Desperate for related stories
Posted , 6 users are following.
Hey everyone,
I'm new to this forum. I am a 34 year father of 3 and a traveling musician. Back in June of 2016 I suffered an extreme vertigo attack for the first time. I went to the ER had a CT scan and it came up negative for any major issues. After that, the spinning turned into constant disorientation if I walked or moved at all for the next 3 weeks like my brain was being jolted. I then saw a doctor who checked me out and I had a double ear infection, but what's puzzling was I didn't have one when they checked me at the ER 3 weeks prior. At any rate they prescribed me antibiotics and literally the next day the vertigo was gone. I wish that was the end of it, but in Jan of this year I had another vertigo attack that was much less severe and wipped me out for the day but I was pretty much back to normal the next day with a little dizzyness. Here I am now and 3 weeks ago I suffered the worst attack I have had. Aside from seeing an ENT and getting an audiology test and seeing a chiropractor I've been in bed. With that all being established, the ENT doctor said that I may have Meniers or Hydrops. From what I've read it seems Meniers comes on sudden and affects hearing. My hearing results came back fine. Also this all has happend on the left side of my ear but 3 days ago my right ear started ringing mild but hasn't stopped. I'm desperate for answers. Does anyone have any thoughts or words of encouragment? Have you been able to go back to a semi-normal life with Meniers?
Thanks!!
Jeremiah
0 likes, 5 replies
lana56327 jeremiah_59837
Posted
Hi,
An ENT can do a lot of different tests that helps them rule out other issues than Meniere's. Sometimes, I think, some practitioners jump to Meniere's Disease, when the good ENT specialists check out other things. An ENT also knows the latest treatments for whatever it is that is causing your symptoms. Your ENT only did a CT scan? I had quite a few other tests, plus an MRI of the head. You need a definite diagnoses, not just that you 'may' have Menieres. Can you get a second opinion from another ENT? Medication can really help if they can determine that it is indeed Meniere's. If you are in the U.S., they generally give you a diuretic, advise a low-sodium diet and some give a low dose sedative to use as the vertigo starts. It helps sedate the vestibular nerve and helps with the nausea. In my case, the diuretic worked, though mild symptoms remain off and on. I've had it for 9 years now and it does get better. But I suffered a lot in the beginning until I got the firm diagnoses and the diuretic. If you are in the U.K., they generally use Betahistine, and that seems to help based on what I've read here. We're all with you in this! But if it is something else, maybe it can be cured!
melissa04000 jeremiah_59837
Posted
JMJ jeremiah_59837
Posted
Hi Jeremiah,
I'm so sorry to hear how horrible you've been feeling!!! There are so many different vestibular condtions that mimic many of the symptoms of Meniere's, that it's difficult for anyone to say if you have Meniere's without a complete workup. Typically, a diagnosis of Meniere's results from having ruled out any other possibility for those symptoms. That process usually entails at minimum, having an MRI, a BPPV test, and an audiogram. In the U.S., they also use the following diagnostic criteria:
Definite Meniere's disease:
- Two or more spontaneous episodes of vertigo lasting 20 minutes and 12 hours
- Low to medium frequency sensorineural hearing loss.
- Fluctuating aural symptoms (hearing, tinnitus and/or fullness) in the affected ears. within 24 hours of the vertigo episode.
- Not better accounted for by another vestibular diagnosis.
Probable Meniere's:
-Episodic vestibular symptoms (vertigo or dizziness) 20 minutes to 24 hours associated with fluctuating aural symptoms (hearing, tinnitus or fullness)
- Not better accounted for by another vestibular diagnosis
Also, as lana pointed out, they always prescribe a low sodium diet, diuretics, and one or more medications for the vertigo, nausea or dizziness. Many people get relief from the symptoms of MD/hydrops, by simply reducing their sodium intake to 1500mg/day. So, that's a good place to start while you figure out your next step.
I would encourage you to see an ENT or otolaryngologist who will do a proper workup so that you can get some relief as quickly as possible.
I wish you all the best,
J-
kevin_90530 jeremiah_59837
Posted
I have been to about 5 ENTs...with pretty much the same thing you have and at the same age.
1. Nothing they can do.
2. Take a water pill.
3. Avoid salty foods.
4. Take motion sickness meds.
5. Zophran to help stop you from throwing up.
6. If that does not help...then there are invasive options such as injections and surgery.
When it first came to me in my life...there were just episodes...they came and went and life was normal inbetween. So, hopefully, it burns itself out and you can go back to normal for a bit.
maureen24786 jeremiah_59837
Posted
Hi Jeremiah...my story is similar to yours. I had labyrhinthitis quite a few years ago followed by periods of extreme dizziness. Then I met an ENT who advised that I should try a manoeuvre to counteract this as soon as I noticed the first dizziness symptoms. It involves sitting on the edge of the bed in the middle, counting to 30 seconds in an upright position then allowing the body to fall to the right and lying on your right side for 30 seconds. Then back to an upright position for 30 secs and then falling to the left. Repeat this as often as you can until the dizziness subsides. For me, this has been a lifesaver. I did it in the early hours of this morning in fact and it has saved me from a week or so of dizziness. It rebalances the inner ear crystals. It's a bit miserable when you are doing it but you have to tough it out. For me it works about 90% of the time. Also, if you know which is your "bad" ear, don't sleep on that side. There is also something called the Epley Manoeuvre but you would need to check that out. I don't know how to do that one. It's such a miserable condition...mine has been so bad I couldn't look up or down, awful! Good luck!!