Hello Hope you can help sorry for the long rant, I feel i have Menieres, For the past 4 years or so I have had numerous issues with my ears which starts with my right ear feeling full when seeing my Doctors (UK) they advised either my ears had wax in them and needed to be clean out or on a couple of occasions no wax showing and to use olive oil drops! didn't help, when this happens my tinnitus goes through the roof, Reduced hearing in that ear and increased sound sensitivity, Dizzy spells which at first would last a couple of mintues however recently this has been longer,nausea, I then get exhausted and need to sleep the majority of these symptoms I have had individually for 20 years or so noted on my records, I have had CT scans (thinks that what they are called 20 years ago and recently). My doctors ( have went private) think it may be due to compacted ear wax (last year I had my ears cleaned out 7 times) I have passed the vestibular function tests (came back fine) noted again hearing loss in right ear although noted as compacted hearing loss. I am losing my mind as although I understand the impact of compacted wax this has been going on for years now and keeps coming back! always starts with my ear feeling full (same ear). Its so dishearten Its got to the point now I feel I am going mad i know that this is not all in my head. I feel now i know the difference between blocked ears and the feeling of fullness. As my vestibular/ct tests came back fine i don't know what to do next? Can anyone help. Thanks Craig
If your hearing loss was in the lower frequencies rather than upper, that would be a key indicator of Meniere's. It's awful to be in that no-clear-diagnosis zone. Hang in there and keep pursuing.
I'm in the same boat, Craig. It's frustrating. I've been doing a lot of research and learning from boards like this. This is a good subreddit on Meniere's as well with a lot of active folks. A place for people with Meniere's to talk, complain, and share remedies.
Thanks everyone - On reading up on MAV I have had the majority of the symptoms for 20 years!, Is it possible to have both? When I was referred for vestibular test my doctors (ent)notes stated possible Meniere's or Migraines. Its only in the last 4 years that my right ear just feels full at times(like when in a plane) last year this fullness was in place for 6 months on and off(Feb - -Sept)seems now whenever I get a attack my hearing in the right ear gets reduced which used too go away fairly quickly (4 years ago) however now its last a lot longer and does not come back fully when the attack has past although it does come back eventually. Typically my dizzies would only last only a few minutes however Nov _ dec 2 instances of 20 minutes plus. I find the trying to get a diagnoses/help so frustrating I have had these problems/symptoms going back years, noted on my medical files but whenever I get referred onto a speciaslist reports come back fine!. This is not a psychosomatic problem. This keeps coming back and back and back symptoms more or less the same each time. I am in my 40s now and each time I get a attack its getting harder and harder function on a basic level. In 2 weeks time I have another appointment with my ENT this time I plan on having a more direct conversation with him. Again sorry to rant and thanks for your support
I would skip the regular ENT and get an appointment with a Neurotologist they have more experience with these types of things. You may want to get a copy of Heal your headache by Dr Bucholz many people here have had some success with his migraine diet. Good Luck.
I also would suggest a Neurotologist but if you don't have one of those handy, I suggest a Neurologist before going back to the ENT.
Hi all - I have decided to right everything down to discuss with my ENT on Monday week. Just looking for thoughts I have highlighted all recurring symptoms 2010 CT/MRI scan came back clear due to dizzy spell at work! Think lasted hour or so ,fell against wall at work, taking into room for 30min/hour to recover– CT/MRI scan came back fine I did not pursue this further as I think migraines was the diagnosis however at the time I had no head pain – Doctor told to keep an eye I then forgot about it due to getting on with life/depression. Dr Mitchell/Dr Fordyce Kirkcaldy Heath Centre. You stated on your letter to Dr Russell possible Migraine or Ménière’s I have looked at both and feel I have both. I have highlighted all recurring symptoms Vestibular migraine typically is associated with nausea, vomiting, sweating(night), flushing, diarrhea (noted on file happens randomly multiple test come back clear) and visual changes such as blurring, flashing lights and difficulty focusing. Patients also report difficulty concentrating, finding bright lights and loud sounds uncomfortable, and most commonly feel extreme tiredness and fatigue, needing to sleep. Often the presence of concurrent symptoms not expected in Ménière’s disease such as visual symptoms during attacks is the key to the diagnosis. This may include blurred vision or sensitivity to light. Patients also often complain of extreme fatigue immediately following an attack. There is a strong association with Ménière’s disease with approximately half of people with Ménière’s disease experiencing at least one migraine symptom during a Ménière’s attack. The two conditions can coincide in 40% of patients with Ménière’s disease. Therefore Vestibular migraine must always be considered in any patient with Ménière’s disease, whose symptoms recur unexpectedly, and before any destructive Ménière’s treatment is contemplated. Benign paroxysmal vertigo of childhood designates a variant of vestibular migraine that starts at pre school age with brief attacks of isolated vertigo which tend to be replaced by typical headache migraine after a few years. – motion sickness fairly frequently as a child only in long car journeys which would lead to vomiting – This I feel is a trigger as loan car journeys prove trigger for 5 separate occasions and lead to all highlighted recurring symptoms above Common symptoms of a Ménière’s disease attack do not reflect the entire picture of the disorder, because symptoms vary before, during, between, and after attacks, and also during the late-stage of Ménière’s disease. Ménière’s disease may start with fluctuating hearing loss, eventually progressing to attacks of vertigo and dizziness as noted over past 7 month more frequent short spells normally 5 mins or so however 2 instance where lasted a lot longer recently. – My hearing now between periods off ear-fullness in my right ear gets worse and take longer to back to normal, this started 4 years or so ago and each time this comes back (ear fullness) my hearing take longer to come back and is no longer what is used to be. Oncoming attacks are often preceded by an “aura,” or the