Any ideas? Bad phase

Adominique, I can't imagine having MD for as long as you've had it. And bilateral. My heart goes out to you.

Just a humble opinion from some guy on a forum...but your situation sounds like what they call, "life altering". Serious stuff. Your "specialist" is messing around with steroids, which doesn't have a good success record. And he's asking you to wait months in your condition? Again, I'm just some dude, but if I were in your situation I'd throw on a nightgown and get to a serious vestibular clinic asap.

Like the House clinic in LA. Or Johns Hopkins back East. Texas has some fine institutions. Florida & Arizona too, where old people with balance issues hang out.

If you're afraid of surgery after what your life has been like, then I don't know what to say.

 

Adominique, your quality of life has gotten to a point where you need to assertively find solutions. You have bilateral mm, which presents significantly more challenges than for those of us who are one-sided. As Pupper suggested above, seek out the best Meniere's specialists you can find and get multiple opinions. You have a lot of life ahead of you, and you need to proactively claim the best quality of life you can have. I would add to the previous recommendations Mayo Clinic Rochester, but because of overwhelming demand for Meniere's treatment, they limit service to residents of Minnesota and the directly surrounding states. Wherever you are located, it's worth getting a consultation at a top clinic, even if there may be some travel involved. Even though to us Meniere's is an everyday thing, it is still a rarity to the average ENT. After seeing one or more specialists, the treatment plan you decide on can probably be worked mostly through your local clinics. Be well.

 

Regarding susceptibility to colds and flue --- which, of course, can seriously complicate matters in the ear for those of us with Meniere's or related afflictions.

I, too, was a teacher; exposed to all the colds and flues the kids distributed in class. But I started taking 5000 IU of vitamin D-3 a day (cost of 3 cents), and haven't had a cold or flue in 18 years.

Many other health benefits from adequate supplementation of vitamin D-3. Virtually all moderns are vitamin D deficient; suppressing the immune system, etc.

And, no, 2000 IU are insufficient. Take 5000 IU and see what happens. Many good, subtle outcomes, which for some includes better sleep. Before vitamin D, I used to get SAD, seasonal affective disorder; the winter blues (Dec through Mar depression). No more.

--John of Ohio

 

Like Puppet says, life altering.

For me (another schlub on the interwebz), and for a number of people i've talked to, gut and dental issues are often implicated. No two people ever have the exact same set of symptoms. We're the 'lucky' people who get the MM (Meniere's) symptoms, but you've likely got other health issues.

Leaky gut (yes, it's real, it's common, and there is plenty of science to back it) happens when your gut microbes get too many of the wrong kind. This damages your gut lining, which allows yeasts/germs/viruses to enter the bloodstream where they take up residence in various parts of the body and wreak long term havoc.
If you have irregular bowels (sorry, tmi), you likely have gut problems.

Another common area of infections is in the dental area. If you've ever had bleeding gums, or had gingivitis, or periodontal disease, or ever wore braces or had a mouth injury, you've had situations where again, the oral bacteria/fungi/viruses enter the blood stream, coincidently very close to the vestibular nerves.

I'm thinking that if you've had long-term sinus problems, then that would be another area where microbes could enter the blood stream, again, close to the vestibular nerves.

What has worked for some people, and doesn't require a doctor, is to make sure you're on a low carb, wheat free (dairy free if dairy is a problem for you) diet. Google 'Candida diet' or 'alkaline diet'. If this is the right approach for you, you should see some improvement in symptoms in two-three weeks.

Additionally, get these pre and probiotics - You may already be taking probiotics, and that's fine, keep taking them, but this is new technology - the prebiotics are macrophages, which are cells that seek out and attack the type of microbes that are bad for your gut. The probiotics are a spore form. A probiotic spore will have a better chance of surviving in the gut.
Home - Tested. Trusted. Dr. Tobias.
You want to get the "Deep Immune" Deep Immune - Tested. Trusted. Dr. Tobias.
They are a German company, so until Brexit you should be able to get some. I get mine (US) on Amazon. I have no relationship with the company other than as a very satisfied customer.

