Hi, folks. I've been off the forum for a good while. My question is, how many of you can directly connect sodium consumption to your symptoms and flare ups? I got the Meniere's treatment that apparently is a forbidden topic here (you know, the Australian guy with the oral vaccine), and it got me 50 percent better. I did it for 20 months. I wish I could have continued the treatment, but it's expensive, and I ran out of money. I'm sure that anther year or so would improve things even more. Anyway, I'm thankful to have at least a 50 percent recovery. One of the things he told me when I started the treatment was that sodium is not that big of a deal, as long as you don't go insane and load up on tons of salt. He claims that dysfunctional immunity is the real cause of hydrops. I've found that I can do pizza or Chinese and other high-sodium stuff a couple of times a week with no bad effects. I'm probably getting 2500 mg most days, but sometimes 3000 mg. or even more. I watch my intake, but not to the extreme that I used to. It just doesn't seem to matter that much. Doctors always recite the party line, "1500 mg a day," but that's quite hard to do. I'm just curious if any of you have actually gotten relief from a low sodium diet. I wonder how much of it is mental? Bless all, Ron
This is probably not the best place to ask that, because all the easy cases like that never bother to come here. This is site is mostly full of tough cases who didn't respond to LoSo, etc.
No relation at all in my case. I have non mm tinnitus and that is affected somewhat by very large amounts of sodium but the cochlear hydrops not at all. Caffeine, yes, sodium no.
For me, sodium is a big deal. When 1st diagnosed I cut my sodium intake to less than 1000 mg per day (closer to 500). My full time symptoms dissipated within 2 weeks. Unfortunately, a month later they(the howl and dizziness) were back with a vengeance. I continued the low sodium and my symptoms became cyclical ( 1 month good, 1 month bad). When steroids and diuretics failed to help, I started the JOH regimen. That was 3 months ago and I have not had any significant episodes since. A flare for me now consists of louder than normal tinnitus. While I still work to keep my sodium intake down, some times I fall short and eat stuff I normally avoid. When this happens for multiple meals in a short period, I can feel the tinnitus start to ramp up. I found that 1000 mg/day is a good target for me. While cutting back was a real pain, now I consider it a blessing for other dietary health reasons. We save money at my house as well since we don't eat out very often anymore. K
Hey Ron, what's up brother!!! How is it going down there in beautiful Florida? ....I was reading that Teachers of all professions have a high rate of mm along with pilots . Go figure. Just got an email from Della Santina at Hopkins and from what I can tell the vestibular prosthesis has been implanted in patients and the results have been phenomenal!! Guy with 10 years no vestibular function indicated he felt like he could ride his motorcycle. Be good!!!
Ron's an old hat at this shit disease, he knows just what to ask as he's been around .org for years and has tried it all including AV's.
Sodium really doesn't effect my symptoms at all. I don't notice any difference really. Most days I stay low in sodium, but some days I say f*** it and it doesn't change my symptoms at all. I think its kind of a hit or miss kind of thing. I've talked to people where it is really important that they stay below 1500mg sodium or their symptoms get really bad, and I've talked to people who tried the diet change and saw that it did nothing and ditched it because that low in sodium is ridiculously hard. With this disease all treatment options seem really hit or miss.
20 months for a 50% improvement in which symptoms Ron? If there is immune dysfunction then anything that boosts the immune system has to help. A LSD will improve diet and health and thereby indirectly play a part in that process.
My symptoms have been chronic daily dizziness, brain fog, imbalance, and screaming tinnitus. I had one 100 mph vertigo attack a couple of years after being diagnosed. Haven't had a bad one since, a couple of small ones. I went bilateral 4 years ago. Immune modulation is a good thing; Immulox is good for that. But Immulox does not have Meniere's-specific antigens. You have to get that from the guy we're not allowed to talk about
I've never been able to tie sodium to Meniere's. I happen to have a low sodium diet anyway, but eating more salt doesn't seem to matter to my system. By the way, how can I find out more about this Australian doctor with an immune therapy? This is the first I've heard of it.
Ron and Bulldogs nice to see you both so to speak.Salt never made much difference to me either. Looks like I am going bi as well. That's great news about the implant. Thanks for posting that. I am also a teacher.
can't say I see a correlation btw my sodium intake and my symptoms but since I had an episode of vertigo with persistent vomiting about a month ago I have decreased prepared foods, foods containing gluten, dairy except for eggs, chocolate and I have eliminated caffeine. I've always eaten lots of nuts so now I buy the one without salt. I've never enjoyed cooking but I'm trying to eat more fresh fruits, vegetables. I'm trying to decrease my stress and think that stress may have played a part in the episode I had about 4 weeks ago.
"By the way, how can I find out more about this Australian doctor with an immune therapy? This is the first I've heard of it." Google Stephen Spring and Menieres. Ron, On the topic of "for profit" Menieres treatments I have been trying Advanced Ambrotose and its aimed at the whole immune system support. Its quite pricey (about $140 for 1.5 months worth), but I know a 55 y/o woman who had vertigo attacks from her Menieres every other day and this has brought it down to twice a year. Its still pricey but may be worth a shot
I tried the low-sodium route for a month, no difference in symptoms. Maybe I didn't do it long enough. I also don't have constant rotational vertigo. More aural fullness and dizziness and seasickness. My ENT doesn't like to move forward until there's rotational vertigo. I just can't stand the constant seasickness and fog. I'm currently in the middle of my second round of Gentamicin. First round-no vertigo. Bring on round two.
Coach, A month of low sodium should have shown something by now if it was gonna help. What was your target daily allowance. My Dr. said 1500. I found that my normal diet was already at 1500- 2000. I originally went overboard with a target of 500 per day. Even at that, it took me from full time symptoms to cyclical symptoms. I increased to 1000 and did not see a reverse change. It was JOH that improved my flares to tinnitus only. It only goes to show how variable MM is. Out of all the treatments my ENT prescribed, low sodium diet was the only one offering limited positive change. K
I didn't know you were allowed to use his name on this forum. I have his e mail address if anyone wants to PM me. He's very busy, and it may take a while to get a reply. Plus, get ready to spend some big money. I'm talking many thousands. I'd be happy to talk about my (and others') experience privately ff the forum.
I've read on many forums that it's not necessarily "low" to "very low" sodium, but a consistent intake. Keep it low-ish but consistent. I've always been consistent (2000-2500), but even when I lowered it to 1500, it didn't do much. Like many have said, what works for one doesn't always work for all.
This is what i was told too, keep it even throughout the day. Dont save up for a splurge at night but eat the same amount more or less at all your meals. In fact, the same with sugar. Still, for me, it didnt help.
I have found (thanks to someone's suggestion on this forum) that it helps to have something high potassium along with the higher sodium (and for me that's not too high). Coconut water is great. (Note that coconut milk and nut are high arginine, so not good for a herpes virus component, but the water is fine.) Bananas work too.