Every few months, I go through a period of 2-3 days where I get all sorts of strange neurological symptoms. I feel totally uncoordinated. Typing becomes very difficult. Walking becomes dicey. I feel unbalanced. Muscle twitches and numbness comes with it too. I feel like I could fall at any time while walking. It is a very difficult feeling to describe, but other PWMEs say they know exactly what I am talking about.
I'm getting over one of these neuro flare-ups right now.
Most of my crashes do NOT involve these symptoms, so it makes me wonder why a few do. When I first got these symptoms, I thought they were possibly due to low potassium levels, as I'd recently started a B12 protocol. Now, I'm not so sure. I'm very good about maintaining my potassium levels while on the B12 protocol. Are these symptoms just another bizarre aspect of this condition?
I'm looking back on my health records for the last year trying to find any common denominator between these neuro symptoms and other factors near in time. So far the only possibility I've come up with is that many of these episodes arose after eating eggplant. Eggplant, of course, is a member of the nightshade family of foods, which is sometimes cited by PWME's as problematic -- specifically, leading to neuro symptoms. But the thing is, there have been many more times throughout the past year when I've eaten eggplant and not gotten these symptoms. Why sometimes and not others?
I may have to cut out eggplant altogether for a while and see if the neuro symptoms stay away. Other than that, I'm out of guesses. I would love it if anyone else had some insight into this. Is is just one of those inexplicable symptoms of ME/CFS that we simply have to deal with?
Hi Patrick,
ReplyDeleteI'm familiar with some of your symptoms, particularly, "Walking becomes dicey. I feel unbalanced," and" I feel like I could fall at any time while walking."
These symptoms were really bad and pretty much constant when I first contacted CFS. It was like being drunk, but there was nothing fun about it.
These symptoms have thankfully become less and less common over the years. Why? I don't really know.
Some ideas are -
1) Paleo or WAP style diet with little to no refined sugar/refined carbs.
2) Nose breathing only, no mouth breathing.
3) Wearing contact lenses a lot seems to make this worse.
So I don't know why this is better for me. But I do know how to make it much worse, just eat a lot of raw garlic. I ate a lot of raw garlic (2-4 cloves per day) bc of the supposed health benefits, and it was as bad as being drunk. Very strange.
Greyson, I originally typed out a reply and it seems to have disappeared into cyberspace. Anyway, I was just saying that I am on the paleo diet right now, but had sort of "cheated" recently by having a few low carb tortillas. I wonder if this small amount of gluten could cause my symptoms?
DeleteThanks for sharing your experiences. It's reassuring to know that you had these symptoms early on and they seem to have improved.
Ironic you mention this as I am in one of those phases as well. Like you, I am trying to figure out any changes in my diet, etc. to cause those symptoms. For me the instability, muscle twitches, and lightheadedness are very bothersome. Pregnenalone seems to help a bit as you mentioned some time ago. You mentioned B12 as a possible contributor....how does that happen? Do you need potassium to counter that? Still hard to believe that a common virus can affect so many parts of our system.
ReplyDeleteBret, I've been told many times that when you start a B12 protocol you have to supplement a lot of potassium because the B12 supposedly "starts up your cell making factories" which in turn draw on your potassium supplies. For whatever it's worth, I think generally true.
DeleteAnd you captured my thoughts exactly about how a single virus can cause such wide ranging havoc. It's just amazing...and I can't believe more people don't know about this.
I think maybe for us the B12 is causing inflammation by activating the immune system. I do need to methylate once in a while when I feel I need to, but doing it too much causes damaging inflammation for me.
Delete(This crap is so boring, isn't it?) :D
DeletePatrick-One more thing....let us know how the Amantadine works for you. I have been researching this a bit and it seems like a 50-60% success rate out there. I plan to bring this to my doctors attention as well since the side effects seem few. Fingers crossed it helps you!
ReplyDeleteI definitely will. So far it hasn't helped at all, but I'll give it the full month just in case.
DeleteI probably am in the minority, but I think food sensitivities are a result and not really a cause of any major symptoms. I personally don't have the energy to put effort into trying to read through the mountains of conflicting information scattered all over the place and then prepare meals based on that. I think doing that would take up most of my life.
ReplyDeleteI think if we focus our efforts on the disease process itself and not the resulting sensitivities, that will be a better use of time. But I could be totally wrong of course!
I have a question though. Did you ever get any "autoimmune" side effects from Equilibrant? Lately when I take even 1/2 pill, it will result in a prolonged period of my hands and feet feeling cold, which can be tied to autoimmunity. It's a shame because it has helped with some aspects, but I don't want to cause more damage to my body by forcing an unhealthy immune response.
Do you know what he would do in a case like that? Would you just try the other antivirals and skip the Eqiulibrant(Amantidine, Epivir, maybe inosine?) I wish I lived closer to his office so I can see him, but I'm all the way on the east coast.
Chris, I havent' personally had that experience with Equilibrant, but I have heard of others who have. I think it just effects everyone differently. Unfortunately, I don't know what Dr. C would do in a case like that. I wonder if you could just keep cutting the dose down to 1/4 or even 1/8 of a pill until you find the right balance?
DeleteThat's interesting what you were saying above about B12 causing inflammation. I had not heard that before, but the next time I get inflammation maybe I'll cut out the B12 for a few days and see if that helps.
My brain has been too screwed up to read this myself but you might find it interesting:
ReplyDeletehttp://lifeischange.wordpress.com/2011/04/12/gluten-ataxia/
I have fairly constant neuro symptoms that vary with fatigue levels. I have found that Paleo helps a lot with limiting these symptoms. Also, I found that eating only pastured/organic/certified humane meats also makes a difference. I'm guessing it is our inability to eliminate toxins efficiently that makes the food sensitivities worse. Things that our bodies used to be able to get rid get stuck in our system and cause problems. There is a growing body of evidence that diet and/or damaged gut is linked to all sorts of brain problems including but not limited to ADD, Autism and schizophrenia. Many decades ago certain mental illnesses were referred to as bread madness.
http://www.glutenfreesociety.org/gluten-free-society-blog/bread-madness-schizophrenia-or-gluten-sensitivity/
....and the plot thickens. You know, now that you mention it, I did start introducing some bread back into my diet right about the time I started getting these symptoms, BUT it was no carb, gluten free bread from Julien Bakery. But it makes me wonder if there's something else in that "bread" that I'm reacting.
DeleteThere's just so many possibilities it's hard to know where to begin to get to the bottom of it. As always, thanks for that great information, Baffled.
-Patrick
The GF stuff isn't necessarily GMO free. Look out for soy. It is such a common ingredient and if it isn't organic its a good bet it is genetically modified.
DeleteWas the eggplant breaded?
ReplyDeleteMonths later...
ReplyDeletePatrick, I suspect I might have problems with eggplant. I didn't use to. The last time I ate it, I felt really, really weird afterward - spacey and "out there." It lasted for a couple hours, and I've never wanted to re-test to figure out if that was actually the problem. None of the other nightshades are an issue. I think cinnamon and at least one other spice do the same thing, but I haven't conclusively narrowed that down.
-Jocelyn
Isn't it strange how we all of a sudden develop these food sensitives where we never had them before we got ME? I swear, this disease is so unbelievably complicated.
Delete