Do you think I have Meniere's disease?

Boston - Are you still taking the B5/B6?

 

California Sun - are you following the JOH supplement diet?

 

No, not doing JOH. I have been taking a magnesium supplement and recently started back on the B5/B6. I had taken it for a while but got to thinking that maybe I hadn't given it enough time, so trying it again. I went to a different doctor back in October who put me on a stronger diuretic and also allergy medication.

I had gone through a complete remission for between 4 and 5 years, then about 3 years ago started having issues again. I can only hope that this will go into another long remission.

 

California Sun - I’ve tested positive for an allergy to mold. Apparently, an allergy to mold is related to fungal infections and is part of the reason my doctor prescribed antifungals. I’m curious what type of allergy you have and what type of treatment you are using. I’m also considering taking B5/B6.

 

My allergies are seasonal--pollens, grasses, that kind of thing, primarily in late summer and fall. My allergy issues where I live now are much less severe than where I used to live. The doctor is having me take a 10 mg Claritin daily. I never noticed any connection between the Meniere's symptoms and allergy symptoms, but it is nice to not have to deal with seasonal allergies any more. It has not been suggested, and I have not, and will not do the allergy testing/shots. I'm sure I'll catch some flak for that but that is my choice.

Years ago I was treated with an antifungal by my doctor at the House Clinic. It was something they were doing at the time. Didn't help.

I have had this for decades. The only things that have seemingly helped somewhat is the shunt surgeries, the diuretic and the magnesium.

At least there is the hope for all of us that there is finally research/trials going on for things that could possibly help.

 

No, didn't really seem to make a difference with the tinnitus. How does the steamer help? I eager to try and want to know more.

 

The steam in combination with some oils (eucalyptus or olbas) helps open up the sinuses and eustachian tubes. I’m still in the early days, but I find it helps open my ear, which makes my hearing better. No effect on tinnitus so far. It has worked the first three times I’ve used it, but I’d like to give it more time. You know how unpredictable this stuff can be. All of the benefits of the steam could just be coinciding with a couple of good days. You can buy facial steamers or just boil water, put it in a bowl, then place your face above the bowl and put a towel over your head and breath deeply through your nose.

 

A steamer can be helpful with sinus issues and possibly eustachian tube issues, but I am very skeptical that it would be of any benefit for tinnitus or for Meniere's related ear pressure.

 

I agree, but we’re not sure yet what’s causing the blocked feeling. We haven’t experienced any vertigo or dizziness yet. The symptoms we have described are also similar to Eustachian Tube Disfunction. It could also be a combination of both, so opening up the head might provide some relief.

 

It's worth a try. Worst thing that can happen is that it doesn't help, and it isn't something risky that could possibly harm you.

 

Hi California, what kind of stent surgery did you have? Were you able to see immediate relief? I am going to see my ENT tomorrow and see if this is worth exploring. I hadn't considered Magnesium, will give that a try. Your episodes of prolonged remission should give DJ and I some hope.

After a horrendous day yesterday, I started to feel a little better (with the ear pressure) last evening, but it is back this morning.

DJ - I think I will try the streamer, where do you get the oil.

 

The surgery I had was the endolymphatic shunt surgery. First ear was done around '74-'75; second ear was done in '93, so it's been a long time. It has put an end to the severe vertigo, at least so far, and over the years any dizziness has diminished to much more mild and much less frequent. This surgery spares the hearing. What I've heard is that this surgery isn't being done much anymore because most people haven't had a lasting result.

There was some vertigo during the healing period but nothing like it had been. The other symptoms came and went. I had a better result in the right ear than the left. That ear has been pretty quiet so far for about 25 years. Left ear is the one currently giving me problems with tinnitus, pressure and fluctuating hearing. I have a moderate hearing loss in my right ear and a severe loss in my left ear and have lost a lot of hearing in that ear over the last several years.

The surgery I had was the same surgery the astronaut Alan Shepard had--and he flew to the moon afterwards.

 

The eucalyptus oil is from Whole Foods. I haven’t us the Olbas oil yet, but I recently order it from Amazon. You can probably get both at Amazon.

The eucalyptus oil is from Whole Foods. I haven’t us the Olbas oil yet, but I recently order it from Amazon. You can probably get both at Amazon, but the delivery time is a couple if days.

 

California Sun - Are there any major risks to the surgery? How do they access the inner ear with the shunt? Thanks!

 

As with any surgery, there are risks, the main one I remember is a possible spinal fluid leak during the healing process, but from what I understood, this is not common. It's been a really long time so I don't remember what the risks are. At the time I had it done, it was considered a less invasive surgery and done as a first surgery when the ear still has usable hearing, before resorting to the more invasive surgeries.

The inner ear is accessed from behind the ear. A small piece of the mastoid bone is removed. From what I understood, there is less risk with this surgery than with some of the other surgeries done for Meniere's.

 

Hi California Sun,

You mentioned research/trials going on in your previous post above. Do you have a list of the research/trials or is there one on this site? Thx!

 

Sound Pharmaceuticals is working on something called SPI-1005. www.soundpharma.com Mac, on this site, was part of Phase 1 and 2 trials. The drug has been fast-tracked by the FDA through the remaining trials. There is also work being done on something that would regenerate the hair cells in the inner ear and possibly restore at least some hearing. Sorry, I don't have any links for that, but I think that Mac may have posted some links on the forum. We can only hope that these things pan out. But at least there is some hope when before there was none.

 

Thanks, I found the second one. It’s called Frequency Therapeutics. If you search that name on this site, there’s several links.

 

Guys, check out this forum:
Research News
Lots of discussion about upcoming treatments from variety of companies.

 

Hi Boston,

How are you doing? How was your visit to the ENT? I’m about the same as before (fullness, tinnitus, and hearing fluctuating). The steam is still helping, but only if I use the eucalyptus oil. The Olbas oil was too strong, and made me feel even more uncomfortable. I hope you’re doing better.