Help! Concerned I have Meniere's, but don't have all of the symptoms?
Posted , 9 users are following.
Hello,
I am a 22 year old male. Last year (July 2015) I developed tinnitus in both ears and ear pressure. This was put down to eustachian tube dysfunction caused by hay fever (my doctor noticed my ear drums were retracted). The pressure eventually went away with the use of a nasal spray and antihistamines, and the tinnitus decreased to a volume that's only noticeable in very quiet rooms.
Around 9 weeks ago, my tinnitus increased and the fullness returned. I assumed it was just my eustachian tube dysfunction as a result of the hay fever, and my GP confirmed that I had a retracted eardrum and fluid in ther other ear. I was told to persist with the medication (nasonex, fexofenadine and occasionally sudafed).
Two weeks after the tinnitus and fullness started, I caught a virus that caused fatigue, weakness, headache and swollen glands. That cleared up, but a few days later I gradually started to feel dizzy over the course of a few days. The dizziness is very difficult to describe: there is no spinning, nor would I describe it as a sense of movement. Instead, it feels like more of a heaviness, similar to the feeling of being slightly drunk. I feel unsteady, but I'm never worried that I'll actually fall. It's far better when I'm lying down, and is at its worst when I'm in shops. My vision has sometimes been affected (I feel as if I'm straining my eyes slightly when looking into the distance, and is occasionally slightly blurry). I have also felt extremely tired (more so than usual) when I have days when I have to move around a lot.
The combination of dizziness, unexplainable tinnitus and fullness in the ear has made me panic about the propsect of having Meniere's disease. My doctors have not seem very concerned (I have been repeatedly told that it is 'unlikely'
and I had to push hard for an ENT appointment. In the 9 weeks that this has been ongoing my mental health has deteriorated signficantly. I saw a registrar yesterday who carried out an audiogram, tympanometry and tested for nystagmus using frenzel goggles. None of them showed any problems. In fact, the audiologist said I had some of the best hearing he'd seen.
I left without a diagnosis. The registrar told me that my symptoms didn't meet the diagnostic criterion for any disorder. He's given me a long list of migraine trigger foods to stop eating as I've had two migraines in the past, and said we'd follow up in 'a few months'. He said Meniere's was 'unlikely' because of my hearing test results, but said he couldn't be sure because of the fluctuating nature of hearing loss in Meniere's. He also said that labyrinthitis/vestibular neuritis was 'possible', but that it usually starts with a sudden onset of severe vertigo, whereas I experience only a vague sense of dizziness which had a gradual onset.
I am so worried that this could be the early stages of Meniere's disease. I would like to get your thoughts on whether or not I am being unreasonable. My ear fullness comes and goes, but seems to be helped by steam inhalation, which suggests it is not so much of a problem with my inner ear (though of course I can't inhale steam when I'm out of the house and my ear feels blocked, so cannot be sure!). My dizziness is not true vertigo and probably better described as disequilibrium. My tinnitus is very quiet and doesn't seem to fluctuate. I had a very small dip in the low frequencies in an earlier audiogram (only about a 10-15dB drop) but my audiologist told me it wasn't clinically significant, and was probably caused by my retracted ear drum from the eustachian tube dysfunction. There also doesn't seem to be any consistency in the symptoms, they don't really come on as separate 'attacks', they seem to just come and go independently of eachother.
Please tell me that I'm being unreasonable! I've developed a complete fixation with this condition and can't focus on much else. I'm becoming increasingly desperate, thinking about the implications of having this disease at such a young age. I'd really appreciate any thoughts. Thanks.
0 likes, 27 replies
melody08508 DM1994
Posted
I know others who have labs and never had the initial vertigo either. Just a feeling of being "drunk". And it mostly always starts after a virus so it could still be that. Menieres causes bouts of vertigo so cross that off ur list. It's not that. The other thing is it could be vestibular migraines
DM1994 melody08508
Posted
melody08508 DM1994
Posted
I have either VN or labs and I'm on month 6. I found I was a lot better around 3 months. I'm still not 100% but pretty close!
