Cotton brain, cog fog or a lesion hangover?

In scanning through the archives of the Lesion Journals, I came across a brief post I wrote over three years ago. It was about my first experience with the symptom I dubbed “a lesion hangover” and I wrote it during the weeks leading into my official MS diagnosis [read more]. 

Since then I’ve learned that this “lesion hangover” is more commonly referred to as MS brain, cotton brain, cog fog or brain fog. For me, it really does feel like a hangover, less the over abundance of alcohol, and sometimes lasts a couple of days. I have this feeling periodically and it can feel slightly different each time.

Sometimes it feels like a massive number of cotton balls have been jammed into my head and the pressure is intense (hence cotton brain). Sometimes it feels like someone else is at the controls of my brain, slowing things down and making it difficult to process signals, information and/or perform basic calcs (hence cog fog).

Cotton Brain

In their web post, “MS: The Words You Should Know”, our friends over at Healthline describe MS brain as “…when thoughts are cloudy and you can’t think clearly. Everything seems surreal and fuzzy.” Good description.

I find that taking naps helps, a lot. How about you? If you live with MS, is this symptom common for you? And, how do you deal with it? Any tips for the rest of us?

Best always,

Christie

P.S. be sure to check out the MS lingo decoder over at Healthline. Great way to learn all about symptoms that MSers live with.

The Buenos Aires Toothpaste Incident

I’ve got some very solid advice this week. Free, from me to you. This is all going to seem soooo obvious but, alas, I ran into a situation that I’d like to share with you, an incident that occurred during a vacation in Buenos Aires.

My advice? Do not brush your teeth with face soap. Here’s what happened:

The day was spent walking the uneven and sunny streets of BA (bee-ay), enjoying porteños dance the tango (yes, this really happened, practically at every street corner) and hanging out with Evita. Like good tourists, we ate steak for dinner and enjoyed some wine.

The uneven and sunny streets of BA

I began getting ready for bed at around 10PM, seriously early for Argentines, who are known for going to bed at 4AM (something about dancing and clubbing into the wee hours of the night), but seriously late for me.

After injecting my daily dose of Copaxone, I went to the bathroom to begin brushing my teeth. It was a perfectly normal routine. I simply squeezed a dollop of “toothpaste” onto my toothbrush and brought it to my mouth. Tube, check. Squeeze, check. White paste on brush, check. A perfectly normal routine. I’ve done this like 30,000 times in my lifetime already. This is a real number, believe me, I’ve done the math. After all, I am a number cruncher by day.

Within seconds of brushing I began to gag and realized that something had gone horribly wrong. Tears swelled in my eyes, the gagging continued and then the real fun began, I began vomiting. Ugh. Disgusting. And then it hit me. I brushed my teeth with my face soap. What?!? How on earth? And not just any soap; I brushed my teeth with exfoliating face soap designed to remove my age spots. Awful! I seriously gagged and vomited for several minutes and at some point during this horrid incident I thought about children going through this kind of torture when a bad word has been uttered. “Unimaginable”, I pondered, “Does this type of punishment really work?” After I dried up my eyes and rinsed my mouth, I contemplated how it was at all possible that I grabbed the wrong tube and brushed my teeth with face soap.

Now. I swear my sloshy brain state was not the result of the Malbec we drank that night. I asked myself, “Did my MS brain misfire and send the wrong signal? It is totally natural for me to think this, right? Why shouldn’t I attribute the Toothpaste Incident to my MS?” Call it brain fog, cognitive dysfunction. Whatever. I convinced myself that my MS really played a number on me that night, forcing me to choose face soap instead of toothpaste to clean my choppers.

Case of mistaken identify? 

Fast forward to the present. I’ve had some time to reflect and realize that it is so far fetched for me to blame my MS for not being able to (safely) identify toothpaste. Yet I find myself wanting to attribute my MS to every little physical and mental mishap. Yet, and you’ll likely agree, the Buenos Aires Toothpaste Incident was really just a simple case of mistaken identity.

Or was it?

I am sure I am not the only one who is always second-guessing things and attributing every single mishap to Multiple Sclerosis. Have situations like the Buenos Aires Toothpaste Incident ever happened to you? I would love to hear from you.

Hope you’re well.

Best,

C.

Lobster Arms, Food Trailers and My New Theme Song

Greetings Earthlings.

I hope this post finds that you are all doing well out there on our lovely planet, wherever you may be, whatever you may be doing.  Me? I am doing super swell.  I'm on my way to Texas to congratulate my nephew on his graduation.  Very excited to spend time with the family. Yee-Haw!

Meanwhile, back in sunny San Diego, my life with MS continues.  I am getting on my bicycle as often as I can, whenever my abled body allows me. Love the wind in my hair, not loving the head winds that make the ride a complete struggle! Ugh. I need some rockets on my pedals.

Here’s what’s kept me entertained these last few weeks and things that are on my cluttered mind. Yes, I am entirely too lazy to write something longer so I choose to write in bullets. They are very effective in organizing my running-around-like-a-crazy-person scattered thoughts. Cheers to compartmentalization in the form of a bulleted list!

