with this 2nd ENT who was a 'specialist in hearing'. I wrote up my whole history and handed it to his nurse. He never saw this writeup that I gave to his nurse, and didn't want to find it, but he said my hearing is normal, there's nothing wrong. Everyone has tinnitus, just sit in an anechoic chamber. 'The only thing that works is the antidepressant Elavil ... so you know what THAT means' . The ear infection? 'Yes, you had a viral labyrynthitis. That will resolve in time. It can take a year - what has it been, 8 months? You only have 4 months to go.' I said nothing and nodded, but seeing the disappointment in my face, he said 'well, we could get an MRI, but it will be normal. So don't even bother coming back, I'll just call you to tell you it's normal. ' I didn't bother going back, but I also didn't bother with an MRI. I didn't have the symptoms of a tumor, and everyone I talked to agreed. A year later, having given up on the whole thing, and just figuring I'll always be dizzy, have horrible tinnitus and be in pain with every moderately loud sound I hear (movies, my dog barking, my treble-voiced daughter laughing) and I would just never hear normally again, an audiologist I worked with was willing to hear my story, and said there is definitely something wrong. I should do an extended hearing test to higher frequencies (suggested to me by Antonio a year earlier, but I had no one else to see in my original health system). She did that test herself for me on the same day. She said yes, my hearing was normal in the usual testing frequencies, but in the extended frequencies, she saw a clear hearing loss above 8khz only in the left ear, and said anyone who has one sided hearing loss and gets dizziness that's worse with loud sounds, suggests something real going on, and I should go see the ENT she trained with at Northwestern. I did that, and that's when he said I had this condition, the rare (or under diagnosed?) result of the inner ear infection I had 3 years prior. He gave me a diuretic, and this has helped immensely. Day to day, I'm so much better. I can even go to a movie without pain. My dog's bark is annoying, but not horribly painful. I can enjoy my daughter's laugh again. I still carry my ear plugs and use them at loud movies, but I might be fine if I didn't, I'm just afraid not to. I won't go to an amplified rock concert, and avoid going to loud bars. I still can't listen to my high end rig, as that still makes me feel queasy, and my left ear is uncomfortable above 80db. And it worsens the tinnitus, which is still there slightly. Plus it just doesn't sound good any more. Oh well, enough about my problems. Don't give up, Mike. Look around in your area for someone who has an actual interest in this stuff. Most ENTs are not interested. See my guy, if you want, just PM me and I'll give you his name, though I know it'd be hard to travel here just for a doctor's visit. I also found that one of the nation's leading experts on this stuff is in Chicago, Dr. Timothy Hain. He's a neurologist who specializes in hearing and dizziness, so he's an otoneurologist, instead of a neurootologist. I was going to see him next, but mine has gotten much better. Maybe I still should still see him ... but I feel like I have a good explanation and treatment at this point. Maybe it'd be worthwhile to at least read his web site. There's a lot of good information there: http://dizzy-doctor.com Keep in touch, and feel free to PM me if you want to take this offline in more detail. Or keep it here, if you'd prefer. 27 minutes ago, Torpedo said: Sorry Mike, vertigo is much worse. I just had an episode as a side effect of one of the intratympanic injections I got as a treatment, due to Lidocaine used as local anaesthesia to avoid the steroids being painful into the middle ear. The episode lasted for six hours and was really awful. If I had that on a regular basis I'd take whatever they'd feed me. The condition in my case is just affecting hearing. I can stand the tinnitus pretty well though. The worse part for me are loud and high pitched sounds becoming annoying and not sounding right. You spend your life learning to listen and to become a discerning audiophile and once you can tell good from bad all becomes bad Hang in there , Antonio! Keep in touch! Edited November 7, 2017 by jvlgato 4
mypasswordis Posted November 7, 2017 Report Posted November 7, 2017 Not trying to rant about doctors and the medical field in general or go into specific details, but I've been exactly where you have with so-called "specialists" and had a lot of doctors misdiagnose or tell me I'm fine. This seems like the case with pretty much everyone I know, with any category of ailments. In fact, the people who have claimed to specialize in certain sub-fields have generally been even worse because they are more confident about their misdiagnoses, just like with you. IMO it's always a good idea to find as many opinions as your wallet and patience will allow, because going to five doctors can easily give five different diagnoses. 2
jvlgato Posted November 7, 2017 Author Report Posted November 7, 2017 Ugh. That’s so sad to hear. Not sure where it all went so wrong for the medical field. [emoji17] 1
