Back next week. Hopefully. 😦
Back next week. Hopefully. 😦
Here’s an interesting article I ran across from Caltech a couple of years ago. Has anyone heard anything else about this research? Any updates?
PASADENA, Calif.—Biologists at the California Institute of Technology (Caltech) have demonstrated a connection between multiple sclerosis (MS)—an autoimmune disorder that affects the brain and spinal cord-and gut bacteria.
The work—led by Sarkis K. Mazmanian, an assistant professor of biology at Caltech, and postdoctoral scholar Yun Kyung Lee—was published July 26 in the early online edition of the Proceedings of the National Academy of Sciences.
To read the rest of this article, CLICK HERE!
As always, I’d love to hear from you, especially if anyone has any comments about the research discussed in this article!
A few posts ago I mentioned that I had joined Weight Watchers and it, along with the Wahls Protocol, was ensuring I got the nutrition I need in my diet. I’d been experimenting with diets and diet modification for years, talking to doctors and nurses and registered holistic nutritionists… and usually came out with more questions than answers. Questions like:
– If I’m eating right, why do I need all these supplements?
– If YOU AGREE I’m eating right, why are you recommending more supplements?
– What do I ACTUALLY need to take, and in what dosage?
– What do I need to eat, and in what amounts, to get the nutrition I need to cut back or eliminate the supplements?
I discovered that if someone is making a living (or part of their living) selling supplements, they will always have a supplement to recommend, no matter what you’re already taking. I also discovered that medical opinions on supplements for MS vary widely. Everyone agrees that I should be taking Vitamin D, but I’ve been told anywhere from 2000 to 5000 IU’s a day, and somewhere I even read up to 8000 or 10000 IU’s. At one point, I was taking something like 14 pills at once, with all the different supplements.
I hate taking pills. I’ve mentioned that before. That was what inspired me to start looking for food-as-medicine type information. There’s nothing extra for these people to sell, no supplements or whatever, although they may push the occasional book. That’s okay, I’m fine with buying a book or two. It’s certainly cheaper than 14 supplements a month.
I was chatting with a Registered Holistic Nutritionist, who mentioned her Mom had been diagnosed with MS, and she’d found this amazing Ted Talk from a woman who had used diet modification to control her symptoms. This woman was Dr. Terry Wahls, and she went from a tilt-recline wheelchair and secondary-progressive MS to horseback and remission in something like a year, purely through diet.
Here was something I could get behind. I was totally willing to change my diet and my eating habits, because I believed from the beginning that the answer to most of my problems was in what I was eating. I just didn’t know what to change. So I toyed with the Wahls diet. I bought her book, “Minding My Mitochondria,” and read it. Not cover to cover, since some of it was a little too scientific for me, but enough to see what she was talking about. And I slowly started eating less processed foods. And more vegetables. And less grains. Then I took the plunge and went gluten-free, which is one of the most painful things I’ve ever done – my Mom’s Italian, Dad’s Dutch, and we survived on pasta and bread. But suddenly, one day it just stopped being so awful. My biggest discovery is that I can’t use substitutes. Gluten free bread is inedible, so I just don’t eat bread anymore. Cookies and muffins, sure, because they’re supposed to be dense and heavy. I can’t do substitutions because I have a very firm opinion on what food SHOULD taste like, and what the texture should be. So I just cut most grains out altogether, and I don’t even miss them. I’m reintroducing some into my diet, on advice from a Registered Dietitian, but it’s quinoa, rice and oats, mostly, and for now only once a week. I really try to eat more nutrient-dense foods, and starches just don’t have as many nutrients.
HERE IS A LINK TO A REALLY GOOD REVIEW OF DR. WAHLS’ BOOK “MINDING MY MITOCHONDRIA”
I also toyed with Dr. John McDougall’s diet, and I tried a Paleo diet, but if something doesn’t make sense to me, or (more importantly) doesn’t FEEL right to me, I won’t embrace it wholeheartedly. No one source of information, or one type of diet, ever felt completely right to me. Until I joined Weight Watchers.