• Lobster Arms. This is what happens when you go for a bike ride and forget to put on sunblock. I look ridiculous and am now sporting a nice T-shirt tan. Yes!
•  The spinning hasn’t stopped and reminds me now of the song, “You Spin Me Round (Like a Record)”. I’ve declared this my new theme song to celebrate the vertigo. Round, round, round, round. I sang this the other day as I walked down an aisle at the office, dragging my hand along the gray felted cube walls to keep me on the straight and narrow all while hoping that none of my co-workers pass me so I don’t have to try my mightiest to convince someone that I have not had a morning cocktail. Round, round, round, round.
• Can’t wait to check out the Austin Food Trailers and meet up with fellow MSer McCall T. We are going to hang out and chat over some crepes. Oui! Oui!
• Another infusion without incident. I had my second dose of Tysabri last week and I’ve got nothing to report because nothing really happened. Well, except for the flow of the big T and that minor heart palpation. That’s pretty major I suppose.
• Old age or an MS symptom I really need to start stressing about? You tell me. Here’s what went down: I went out to dinner last weekend and ordered what I thought was a Cesar salad with shrimp. I said it out loud while reading the menu. Cesar salad with shrimp please. Our server was not on the same page.  She brought out this said salad with salmon. I never order salmon. Ever. My sweetie told me I ordered salmon. My parents told me I ordered salmon. Impossible. I swear it was shrimp. It was rather delicious but that’s beside the point. I ordered shrimp. And, of course whirls of thoughts enter my MS brain. What if I mix up my words all the time and I’m not aware of it? Doing this at work could be problematic. Seriously. I can see it now. “Sales are up 7%!” When in fact sales are down 7%...
• The heat and humidity of Texas is on my mind and I’m anxious about it. They have AC in Texas, right? My sister-in-law is getting misters for my nephews graduation party. Suh-weet. I shall relax in the midst of spraying water while guarding my hearing aids with the umbrella of my hands and sipping iced water no, let’s make that an iced vodka drink, through a straw because my hands will be busy protecting my hearing aids. As long as I stay cool, that is all that matters. Whatever it takes.
• Bam! That is the sound of me hitting a majorly big brick wall. Or, commonly known as MS fatigue. Totally knocked me out and I was confined to a full day of rest. Poo.

I hope you are more settled than me at the moment. How are y’all out there?  

Ciao for now from deep in the heart of Texas.

C

Memory Games

With 50% of MSers living with cognitive issues, it is normal for us to forget things. This can be quite challenging and frustrating. For me, I tend to forget to take my meds. Funny thing is I’d like to forget to take my daily injections but for some reason, I never forget these. Nope. I always remember the shots. What I tend to forget, however, is taking my nerve pain medication, especially on the weekends or when I’m traveling or when I fall out my normal routine.

When this happens, it is not infrequent that I work myself up into a frenzy playing memory game. Let’s call it the running-around-in-circles-retracing-my-steps-asking-myself-over-and-over-and-over-again-if-I-took-my-meds game. You know this routine, right? It happens to me all the time. I’ll be in the middle of doing something really fun and suddenly I’ll panic. “Did I take my medicine this morning?” I’ll back track my steps, visualize myself standing by the kitchen window, opening the medicine bottle, pouring out my dosage, taking a sip of water and swallowing my pills. Trying to remember, I’ll press my palms into my face in anguish, “Did I take my medicine? I swear I did. But, I can’t remember! What will happen if I actually took the meds earlier, forgot that I did and then took a dose right now? Will my body convulse with the extra dosage? Is there such a thing of overdosing on Gabapentin? Will I become an addict? Is it even possible to get addicted to this stuff? Good grief!”

I am not sure what’s worse: forgetting to take my meds or the crazy routine I go through trying to remember if I took my meds. Seriously. I need to find a better way to remember and reduce my anxiety. I must stop the madness.

Here are some ideas to stop playing these silly games and help me remember stuff:

• Remind Siri to remind me. After all, the new iPhone 4s is seriously amazing.
• Post Its are oldies and goodies. Simply said. They work.
• Tie a string around my finger. But, I don't see how this will solve anything. I can see it now, "What is the string for? What was I supposed to remember?" Let the games begin.
• Wear a task bracelet! I found these "List-It" bracelets at a Japanese market and think they're pretty cool. Simply write your task and wear it! Must try.

On Feb 12 at 12pm remind
me to take my meds!

Write down your task and wear it!

Tie a string around your finger!

And, for good measure, if I try all four of these tips at the same time, I will be sure not to forget to take my meds. Right? At least I think so.

So, what are your tips? I would love to hear from you. What are some of the tricks you use to help you remember things? What are some of your favorite stories?

Hope all is well.

Best always,

Christie

P.S. here is an excerpt from the National MS Society describing cognition:

"Cognition refers to a range of high-level brain functions, including the ability to learn and remember information: organize, plan, and problem-solve; focus, maintain, and shift attention as necessary; understand and use language; accurately perceive the environment, and perform calculations. Cognitive changes are common in people with MS—approximately 50% of people with MS will develop problems with cognition".

The MS Buzz #9

The MS Buzz #9 now available! Last week’s chatter? Cognitive disfunction, CCSVI, speech difficulties and new hope. Click here to check out the tweets!