tyrion Posted November 7, 2017 Report Posted November 7, 2017 I forgot that I had posted about the vertigo issues. I have an ENT and Neurologist at University of Miami that both believe I have migraine associated vertigo. I had all the testing and it came out mildly abnormal. Did vestibular therapy that did help but not eliminate the problem. I don't have pain in my ears but loud noise bothers me. I do not want to take any more meds as they all seem to have side effects as bad or worse than the problem or don't seem to help. I have 2 weeks to decide whether to keep the hearing aids or return them. It seems like it is replacing one noise for another. I'm at the point where this is just my new normal and fortunately, I am able to work and do most of the things I used to do with the exception of when I can't. I have another issue that also cramps my style but again, just have to deal with it. I remind myself it could be worse and move on. It's been a shitty 1 1/2 years but despite that I've had a lot of good times so again, I try not to complain (other than the last couple of times I've posted here). John, I hope your issues continue to improve or at least become tolerable. There is a FB group for people with vestibular issues. I had to unfollow as it was too depressing to read but there is good information there as well as Vestibular Disorders Association (VEDA). 1
Torpedo Posted November 7, 2017 Report Posted November 7, 2017 Don't give up, Mike, there are plenty of medications which they can try on you, some have more adverse effects than others, and that depends a lot on individual idiosyncrasies. If you're suffering those vertigo attacks, you may find a benefit from any of them. If the vertigo went and now the problem is the hyperacusis and the tinnitus, then expected results are less encouraging, yet still worth trying. Some migraine treatments work really well on the migraine-vertigo pathologies, better than the meds you said you tried so far: acetazolamide and topiramate. 1
tyrion Posted November 7, 2017 Report Posted November 7, 2017 Thanks Antonio. I've been on both meds you listed. If I continued with topiramate, I don't believe I could have continued my job. I could not think clearly and had word loss, both are know side effects. Interestingly, when I went off it, all my symptoms were gone. That lasted about 2 months. So I felt worse on the topiramate and better once off it for a couple of months. Then tried acetazolamide for a bunch of months and didn't feel it was helping and other than keep my weight down, I was feeling sluggish and some other issues that I believe are related to the medicine. Since I've been off it, I have not seen a change for the better or worse. Other than the two months I felt better after topiramate, I am still having symptoms but not as frequent as before. I don't think hearing issue is debilitating, fortunately. I do not get vertigo attacks, although I have in the past. It's more of a dizzy feeling with nausea, kind of like feeling seasick but no vomiting (although some here have witnessed me do that unrelated to this on a few occasions).
Torpedo Posted November 7, 2017 Report Posted November 7, 2017 Yes, I understood you were on them and that they caused more problems than they solved, sorry if my wording wasn't clear and it seemed more a suggestion to try them than the expression of the two I knew you tried. Have you been prescribed other things? You definitely need a good otoneurologist or neurootologist who can help you with the dizzy feeling. Is it continuous or does it happen on attack-like episodes, are they long? Tinnitus is a whole different story, sometimes rather innocuous drugs like betahistine or ginkgo biloba extract help a lot, but at other times nothing is really helpful. Feel free to PM me, I won't be playing the online doc, but I could make some suggestions so you can ask your specialist. 3
EdipisReks1 Posted November 7, 2017 Report Posted November 7, 2017 22 hours ago, mypasswordis said: Not trying to rant about doctors and the medical field in general or go into specific details, but I've been exactly where you have with so-called "specialists" and had a lot of doctors misdiagnose or tell me I'm fine. This seems like the case with pretty much everyone I know, with any category of ailments. In fact, the people who have claimed to specialize in certain sub-fields have generally been even worse because they are more confident about their misdiagnoses, just like with you. IMO it's always a good idea to find as many opinions as your wallet and patience will allow, because going to five doctors can easily give five different diagnoses. Ugh, yeah, it happens. Apparently one neurologist I saw, who had been practicing or years, had never heard of a migraine aura, before meeting me. I mean, what the fuck? 1 1
