MS Adventures – Modafinil, Day Three – Coming to Terms With It

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!

MS Adventures – Modafinil, Day Two – Holy Dry-Mouth, Batman!

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!

What’s the Difference Between MS and CCSVI?

I’ve been very wary about “believing” in CCSVI as the miracle cure that a lot of people seem to be claiming. Dr. Zamboni seemed to me to be claiming too much, too soon, without a lot of research to back his claims up. Here’s an article explaining a little about it, and I’ll discuss it below.

***

What Is The Difference Between Multiple Sclerosis And CCSVI?

While Multiple Sclerosis and CCSVI are two separate conditions, it is very easy to become confused between the two. In essence, they occur within the same part of the body and have very similar symptoms. It is also possible that one causes the other, or vice versa. These two medical conditions have been associated with the other since their discovery.

Before the recognition of diseases such as Multiple Sclerosis and CCSVI, doctors believed in all sorts of superstitions regarding the brain. It was not until the late 19th century that conditions such as Multiple Sclerosis, and other abnormalities of the central nervous system, were acknowledged. Soon, all doctors recognized the fact that mental illnesses are usually caused by disorders and injuries related to the brain.Multiple Sclerosis was first diagnosed in England by a man named Dr. Moxen. Slowly, more and more research was conducted on those who experienced phenomenons such as dizziness, numbness, and loss of control over bodily functions. But even in recent years, little information has been made available about the debilitating disease.

Before the recognition of diseases such as Multiple Sclerosis and CCSVI, doctors believed in all sorts of superstitions regarding the brain. It was not until the late 19th century that conditions such as Multiple Sclerosis, and other abnormalities of the central nervous system, were acknowledged. Soon, all doctors recognized the fact that mental illnesses are usually caused by disorders and injuries related to the brain.

Multiple Sclerosis was first diagnosed in England by a man named Dr. Moxen. Slowly, more and more research was conducted on those who experienced phenomenons such as dizziness, numbness, and loss of control over bodily functions. But even in recent years, little information has been made available about the debilitating disease.

When Italian doctor Paolo Zamboni discovered that his wife was victim of Multiple Sclerosis, he set out to research the condition and find a cure. What he discovered was that almost all patients of MS have narrow or blocked veins leading from the brain to the heart. Those with insufficient drainage of spent blood from the brain to the heart often had blood reflux back to the brain. This, he concluded, was the cause of the neuron damage that attributes to Multiple Sclerosis.He called it, “chronic cerebrospinal venous insufficiency” or CCSVI. This newly discovered disorder was diagnosed in some patients who had not experienced the neuron damage associated with MS. While Zamboni believed that CCSVI is the cause of Multiple Sclerosis, other medical professionals argue that it is quite the opposite. Perhaps, they say, patients with MS are simply very likely to have problems with their veins, as well.

Zamboni developed a procedure, best known as Liberation treatment, which involves the use of medical balloons or splints to widen the passages that drain the blood from the brain. These damaged veins were often found to be surrounded by lesions that are often associated with Multiple Sclerosis. When these veins were able to carry blood freely from the brain and central nervous system, these damaged parts of the brain were able to work correctly to send impulses throughout the body and control the functions of life as they should.

As for Zamboni’s wife? She has not experienced Multiple Sclerosis symptoms post-procedure, and is happily enjoying her life symptom free. About half of all MS patients experienced a complete elimination of all symptoms after opting for Liberation treatment. Within the United States, it is rare to find a doctor who is able to do the procedure, and it has been banned in many states save for when performed for the purpose of research. Many patients have resorted to traveled outside of the country to find doctors who are willing to perform the operation. They feel they have nothing to lose, and many have faith that it is the true cure.

***

So here’s the thing: the only person I personally know who went for a “Liberation” treatment (on his own dime) got a whole lot of nothing out of it. He had it done over Christmas and he has noticed nothing. Nothing bad (except for his drained bank account,) but nothing good. I think the mistake is in assuming CCSVI and MS are the same thing. Maybe CCSVI is just another syndrome that shares a bunch of symptoms with MS, to the confusion of everyone involved. Have you heard that old cliche “too good to be true?”

I love the fact that so many people are posting videos about how the intravenous stent treatment for CCSVI has truly “liberated” them, I love that it IS helping a lot of people, but it’s not helping everyone with MS. At first I was very excited about the treatment, thinking “Awesome! A cure! Everyone will be able to get their lives back!” but the more I heard about it, the more it kinda sounded like “snake-oil” to me. Yes, I tend to be a skeptic.