I know, I know, I sound like a recruitment poster or something. But seriously, the new system doesn’t contradict any of the dietary recommendations that I decided to follow over the last few years, and it actually makes it a lot of things easier for me. I use their system to keep track of all the fruits and veggies and animal proteins and other good things I’m SUPPOSED to be eating, and it’s actually LESS restrictive than what I’ve been doing by myself for the last while. I’m eating a lot more now, and a wider variety of food, than I was allowing myself before I had these guidelines.
This is what I’ve done to combine the Weight Watcher tracking with what I got out of Dr. Wahls’ book, and I ran it by a Registered Dietician to make sure that my new planned diet was healthy and safe – she gave me two thumbs up!
– I aim for 9 cups of water. This may sound like a lot, but I make a lot of smoothies and soups, and I count the water I use in those as well. Plus, since starting Modafinil, the persistent dry-mouth makes me WANT even more water!
– I aim for 5 to 9 servings of fruits and vegetables a day, which is easy if you like making soups and smoothies. I assume 100 grams is a serving, and I label each serving check-box with a colour: red, orange, yellow, 4 greens, blue, and white. White is NOT starch, it’s the sulfurous veggies like cauliflower and mushrooms and onions. According to Dr. Wahls, keeping track of colours helps to ensure you get a good balance of all the different micro-nutrients you need, maybe not every day, but over the course of the week.
– I aim for two servings of healthy oil; one could be a teaspoon of olive oil or 1/8 avocado.
– I aim for 6 ounces of protein in a day, at least half of which will be animal protein. (If it had a face, it’s animal protein.)
– I aim for three servings of dairy – I react funny to cow milk and cream, so I stick to yogurt and cheese, and I use a LOT of almond milk, which also counts as dairy. Not sure why, but I’ll take it!
– I aim for at least one serving of fish a week, and one serving of a non-gluten grain. I’ll increase those as I learn to cook more with them.
– Last but not least, I aim for 2000 IU’s of Vitamin D, a Calcium-Magnesium supplement, and a multivitamin. That’s it.
THIS HAS MADE MY LIFE SO MUCH EASIER! I just have a little list with check boxes, and I try to check my list off every day. No more fretting about what I can and can’t eat. No more going hungry because I can’t figure out what I should eat, or going crazy and eating EVERYTHING IN THE PANTRY. And believe me, with a fruit and veggie heavy diet, I have more problems eating ENOUGH points worth of food than I do going over my daily allowance. Also, Weight Watchers encourages writing down every little bit of food you put in your mouth, and I’ve expanded that to include EVERYTHING, meds and supplements too, and since I’m writing all that down it’s easy to keep track of energy levels and hunger levels as well.
So there’s my take on food, nutrition and diet. Just remember, what works for me may not work for you, and it took a few years of trial and error to come up with a way of eating that’s healthy and comfortable for me. I hope this inspires you to find a healthy and comfortable way for you – it’s completely worth whatever time you spend on it, in the end!
Three little pills, spaced over three days. I’m super jittery but I feel AWAKE! Alive for the first time in forever. Looking forward to testing my limits all over again!
And a little afraid of the crash. But only a little.
Yesterday I didn’t have my normal morning coffee, because I hoped Modafinil would do enough to keep me awake. What I FORGOT was that there’s no actual caffeine in Modafinil – it works on a totally different part of the brain. So by about 2pm I had the (by-now-familiar) withdrawal headache. I have a love-hate relationship with caffeine – we break up occasionally, but I always go back. Anyway, I don’t like drinking coffee after noon or so, because it can interfere with my sleep, so I just waited it out. I kept telling myself “You’ll go to sleep tonight, and in the morning you’ll get up and have your coffee, and it’ll be AMAZING.”
