Hi! First off I wanted to thank everyone here for their openness in these discussions. I’ve learned so much reading through all of your posts and it makes me feel so much less alone! I read through quite a bit before posting here, but still I apologize if my question is redundant. I was very recently diagnosed with menieres (about three weeks ago) and my doc wanted to have a VNG test done before beginning gentamicin injections someone in January (the holidays getting in the way, of course!). Well, the VNG test showed symmetric results of my vestibular nerve between my good (left) and bad (right) ears. She said my right side was “preforming beautifully” and that she would be reluctant to destroy a perfectly good nerve, and mentioned she questioned the menieres diagnosis. Has anyone else encountered something like this? Dramatic hearing loss with a healthy vestibular nerve? I’m wondering whether or not to destroy a perfectly heathy nerve, but I’m also dying to have to have my life back and for the vertigo to go bye bye. For a little history - I began experiencing pulsatile tinnitus and mild hearing loss in 2008, this varied in severity until August 2018 when the tinnitus became consistently louder (it never went away entirely before, it just got a lot worse then). Flash forward to August 2019 and the first of the vertigo attacks started. I call them light, med, and heavy based off how intense they are and how long they take me out. Heavy = puking, no walking, and last about 4 hours, med = I need to lay day down but I can still watch tv or move my head slightly without getting sick, lasts about an hour or less, I can walk if I’ve something to hold on to, and light = as long as I don’t look down or move my head too quickly I can walk, slightly nauseous but don’t need zofran, only lasts about 20 minutes. I have about 4-5 light, 2-3 med, and one or less heavy per week. Hearing loss is down to about 20% in my affected ear with no word comprehension. My hearing loss and tinnitus do not fluctuate with vertigo, they are constant and affected more by pressure changes in my head, loud sounds, or the volume of my own voice (ie. it hurts when I yell) If anyone else has an experience like this I would love to chat! Feel free to shoot me an email at [email protected] and I’ll send you my phone number (I already get so many scam bot calls I’m afraid to leave it online lol) I hope everyone had a wonderful, safe holiday! - erin
I definitely have Meniere's. My tinnitus is also pulsatile, but initially that freaked the docs out. I needed an MRI to rule out tumour or aneurysm. Have you had any imaging done? For the nausea and pukes... I found sniffing rubbing alcohol worked better (and cheaper!!) than Zofran. Where do you live? Are you happy with your specialist? That's tough, with an unclear VNG result. When you have vertigo, which way does the world spin - clockwise, or counterclockwise?
Erin, Is your Dr. questioning her own diagnosis? Your symptoms are very similar to mine, except I have only had three major vertigo attacks, all this year. I have not had a VNG test. In your Avatar, you appear very young. How old are you? You look too young to have Meniere's, but the symptoms are certainly there. Jim
I don't think there is such a thing as being "too young" to have Menieres's. It's certainly much less common in very young people, but it does happen. I was only 17 when I started having issues. I know someone who also started having issues at about that age, and I've seen several people post here about having been dx'd in their early 20s.
Erin, I would suggest that you not do anything too drastic at this point, at least not until you have given less drastic measures a fair try--especially that you appear to be young. Destroying an ear is serious business, not something anyone should jump into too quickly, especially considering that there is no turning back and it's possible that something could happen to the other ear at some point in the future. Have you tried any of the supplements that are talked about here? JOH, B5/B6, and other things that have been mentioned? Betahistine? Especially that you have just been recently dx'd, and it seems that your doctor is now questioning her dx. What other testing have you had to rule out other causes of your symptoms? Please consider all this carefully. Good luck, whatever route you choose to take.
I was diagnosed just after my 21st birthday. Symptoms lasted about a year and then disappeared for about six years completely. Hang in there. Be patient. Learn everything you can. Start conservative and work your way up, if you need to!
This is exactly what happened to me except I was prepping for a Laby. After the VNG showed a healthy vestibular nerve, my Doc started treating me for MAV and I jumped on the Buchholz diet. Bye Bye vertigo. It's been 5 months now. My left ear hearing is gone. Doc still beleives I have Menieres.
Hi Anne, Thanks for the rubbing alcohol tip - the zofran is definitely not cheap! I'm in Atlanta and I like my specialist. So far she's done an MRI and ruled out an acoustic neuroma and the VNG, no tests other than those two and the hearing test. And it's interesting, no one's ever asked me about the direction of the spins. I started paying more attention over the holidays and it seems to be mostly counterclockwise but sometimes it seems like some objects stay fixed while others are moving up and down. To actually consider that while it's happening did make it a lot less scary though, so that was a plus!
Thank you for the advice! While I would give just about anything for the vertigo to stop, I am very hesitant to do anything destructive. I've looked into some of the supplements but I have yet to try anything. I was thinking it might be best to add them one at time to see what works for me and what doesn't. In your experience, how long should I take a supplement to evaluate whether or not it's working? I've been doing a low sodium diet since August and so far no change there.
Read Buchholz, "Heal your Headache". It cost me about 10 bucks to download on my Kindle. I'm also on 25mg of Topiramate and a diuretic (1/2 dose), LOSO and various supplements. It was the Buchholz diet and MAV meds that eliminated the vertigo for me. I beleive the LOSO still has an affect on me as well. Example: DW and I went out for dinner last Friday. I had a pork chop that tasted like a salt block. 24 hours later I had some slight dizzy for a few hours. This is a pattern I have been able to repeat.
Regarding the direction of the spins - I think clockwise means it’s coming from the right ear, and counterclockwise means the left ear. But I’m not 100% sure on that.
Pulsatile tinnitus comes and goes. When it’s bad, I know vertigo is imminent. Sometimes is soft, sometimes it’s incredibly loud/powerful. Sometimes it’s gone. When it’s gone I am usually feeling good. I like having a warning for vertigo, even though the pounding is maddening.
Mine has been constant for about a year and half now. There was about a month over the summer where it seemed to let up a little (or maybe I was just less bothered by it - this was pre-vertigo) but other than that it’s pretty much the same all the time. The vertigo hits out of nowhere, usually right after I’ve bent over to pick something up, or turned my head too quickly, and the tinnitus often gets louder in the same positions.
Personally, I think it's better to add them one at a time. This way you can have a better idea of what is helping or not. When I have tried something new, I like to give it 3 or 4 months. If I haven't noticed a change for the better in that time, I've moved on to something else. Also, try to identify anything that seems to aggravate your symptoms. There may be something there that you can avoid or control. I've dealt with this for almost 50 years now, and sometimes I think I know more about it than the doctors do. I am not as bad off as many, but this still disrupts my life.
When I first started LOSO, I noticed improvement within a few weeks. Everything went back to normal. My hearing, no vertigo, pressure. Unfortunately, within 6 months, the Menieres progressed and LOSO has minimal benefits today. I can't say no benefits, but much less than initially at onset. I agree with CS. Try stuff and if it fails to help in 3-4 months, stop wasting your $$ and mental well being.