If you've ever had any of the dental risk areas: Root canal, bleeding gums, gingivitis, periodontal disease, wore braces, had a mouth injury, then you're in danger of apical infections. "Apical" means the area around the root of a tooth, but on the outside of the root. Root canal procedures are notoriously unreliable worldwide, they often leave significant pockets of infection. This was my deal. I've had three documented dental apical infections. One was from a 40 year old botched root canal. One was from a 1 year old botched root canal.
My case is extreme, but if any of that applies to you, ask your dentist to take 3D cone beam images of your mouth, and then, with the software viewer, examine the apical area of each tooth. Any weird looking shaded or lighter areas, even if the dentist doesn't think they're significant, are worthy of a further look.


Additionally, I know the CBD oil is medically approved for some things in the UK, maybe your doc will give it a try?
That's been a 'miracle' supplement for keeping the vertigo at bay for me since I discovered it 6 months or so ago. Originally the docs told me to use valium under the tongue. Slow and drowsy. meclizine (less-drowsy dramamine formula) is faster and a bit less drowsy. CBD worked quicker and with none of the drowsiness.

Good luck!

 

I take the tincture oil a few drops under the tongue. I will say, that if you're right on the edge of an attack, I doubt anything will stop it. If you decide to try it again, take a dose in the morning before symptoms get too bad.

It's entirely likely that you have biofilm infections in the sinus areas where your ear infections have played out over the years. Look at my Biofilm theory thread for some pictures of biofilm colonies in the sinus areas.

I'm not sure what to do about it, but it helps to identify the problem first.

eta: Changed "double" to "doubt"

 

I had trouble with the standard hctz diuretics, but did much better on spironolactone/Aldactone, a potassium-sparing diuretic.

I wondered at one point whether the diuretic was actually helpful, so cut the dosage in half for a couple of weeks. I had a big surge in vertigo episodes, so went back to my regular dosage (50mg/day), and the vertigo subsided. Like anything with Meniere's, cause and effect is nebulous, but this experience was enough to keep me on 50mg spironolactone for many years.

 

Papa Joe, do you take CBD on a daily basis as a preventative, or do you use it as a rescue medicine at the first sign of a vertigo attack? I'm confused about how it is used to be beneficial.

 

Daily as a preventative, and more if I'm feeling wonky.

I'm not sure how the attacks go with you, but I can tell when I get up if it's going to be a steady day or an unsteady day, with unsteady days being liable for an attack. On unsteady days I take more.

 

Good info here. How’s it going now Clare? Do you have good rescue meds (Ativan sublingual is fast)?

I’m on 5000 vitamin d for osteopenia but just realize my SAD is not bad so far this winter!

See my signature to see all the stuff I’m trying. I think a huge component is our barometric chaos here in calybut I’ll try Eve short of surgery before considering a geographic experiment.

Keep researching Keep us posted on what’s working or not.

 

Hey adominique,

How are you doing? Any luck finding a good ENT?

Hope your symptoms have improved a bit (or alot)!

Kind regards

 

Hi adominique, I am so sorry to hear you are going through this. One question and one suggestion. The question is, have you tried the antivirals route? Given that your symptoms are so triggered by viral issues, it would seem to make sense to try antiviral medication to see if you are one of the people it helps. Second, I used to get colds and hear infections every year until I upped my Zinc intake. You don't want to go crazy with it, it will make you nauseous if you take too much. But I take a calcium supplement (Advacal) that has a small amount included, and I take an extra 25 mg a day at the very first sign of a cold. I've been doing this for some years now and have been far less sick than I was before.

 

Anne, thanks for asking. I'm doing very well now after laby surgery in August. I have no fears of vertigo or nausea, can eat what I like, don't have to carry rescue meds, have a more hopeful outlook, etc. The surgery was truly life-changing for me.

 

That’s great to hear. Wow. I still want to avoid surgery if I can... but good to know it can be a positive game changer!