Menieres Diagnosis I have had a recent diagnosis of Menieres but, having read of peoples’ experiences on here and elsewhere, I just don’t agree with the diagnosis. I have had symmetrical Tinnitus for well over 10 years. I played in a rock band in my teens/early twenties. I have been to far too many rock concerts (sorry, that's just not possible!). I worked very long hours, both day and night, for many years in noisy environments (e.g. computer rooms with quite fierce air-conditioning). So, I am fairly confident in the causes of my Tinnitus. I was diagnosed with mild hearing loss several years ago but it wasn’t affecting me so I did not consider hearing aids. As far as I am aware it is unrelated but I have also had a very distinct feeling that I have had a blockage in my right ear for over 10 years. This ear never pops when changing altitude (or I hold my nose and blow), there is discomfort and sometimes pain when I lay on this ear. Recently it was found that some skin had been pushed up and had formed a membrane over one of my ear canals. This was removed but the blockage/issue persists. During some really intensely stressful periods during the last couple of years I started suffering from headaches, fatigue, disorientation and some nausea. Sometimes when I laid back, e.g. in the bath, after a stressful day I suffered very brief (a matter of a very few seconds), non-debilitating Vertigo. My local ENT department appear to have lumped these Vertigo episodes together with my very long-standing Tinnitus, Hearing Loss and Ear Blockage issues and come up with Menieres. I do not believe they are related. I have removed myself totally from the stressful situations and the symptoms have all gone away. I have not felt better in a long time. Despite this dramatic improvement, my local ENT have decided to ban me from driving until I can show I have the symptoms under control (even though I have never been affected whilst driving, which is consistent with my travel sickness as a passenger but never as a driver). From what I have read about Menieres, it appears that 'episodes' might re-occur in days, months or could even be years apart. I am not at all clear how I can show that my ‘possible’ Menieres is under control if re-occurrence is so, so unpredictable. As someone that does suffer quite badly from travel sickness as a passenger it is quite life-changing to receive a ‘ban from driving’. I have yet to find out what effect this will have on Car Insurance costs. I presume that once I have to notify DVLA and my Insurance Company I will have this 'stigma' for life, even if I can somehow prove a mis-diagnosis. Has anyone had a similar experience or can anyone advise on this? I was given the Cawthorne-Cooksey Exercises to do for as long as the Vertigo lasted. However, I have been continuing with these in a hope that they might help with the travel sickness. I’ve also extended some of them, For example 1) ‘Throwing a ball from hand to hand’ – I’ve learnt to juggle 3 balls in various patterns. 2) ‘Walk up and down steps with eyes closed’ – I live in an apartment, however, there are 80 steps down to the basement. I do all of these with my eyes closed at least 3 times a day. That’s at least 480 steps per day with my eyes closed without deviating from the central line at all. 3) ‘Walk up and down a slope with eyes closed’ – There isn’t a slope in the apartment block but I have found a very quiet, wide path near my home that has quite a steep slope with a white line up the middle that is 440 metres long. I can do 12 x 15 step sections with my eyes closed. That is 180 steps in each direction. I repeat this 3 times. That’s over 2.5km with my eyes closed. I am hiking/walking on average 40 miles per week without any issues. I have been decorating off the top of stepladders without issues. I have cleaned all the external windows and balcony glass whilst looking down from the 3rd floor without any issues. I am not sure what more I can do to show that I ‘have symptoms under control’? Any suggestions? I was supposed to be prescribed some long term medication (betahistine) but it is nearly a month on from my last ENT appointment and I still haven't received anything. All I am told by my GP is that “I’m in the system”. An article in the British Medical Journal raises concerns that Betahistine does not provide noticeable support for Menieres after the initial month. I have not had any symptoms for over 12 weeks without Betahistine so I’m not sure what support it is supposed to provide when they actually get around to prescribing it. Having read many accounts of what people are actually going through with Menieres I just feel like a total fraud signing up to this forum. The more I read the more I believe that my symptoms were all related to the intense stress I was working under. If you’ve any thoughts on this or advice I would really appreciate hearing them. Kind regards and thank you for listening.
P.S. I forgot to mention that at the end of June last year I started the week with a headache like no other (it was yet another very stressful period). The pain was right across my head. Even my follicles felt sore if I ran my hand across my hair. This did clear after a day or so but I just didn't feel right. There was no Vertigo. By the Thursday it had turned into an ear and sinus infection. My GP prescribed a steroid nasal spray (these never work with me). There was no Vertigo. Friday the ear/sinus infection had become much more severe. I vomited a number of times. There was no Vertigo. Saturday my ear/sinus infection was still bad in the evening my lips felt a little numb. There was no Vertigo. Sunday morning the right side of my face had dropped and I was rushed to hospital in case of Stroke. There was no Vertigo. The diagnosis was a facial palsy. I was prescribed a high course of steroids and ear drops. They stupidly taped a patch right over my open eye and directed me to a hospital pharmacist that had closed 2 hours previously. I had to make my own way home which included a 3 mile walk to the nearest train station. The facial palsy cleared up as the ear infection did, i.e. they were very much linked. My Tinnitus did move only slightly towards the affected side during this period and obviously my ear did suffer greater discomfort and pain than before. However, both returned as was prior to the infection as soon as it cleared. There was no Vertigo. Mild hearing loss was detected at a follow up appointment at the hospital but this was the same as it had been several year previously. There was no Vertigo. Covid-19 testing wasn't fully available back then but I would definitely have had a test if it had been, especially for the unusual headache symptoms.