So I just went about my day, doing housework and stuff (MUCH more housework, and more quickly than usual, by the way!) and it was fine, my energy levels were still pretty good, even with the low-grade headache. Right up until about 7pm when the Modafinil, rather abruptly, stopped working. Left my system. Done.
I was at a Weight Watchers meeting. (I’ve discovered that the new system is PERFECT for me, in combination with the Wahls Protocol, to help me make sure I’m getting the nutrients I need.) Anyway, I got hit suddenly with a dizzy spell hard enough to stagger me. I was standing in front of a table, and I’m really glad the table was there, because I’m pretty sure I would have hit the floor otherwise. One of the ladies asked if I was alright, and I said “It’s fine, my new alertness drug just wore off.” But inside my head I was frantic: “How the hell am I gonna get home? I can’t drive like this!” Thankfully, I quickly realized two things: 1. I moved back home so I had LOTS of people I could call if I really needed help, and 2. the dizziness was already wearing off, even if the brain fog wasn’t.
And I honestly think the brain fog wasn’t that bad, it was just that the CONTRAST between the alertness I had felt and then the exhaustion when it wore off was so sudden and pronounced. I had just moved from what felt like my “old, pre-MS normal” to my “MS normal.”
And it scared me. And then I started to over-think the situation (as usual) and freaked myself out even more.
Modafinil isn’t a physically addictive drug. That means my body apparently won’t develop a tolerance, so once my Doctor and I find a working dosage, I won’t have to increase it over time to keep the same effect.
But psychologically? Whoa Momma! I’m incredibly grateful right now that I don’t have an addictive personality. The only addiction I’ve ever dealt with is caffeine, and I’ve weaned myself off it several times, just to make sure I still could. Heh. Another control issue?
But Modafinil? The thought of feeling normal, and all I have to do is take this little pill? One teeny tiny pill, to make such a difference…
That terrifies me. Because I want it so very, very badly.
But that means giving control to this little white pill, doesn’t it? And I know I’m going to do it anyway. The thought is accompanied by both exhilaration and fear.
So yesterday, as I said, I told myself “You’ll go to sleep tonight, and in the morning you’ll get up and have your coffee, and it’ll be AMAZING.” And it was! I actually sat and REVELLED in the coffee, quietly of course. Too early for loud revelling, and besides I hadn’t had my Modafinil yet, so I wasn’t feeling particularly bouncy.
But I was waiting for it, looking forward to it. Craving the thought of feeling normal, if only for half a day. And I understand now, in a way I never have before, how insidious addiction could be. How somebody (with fewer control issues maybe?) could be completely overtaken, suffocated by it. But welcome it anyway.
Holy crap that scared me.
And then I realized that, once again, I was over-thinking. Maybe, just maybe, I should look at Modafinil differently. I mean, if I learned that a friend was on antidepressants, I’d applaud them for reaching out and talking to someone, and taking control of their situation. Too many people, I think, still assume that therapy exists for the weak. I think it exists for those strong enough to talk to someone about their lives, people who are proactive and want to change things about their thoughts and situations. (Ahem. I finally made contact with a therapist, to discuss my control issues and learn to deal with “my new normal.” I’m now on a waiting list. But I’m still happy I finally reached out to someone about it!)
Anyway, maybe I should think about Modafinil the way I think about antidepressants: it’s a way to help regain control, not a way to give control away to a drug. So I asked myself a few questions:
Q: Is it a necessary drug for me to take? Will my condition get worse without it?
A: Well, no. Most likely not. There have been some studies indicating that Modafinil may slow MS progression, but not enough to make it “a necessary drug.”
Q: Will my experience of life be enhanced by this drug? Will it help me participate more fully in my own life?
A: Yes, I believe it will.
Those simple questions, that stated belief, has leached away most of my fear regarding any loss of control. In any case, it’s only day three, and I may have a lot more to learn about this lol!
So my lesson for today is this:
BE AWARE OF THE CHOICES YOU MAKE, AND WHY YOU MAKE THEM.
