Good morning all, I have struggled with this disease for the past 46 years. My first attacks started when I was 14 years old (I guess I just gave my age away). I live in the Boston area, and have been seeing a specialist at Mass Eye and Ear, for years now, and have been able to cope, with taking different types of meds. The attacks have subsided, but now my latest is that it has spread to my good ear, and have been having attacks regularly again. My current hearing aids have worked extremely well over the past 20 years plus. My specialist suggested that I upgrade them, since there is amazing new technology out he said. So my question is I know there are so many different types out available now, more than there has ever been. I just don't know which one to choose. I have read some articles on the Bluetooth devices. I am still working (luckily), but can't hear a darn thing at meetings and one of the devices comes with a microphone to help with conversations (My husband is ecstatic about the possibility of that one) . Since I now have the tinnitus in both ears. I currently wear the behind the ear aids, because at the time they were the best, digital aids available, which could be adjusted, and I know that I do need new to updated aids. My insurance does not cover any cost of hearing aids, so I know that this will be an out of pocket expense. I just wanted to ask and see what other like myself are comfortable with, so I don't go in blind.... thank you all and its great to find this site. Have been dealing with this by myself for so long, it nice to know that i am not alone.
Have you been prescribed antiherpetic drugs, such as valacyclovir? The fact that the disease has jumped to your remaining good ear is ominous. The causative virus, a herpes virus, may have finally gotten into your remaining good ear and is replicating there, causing the symptoms. Harshly, but honestly, there is a strong chance the virus will eventually wipe out hair cells resulting in permanent deafness. Take the time to scrutinize all of the contemporary data on the efficacy of antiherpetic drug therapy for Meniere's, Here: http://menieres.org/talk/index.php?topic=557.0 --John of Ohio
Thank you for the information. I have just read some information on this, in the group postings. I am planning on asking my Doctor about this, since I actually have the cold sore, and eye infection herpes virus type, have had it all my life, never thought it may also effect ears. This was news to me. So I am planning to bring this up with him. I also had a concussion, when I was 10, major head trauma, which could have also triggered this I know I do need new hearing aids too... After reading some post, I have already learned more here than anywhere. Currently taking , diuretics, and and clonazepam as my doctor stated its to help control the attacks. I have been taking them awhile, and it has worked, but now the attacks are coming back, with the other ear being effected. Hearing has gone down with the other ear. Its very frustrating, I have been living with this for the majority of my life, and now getting worse. As I said will be talking to the doctor soon.
Understand, however, a large number of physicians, even ENTs at academic centers, are a) utterly ignorant of modern evidence of herpes causes of Meniere's and how antiherpetic drugs can bring profound relief, or, b) are just plainly arrogantly stubborn, unwilling to admit that what they have been preaching about Meniere's, that its causes are unknown, with no effective treatments ("Learn to live with it.") is now wrong. Don't accept any physician's statement to the effect, "Well, I just don't believe the disease is caused by a virus." If that phraseology is rendered, it's time to find another physician. Of course, as noted in the link above, it's really best to copy out the Gracek paper and get it to the doctor's office several days before an appointment, giving the good doctor time to peruse the article himself. Keep us posted on your progress. (For earlier, less lengthy periods of the disease, my treatment regimen can be helpful. Lot's of information here: http://www.zoominternet.net/~kcshop/JOH.pdf ) --John of Ohio
If your dr won't agree to antivirals, make an appt with Dr Gracek himself there at Univ of Ma. While they may not help your bad ear after so long, started early enough it can prevent further damage to your good ear...and hopefully stop any vertigo attacks. Hearing aids, I have one perfect ear and one deplorable hearing one. I only need an aid with the bad one. I have a basic/entry level model that seems to do well. My best advice is to find a good audiologist as they are the ones that make more of a difference than the cost of the aid you go with. it takes many adjustments and tweeks to perfect. i have Ativan that i place under my tongue if the room starts spinning. it shortens my attacks significantly.
The correct spelling of the doctor's name who is expert on the antiviral treatment of Meniere's is "Gacek" (no "R"). Especially because you are catching your good ear early there is a good chance you will reverse some or all of the hearing loss and tinnitus with the antivirals. I would be concerned about having Bluetooth so close to my head, but I haven't researched it specifically related to hearing aids. That is something you might want to check out. Best wishes to you, and welcome!