Sensory Sensitivity

I always had problems around very strong smells. When I was a kid, my dad used to use pine-sol to clean the evaporative cooler pads for our air conditioning. I would always wait outside when he did that, because the whole house smelled of pine-sol and it made my stomach hurt, made me nauseated. I have also had high pitch tinittus, in addition to the more classic low pitch Meniere's tinittus. Does that sound like MAV? I also get ocular migraines on occasion. No pain with any of this though. I only very rarely get a tension headache, and even then they are always mild and go away easily.

 

It's making more and more sense to me. I actually think I started to get better from MM before I even started the anti-virals. I started JOH first back in February, and added the anti-virals after a few weeks so. Once I started JOH, I stopped getting deafer from the vertigo attacks I still had, and they weren't as severe. Those were probably MAV vertigo attacks, huh?

Is there any connection between herpes and MAV? I ask because April 7th was my last vertigo attack, till last week when I had another minor one. During that entire time, I still had balance problems and felt nauseated sometimes, but no vertigo. Seems the anti-virals and JOH did something to impact the MAV too, cause my diet actually relaxed a little during that period, instead of getting more restrictive. Prior to going into remission, it was already extremely restrictive as I had tried every damn thing I could think to try to get better.

 

So based on your experience with MAV, if I got on a strict MAV diet today and starting taking magnesium, how long should it take for symptoms to disappear? I'm not going to hold you to that obviously, just trying to find a source of motivation to do what I think I need to try next in my quest for health. It's hard to make this decision. It feels like this journey, if it can be called that, has already cost me everything. Giving up even more feels like life is asking too much of me. I'm willing to do it, I just need a reason.

 

That's a matter of opinion, and one I decidedly do not share.. One study I read puts the quality of life of someone with our disease, during a bad spell, at that of a terminal cancer patient 7 days prior to death. Only, we don't have the release of natural death to look forward to. Last fall, I was not pleased that this disease is not fatal. I would have been quite happy for it all to end. Please understand. I don't want to die. But what this disease does to people is not living. More of an endless death.

 

Yeah, I got it and read it. I think I already have a plan for how to eat, I just have to implement it.

 

What I don't understand is how you lived with it uncontrolled for so many years. I lost 80LBS in a few months because of what this disease did to me. I would have died of malnutrition eventually had I not gotten it under control. Literally. It can actually be fatal. Maybe it doesn't happen so violently to everyone, I don't know. Or maybe I'm just weak.

But one thing I know. I'm not in the ground yet.

"Do your worst, for I will do mine."

 

I'm not, but you're smart so you already figured that out.

 

Thanks Vicki.

 

Vitolony- I feel the same way. I don't know where to start and I am frustrated that I may have to consider MAV when I thought I was just dealing with MM. I feel like I can't do this "new" treatment. I am frustrated. A good two months on avs then a short attack this weekend. I haven't felt right since the attack. Imbalance, full ear, etc. I don't have the sensitivities that you all discussed. I wish I KNEW if I had MAV.

 

What's the doses and advice on magnesium?

Vit- you mind sharing your strategy for how you are going to start eating?

 

Is it possible this is just a "setback" on avs and you will improve in a few more days? I have read several posts where ppl say they zig zag when on avs.

 

I get your frustration. This has been an exceedingly frustrating journey for me, one that I frequently wonder at the value of. Although the alternatives are pretty permanent, so that isn't much of an option either.

I'm starting with a "NOW" magnesium citrate supplement. 400MG a day is what the bottle advises. I was just going to start with that.

Regarding eating... what I plan on doing will sound a little strange. I'm a huge lover of sardines, for a couple reasons. First, I had gone down to @500MG a day of salt during the really bad season last year and when I started to get some relief from the vertigo and I started eating more salt, sardines were one of the things I ate. I hadn't really eaten them since I was a kid with my dad. We would take them on hunting trips for an easy lunch with some crackers or something. Going from 500MG a day to 200-300 MG in one sitting was bliss. I also love the olive oil. The other reason I love them is a convenience factor. They are a relatively healthy food and they are obviously easy.

But, since sardines are an mav trigger, I plan on doing something similar, only home made. I'll cook some fish, chicken, steak or pork, cut it up, toss in some salt and some seasonings, like some rosemary or thyme, add some chopped vegetables, some olive oil and stick it in the fridge. Then I'll just eat it for breakfast, lunch and dinner with some non mav triggering fruit and perhaps some bread or potatoes tossed in for more carbohydrate content based on how my weight fluctuates. This gives me the ability to do the cooking on the weekend which gives me the convenience factor I need.

This probably wouldn't work for everyone. I function just fine without a great deal of variety in my diet. Drives my wife crazy, lol. I had previously gone down to an almost all whole foods diet in my attempt to find relief from the vertigo, so this will just be going back to that. I had relaxed my diet some when the vertigo stopped. Guess I have to back track. Oh well.

Vicki might have a better read on this question, but my symptoms have been more or less constant since my last major vertigo attack. I have balance issues and nausea most days. Not as bad as it was, but bad enough that it is still a major consideration in my day to day life. I don't see how that would be possible, without the full blown vertigo, if the cause was still the herpes virus. Maybe it is, I don't know. But it seems more likely that I just have another co-morbid condition with similar symptoms. Maybe it was the meniere's damage that brought it to the surface. Who knows.

Balance diseases suck. Bad.

 

When was your last major attack? Months ago or weeks ago?