hello - yesterday I posted a bit of a depressing rant... sorry about that, ???just got diagnosed and am trying to wrap my head around it all. Tell me this, did the diet changes make a big difference in your wellness? What is the single most effective change in diet or lifestyle that you have made that has made positive changes in your health? In your opinion, should salt intake be restricted?
After I was diagnosed I immediately changed my intake and eliminated all caffeine and lowered sodium. My blood pressure lowered too much so the doctor had me go back to normal. But I didn't seem to notice any difference one way or another. Reducing stress and making sure that I get plenty of sleep are two things that do have a positive impact.
When I was first diagnosed I did low salt cut out caffeine and alcohol. I had great success with these changes for about 5 years. Not so much after that as the disease progressed.
interesting - thanks for your input. I'm so confused about this disease, if it even is a disease or if it is a syndrome - I will try to modify my diet, of course, it isn't easy though.
There isn't just a single item for me. Once I eliminated caffeine, alcohol, msg and anything high in tyramine my improvement was rapid. My suggestion would be at some point start an elimination diet from scratch gradually adding an item each day or two days to discover what does and doesn't worsen your symptoms. That's if you do have any triggers, but if you don't approach it systematically you will never truly know.
I restricted salt, caffeine, alcohol, etc. in the beginning. I blamed myself for not being strict enough when the symptoms returned. In the end, nothing made a difference. So disappointing and scary during that time. The low sodium diet made me significantly worse. Luckily, finally went into remission, no thanks to my endeavors.
Early on - when my episodes were at their worst - I discovered that "Aspartame" was one of my triggers. It made a big difference in the severity and the number of episodes. I switched to the artificial sweetner Splenda and tolerate it just fine. I also discovered that reducing my salt intake helps with the ear pressure. Be careful with that though - at first - I went all out and cut the salt almost completely and discovered the hard way that you can overdo that - you need a certain amount of salt! Actually - the main trigger I discovered - was the altitude where I was living. I had always lived at the lower altitudes - around 500 ft. or so above sea level - and - shortly after moving to a place that was almost 1000 ft. above sea level - the first episode hit and they continued for as long as I lived there. I tested that theory out a lot of times by driving into the mountains when I was feeling ok and no vertigo - then - almost every time - when I got to the higher altitudes the vertigo would start and I would have to pull over and stop and take a Vertigo Heel pill or two and sometimes a Meclizine till it slowed down enough for me to continue down off the mountain. I now live at 220 ft. above sea level - and have not had a full blown vertigo attack in over two years. Just a few times of minor room wanting to spin and dizziness just after moving here but no major whirling and vomiting like before and it has been about 6 months since I have had any symptoms at all. I also have been on the John of Ohio regimen for over 4 yrs. and that is what has made me almost symptom free - especially since I got serious about it and started taking the L - Lysine the way John says to do it. With me - it has been a lot of experimenting and taking a look at my whole lifestyle - trying to find the triggers and eliminating them and watching the results. It doesn't happen overnight - and it does take a lot of patience - but the effort is definitely worth it. I have my life back now. I can confidently leave the Vertigo heel pills and the Meclizine at home now when I travel. Oh yeah - I also see a very good - board certified Atlas Orthogonal Chiropractor every few months. I have found this to be a very helpful link in the chain for overall well being and when my neck "goes out" I start to get unsteady on my feet and feel a bit dizzy most of the time and I don't drink - at all! There were actually other triggers that I discovered and things I learned to avoid or change the way I did things. The vibration of the riding mower going over my bumpy yard would set things off at times if I went too fast or didn't use a soft seat cushion. Also stress of any kind was a major trigger. Another thing - Please - excuse the long post - I am new here too and have been wanting to tell my story for awhile but didn't know where to start. I also found that it was a mistake to stray from the brand of Lemon Bioflavonoids that JOH recommends. I switched recently when they were not available and I could tell the difference in my ear almost immediately.
