I have scaned some of the threads on this forum about the diet and lifestyle changes etc, is there anything we can eat? is there anything we can do? WOW lets all live like a boring nun eating lettice leafs (is lettice a trigger? ha)
Personally, I started on a low salt diet, then threw caution to the wind. The only thing I ‘watch’ these days is caffeine and alcohol, but then i’m relatively well controlled on medication. Two coffees a day max, preferably none, but its too darn tasty!
If you are not on medication, then I accept the diet may be much more crucial, and for some may offer an alternative to medication. I think my condition is too extreme not to be on medication for the time being.
Mellybob I have lived like a nun for years as the excitement and activity of doing otherwise spoils it somewhat!!! Haha as you would say!
im trying to do the diet this time but looking at the no no’s its impossible for me im just staying clear of the biggys ie cheese,chocolate and caffeine!
its not in my nature to be able to live that way im afraid,im an outgoing person who loves life,ok maybe some things I could cut back on
I have dark chocolate in my porridge almost every morning now. On some occasions I can feel the brain wobbles after, but rarely. On symptomatic days I use Manuka honey instead.
I am too but if I try to ignore VM I end up in a nauseous spinning heap. My neurologist did say I have severe, chronic debilitating VM which probably says it all. I Also have gastric stasis and Alice in Wonderland syndrome,AND inflammatory arthritis and an arrhythmia!!! So dancing the light fantastic can happen only in my head.
its such a pain in the butt ,i understand VM is considerably much worse than the diet and lifestyle changes but what the hell caused our lives to be so much different from before? I find this so frustrating I really do!
Settle down everyone. Life is still worth living. There is medication if we need it. I have good luck with 3 months on Nortriptyline on occasion - usually the heat of summer sets me off. We have Mount Hagen Instant organic CO2 processed decaf to replace coffee and an occasional brewed decaf (but be careful). http://vertigotalesandtastes.blogspot.com/search/label/%286%29%20%20Lost%20and%20Found%20-%20WHAT%20TO%20EAT%20%20%28USA%29 We have wonderful Rooibus Tea (not chai) with Agave sweetener. Many say that one small square of chocolate a day doesn’t bother them. Some tasty chocolate items aren’t real chocolate but taste like it. Read labels. We have fresh cheese and an ounce of mozzarella or Swiss may not set you off. I actually do better with one ounce of hard cheese rather than fresh because fresh is worse if you are histamine sensitive. We have Breyers Natural Vanilla Ice Cream (put a scoop in you Mount Hagen decaf) and the Breyers Chocolate Natural Ice Cream is very, very, very low in caffeine. If you are avoiding the big offenders (like coffee and alcohol), then an occasion 1/2 orange, tablespoon of fresh avocado, 2 inches of fresh banana, may not bother you. Just not everyday and not all at once. Try the strict diet for two weeks and then slowly try small amounts of things to see if they bother you. You’ll be happily surprised. Maybe one piece of Margarete Pizza will be okay. Restaurant food is loaded with MSG so it is better to limit your eating out. My oto-neurologit started me on medication while I began the diet. That helped quite a bit. Now I use the diet to stay off meds. Hasn’t always worked because heat and hormonal change and an approaching storm are triggers I cannot control. I never thought I was dehydrated but I find I do better with 70 ounces of water/herb tea per day. Dehydration is a big factor and most people remain in denial. I find that taking an Allegra every 4-5 days helps the ear fullness and tinnitus. I seem to have late onset histamine sensitivities. So, we have a problem that will not disappear but each person can discover a way to control it. This site is a great place to get new knowledge. But it is true that our carefree days are over. Read up on things related, make a plan, keep a journal and move towards, not a cure, but control. Many have done this - they just leave the site so you rarely hear about it. http://vertigotalesandtastes.blogspot.com/search/label/%289%29%20Resources(www.vertigotalesandtastes.blogspot.com
OMG, Margaret! Finding the right medications to help you without interactions must be a total nightmare!! You are my latest role model if I feel sorry for myself!!! I count myself lucky that I, too ,have good memories to re-play in my head of dancing the light fantastic !! There was a song back in my day that is far more relevant to life than I ever realized when I was young (even with Mr. Meneire coming to visit whenever he felt like it!!) " Those were the days, my friend, we thought they’d never end…" Hang in there, girl…“we will survive”! (O.K. - I’ll take off my DJ hat now )
Love it Beth! That song has two effects on me depending on how VM is treating me, it either makes me cry (self pity creeping in) or it makes me want to dance. I learned to play the cello 3 years ago and that always makes me happy. My fingers struggle because of the arthritis but I have devised a way of getting round that, just have to move my whole hand more. Looks a bit weird but it works so what the heck! I can even manage to play in two orchestras, very kind people welcomed me despite my inexperience and I don’t struggle too much with the noise as somehow I can block it out and just focus on my cello which I am totally in love with so all is not doom and gloom.
