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Everything Makes Me Dizzy

I deal with a lot of multiple sclerosis (MS) symptoms every day. Since the day I was diagnosed with MS, I feel like I have experienced every single symptom I’ve ever heard about at some point in time. While there is obviously stuff that people deal with that I cannot entirely relate to, I feel like I have a pretty good first-hand understanding of everything this disease can do to make you feel like crap, and a lot of the symptoms I deal with on an almost daily basis do just that; they make me feel like crap (understatement of the year). But, if I had to write down a list of my top 10 worst symptoms (1 being the worst), the number one spot would be a tie between my fatigue and my constant “dizziness”.

Dizziness is difficult to explain

Everyone with MS understands what fatigue is and how debilitating it can actually be, but when I say “dizziness”? It’s just the most simple word that I use to refer to something I still don’t know how to describe, even after living with it for 4 years. Based on what I would call my poor description of this symptom to my neurologist, he has referred to it as oscillopsia, disequilibrium, vertigo and even pointed out that I have a slight nystagmus, which may be contributing to my complaint. But for the most part, I feel like a lot of those diagnoses are not totally correct because I don’t feel like I’m actually describing it properly.

Dizziness is a huge part of my daily life

That’s totally on me, and it drives me insane because I feel like in every other situation, I do a pretty decent job at describing what a symptom feels like, but not this one. I just can’t seem to put it into words. So, it drives me insane that I still don’t feel like I have an actual name for whatever this is because it’s been with me 24 hours a day, seven days a week since 2015. It has become a huge part of my daily life. I have learned to manage it a little better than before (it doesn’t make me sick anymore), but it is still incredibly debilitating, and nothing makes it any better. In fact, everything seems to make it worse! Anyway, for the sake of this article and simplicity, I’ll just refer to it as “dizziness”.

Some medications made my dizziness worse

Because my fatigue is so terribly debilitating to me, I was prescribed (after trying pill after pill after pill) Nuvigil (Armodafinil) which, among other things, makes my “dizziness” so much worse. I will, in fact, end up getting the energy and motivation I need to want to actually get up and do something, but I will become so dizzy that I just can’t. I’ll feel energetic, but I can’t even see straight, and it becomes so much more challenging to simply try to walk in a straight line without falling.

Everything seems to make me dizzy

Next, I tried Ritalin (Methylphenidate) which helps me think pretty clearly and also gives me some energy, but same thing; my dizziness gets kicked into overdrive. What about medication to help me sleep? Well, one of the best things I have found to work for me is cannabis. In fact, it helps me deal with a lot of other symptoms much better than pharmaceuticals ever did, but guess what? It makes me dizzy! Not “high” – dizzy. Going to the store and dealing with all the stimulation that comes with that? Dizzy! Stress? Too much exercise? Heat? Noisy environments? Dizziness!

Treating symptoms is very difficult

This makes treating symptoms for me very difficult because I can usually do a pretty good job at finding a way to deal with one symptom, but by doing whatever that is, I tend to make another symptom worse. In my case, the symptom that always seems to get worse is my “dizziness”. I kind of think of it like “spoon theory” but slightly more technical: let’s say I have a list of 10 symptoms, and I have 100 points that I can allocate to any symptom I want. Each symptom can technically be assigned 100 points, and if you are to allocate all 100 points to one symptom, that symptom would be 100% gone, but then the other nine symptoms on your list will have zero points which means they would be 0% under control. This means I have to carefully allocate my points in a way that manages all my symptoms just enough to allow me to function. So, let’s just say you were to allocate those 100 points you have equally among all 10 symptoms on your list; that would mean each symptom gets 10 points (they are all 10% “contained”).

I need to manage different symptoms for different tasks

But here’s the problem with that: when I’m trying to sit down and work at the computer, I definitely need to allocate more points to my ability to think and stay awake than I do to manage something like, for example, muscle spasms. So on days where I need to sit and get a lot of work done, I’ll take Ritalin, which is how I allocate more points to managing my fatigue and cog-fog, but those points have to come from somewhere, and that somewhere seems to always be my dizziness.

The point system

So again, as a symptom’s score gets further from 100 points and closer to zero, that symptom gets worse, right? Well now, after Ritalin, the score of my fatigue and cog-fog are closer to 100, but the score of my dizziness is closer to 0, and that is how I have come to look at my life with MS. To some degree, I can choose which symptom I want to better treat based on what I need to get done for the day, but I know that trying to make one symptom better will almost certainly make another symptom worse, and unfortunately, the symptom that always seems to get worse? The symptom that always seems to get points taken away from it to fund the need for extra points for another symptom? That symptom is my dizziness. I really hope this all makes sense because my whole “point system” is definitely more of a visual, and I may not have explained it well. But the point is, everything seems to make my dizziness worse.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • markt
    3 months ago

    I have the same top symptoms and also think I have all I have ever heard of come around from time to time
    fatigue and brain fog and dizziness are all fun and put ice pick pain in eye and other weird head aches with vision issues its even more fun
    great way to breakdown the treatments as I do think we all do that kind of thing
    I find that when dizzy steps up to #1 on the chart not even just closing your eyes and laying or sitting still helps it all that much
    it may help you not to get sick but any movement seems to bring it on more
    you know ,more in the old days, computers would lag behind so it would kind of follow movement a very short time after you would say drag something across the desktop ?
    this is what I sometimes think my brain is doing at that’s causing my dizziness
    my eyes are just not getting the real picture as the processors working to slow so I’m getting a slow late image

  • Matt Allen G author
    2 months ago

    That is exactly it! Like dragging something across your desktop and the lag almost creates a “trail” as whatever you are dragging tries to catch up to where the pointer SHOULD be based on where you have actually moved the mouse. I remember on an old Windows 95 computer I had that was a “feature” you could turn on, like, your cursor would trail. I wanted to mention that because it REALLY is like that sometimes but I didn’t think anyone would get what I was saying. And yeah, closing my eyes sometimes helps but even with them closed and me lying perfectly still, I still FEAL like I am moving. ARG!

  • CoryJ
    10 months ago

    I have had dizziness for about a month now. I also have a ringing in my ears. Some times it’s like having a white noise machine in my head. It has not come to the point of getting sick, but I do get an upset stomach some times. I also have Trigeminal neuralgia and have pain like a shock that goes from my neck up to the side of my head. When this happens I get a numb tounge and some times lips. I also have a left eye twitch. Because of the dizziness I find I’m not wanting to go out and interact with others. I become confused much quicker. The whole thing just tires me out. I see my Neurologist next month and hope we can find something that might help. I hope you can find some relief soon.

  • Matt Allen G author
    2 months ago

    I get the ringing in my ears (well, one at a time usually) really bad, it sounds like those hearing tests where you put headphones on and hear a tone in 1 ear and you have to rais the hand of the same side. It comes out of nowhere, everything is silent a peacefull one minute and then BEEEEEEEEEEEEEP, I flinch it’s so loud! I can’t imagine having Trigeminal Neuralgia, I have talked to so many people living with MS who also have that. It sounds so terrible! I hope you and your doc are able to find some sort of solution!

  • Donna Steigleder moderator
    10 months ago

    CoryJ, So sorry to hear that you have Trigeminal Neuralgia. That can be so painful and finding relief can at times be very difficult and frustrating. I hope your neurologist is successful in helping you find just the right combination of treatments to make the dizziness and pain subside. Sending our best. Donna Steigleder, Moderator.

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