Really would like to hear from you all with any ideas on my condition as you seem to have experience in this.
It’s difficult to explain but last few years I would get the feeling of not wanting to lift my head up when walking. Even working on computer my brain was telling me to not keep looking up at screen from the keyboard. I would even feel nauseous. Top of head would feel heavy or tight. Difficult to explain.
Then over the last 6 months my ears get a fullness feeling and tinnitus off and on. Maybe a week on then a week off. Then maybe a day on and a day off. Really depressing. When I swallow or stretch jaw I hear a clicking sound in my left ear all the time. When I hold my nose and blow it pops but no relief.
Just been to ENT and he gave me Betahistine 16mg x2 daily. He thinks it’s not Menieres. Not sure why. Today I think I had a vertigo attack then tinnitus back and so tired.
Any ideas or thoughts? Thanks.
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Mat189
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I have your symptoms exactly! For the past year and a half. I have vertigo attacks every fortnight just like you with exact same symptoms, the tinnitus and ear pressure building up.
I also saw ENT, got betahistine and was referred to neurology to explore vestibular migraine.
Do you have a hearing aid?
I really feel for you. It has been absolutely dire. The Neurology consultant was much more sympathetic than ENT and said it is very difficult to differentiate between menieres disease and vestibular migraine. My hearing fluctuates and after an attack my voice sounds hoarse to me but normal to others!
I take cinnarzine for vertigo and nausea. Also tried prochloperazine and nortripylene but couldn't tolerate these either. I take B2 which was suggested by neurology. I think is helping as I used to shake after each attack, with the stress of it all but that has calmed down and I can manage it better but 'normal life' is a more paced, pared down version for me.
Good luck with betahistine. 16mg x 2 is quite a high dose. I had that too. Sorry I don't mean to sound negative. I'm hypersensitive to tablets, they may work well for you.
Do you just rest when it hits? I have to lie down for hours and often trip and stumble too. It is overwhelming. Take care. x
Thanks for reply. I’ve only had a few ‘attacks’ and I just lay down like now. Going to bed and hope to be better in morning. No hearing aid. Got my ears tested yesterday by 3 different machines. All not too bad but low in an important frequency on my right ear although tinnitus is in my left ear! I said they should test my ears when I’m having a bad day. Would be interesting . I’m in my 40’s.
I must admit at first I disagreed because I didn't know much about vestibular migraine but now I think it could be for me...I have (high-toned) sensorineural hearing loss and was told menieres usually goes with low toned hearing loss. I'm not working now so less stressed about mis-hearing people etc. Anyway hope you get a good rest. Be in touch.
Hi Fuzzywuzxywasawoman sorry to jump in but could you tell me what exactly Vestibular Migraine is? I too am struggling to find out whether or not I have Menieres🙄! ENT said I don't as I don't get all symptoms together eg fullness, tinnitus and vertigo. I do have Low Frequency Hearing loss, tinnitus and vertigo. Only had about 2/3 major episodes since 2018. I do get other dizzy spells which last a few minutes, no nausea. I just really wish someone could tell me what is going on with me.....tinnitus is increasing😭. Thank you
It is so frustrating. I've been told the symptoms are near identical apart from Menieres more likely with low toned hearing loss.
I think there is a bit of a push for consultants to go with Vestibular Migraine as it involves self management and it less of a drain on medical budgets. Maybe I'm cynical - if you think so please ignore my comment!
All the best. It is very distressing. I try to pace myself, avoid crowds and have periods of rest and quiet.
I had an MRI in 2014 but would have liked another one or a scan of the ear/neck area but it wasn't offered. All the best. x
Thank you for your reply. The only issue I have from the picture above would be hearing problems. My tinnitus are low humming/drone sounds so that could be from the Low frequency Hearing Loss I have. I had an MRI last year and it was all clear, bloods also clear. I feel like I'm going around in circles with it🙄! Take care xx
Me too. It is so frustrating. Sorry you are going through this. A tricky aspect for me is that I look well and some in my social circle don't believe me, I suspect. This site is a great help.
I wish that ppl close to me could hear it only for a few minutes so they can fully understand the torment I go through on a daily basis! I wouldn't wish it upon anyone x
Oh dear - sounds difficult.We are not diagnosticians here of course, and you could have two different things going on at the same time.
For the tinnitus, have a look at the British Tinnitus Association website and there you’ll see lots of information, including about the temporo-mandibular joint which might be causing problems.
As far as vertigo goes, there are lots of exercises published to help with vertigo. The trouble with some of them is they make you more nauseous. I think the ones by the Spine Foundation has the best exercises to help train the brain to believe what your eyes are telling you and not what your ears are telling you. Start off with the ones where you just sit down and move your head or your eyes. You can then progress to the others when you feel more comfortable. Your doctor should be giving you these exercises, though.
Thanks. I will read up. The last few months I’ve really made an effort to find out what’s wrong with me. I’ve paid privately for a chiropractor but no difference. Went to dentist about TMJ as you mentioned. He did x rays and said all looked good. He made me a mouth guard for sleeping and been wearing it for a week. I’d try anything. Not sure if the feeling I’ve been having for past few years is the same as the more severe hits now.
I suffer from vertigo bad. I'm violently sick for up to 5 days, and cannot move. I also have Tinnitus constantly in both ear's, 24/7. It's very loud. I have Betahistine 16mg 3 times a day. Since taking them the Vertigo has eased, I haven't had any sickness and the longest was for 2 days. I get dizzy spells most mornings while sleeping and it wakes me, normally between 3am and 5am. I can deal with this as it passes. I have had a brain scan which is clear, have an ENT appointment next week. It would seem the Betahistine is easing the Vertigo, but the tinnitus is just so loud.
