Menieres Vertigo

I think you should investigate MAV. Do a search on MAV on this board.

 

You cannot self-diagnose Menieres using Dr Google. You need proper testing by a health professional to rule out everything else that can mimic the same symptoms. It takes some time and will involve an MRI, caloric testing and hearing tests.

 

Gosh, you're really having a tough time, billiejoe. And not having a clear diagnosis is stressful and makes everything worse.

Regarding low-sodium diet, keep in mind your brain needs a minimum of 500 mg per day to keep the electrical currents working properly.

The aural fullness of Meniere's in my experience is only in the ear -- as if i've gotten water in it in the shower and can't clear it -- and not at all in the head. I don't think grommets make a difference with this feeling, since it didn't go away when I had my eardrum punctured.

So sorry you're experiencing this. Does your otologist or primary care doctor suggest referral to another specialty or suggest alternative possibilities for your symptoms? I hope you can find a person with the expertise to give you answers.

 

As it was explained to me, it is not that sodium per se is bad for menieres, it is the swings that usually occur in a higher sodium diet that mess with the fluids in the inner ear. I was told to keep the sodium intake moderate and spread it evenly through out the day. In my case it made no difference but to many it does i know.

 

Billiejoe, talk to someone now. This is all coming together at once and overwhelming you. You need a friend or relative by your side. Soon these things will be sorted out but you need to contact a friend or relative right now. If you do not have someone to talk to call the suicide hotline now. Please.
tel:1-800-273-8255

 

BillieJoe - if your experts believe that it is MAV have them switch around the different meds since there are a lot of med options for migraine and not everything works the same for everyone.

Not sure if your doctor would be open to it (and maybe you mentioned already) can you ask to try AntiVirals? They have worked for many (like me) for Meniere's. Key is following the load in dose and then taper down as directed.

I know that stress (for me) can definitely bring on attacks - so while easier said than done, trying to minimize stress is a target.

Please know that your family, your child need you in their life. I know how hard it is to want to keep fighting but just take it day by day. Focus on the small things each day. For me in those horrible early days - if I didn't have a vertigo attack that day..it was a good day. (yes my ear pressure was horrible, can't hear, feel like I am walking thru sludge...but no vertigo it was a good day). If I had a vertigo attack but it was short - it was a good day because it didn't last long. And I know how it sounds..but I really credit it with helping me. Helped me to break the "cycle" that forced me to focus on the bad things happening and living my life dreading the next "shoe" to drop. And while it may not be encouraging, my attacks are always in clusters. "Good" part about that is that you can hold on to the fact that they will stop for a while...and then there will be a blessed break. Just gotta get through the day and hope tomorrow is the better one!

 

See a good neurologist.

 

Good for you! Remember it is to steps forward and one back so do not throw in the towel when you have a step back, just keep going and look at the long picture.

 

I am also surprised antivirals are not tried right off the gitgo since they are relatively benign and relatively successful. They will do a surgical procedure or prescribe much more risky steroids at the drop of a hat. I think part of it is, most ent’s have a lot of surgical train8ng and they think that way. Sounds like you may be one of us lucky ones that antivirals work for. Remember, we are talking months, perhaps many months, til you get the full benefit. Also do whatever you can to reduce stress, enough sleep, allergies etc because it all saps the immune system. Good luck.

 

Why aren't antiherpetics a first, preferred treatment, now, after over a decade of profound success?

Professional arrogance. I’m a professional myself, in a non-medical field of biology. I have a consultancy that offers advice to clients to solve particular environmental problems; as with Meniere’s, problems for which there are a diversity of potential or preferred options.

Well, guess what? Any number of times I’ve had clients tell me that my “prescriptions,” my professional reports of recommended actions to solve their environmental problems for which I’m an expert, are “wrong,” or “inadequate,” or "...should be amended to include....”

What? What do these people think, that they know more about how to solve their problems than I do? They come to me for my experienced, successful answers and recommendations. But a few, then, turn right around and tell me that they know of better solutions; that mine are antiquated and inadequate, thank you.

Frankly, I’m a pro. I KNOW what works and what doesn’t. Having some ignorant client tell me I’m wrong, that what I’m recommending in my report is wrong and won’t work, or even worse, that the client has the better solution, rolls my eyes — unless I catch myself. Now, I ponder how, as we’d wish with Meniere’s professionals, that any and all solutions would be considered. Today, when confronted with contentious and alternative perspectives, I try diligently to consider any supporting data. Maybe there are other, even better solutions that I don't know about.

Arrogance is a professional trait of many physicians, duly acquired. The majority of physicians are oldest children. From diaperhood they were regarded by their parents as special, with special talents. In school, virtually all excelled, from kindergarten through medical school. They’ve always been regarded as smarter, more educated, and more competent that the rest of humanity. After all, just who is allowed to take a scalpel to living human flesh, or prescribe drugs with pages of listed, even lethal side effects?

Are those fine people markedly open to alternative treatment suggestions from their patients? Ha.

 

BillieJoe - in the states Serc is not commonly prescribed. If a dr agrees to do it the script has to be filled at a compounding pharmacy which is COSTLY. To share, for me, after the initial load dose of the antivirals I felt "better" but not as great as I remembered feeling. My dr agreed to extend the load dose for another 3 weeks and then I did the taper. That slight extension on the load in higher dose I believe was critical for me (maybe not everyone). Since then if I let myself go too fast/long days/exhaustion I will start to feel "off" and it is a reminder to slow down. The darn sinus issues definitely impact. But all in all big improvement.

It is the very nature of this disease/syndrome (whatever). Because it can be random and fluctuate easily without a true cause is precisely why the US dr/gov/pharma fight amongst themselves on what can work. Study may show something works (like anti-virals) but many will argue that it was only just because the disease wasn't active at that time and no connection to the med. For me, during my darkest of days, just being offered the chance/the hope of something working would offer a lifeline. Most of my drs simply said "got nothing for you". It was from the previous board like this that I first learned of antivirals and found a dr (not easy) who would give them a chance.

But like June said, don't get discouraged if there is a set back. We all get them. The key is to hold on to the fact that you have had some great days recently - which proves they will return. If an attack is shorter or less severe than a previous, hold on to that.

I am excited for you to have found a dr that is open to new things, trying every option and one that actually knows about Meniere's.

 

This message board has helped me to cope and to help with symptoms. I was diagnosed with Meniere's in the late 90's. My vertigo quieted down around 2003. In 2015 my vertigo came back more than ever and the episodes were like nothing I ever experienced in the past. They were more intense, more frequent and episodes lasted longer. This went on for about 4 0r 5 months. I started to look back on what might have changed recently and maybe it brought it on. I realized the episodes started up the same time I was told I had dry eyes and the doctor recommended to start using eye drops. They were over the counter eye drops. I stopped the eye drops and vertigo stopped. It has been over 2 years since my last episode. Yes, I still have tinnitus and other symptoms, but vertigo has stopped. Coincidence? I don't know, but I am not going use to use eye drops again to find out. I have read many other blogs on the internet where people had similar experiences with eye drops. I know this is not a cure-all for vertigo, but if I can eliminate something that might trigger it, what the hell it's worth a try.
I hope this can help someone.