That’s it, that’s all. There are always consequences, so when you’re making what you feel is a major decision, think about it. Be aware enough that you can feel good about what you decide. Write down your reasons, because it’ll help to remind you later WHY it was a good decision for you at the time. Is the end result worth what you feel you’ll have to give up? If your answer is yes, then just do it!
Modafinil. Mo. Da. Fi. Nil. My new drug of choice.
Modafinil is a powerful stimulant, and since I’ve had dry-mouth since my first pill yesterday, I’m attempting a caffeine-free day, and just hoping the Modafinil will take it’s place. I’ll let you know how that goes.
I was concerned that the drug may interfere with my sleep patterns, especially since I took it after lunch when I had the prescription filled, but I slept just fine last night. I woke up at a normal time this morning, with no headaches, dizziness or agitation. I’ve been keeping a close eye out for the listed negative side effects, but so far (other than the dry-mouth) there’s been nothing.
One other side effect I’ve noticed is that it’s acting as an appetite suppressant. Unfortunately, I’m hypoglycemic. That means I have low blood sugar naturally, and I really do need to eat every couple of hours. So I need to pay MORE attention to food, since regulating my blood sugar levels will be VERY important if I’m not getting as many hunger signals.
I foresee a possible issue here. Not because the drug doesn’t work, but BECAUSE it works really well so far, with liveable side-effects. I know that doesn’t really make sense. I think maybe it’s my control issues coming up again – I really dislike the thought of HAVING to take something every day.
Actually, I really dislike the thought of WANTING to take something every day.
This is ridiculous. When I get a sinus infection, I take antibiotics, I don’t complain that I have to take pills for that. When I’m really congested, I take a decongestant and an antihistamine, and I’m happy when they work. I don’t complain about taking them. Maybe it’s because I know the antibiotics are short term, and I only take the antihistamines when I feel like need them. So what’s the difference?
I’m willing to bet it’s another control issue. Heh. One of these days, I’ll have to see someone about that!
I’m not sure that anyone who hasn’t experienced a loss of control over their bodies and minds can understand how SEDUCTIVE the thought of “feeling normal” is. I’ve spent the last couple of years redefining my “normal” and so far, it’s not a destination, it’s a process. An alternately lovely-and-fulfilling versus horrible-and-frustrating process.
I guess the trick is to really savor the lovely-and-fulfilling parts, while passing by the frustrating parts, taking in the lessons as you go. I mean, that’s the whole point of the Edison Tally, right? To concentrate on the lessons instead of the outcome.
So. This drug. Maybe it’s a lesson in itself. Certainly, it’ll be a constant reminder that I still have some work to do around control! It’s funny how this one little pill brought up SO MUCH STUFF for me! I actually like it when that happens, because I really believe you have to understand what’s going on in your head, behind the scenes, before you can make changes. And I’m all about making the changes.
Is anyone else out there on Modafinil, or anything else for specific symptom relief? What’s your experience with your medication? Has any of your medication brought up unexpected challenges for you? I’d love to hear from you, just “Comment” below!
Today I went to my Doctor and talked to her about going on Modafinil. For those of you who’ve never heard of it, Modafinil is an alertness drug that was originally marketed as a treatment for narcolepsy and other sleep disorders. It’s also marketed as Provigil in the US and Alertec in Canada. Ages ago, my Neurologist suggested I try it, since my major MS complaints are fatigue (Hah! Total exhaustion more like! I wish there were more descriptive words for it!) and cognitive dysfunction, more colloquially known as “brain fog.”
CLICK HERE TO LEARN MORE ABOUT BRAIN FOG
At the time, I said no, because 1. I dislike taking pills and 2. I was in the middle of learning about behavioral- and diet-modification to try to control my symptoms. Now, I feel like I’ve taken those as far as I can, with some success (I’ll write about my diet discoveries soon) and I was ready for the next step. Pharmacology. In other words, pills. I’ve got a few articles below if you’re curious about it, or just do an internet search – there’s quite a bit of information about Modafinil, since it’s been out since 1994 or so, and used to treat several different ailments.
