Chiari Malformation

I have it. My new neurologist (Dr Rao at Hopkins) looked at my MRI for about 2 seconds and diagnosed me with it. I didn’t know what to say besides “oh”. And I thought back to everyone who came to me and said “Have you heard about this thing called Chiari Malformation?” And my answer was always yes, but I’ve already looked into it and I don’t have it. JOKES ON ME.

I’ve got to find exactly which of my MRIs shows it.

So far my treatment is to drink water; 2.5 L a day, which sounds like torture to me.

The more research I do, the more my symptoms match up pretty much exactly.

 

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That Feeling

Lately I’ve been having that feeling.

The one where you just want to stop taking all your medications and just suffer.

To punish your own body for punishing you for so long.

Lately I’ve been giving that feeling serious thought. Because of side effects.

Side effects that my doctor has “never heard of before” and that “shouldn’t be happening because of this medication”. Nevertheless, I’m experiencing them. And every time I stop the medication, these side effects go away. It’s at the point where I would rather have high blood pressure than suffer through this side effect.

I do want to lessen the amount of medication I take daily. Although taking medication makes me feel like my conditions are more “real” and it’s not just all in my head as I’ve been told for years.

Some Sort of Hope?

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For the first time in a long time, I am feeling somewhat hopeful. Although I am also afraid this was some sort of fluke.

Thursday June 23rd 2016, something changed. I was scheduled for my 2nd consecutive round of Botox injections, as well as trying an occipital nerve block for the first time. I was nervous. I sat in the waiting room, worried about passing out or something horrible happening. My last session went fine, no dizziness or anything, so there was no real reason to worry this time.

As I laid face down on the table, counting fours as I breathed in and out, a few things happened. (1) I realized that having a needle poked into an already sore nerve in the back of your head HURTS and (2) Maybe it wasn’t so unreasonable for me to be concerned about dizziness earlier. A total of 35 needles later, and I’m sat upright on the edge of the table when the nurse practitioner asks me to rate my pain on a scale of 0 to 10. And I can’t do it.

I cannot locate any pain.

Of course, I’m dizzy and I feel numb and tingly and like there is a bunch of pressure in my head and I cannot think straight, but I cannot locate my pain. I walk out of the building, thinking that I really should have brought someone with me because I cannot walk in a straight line to save my life because of how dizzy I am. I get to the parking lot when it finally hits me.

They did it!!!

All the YEARS of pain, doctors appointments, hospital visits, and crying in the ER and Urgent Care and I am finally here. They have found the problem. I didn’t think I was capable of it, but I began to cry tears of joy. And they won’t stop! I cry the whole drive home.

It lasts for about 4 hours before another migraine hits me. Throbbing, intense pain in the front of my forehead and behind my eyes. But I am still happy. Something happened. I am not sure what yet. And now I have a bunch of new questions for my appointment next month.

Are these nerves really the problem? Is it a combination of things? Do I need to still be on this medication? What does this mean for the future of my treatment?

I don’t want to get my hopes up too high. But I haven’t had hope in a very very long time. And I don’t know what to do with myself.

Migraine Awareness weeks 3 & 4

Week 3 was a struggle for me. I was dealing with major brain fog and some return of the more constant pain. Maybe it was the botox wearing off? I couldn’t properly make the image I wanted to, but I decided to try to illustrate how I feel during a really bad fog episode.

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Week 4’s image is how I feel most of the time… Out of order!! My brain is not working properly. Purple sticky note because purple is the color for migraine awareness. IMG_4240

I think this may be the conclusion of my little photo project for Migraine Awareness month, unless I can come up with another really cool idea or something for the last few days. I am exhausted!! So much running around to doctors appointments and driving and I just want to sleep. Zzzzzz.

MIGRAINE AWARENESS MONTH

June is Migraine Awareness Month!!!! Here are some facts:

  • Migraine is the 6th most disabling illness in the world
  • More than 4 million people in the US have chronic daily migraine
  • 18% of American women experience migraines
  • More than half of all migraine sufferers are never diagnosed

 

Chronic Daily Migraine has really sidetracked my life; I never thought it would be like this. I see my neurologist more than my friends. I think a little more education and awareness is needed. Migraine is not “just a headache”, it is an actual neurological disease.

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Photos are of my actual brain MRI.

 

Side Effect

I have had this idea in my head a long time, to make a image that represented (as close as I could) the hand tingling that I got when I was on topamax. It’s like that feeling when a limb falls asleep, it sort of tingles but at the same time is stings. It’s like having TV static in your hands but you can feel the electricity.

Topamax

Thankfully I’m no longer on this drug but I remember the side effects like it was yesterday!

On Waking Up

Waking up is hard on most days. I don’t want to get out of bed, ever. There is no waking up feeling refreshed and ready to start the day! I can’t remember the last time I felt like that (3 yrs ago maybe?). Now it’s just pain pain pain pain pain. Try to manage the pain and start the day.

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Actual photo of me waking up every morning. 

Shout out to those who keep going even though waking up every day is the hardest thing to do.

Rare Disease Day: Visual Snow

So lets talk about my rare disease. I suffer from Visual Snow. I cannot find any statistics or community about my disease. Visual Snow is a 24/7 neurological disease that causes visual symptoms, like seeing snow or tv static. It also causes increased light sensitivity, seeing after images and trails, fatigue, tinnitus cognitive dysfunction and some others. It can lead to anxiety and depression.

 

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My “suffering the silence” portrait. http://sufferingthesilence.com/

I have a hard time getting doctors to take me seriously because of this condition. No one has answers and there are no tests. No studies are being done in the US (as far as I know).

It is hard to live with this disease because it is widely misunderstood. It affects my most important senses (sight & hearing) as well as my brain. I have a hard time seeing through the snow and visual disturbances. I have a hard time hearing because of the tinnitus and sound sensitivity. I have trouble with thinking, forming thoughts and words, and then communicating those thoughts coherently. I often feel like I am trapped inside my own head, unable to see, hear or effectively communicate with the world around me.

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An example of VS. https://en.wikipedia.org/wiki/Visual_snow

 

I have special doctor recommended glasses to try and tone down some of the symptoms. They block about 20% more light than normal sunglasses, and have a purple tint that’s helping me deal with some afterimages, contrast issues and a small amount of snow. These glasses are allowing me to gain some of my visual functionality back.

There is no cure and no treatment that has been proven to work. Experts don’t even know which part of the brain it comes from. I can only hope that it doesn’t get worse as I continue to struggle through every day.

Here’s a video that made me cry REAL TEARS the first time I watched it. It (almost) perfectly describes my vision. Add in a large amount of mystery scotoma and more colored halos etc. and that’s pretty much how I see.