Hell, who cares how it looks- you must be getting the sound right to have been accepted into orchestras! Great that you can work around your problem and still do what makes you happy. I also find that concentrating on something that makes you happy can kind of put the symptoms on the back burner for a bit. I Believe that if it’s good for the soul - it’s also good for the body…well, some things anyway… I built a fairly complex 3-D dragon in stained glass (my passion) for my my daughter when I started to recover this last time.
Yeah, its fantastic you are keeping that up. I’m a jazz singer and pianist and this condition has half broken my heart. I rarely play anymore due to the distortion of the sound (a loudness issue)… maybe some day…
This must be devastating for you, James! I most sincerely hope you can soon get back to some participation.
I’m quite convinced that it’s due to some sort of vibration issue. I find any loud (not necessarily by the normal standards!) noise terribly uncomfortable to painful. Although I have always put this down to the effects of Menieres and hearing loss, but am wondering more and more if it’s not the other way around. I personally find the higher registers more uncomfortable, and I also find I can hear the TV (for example). better if it is not too loud…possibly the louder volume causes more vibration = distortion???
Yes, totally agree, its some physical change in the ear that is causing a vibration. It mainly happens at low frequencies where I have not apparently lost any sensitivity at normal and quiet volumes. My bet its pressure on the vibrating parts of the ear that changes the resonant frequency of the ear. I’m HOPING that when the pressure drops (and its already dropped quite a lot because my tinnitus is quieter when I e.g. bend down that it used to be) the ear’s frequency response will improve again.
What I’ve noticed about a lot of ENT medicine is hardly any of them are engineers in approach. The ear is not just a neural sense, but its also a MACHINE, like a microphone, and this has PHYSICAL properties too.
So, hearing loss is NOT all about loss of neurons. I wonder if high frequency loss in old age is ALSO about a change in the physical characteristics of the ear, not just a drop in the number of working hairs and neural pathways. I mean, why specifically a loss of high frequencies with age? What’s so special about those hairs versus the rest of the cochlear? My bet is it is about degradation of the moving parts and the membranes too.
Well, I’m certainly no engineer, but I certainly understand and agree with your views…I think that in a lot of cases there is an underlying mechanical problem, be it inherited or inflicted, and most likely minuscule!! Sadly - there are still other triggers that keep the beast restless…“sigh!” Certainly EVERYTHING changes and sags with age…why not inside the ear as well??
Wow Beth that is wonderful. I was going to start stained glass work but freaked out at the grinder!!! Funny how I can play in orchestras with no problems, just very happy and yet I have the TV down so low other people can’t hear it. Very strange but I am not complaining!!
James I am so sorry to hear that you have had to stop playing, I have always said that playing music is my salvation (along with my dog) and if I had to stop it would, as you say, break me completely. Have you tried again now you are doing so well?
Not yet but I have faith that I will recover sufficiently to get back to it. Time is all we need!