I just found out I might have meniere's

Do you also have tinnitus (ringing in the ears)? And is the dizziness so bad that it is debilitating? How long does it last?

 

Well, it doesn't sound like "classic" Meniere's which tends to have distinct "attacks" rather than constant dizziness and imbalance but there certainly are variations so it could be. For sure you need proper testing to rule out other things like an acoustic neuroma....

In the meantime, I suggest you don't just sit around waiting. Whatever it is, you would benefit from adopting a healthy diet ASAP as that is so important in your recovery from anything. For example:

1. Be vigilant and diligent on your salt intake. Experts recommend that people get no more than 2300mg of sodium per day for good health. But that's a rareity in today's world where everyone is jacked up on salt and it is added to every processed food and added in copious amounts to restaurant-prepared food. Read labels, read labels and do the math.... Most people on here are aiming to be well under that at 1500-2000mg sodium daily and spread throughout the day (ie. not all at one meal with nothing at others....) Salt reduction is a must for MD and highly recommended for all other health conditions.
2. If you have any other obvious vices like smoking, alcohol, drinking lots of soda, etc.... time to rethink and remove!
3. Most people are sensitive to gluten and dairy and food allergies/sensitivites can cause many different strange systems by impairing the immune system and causing chronic inflammation in the body (including the inner ear). Educate yourself on what foods contain gluten (dairy is more obvious) and try to avoid these as much as possible until you see the doctor and see if that makes a difference. If it seems daunting to live like this forever, just aim to give it a solid effort for say four weeks and see how you feel.

Just these few dietary changes alone can make a difference and as I said - are beneficial for anyone, anytime, anywhere to achieve good health.

If you want to be proactive and have ever had a cold sore or chicken pox (Herpes viruses) you might want to read about the John of Ohio regimen in these forums which is required reading for any MD sufferer. You may want to wait for a proper diagnosis but it doesn't hurt to get prepared...

Further suggested research, if you have ever had multiple courses of antibiotics over the course of your lifetime, even for ear infections as a kid or acne as a teen, you may want to read up about Candidiasis, which is an imbalance of the types of yeast and bacteria that inhabit your intestinal tract. That too can cause bizarre symptoms. I don't know that it would be the only cause of your misery but it may be a significant contributing factor.

Anyway, I wish you the best of luck!

 

She has already given you some good advice until you have more data than you can have. But without tinnitus in principle it is not Meniere, it is also true that Meniere's symptoms do not appear all at the same time but little by little, but specifically tinnitus is the first symptom to appear in the vast majority of cases, being dizziness and vertigo the latter almost always.

My recommendation aside from the advice is that even if they tell you that you have Meniere, keep looking for more opinions from other specialists and insist that you do not have tinnitus if they tell you that you have Meniere.

So that you understand why I say this I will tell you dates and diagnoses that different doctors and ENT specialists have given me since my vertigo attack:
-February 15: Possible Meniere.
-February 21: Meniere
-April: Vascular malformation or Meniere (no, they did not know which of the two)
-June: Meniere almost certainly, but it could be the malformation too.
-Julio: Without me asking: The malformation is not the cause or anything, it is a very common malformation without symptoms. Meniere clearly.
-September: None of the above, dizziness and my tinnitus are the result of stress. I ask about my hearing loss and he tells me that this is not the result of stress, that he sends me to do another MRI to see if he finds the cause.

-On the way I asked an otoneurologist I met on social media online and she told me she thought it was a vestibular migraine, but for now none of the doctors who have observed me with MRIs, audiometries and a vestibular study have suggested this.

Tomorrow I do the MRI and in a week I have a consultation again to see what the new diagnosis is this time.

 

I have just returned from my local ENT. I was diagnosed with Meniere's in 2003 with many short bouts with it over the years, all withe the symptoms described. 2018 the bouts were getting more frequent, with major hearing loss, vertigo, constant pulsative tinnitus, and full headedness. After confiring with several different ENT's, MRIs, and scans, I finally went to Duke University, January 2020 where Meniere's was diagnosed again. First appt was great...full morning testing followed with an enlightening conversation with the Dr. telling me, although there is no cure, a lot has been found about the disease treatments. I left feeling hopeful, along with a prescription for Betahistine 24mg 2x/day. I can't say the betahistine is doing anything but I keep taking it just in case it is. Second, follow up appt, April 2020, same Dr. only this time he said live with it or surgery was my only two options. No explaination or options for treatments. July, 2020: A week long bout with vertigo, raging tinnitus which eventually subsided to where I was able to get around but still have all the same symptoms. Now, 2 weeks ago, a full blown attack came on suddenly, major vertigo, tinnitus, full headedness that would not let up. I was and have been completely incapacitated. However, I only have slight nausea not to the point of vomiting. My ENT, who I had previously seen for allergies, listened, questioned, etc, and came up with this conclusion. Long story short: I am a complicted case as Meniere's attacks do not last 2 weeks. He suspects I do have Meniere's (hearing loss is 90% in left ear), he is adding in another diagnosis of "viral neuronitis" which is an infection/inflamation that has attacked the left ear, which does come on quickly, can last a long time, gradually gets better on it's own. There is no medication for it. However, I will be getting another MRI to rule out any underlying conditions, beginning Transympanic dexamethasone injections (can usually see immediate results), then, depending of the TD injection response..or lack of...onto Transympanic gentamicin injections. Should all this fail, then it's a Labyrinthectomy since I already have hearing loss. Before surgery, he recommends seeing another ENT for a second opinion either at Duke or Wake Forest. This is the FIRST time viral neuronitis was mentioned. It seems these ear problems can have many causes. Hopefully it's of some comfort to you know 1. you are not crazy, 2. there are others who are on this same journey, 3. there seems to be hope.

 

SurferGirl - I hope you have given antivirals a very good try - Valacyclovir or Famciclovir?

 

No....no Herpes here!!! I had a very bad 4 month battle with recurring flu 2 years ago, for which I received 3 rounds of antibiotics, several weeks apar. The first round did nothing, I was allergic to the 2nd round, while the 3 round finally hit it. I believe this flu may have been the culprit.

 

These two drugs have never been mentioned... I will be sure to ask about this therapy. Thank you!

 

You will probably learn that the doctors are useless. You have to do it yourself.

 

I believe it's called simplistic herpes, not genital herpes. You need to try antivirals before going forward with anything else. I sure as hell didn't think I had herpes but antivirals worked for me.

 

There is Herpes Simplex 1 (oral type, the cold sores) and Herpes Simplex 2 (genital herpes). The majority of people have Herpes Simplex 1 (something like 70% I think) and have had a cold sore. There is also Herpes zoster (aka shingles) which is the reactivation of the Varicella (chickenpox) virus. And the majority of folks our age (on the assumption MD hits middle aged and older people mostly) have had chickenpox as kids.

Regardless, all are similar viruses that live lurking in the shadows of your body until they are reactivated by something (weakened immune system due to many various causes usually). Given the prevalence of cold sores and chickpox history within the population and especially the MD population, these are the viruses most likely to be the culprits.