Hi! I had such troubles almost 16 years ago.In România doctors gave me Betahistine 24mg / twice daily and Doppler for cervical arteries . Diagnosis in my case was brain circulatory insufficiency , not Meniere disease. I was also given Mg and Complex B vitamins.
It probably bears mentioning that the Meniere's Society - menieres.org.uk/ - can answer questions about this particular condition and about other balance-related issues.
Hi Mat189 I too am struggling to find out if I have Menieres. I have Low Frequency Hearing loss, tinnitus (both ears and head) and vertigo. Last doctor i saw said i have BBPV. All the symptoms suggest that I do but ENT said that I do not as all symptoms don't happen together and I don't have fullness in the ear. It's all very frustrating. I also have the clicking sound you mentioned in my left ear.....when I swallow it pops once but when I yawn it pops/clicks 5 or 6 times. I also get a hollow sensation only in that ear that makes sounds seem distorted (esp running water, kettle boiling etc). It usually passes in 2/3 days. This is all very frustrating and depressing if I'm honest😟
I got my ears tested 2 days ago. It was when I was having a good day. She said overall not bad but I didn’t get to see full results as she wants doc to show me. Another 250£! I get your distorted feeling in my left ear. It can happen for 1 day or 7 days. A real fullness and tinnitus at the same time. Last 2 days I’ve had vertigo.
I never really get ear fullness but the tinnitus is on another level🙄! Sorry to hear that your currently suffering with Vertigo....how are you finding the Betahistine?
That is good. I had a milder attack today, hearing went muffled, couldn't make people out and feet went funny. I wasn't dizzy but found it hard to judge my footing. Tired now but at least it was a mild one. Take care x
I have been diagnosed with Menieres and I'm STILL not sure if I have it! That is somewhat the nature of the beast. If I do, I've been in remission from the vertigo for years, and my hearing has improved somewhat as well - both of which are documented aspects of some Menieres patients. The tinnitus has not. The symptoms you describe are classic Menieres though. Often the hearing loss begins as one sided. Was that the same for you? You indicate that it might be. I never suffered from the fullness in the ear, but everything else yes. The sooner you get to a specialist the better I think. My first ENT guy here in the States told me my hearing loss was permanent and irreversible. Didn't even suggest hearing aids or seeing another specialist until later. The specialist has been very good (although puzzled!) and my audiologist is excellent, although she too feels like we're walking in the dark (to really mix metaphors). I know my case is unusual, but I'm lucky in that it's not debilitating, more annoying most of the time. Betahistine seems hit and miss. Again, I don't know if it works for me. I take it, twice a day, but my feeling is over the course of two plus years that it isn't one of the things that affects me. I was also on a diuretic for a while, but that brought my blood pressure too low. When I came off it I noticed no difference. Menieres is an incredibly frustrating disease as it's so difficult to diagnose and even more difficult to treat. Also it's hard to explain to people because you look normal, when you aren't flat on your back in a darkened room with your eyes closed and the curtains drawn.
I would preserve with the betahistamine if you can as it works for me, appreciate that’s not the case with everyone. I stopped it one time and 6 weeks later a vicious vertigo attack which I’d not had for two years. Also, and I appreciate this will not be easy, try and get an appoint with an neurotologist (the T in the middle is important). The Ménière’s society site has a list of specialists by area. See if your GP can get an appointment with the one in your area. Yes I know trying to get appt for anything is huge.
With betahistamine I still get patches of fullness, discomfort really not as bad as it was. Deafness in affected ear and of course the horrible T.
I've had Meniere's Disease for 40 years and bilateral MD for 8 years. I take betahistine, allergy spray (in nose) and do sinus flushes twice/day. The symptoms for MD are ear fullness, tinnitus, vertigo attacks that last at least 20 minutes and loss of hearing in the LOW decibel range. All of these symptoms normally occur at the same time. To be accurately diagnosed as MD you would need to see a neurotologist specializing in inner ear diseases/balance difficulties. Most neurotologists are affiliated with teaching Universities. The cause of MD is difficult to pinpoint and can be most anything: virus, allergy, etc. Allergy is a very common cause of MD and is the source of my MD. Betahistine when taken every day at maintenance level (16mg X 3 times/day) will likely greatly diminish vertigo and ear fullness. It will have almost no affect on tinnitus and hearing loss....though it may make the hearing you have a little more clear because of the elimination of ear fullness. Sinus flushes and antihistamine nasal sprays will do wonders for your allergy problem....and reduce MD symptoms if allergy is the cause.
Caution: If you take Betahistine you need to avoid also taking any antihistamines by mouth (orally) because they will neutralize the effects of Betahistine which is a histamine. If you need to take antihistamines because allergy is cause of your MD then take only the type that sprays into your nostrils...this avoids the blood stream and will not neutralize the Betahistine.
Hi Tanner. Thanks for the info. What is MD? 40 years is a long time. I couldn’t survive 1 year of this. I’d prefer to be deaf….or maybe you can still have fullness and tinnitus when deaf? The doctor also gave me a nasal spray but I’m not sure if it is doing anything. I’m not sure if it low or high decibels affecting me. I find out on Wednesday. After this ENT I’m going to ask for a neurotologist. I’ll check if this hospital has one that specialist in inner ear.
I’m glad to hear you think Betahistine will help fullness and vertigo. I think T is the least I care about out of the 3 atm.
I read the appointment date wrong. It’s Thursday next week. Lucky my wife read the letter too! To be honest I’m not expecting much from him. My brother has a lot of friends who are doctors. I wrote down all my history for last few years and he emailed it to them last night. Hope they come back with something as I’m getting worse. Constant nausea for last 4 days and T. Doubt that could be Menieres??
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