I do feel extremely fortunate that I do not suffer the symptoms that I have read about in this forum and elsewhere. I did have an MRI scan on 5th June but I am still awaiting the results of this. I am presuming that this will not be forthcoming until my next ENT appointment sometime in August. It seems to be very much a waiting game, which is adding to the stress I'm supposed to be trying to remove. The Senior Audiologist at the local hospital believes the stress and trauma I have suffered over the last 15 years has played a big part in the issues I have had with Tinnitus. So, is my Tinnitus due to excessive noise, stress and trauma, or Menieres? Confusion reigns! I have been trying hearing aids for the last 7 months to see if they help with the Tinnitus. Unfortunately, it was found that for the first 2 months the hearing aids had been incorrectly set at full volume with all the controls disabled. I had had a constant hissing noise in my ears. Traffic noise and running water (streams and rivers) sounded as if I was walking through a tunnel or a sewer. This did make my Tinnitus more noticeable and it hasn't recovered since the aids' configuration was corrected. I am now having a trial period without the aids to see if I can control the Tinnitus better...........but now I have to deal with the stress of the Menieres diagnosis. It feels a bit like the hamster's wheel at the moment (not in a Vertigo way, I hasten to add!).
I was diagnosed with it in 1992 I think. I was told I was in the early stage. I was put on HCTZ, a dieuretic, and didn't have any problems for years. I started getting on this website early on, and thought man these people are a lot worse off with this than I am. Well since then I've went deaf in right ear and left ear getting worse. Mine would come and go throughout the years. I've tried many different things. The problem is I would think something was working then BAM! I would go years without problems, ate what I wanted, drank what I wanted, then it would eventually come back. I had the Lymphatic Decompression Surgery, (not sure of spelling). It lasted five years, or was it just in remmission again? Now it's back. My doctor told me not to drive. It's been going on for five months or so, with spells every few days. I tried the Betahistine for a month one time because insurance wouldn't pay. Any way the months worth didn't work. I just keep hoping it goes away again.
Sorry to hear what you have been through Bobby. I also hope it goes away for you again. I am just so confused at the moment as there hasn't been a lot of testing done and some of the assumptions made by the last ENT doctor was incorrect.
Le Blur - it just sounds to me like you have had some terrible medical care. Also, steroids for an infection? I would have though antibiotics would be the treatment. My faith in doctors, from my own limited experience and mostly from years on this forum, as far as Meniere's is concerned, is about 10% But I am also a bit critical of people's strong desire for a firm "diagnosis". They want to put a label on it. For me, it is enough to say that my ear rings, my ear feels full, my hearing fluctuates from poor to really bad. Now, let's try things to lessen these problems, no label required. Diet, stress, antivirals, supplements, keeps me going for now. Not doctors. And I still have my drivers license.
Hi Donamo, To be fair the steroids were for my facial palsy, which I believe is a standard treatment for this. I also believe that I have been instructed not to drive because I said I could not predict when I would have an incidence of Vertigo. However, I didn't get chance to add context to that simple statement which was that they have all happened when I have already been suffering from (concurrently): Intense Stress Headaches Fatigue/Exhaustion Disorientation Nausea Poor Sleep Patterns Anxiety The actual trigger for the Vertigo appears to be laying back, for example: in the bath or having an Epley Manoeuvre performed at an ENT appointment. The Vertigo incidents have always been brief and non-debilitating. From the experiences I have read about from Menieres sufferers since my last ENT appointment I cannot in any way describe my Vertigo incidents as ‘chronic’. I have only suffered about half a dozen incidents of Vertigo during the very stressful periods I have gone through over the last two years. The last incident was during the Epley Manoeuvre performed on 20th February 2021. So, I have not been able to predict when laying back was going to induce Vertigo. The Vertigo incidents have not been accompanied by any changes to my long term Bilateral Symmetrical Tinnitus, Bilateral Symmetrical Hearing Loss or the physical blockage in my right ear. Therefore, I am not sure that my experiences fit the pattern for Menieres, or that I have a problem now that I have removed the intense stress element from the equation, which has removed all of the other symptoms. It has seemed to me that it is the ENT doctors that have had a strong desire for a firm 'diagnosis' to put the 'Menieres' label on this. Certainly the last ENT doctor seemed to jump on a number of unqualified comments and go "Ahh! Menieres!".
yes, that includes doctors. Good to hear you have removed "the source of stress". Are you receiving or paying alimony?
Thankfully my stress was not alimony related. I think I will be challenging the diagnosis this week. I certainly believe the driving ban has been completely unwarranted as I have never had any Vertigo incidents whilst sat down or stood up and they have been very brief.