specific set of warning symptoms, listed below. Paying attention to these warning symptoms can allow a person to move to a safe or more comfortable situation before an attack. balance disturbance – the past 3 years I have felt my sense on balance has been particularly bad no bad falls! , Just off balance partially in the winter months dizziness, lightheadedness – Constant - on and off recurring noted on Medical file going back since 2006! – Again thought my thyroid was the problem headache, increased ear pressure – This has been very bad over the past 4 years, documented from Doctors whereby after (2/ 3 week) after my ears being cleaned out, Ears still feels full On 2 separate occasion Doctor noted ears clear/clean however feeling fullness still there – This I found very disheartening and made me feel like giving up as I experience it but doctors cant verify! hearing loss or tinnitus increase. – Tinnitus has since late 20s no know trigger/cause!, I have learned to live with this however after my ear starts to feel full tinnitus roars sounds like the ocean noticeable difference huge effect on overall hearing. sound sensitivity – Again after ear starts to feel full sound sensitivity last for days/week vague feeling of uneasiness – Again this has been documented on my file going back to when under active thyroid diagnosed, I assummed that this was just my life going forward due to thyroid –This tends to recur each year, I have noted in August/September my anxiety gets far worse – Feeling that something bad/doom is going to happen again recurring keeps coming back – Again I thought this was due to my thyroid as ongoing since around that time 2006. Beginning to think my anxiety/depression caused by this! Cluster headaches - almost always one-sided right side, feel it behind right eye, scalp always very tender when goes on again been going on for years Doctors prescribe Rizatriptan for this which can help if caught in time if not bad throbbing right side of head effect back of eyes – Need for dark room and rest normally helps this. Approximately one-third of Meniere's disease cases seem to be of an autoimmune origin – I have a underactive tyroid this a autimmune disorder – High dose on levothroxin 125mgs Mother had Mastoid surgery in both ear 1985 – Due to recurring ear problems
Craig, FYI, over the weekend I did a lot of deep research into the AIP diet and vegan diets and how they affect autoimmune issues positively.
Hi All, Seen the ENT fri past, been referred onto a Neurologist. Doc said he cannot see any symptoms relating to Menieres! Bit annoyed he did state I was the type of person that was too aware of there symptoms! didn't know to say other than been going on years really deflated. Explained tested for this previously in 2010 ish symptoms the same although past year or 2 has been a lot harder to get on with.
Craig, that sounds super frustrating and maybe not the best bedside manner. It's hard not to be super aware of symptoms when you don't know what's going on from minute to minute. I've also been to a neurologist. He told me he thinks my ears issues are from acid reflux or something called LPR. It's so crazy. The doctors don't talk to each other either. They don't have time I suppose.
Craig you’ve got to keep pushing these Doc’s. Many of them are so locked into modern medicine that they become predisposed to giving the most published answers form their journals. Trust me I’ve argued, laughed at, and simply walked out of offices on doctors who refused to take me seriously. Remember you pay for your insurance that’s how they get paid so, in effect, they work for you. Sometimes you have to just fire a doctor and move on. I found a great ent after several trials who then referred me to a great neurologist at Rush Hospital in Chicago. Don’t give in there is someone who will listen to you. Never let anyone think your issues are trivial I’m sure they wouldn’t be willing trade places with you. Trust me.
Thanks for your support guys really appreciated . The annoying thing is in 2010 I fell at work due to a dizzy spell was sent for a MRI/CT scan come back fine, Ent tests fine also, Mentioned may be migraines/Meniere's but to keep an eye on. Then last autumn I had my worst attack, was overseas, ears blocked up barely any hearing ( this happens every year when I travel), felt like half my head was not there, tinnitus through the roof ,slightly dizzy, Brain fog so bad (strange over here when I mention brain fog they don't know what I am talking about!) nausea and exhausted for months after. This was dreadful. When I got home I thought enough is enough this been going on for years so i went private knowing how long the nhs can take. In the hope of getting answers. I took in the above letter to the ENT and he did not even look at it!. No thoughts or tips or anything just I will refer you on. Felt like giving up but I cant as it will just keep coming back, I cant follow any remedies etc until I get a diagnosis due to work(pretty sure they think am crazy at times) just exhausting , frustrating I don't know how anyone gets a diagnosis. Repeating symptoms I have moaned about for years and years. I have so much respect for doctors this is probably where I am going wrong
Hi Craig. Have similar experiences as you with UK private ENT consultants and Neurologists. Even so, this was ten times better than the NHS ENT consultant who was clueless. What I do is email my notes in advance so they have have to read it before you arrive.. The challenge is that I think you will find it difficult to get a firm diagnosis. What you may get is some things to try - but then it gets very expensive to keep going back. What I have done is create a daily diary, and when I think I am having a cochlear hydrops attack I check my own hearing using the on-line free tool "hearingtest.online". Things to try are low salt diet plus taking betahistine. If its possible its vestibular migraine related then they would probably prescripe amitryptaline. Your GP could support you intrying this. Alternatives are the JOH supplement regime. i havent tried this fully.. If you want to try antivirals there are ways of getting these without having to see a doctor. If you want to know how, message me..
Woke up this morning right ear blocked! head pounding. If this is just compacted ear wax as ENT suggests then why after 6 days since my ears were cleaned out would they be blocked now? so my choices are let them clean out again which could cause lasting hearing problems due to repeated cleaning or I can leave them as is which will just compact more and more leading to hearing damage. Really starting to get me down this keeps happening and happening. Apparently some people are pre dispositioned to produce more ear wax which I get but 6 days after being cleaned to be blocked again does not seem right anyone know if this is normal