Eliminating all caffeine made a noticeable difference. Sodium made no difference for me, for some it does. The big improvement for me came from antivirals and allergy shots.
thank you all for your input, it is so interesting to me. I'm feeling a bit better. Right after diagnosis I was a bit down and feeling sorry for myself. I also have systemic lupus and have given up artificial sweeteners and reduced alcohol but since my diagnosis I've drake a little (one or two, really, not a bender) I had no vertigo but the ringing sound increases. I gave up coffee a few years ago because of lupus related GI problems but went back to it after a year. I do think I need to cut back and perhaps eventually cut out the coffee, but need my comfort too. I really feel that if I get my lupus in check then this will also fall in check. JofO sent me a long email with hints about my lupus, I'm glad his program is working for you riverrat, I have tried what he suggested (have had lupus for 6 years and have tried many things) and in some cases has made my lupus worse so I am very careful about alternative programs Vikx - question; when the low sodium diet made you worse do you mean your menier's symptoms increased on lower salt? Did you have other ill effects of that? I don't think the altitude is a factor in my case. My first episode was here in Idaho at about 2600 ft but the next three episodes were on vacation at sea level, then more episodes back in Idaho around Christmas. It is an intersting factor though. redwing; question - wondering if your five year remission was because of the diet changes or if it was just arbitrary and a coincidence? what are your thoughts on that? Did you have any breaks in your diet regime during those five years and did symptoms return? I feel that this thing is caused by inflamation, for some because of allergy or virus but for me probably autoimmune. What are your thoughts on that, do you think I'm correct about inflamation causing it?
redwing; question - wondering if your five year remission was because of the diet changes or if it was just arbitrary and a coincidence? what are your thoughts on that? Did you have any breaks in your diet regime during those five years and did symptoms return? I was never totally free of symptoms but the changes in diet certainly made my symptoms more bearable. The vertigo attacks would not be as often sometimes going months without an attack. I do think it was the diet change. The only difference in my regime was alcohol, I started indulging in a drink now and then. To this day I still eat low salt and avoid caffeine. When my symptoms were at the worst I was under a great deal of stress. My 6 week old granddaughter was dx with a liver disorder and was put on a transplant list at age 1. All worked out well as she received her gift of life at age 18 months. The year leading up to the transplant was very difficult. I believe stress is the key factor in my symptoms returning. Unfortunately my symptoms became worse to the point where I was having drop attacks. I chose to have a laby, it was the best decision for me.. Exercise is a great stress re-leaser and was another key factor for me in controlling my smyptoms and still is. Low sodium means that, low. Do not eliminate salt all together as that can be a health issue too. Increase your exercise, decrease stress and watch your diet. Give it a try and best of luck to you.
I think it is intertwined with the other things like allergy, virus and injury to the other ear even when other autoimmune diorders are not present but other auto immune disorders appear to be present fairly often too.
thank you Redwing - I'm sorry you had to go through all that with your daughter and glad to hear she came through well. That must have been very stressful. I am under some stress right now, we are evicting a deadbeat tenant - but this will pass and I just need to take it in stride and get to my yoga class. thanks all
Diet-lower sodium intake, exercise, reduce stress. I also started allergy shots as this turned out to be one of my triggers. They did make a difference. I am fine until the holidays start and then my diet goes to hell and I don't exercise enough. My symptoms come back quickly. You will learn in time what works and doesn't work. What I've found from this forum is that nobody is the same. Everybody has different triggers and different things work. You just have to stay positive and keep trying until you find something. Good luck! You're not alone.
It's interesting, for a time a low salt diet and especially avoiding caffeine really made a difference. I also tried allergy shots and had mixed results but I believe they are worth considering. If I were starting over with treatment today I would also consider antiviral treatments early on to see what affect they had on me. There are many more things you can try including supplement regimen's like John of Ohio's, or more traditional treatments like steroid shots. More about various treatments I've experienced at my blog here: http://menieresandme.blogspot.com/2014/11/updated-introduction-to-menieres.html