And yet I wanted it to work – I wanted it to be at least a step towards the end of the hold MS has on the lives of those who live with it. It looks like it IS that step for some people – maybe someday soon there will be another step, and another, and more and more people with different symptoms of MS will be set free.

How Expensive is MS?

***

I am so spoiled, so incredibly lucky. I am involved a clinical trial for MS and that means I don’t have to pay for my medication. At the beginning of the trial, I asked one of my nurses how much something like this would cost, if I had to pay out-of-pocket, if I wasn’t involved in the study. She told me about $80,000.00 and I thought my eyes were going to pop out of my head. I’ve lived in houses that cost less than that!

My heart breaks for Jason Da Silva, and once again I don’t understand the American Health Care system. Why do they feel so threatened by a system like we have in Canada? What’s so awful about allowing people access to free (or at least subsidized) medical care? Why do so many American people and corporations seem to think Obama is the devil for wanting to create a system like ours, in the US? If you have any ideas, tell me, because I’d sure like to understand.

New Breakthrough In MS Medication!

Woot! I thought this was pretty cool. I found this article on “Medical News Today” and I wanted everyone to see it even if I can only show the first two paragraphs here:

***

First Oral Treatment For People With Multiple Sclerosis Approved In Canada

Main Category: Multiple Sclerosis
Also Included In: Regulatory Affairs / Drug Approvals
Article Date: 11 Mar 2011 – 2:00 PST

Novartis Pharmaceuticals Canada Inc. announced that its new MS treatment, Gilenya™ (fingolimod), has received Notice of Compliance in Canada. Gilenya™ (fingolimod) is the first disease modifying oral therapy developed for the relapsing-remitting form of multiple sclerosis (MS) which is the most common type of the disease in adults. Unlike current therapies which all require daily or regular injections or infusions, Gilenya offers simple once daily oral dosing (0.5 mg) in a capsule, providing an efficacious and convenient treatment method for a complex and lifelong illness. Gilenya is approved for use in patients who have tried one or more MS therapies, but are unresponsive or intolerant to them.

“The approval of Gilenya is a significant milestone for the Canadian MS community,” says Dr. Daniel Selchen, a neurologist from Toronto, Ontario. “Oral therapies have been greatly anticipated by both patients and physicians who are eager for alternatives to injection and infusion therapies. With its excellent clinical trial efficacy data, along with convenience, Gilenya is welcome news for those seeking a new option to manage their disease.”

***

Please read the whole article by clicking HERE – it’ll open in a new window for you.

I’ve never had a problem with needles (thank goodness) but I have friends who pass out if they catch a glimpse of a puncture on TV. An oral medication would bypass the whole group of self-injection issues pretty handily, I think. There are (as usual) side effects, and the drug isn’t appropriate for everyone, but wouldn’t it be amazing to just be able to take a pill instead of dealing with injections or infusions?

It’s not a cure for MS, but it apparently does slow progression. It lowers the white blood cells, so does that make it an “immuno-modifier” or an “immuno-supressant?” In either case, you’d have to be careful when around other infectious people (like we’re not already!) and you’d have to decide with your doctors if this is the right treatment for you. I wonder why would it only be approved “for use in patients who have tried one or more MS therapies, but are unresponsive or intolerant to them?” It seems like a simpler treatment than most of the others I’ve heard about.

What do you think? Does this seem like a good idea to you? Is it something you’ll ask your doctor about? Is anyone involved in the Clinical Trial for this medication, or has anyone been put on it through their doctor? I’d love to hear what your experiences are.

How to Talk to Others About Your Multiple Sclerosis Condition

I heartily agree with what Christopher Jacoby has to say in this post. Take a look, read my comments after the post, and let me know what you think by leaving a “comment” of your own:

***

The first step in being prepared to deal with people reactions of your Multiple Sclerosis is by understanding your own condition. If you want people to understand your health problem, you’re the one that should educate them. Continue reading

Early Symptoms of Multiple Sclerosis

I came across another great article on the topic of early symptoms of MS. Here it is for your reading enjoyment, and I’ll comment on it afterwards.

***

The Early Signs of Multiple Sclerosis

There are several early signs of multiple sclerosis. Have you ever experienced tingling, numbness, loss of balance, weakness in one or more limbs, blurred or double vision? These are some of the most typical signs or symptoms that might suggest to a doctor that you have multiple sclerosis.

The signs may come on so gradually that you may not even know you’re having any symptoms until you look back years later. The signs can range from very mild to very severe. When mild, the signs may be barely noticeable. When severe, you may end up in the hospital wondering what is going on. The doctors may have to put you through several tests to find out the cause of your symptoms. Continue reading