Looking for help and advice from everyone on this forum! This problem started 4-6 months after I had my 4 wisdom teeth extracted. The symptoms started with pressure in my ear then ringing shortly after. The attacks would happen every month but started going down to every 2-3 weeks now after 4 years the attacks happen everyday about 5-10 times. The symptoms of the attack is characterized by pressure in my ears then ringing in one ear (sometimes right or left ear) which result in mostly low frequency hearing loss sometimes mid frequency. To relieve the pressure I have to open my mouth which makes a clicking noise to help relieve the pressure (which only works for 2-3 seconds) I have seen over 30 doctors by now and have seen 10+ specialists and been at 5 different hospitals in the beginning they thought it was Ménière's disease but since I've never had vertigo I believed in my opinion it was cochlear hydrops. Many of these doctors said it was all in my head and I needed a psychiatric assessment needless to say I got up and left because of there ignorance. Finally 3 months ago I went to a chiropractor clinic at the hospital and they diagnosed me with TMJ. Some of my triggers to an attack include: 1. Dairy (will cause an attack within 1-2 minutes 2. Wheat (will cause an attack within an hour of ingesting it 3. Marijuana (will cause multiple attacks very quickly also mid frequency hearing loss.. 4. 2nd hand smoke (cigarette's and vaping if I smell it my ears will ring within 2-5 minutes 5. Wearing an over the ear headset (will cause pressure fluctuations and ringing in the ears within 1 minute 6. My sex life has diminished greatly the pressure makes my ears ring 7. Lying down when trying to go to sleep in any position will make my ears ring ( very hard to go to sleep) 8. A big trigger is also the position and movement of my head.. if I'm looking straight and then suddenly look down it will cause my ears to ring After countless antibiotic ear drops and nasal sprays also countless other medications the only medication that seems to work is Valtrex 3,000 MG The Valtrex takes away almost all the symptoms which include 0 pressure in my ear at all times , an attack will only happen once a day to twice a week (it varies) and I don't have to constantly keep opening my mouth to remove the pressure. The Valtrex is only a bandaid effect with the symptoms not with the problem itself! My life has changed drastically I went from a happy person to hating myself and feeling depressed all the time because of this. Feeling alone because no body knows what's going on and can help me. I have also lost a lot of friends because there sick of hearing me complain and my family is sick of driving me to Appointments and hearing the same result. If anybody out there can help me with this by giving me advice or telling me what doctor I can visit it would be greatly appreciated! I live in Toronto Ontario. Thank you for taking the time to read this post all questions will be answered also this happen when I was 18 years of age when I got my 4 wisdom teeth extracted now it's been 4 years since this started happening
I can't offer you a lot of advice, but you will find a lot off people on this forum got relief from Anti-virals. I am not in your neck of the woods so I can't recommend a doctor. I can offer you my understanding and empathy. My symptoms started as Menieres and know they think I have migraine associated vertigo. Read the threads on this website and talk to others on this site. Your life will probably get a.lot better.
I've read everything on this forum. I would spend 16-18 hours a day trying to find medication , vitamins , Monolaurin and many other things which led to no cure or change in symptoms. The only thing that EVER worked for me was VALTREX , 2,000 MG can you recommend anything else? I would be willing to try anything at this point.
I am sure more people will chime in, but I treatment starts with less invasive to more invasive. diuretic and meclizine and a low salt diet. Anti-viral (If you read the forum brand and manufacturer make a difference) Steroid Injections Shunt Surgery Gentamicin Injections Endolymphatic sac procedure Vestibular nerve section Labyrinthectomy You can discuss these with other forum memebers and your doctor. We are all either in your boat or have been there.
No one here really has an answer to resolve symptoms entirely and across all demography. Sounds like Valtrex works. Cochlear hydrops are a symptom of Meniere’s. I’m not sure why it’s categorized separately here, sometimes. I guess all definitions are fast and loose because it’s a syndrome. I’unno. I know hydrops are sometimes used diagnostically to arrive at the, ‘syndrome’. Personally, I’m doing everything including trying to galvanize activism and community and legitimize research. I’m sure you’ve read here, no magic-bullet. Your symptoms sound a lot like mine — down to weed, laying on my back, and noticing jaw movement having effect.
I think that cochlear hydrops is where one or more of the Meniere's 4 symptoms (tinnitus, vertigo, aural fullness, and fluctuating hearing loss especially in the low frequencies). If you don't have vertigo, then you would definitely not want any of the destructive treatments such as gentamicin, nerve section, or labyrinth. They are designed to stop vertigo. Is it possible that the wisdom tooth removal was not entirely complete and left a little piece of root that has gotten a viral infection and causes the problems? Could that be why the Valtrex works for you? I don't know anything about your medical system, but this seems like one of those problems that doesn't fit completely into one single medical specialty, so they each send you packing. Can your primary care provider help you navigate? Perhaps a TMJ support group? I know there's a bit of stigma around seeing a psychiatrist, but depression walks hand in hand with this miserable condition. I found one who prescribed a low dose of wellbutrin, and it has cushioned me against the really bad lows that I had previously. You deserve to have some pleasure in your life. Good luck.
Have you seen dr derebery at House Ear in LA? She is an allergist as well as a ent. Also she does sometimes use antivirals. I have cochlear hydrops which means you have the same thing as menieres except the location of the disease causes it to affect the hearing but not cause vertigo. It can progress to include vertigo over time. Hearing loss can become permanent. Allergy treatment and antivirals put me back to normal in most respects.