Hi, I've been suffering from reoccurring episodes of pressure building up in my left hear, resulting in a form of very loud tinnitus that lasts for in excess of 24 hours before it calms down again. I have not experienced any form of nausea and dizziness that's associated with Menieres disease. Everyone thinks I have some form of this condition (including the ENT doctor) although my symptoms do not quite fit the mould. I have been taking Betahistine for the last 6 weeks and on recommendation from the ENT doctor increase the dose from 16,g to 32mg as I'm still having attacks of ear pressure and resulting tinnitus/hyperaccusis. I am on a restricted salt, fat, sugar diet that I have stuck to religiously but I now believe that the attacks are coinciding with low weather pressure. The pressure that builds up in my left ear is uncomfortable but its the tinnitus that builds up to a distressingly loud volume and appears to come from inside my brain and this is leaving me very distress as nothing seems to prevent or lesson the attacks. People are sympathetic to a degree but I am being regularly told that I'm lucky not to have all the symptoms (I don't feel very lucky at the moment) and that I should learn to ignore the noise!! I'm desperate for some help and advise as to whether I do have Menieres disease or one of the other conditions such as perilymph fistular etc. My clinical history before this condition started was that I had been training for the London marathon and was running for 2.5 hours at a time with earphones in (not loud but with very sweaty ears) and then I went to Centre Parcs and came away with what felt like water in my ears. I'm guessing this is what triggered off the condition. MRI scan only showed some fluid build up in the mastoid bone area. I use a steroid nasal spray daily have tried decongestants and other antihistamine, when prescribed Amytriptyline it made me very spaced out after a couple of doses and I ended up losing my 2 year old whist on the school run (after that I stop taking it). I've recently tried a low dose directic but this does not appear to have helped at all. Please if someone can help me in any way, shape or form I would be forever grateful. Wendy
Hmmm... I'm new here too, and by no means, a veteran of this disease. But it sounds like cochlear hydrops, which is basically Meniere's without the vertigo. It is what one dr. thinks I may have as well, although my presentation is different than yours. It sounds like you've tried the diet and meds. Have they discussed trying the steroid injections into the middle ear? I was told if my symptoms were not controlled by diet/meds, and they were bothersome, the injections would be next. I suppose the other things you could rule out would be TMJ disorder and something called superior canal dehiscence syndrome. Your symptoms sound very atypical for migraine, but being a migraine sufferer myself, I know they can cause very strange symptoms, even without the headache. Good luck!
Check out http://vestibular.org/secondary-endolymphatic-hydrops-seh I haven't - Knock on wood - had any vertigo attacks but I have the low-frequency hearing loss, aural fullness, and tinnitus constantly. It tends to come and go a bit but I think changes in the weather/pressure have some impact. For example, I live in a rather humid part of the US and visiting family in another area seemed to help my symptoms a bit. Came back home and .... back to abnormal. I haven't found any other triggers that cause the symptoms to change greatly in my case though I have to admit I haven't been keeping a food journal. Given the unknown cause of "let's call it Meniere's for now", and how it seems to impact people in different ways, there are many things that cause similar symptoms. The list of possible causes, tests to get, other possible diagnosis, etc. isn't easy to keep track of. You may want to get some basic blood work done - B12, Lyme Disease, Thryoid, BMP - and see if anything isn't right. I've seen a chiropractor lately that is working on getting my neck squared away as a pinched nerve or blockage could be causing inflammation, causing the other symptoms. ("Could" being the important word.) I have a few other tests in the queue but trying not to have my doc think I'm a hypochondriac.
I have the same symptoms as well constant hearing loss in the Lower tones and tinitus is becoming more frequent .dizzy but Thankfully no vertigo tinitus seems to be worse when it's like a Motor feels at times very dizzy which is scary dont k ow how bad It will get just mentioned in a previous post my dr suggest endolymphatic Decompression to preserve hearing I tried steriod injections Didn't help much except for congestion and head pressure I notice sugar makes the ear and to tinitus worse I also have A thyroid problem that's still being corrected I read about cochlear Hydrops was thinking maybe that too good luck
Unfortunately, this is how MM starts for many. It can take months or years for the onset of vertigo. Or, maybe you'll be the lucky few that only gets hydrops. The unpredictability can be excruciating.
It seems that it starts differently for everyone. However, I have constant symptoms that vary slightly. Has anyone started from that and then one day ... blamo! Full vertigo attack?
No. It's not fun in the slightest....especially the anticipation of wondering if you'll have an attack or not. Hopefully, you will go into a long, long remission.
Such an odd disorder. I've been fighting the symptoms, except vertigo, for a few years now on and off but they've been on since ... oh ... November or so. The otologist I saw last said he knew of a case where it took two years for someone's hearing to come back.
Wendy, Why were you given Amitriptyline? To my knowledge, it is not used for menieres. Did they suspect a migraine component?
I have ready that amitriptyline has worked for some people. My guess is that it slows down part of the nervous system which in turn might change the "signal" for a persons vertigo.
Ahhh... thanks, nicmger. Amitriptyline is used for migraine and MAV as well, so I was wondering. I took nortriptyline (same class) for migraine/MAV prevention, but it made my dizziness worse. My neuro is probably going to switch me to Verapamil (from propranolol) for migraine /MAV prevention. It prevents vasospasm, and has also been used off label for MM.
Stematil which has a brand name buccastem in the uk works very well to either stop vertigo or stop it starting in the first place. Can be bought over the counter at boots for about £7.50. I believe it is the equivalent of valium or ativan. My lead up to vertigo was gradual, feeling off and with migraine auras for over a year. Then BAM the vertigo hit and continued for about 3 years only with breaks of vertigo free days at a time in between. I did have menieres but also MAV. Once I treated it as MAV and by avoiding food triggers I improved immensely. However I add that also once my left ear hearing disappeared the vertigo also coincidentally stopped, I think because the herpes virus had done so much damage by killing the ear. I did repeatedly ask for antivirals but the doctors were too scared to prescribe something that wasn't in their medical books. How arrogant is that, with menieres being idiopathic they had no idea what brought it on but were scared of helping someone by prescribing something that was helping other people because they would risk being sued. I actually wanted to sue them for negligence by not prescribing antivirals but you rarely win with the establishment so I abandoned that idea and got on with my life and accepted the deafness in one ear. Had I not improved so much vertigo wise I probably would have pursued the antivirals.
I have read it does. I don't take those now, as I was put on klonopin (same family- benzos) years ago for anxiety. When all this MAV dizziness started, klonopin absolutely did help. That said, I am afraid of taking it to often as a tolerance can build up, and it can be addictive. But for acute vertigo attacks, I am told that Ativan under the tongue can help a lot.
dizzylizzy: be very careful with the klonopin. I was on it for years when the MM was bad. It saved my social life, my sanity, and certainly saved my job. I went off of it this fall. OMG! I've never felt a hell like that before! And that is saying a lot, as I'm in a nice little hell right now. Jaypr: Curious, what are your food triggers?
I have been on low dose klonopin for 13 yrs- 0.25 mg a day, not every day tho. I only fill my 30 day supply 6-8 times a year. None of my Drs are worried about dependence. That said, I am not prepared to go off of it until I can retire in 10 yrs or so. I don't take it every day, but I am well aware of the horror stories of coming off a low dose even. It is the ONLY drug that has enabled me to function with MAV. Preventatives on their own help, but not all the way. I cannot afford to lose my career, so I am in it for now. But I agree with you, it is a nasty drug to come off, and it won't happen until I am not required to show up anywhere with a brain for several weeks.