Hi Guys! first of all im glad to find this forum again!, right now im dealing with a lot of symptoms... and would love to take action on feeling better. the reason why im posting here is because im looking for advice / opinion of what might be happening to my ears. every comment or thought is highly appreciated (and sorry in advance... my english is not the best!) February 2016 - Woke up with my left ear blocked, a slight noise (tinnitus) the blocked sensastion faded after a few hours. but since that day my tinnitus remained permanent. after investigating about tinnitus i got scared, because i didnt wanted to make it worse. after a few months i noticed my tinnitus spiked when i had salt, MSG, etc... after i learned this i tried to avoid them, cause i wasnt able to sleep at night. July 2016 after habituating to the tinnitus, i was doing great.. i had no other symptoms... but i decided to visit an ETN that specialized on tinnitus he performed an audiogram / test and told me that i have a very very minimal loss in the lower frequencies. (in both ears, even thou... my right ear was symptom free) he told me that he believed my tinnitus came from an endolymphatic problem-nature, and asked me to get more test... after this i became very depressed, because i thought my tinnitus was caused by noise, and i didnt want to have... endolymphatic hydrops or meniere..... after a few months, my tinnitus got better, i only had a sporadic pressure, and sometimes.. i had the sensation i was walking on a trampolin (this sensation only happend to me like 3 times in 2016) fall 2016 i got very used to tinnitus, and i had no other symptoms related to my ears... but ... other weird symptoms began to appear... -Joint pain (that usually was worse in the mornings) very random, some days i would woke up feeling great, others day my knee was hurting, my hip... my jaw.. it was super random. -Visual Snow (around october 2016 my vision got super weird, i started to see static everywhere, my vision during the night became super weak, and i started to see weird spots, or flashes during the night) early 2017 i was in distress my morning stiffness (joint pain lol) got worse, my vision too i decided to go to all kinds of doctos.. got bloodwork, MRI, tested for lupus, etc everything was normal. the dr told me... that most of my symptoms fell into the "fibromialgya" category, no comments on the vision and tinnitus. Also... my right ear one day out of the blue started to crack, and than... BAM! tinnitus too (but in this particular ear.. tinnitus comes and goes) Fall 2017 i got used to all of this, and i started to feel so much better, i started to go to concerts, travel more, eat sugar and some salt (food with more sodium) so basically i didnt understood what was happening to my health, but i started to focus on living and enjoying. early 2018 after 3 years of not sleep well, i was finally diagnosed with sleep apnea, and started the CPAP treatment... for the first 3 months i started to feel much better, BUT no changes on tinnitus, visual snow...or the fibro symptoms... infact i started to experience the fibro symptoms in a more intense way the first weeks, the brain fog got sooo much worse i started to think i was going insane (i started to forget a lot of stuff, making mistake or having trouble holding a conversation), but i guess it was the body adjusting to the CPAP therapy. Mid 2018 Tinnitus, fibro pain, visual snow remains the same, im starting to feel better, no more severe brain fog... around may i changed my diet and started to cut carbs, and eat more protein (eggs, ham, sasuage, chicken, etc) this has help me to finally start losing weight. after a few weeks, i started to notice moments where i felt lightheaded, one day i woke up feeling very dizzy, but eventually after a few minutes i recovered the balance, one month later it happend again and this time i started to feel lightheaded during the day, and had a terrible headache. that same day while i was at work, i was leaning my head and when i changed the position of it i got dizzy, thats when i started to think there was something wrong ... it was like positional dizzyness ( i dont consider it as vertigo to be honest, it feels like when you are hanged over) after a few days i went to the same ETN and prescribed me BETASERC, i took it for 3 days...my tinnitus spiked and i started to feel more pressure... BUT after the third day i started to feel much better, tinnitus is back to normal, no more dizzyness or mild pressure. After two years i feel like my hearing is still great, i did noticed a little worsening after last week, but its very very minimal, i still need to get a new audiogram and see thats going on. .. right now im just trying to cut the sodium to the max, and remain postive.... so my big question in my head right now.. is.. is this Endolymphatic Hydrops or menieres? (from what ive heard hydrops symptoms are more constant and mild (like mine) and menieres are more sporadic and aggresive) also in a very short period of time i got tinnitus in both ears... also think i need to mention i suffer from candida yest since 2009, and as you may already read... i have sleep apnea, fibromyalgia (not diagnosed yet).. and also have hiatal hernia. ??? :-[ i was a super healthy during my childhood and early 20s.... but everything started to change when i turned 27... i dont know whats the root of all this problems... the candida, sleep apnea or something else but im ready to find answers, investigate and start taking proper care of my body. i have read that sleep apnea can cause tension in the blood vessels of the brain and it may lead to Menieres or hydrops, and also i have read that candida can cause hydrops... all i know is that something happend in my brain during early 2016 and now i have... pain, bad ears, weird eyes... thank for you attention! and sorry for the typos!!! remember i have brain fog ;D
Mario-- so sorry to hear how much you've got going on with your health. Like you, I have a fibromyalgia diagnosis along with my one-sided meniere's, and totally get the brain fog piece. The visual snow symptom is a new one to me; perhaps it could be a clue to something else going on. If you haven't already, you should definitely get an MRI to rule out other known causes of your symptoms. Find an ENT who specializes in vestibular disorders (neurotologist). A regular ENT doesn't have the training in the nerve to brain connection that is at the root of these symptoms. Get an audiogram at least once a year. Fluctuating hearing loss and drops in the lower registers are suggestive of meniere's. Some people have reported success with taking antifungals, antivirals, or antihistimines. I fall into the more classic meniere's situation where none of those work, and steroids didn't work for me either. I am sensitive to sodium and stay under 1500mg/day. Be sure not to eliminate all sodium from your diet; you need at least 500mg/day to keep your psychological functions intact. We on this forum aren't knowledgeable about diagnosing, but you can find support once you get an official diagnosis of meniere's. Meniere's isn't the end of the world, but it does take some adaptation as it progresses. It would seem your first step is to get to the best specialist in your area and get a comprehensive workup of all your symptoms. Get a second opinion if you're still unsure or don't feel that you can communicate well with the doctor. If you're comfortable saying where you're located, other members might have suggestions of doctors who have been helpful for them. There is quite a bit of information at Dr. Hain's website: https://www.dizziness-and-balance.com/disorders/menieres/menieres.html Welcome, and best of luck to you.
Hello Clare! Thanks for your comments, The doctor ive been seeing is a Neurotologist! (and also an ENT) hes been very good. im having an audiotest in a few days. he told me, he doesnt believe i have the typical form menieres i heard somewhere that when people have EH the symptoms are mild but constant, like.. for example my tinnitus is mild but always present. my hearing loss is super mild, but constant. both ears have the problem in less than a year. i have my moments where i feel dizzy but have the vertigo. thats why i wanna know the differences between Menieres and Atypical Meniere (Endolymphatic Hydrops) i wanna know if people with EH, get the minimal hearing loss, the dizzyness, etc. After betaserc i feel better, but at the same time i dont think it made a huge change, my tinnitus is still acting up, and i get weird subtle pression feeling in my left ear when i go to sleep. been cutting the sodium too... and im not quite sure its helping...