CLICK HERE FOR THE WIKIPEDIA ENTRY
CLICK HERE FOR INFORMATION ON MODAFINIL AND MS
CLICK HERE FOR SOME HISTORY ON MODAFINIL
So! I’ve taken my first pill. Once dose, once a day, in the morning. It’ll be up to me to discover if I need to take it with food or not. I just took it, so I’m not sure exactly how my system is going to react to it, but I’ll let you know tomorrow. I’m both scared that it won’t do anything and excited that it might!
PS I just noticed I used the word “colloquially” in the first paragraph. I feel smarter already!
Ah crappity, I think the video was taken down, because I can’t even find it anymore on Vimeo. Anyway, here’s a link to a WebMD article about caffeine and MS. Funny thing, when I googled, the first link that came up was this article, and the next was one claiming caffeine makes MS worse. How about that?
And here’s an article saying caffeine is evil and makes MS worse!
OMRF: Multiple Sclerosis from SAXUM on Vimeo.
SAXUM PRODUCED VNR FOR OMRF
Okay, I’ll admit it, I love coffee. I’m actually trying to cut down on the amount I drink, because I don’t want to rely only on caffeine to get me through the day. This video article was posted three years ago, and unfortunately I don’t know what happened with further studies on caffeine in MS, but I love the thought of not completely giving up coffee!
Haha so upon further research: the study was only done on mice not people, on a condition “similar to MS”, and the equivalent amounts of caffeine given to these poor mice was more than anyone should be drinking in a day. So experts “wouldn’t advise people to change their caffeine intake.” Nuts! Further proof to not believe everything you find on the internet, even if it looks all shiny and official!
Just so you’re all aware, this video is a complete lecture so it’s just over an hour long. It’s very interesting and the speaker is quite engaging, though! He has some very different ideas, and I don’t agree with all of them, but it is entertaining to listen to him.
Diet and Multiple Sclerosis from John McDougall on Vimeo.
Dr. John McDougall talks about the importance of diet and the effects it has on Multiple Sclerosis.
I’m honestly not sure what I think of his ideas, but he’s obviously done a lot more research than I have. In my video about my MS treatment I mention that eliminating complex carbs from my diet has seemed to increase my energy levels, yet here’s a doctor encouraging people to eat a starch based diet.
So what do you think? Do you have any opinions or experiments you’ve done with you own diet that has seemed to have some kind of effect on your disease, whether good or bad? Please share your experiences by commenting below!
|If you are at all interested, here is a link to “The Multiple Sclerosis Diet Book” by Dr. Swank, the doctor that Dr. McDougall (the lecturer) called “his personal hero” and features as a video in his presentation.
I was doing some research on how diet can affect MS, and I came across this article that pretty much describes why I started wondering whether or not the food that I eat could affect my energy levels. It stands to reason that it would, I think. Take a look at this article and tell me what you think, about the concept of disease management through diet, by clicking the “comment” link below.
Multiple Sclerosis Diet Therapy – Does Diet Really Make a Difference?
This article made me snicker, not because of the content but because of the ATTITUDE!
Your Battle Plan for MS Fatigue
Fatigue is probably one of the most complained about Multiple Sclerosis symptoms. We’re not talking about some ordinary fatigue here; but fatigue that incapacitates you physically, mentally, psychologically and emotionally as well. As if having Multiple Sclerosis wasn’t depressing enough, the degree to which your already low reserve of energy and strength is sapped is sufficient to halt any and all activities and often does.
Did you have a plan to do this or that? Well guess what? There’s a very good chance it may not happen. At least not when you had originally planned. Of course, if you’re the one with Multiple Sclerosis, we’re preaching to the choir here. You already know how it can profoundly affect your daily activities, but you should also be encouraged to know that you can do something about it. If you want to counteract the way fatigue impacts your daily life, read on. Continue reading