DM1994 melody08508
Posted
Thanks for letting me know. Really sorry to hear you had to go throught that, but I'm glad to hear things have improved so much for you over time!
melody08508 DM1994
Posted
AE19 melody08508
Posted
Hello Melody,
I, too, have what I believe to be VN in some form, thankfully a bit better now. Received a diagnosis with a 42% "loss" of my right ear.
Had it since August and am now significantly better on month 3, much like you were. Did you find that the symptoms vary throughout the day?
For instance, I'll be having an almost perfectly normal few hours and then come evening, back home, I get a random bout of dizziness doing something as simple as having dinner. It's very frustrating.
melody08508 AE19
Posted
Yup very normal! I think during the day ur busy but once ur home it's like ur brain is exhausted from compensating and goes into overdrive. I was the same, mine always felt worse in the evening. It will pass
AE19 melody08508
Posted
That's very helpful to hear. That said, you're right. It's as if it knows the day is winding down and refuses to keep working for you. Thanks!
Sorry, also, is it tough to read for you? Long sessions mainly?
melody08508 AE19
Posted
Yes I found reading hard, also watching tv especially if it was an intense show was also hard. I think it's just that the brain has to focus so much and it gets tired. I can now read for a long length of time and feel ok :-)
AE19 melody08508
Posted
Thanks for getting back. Ever have bad days in between month 3 and 6? Even mornings are occasionally a bit rough for me. Also, having to rest for 5-10 minutes in between everyday chores or work-related stuff. Sorry to keep badgering you. 😄 I'm new to the forums and it's great to hear from others!
And if you did VRT, did you ever feel like it plateaus for a while?
This is weird.
AE19 melody08508
Posted
Sorry, my last reply awaits moderation. At the end, I wrote, 'this "expletive" is weird' haha so it wasn't posted. 👌
Basically, I was asking whether, if you've done VRT, you found that it plateaus for a while. In other words, it seems to stop making progress for a bit, even as you make it more intense.
And did you ever feel funny when a car stops?
DM1994 AE19
Posted
Hi AE19, thought I should chime in and say my experience have been similar. Things are definitely getting better for me but there are certainly periods when the feelings of imbalance/drunkeness return. I'm in the final year of my degree so I definitely empathise with the difficulties of reading for prolonged periods - I've found myself checking to make sure that the sensation of going cross-eyed is really nothing more than a feeling! Glad to hear you're significantly improved though, and I hope you're symptom free as soon as possible.
DM1994
Posted
melody08508 AE19
Posted
Haha!!
I didn't do VRT myself although I probably should have. But I am a cleaner plus I have three kids and I went for Walks a lot so to me that was all VRT. I struggled so bad when a car stopped and even now when I come to a traffic light I have to relax my mind as it makes me feel so funny!! Even in a car park if I was parked, and the car next to me reversed I would feel weird!
AE19 DM1994
Posted
First, congrats on keeping on with your degree! That's excellent. That said, it seems many of our symptoms line up, as you said.
And as far as brain fatigue, do you find that you can push through it? Sometimes I need a 15 min break to recharge.
Also, likewise, wishing you the best!
AE19 melody08508
Posted
Oh boy, I totally get that. Good times.
Luckily your job helps calibrate the symptoms, especially without VRT.
I'm looking for work myself. 🙃
In terms of that funny feeling, it's like a heaviness or slight pressure in my head. That how it is for you?
Not really a headache but almost.
DM1994 AE19
Posted
Thanks! When the brain fatigue is at its worst, I don't really have any other choice but to take a break. But I try and push through it as much as possible, particularly as there's a really big psychological side to it for me too - I find if I don't keep busy I get really anxious about it limiting me. Quite difficult getting a balance between being active enough to help recovery and being inactive enough to not overexert myself. It's exactly like the sensation you described in your comment to melody below - slight heaviness/pressure that feels like it could lead to pain but never actually does.
I really feel for you melody, having to keep up both a cleaning job and being a mother of three! Can't imagine how exhausting it must have been in the early stages! Really glad to hear things improved.
AE19 DM1994
Posted
In other words, not resisting the idea that we might need time to refresh.