wink Posted November 8, 2017 Report Posted November 8, 2017 I used to get severe headaches after a migraine aura which started when I was 16. Second event happened 1 month later, and the headache was worse than the first. Third episode was 2 months later and the headache was worse again. Ditto the fourth and fifth episodes at 4 and 8 month intervals The fifth episode had me looking through a severe mist for over a couple of days after with a mega headache that only lasted a few hours.. I went to the company mediic after the first episode, and he didn't believe me about the aura. I was really dreading the sixth episode as the time approached, and it came ons Saturday morning. I ended up just relaxing and waiting for the process to go through it's cycle of aura, then headache, but the headache didn't come. Since this sixth episode, the migraines come at randon times, even when I don't think I am overly stressed. I found out that with me the episodes come when I am stressed, or even after a stressful event, but not always. I usually get a feeling of mild euphoria before the aura starts out as a fuzzy spot in the centre of my vision. It then grows out into an expanding arc of white zig-zagging light until it travels beyond my field of vision. Then the headaches used to come. This arc is usually about 270 to 300 degrees, but never a full circle of light. It usually travels to the top right of my field of vision. Only once did it go to the top left. If I relax and take a few deep breaths as soon as I detect the srtart of the visual disturbance, It goes away. Once the disturbance grows to a diameter of about 25mm, it just goes through it's cycle of visual disturbance no matter what I do. The visual disturbance phase lasts for about 1.5 to 2 hours, and you know that it is still there when it is out of your field of vision. I have had a period of about 15 years without an episode, and a month where I had four episodes. 2
Voltron Posted November 8, 2017 Report Posted November 8, 2017 So sorry John, Antonio and Mike. Such good ears should not have such bad problems. I hope you each can achieve a favorable resolution (no pun intended). 1 1
jvlgato Posted November 8, 2017 Author Report Posted November 8, 2017 Thanks Antonio. I've been on both meds you listed. If I continued with topiramate, I don't believe I could have continued my job. I could not think clearly and had word loss, both are know side effects. Interestingly, when I went off it, all my symptoms were gone. That lasted about 2 months. So I felt worse on the topiramate and better once off it for a couple of months. Then tried acetazolamide for a bunch of months and didn't feel it was helping and other than keep my weight down, I was feeling sluggish and some other issues that I believe are related to the medicine. Since I've been off it, I have not seen a change for the better or worse. Other than the two months I felt better after topiramate, I am still having symptoms but not as frequent as before. I don't think hearing issue is debilitating, fortunately. I do not get vertigo attacks, although I have in the past. It's more of a dizzy feeling with nausea, kind of like feeling seasick but no vomiting (although some here have witnessed me do that unrelated to this on a few occasions).Agreed, I spend many days thinking, “well at least I can work. And I know many people who have it so much worse than this. It’s just a function of getting old. “ I also found an online forum for Menniere’s disease and other related problems. I agree it was a source of good information, and it was helpful. However, I also stopped reading it because it was so depressing.I agree that it would not be worth taking a medication that makes me feel worse, and don’t blame you for not wanting to try new ones. I will say, however, that these types of medicines take several months to start working and several months to stop working. The side effects on the other hand start immediately and end immediately. So, the fact that you felt better for a few months immediately after stopping that medicine wouldwould suggest that the medication worked, but caused side effects. The side effects stopped immediately, but the benefits continued for a few months. That happens a lot with the medications that I prescribe. Then it’s a matter of convincing the patient to find a medication that works but without side effects. It’s a challenge however, and as miserable as the other medicine made the patient feel, they often don’t really want to try. I can’t say I blame them. But with some work I usually can find another medicine that works as well as the other but without causing side effects. I hope that may be the case for you. I might also be to a point where I just have to accept a new baseline. That, along with not being able to eat and drink anything that I want and thinking my cholesterol and blood sugars won’t to go up. (Insert other old guy complaints ...) Getting old sucks. Don’t do it! 2
tyrion Posted November 8, 2017 Report Posted November 8, 2017 The alternative to not getting old, well you know how that ends. Your take on the meds is interesting and to be honest, I wished my two doctors had explained that to me. I don't think I would have stayed on Topamax but might have continued the Diamox. Stopping the Diamox was more related to minor side effects and just not feeling a big improvement. Also, forgot to mention that the Diamox made my reflux from almost never needing a Zantac to needing one daily. All that heartburn raises other problems. Like you said, getting old sucks. I went from working out pretty intensely for 4 to 6 days a week to now being limited to cardio with a limit on my how high my heart rate can go (the other issue). The neurologist wants me to try Venlafaxine but I am scared of the side effects. Thanks for the info. You and Antonio have been helpful. I'm hoping you can find something that gives you some relief. Al, thanks but good ears? Jp keeps telling me I have tin ears. I didn't think that was good. Who knew. 1
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