Howdy Hydrocephalus

Understanding my unique gyroscope

1 Comment >

 It is no fun to be on the sidelines just lying in bed. Not even sleeping – just breathing and visualizing to make it through the pain. My current operating system does not run smoothly but goes in waves of energy. Sometimes I do stuff until I drop from exhaustion because I am trying not to focus on the pain.  Then I collapse on the bed and my right eye tears and right side of body then shuts off.  I can feel it – first the face then down and below the elbow and then leg.  I have to try with all my might to lift my arm.  It feels like it is paralyzed.  After an hour or two or three or or four, I am able to move again without concentrating.  I am dazed, confused, dehydrated, dizzy but up and ready to be apart of life again.  I think my weird stop, drop and roll into bed behaviour is like or really is a hemiplegic migraine. I know that they have tagged me as having a chronic daily migraine with ice pick clusters. I am not a chronic migrainer from overuse of over the counter pain meds, but instead from over excitement of neural pathways that have not calmed down after surgery.

I try to keep a headache diary but it gets old from putting down the same information daily.  Usually the pain or body shutdown hits around the same time everyday. 

I feel like superwoman on the rare day that I have not pain.  Then I go crazy and of course overdo it.  I really have to watch for dehydration.  I avoid chocolate, red wine, moldy cheese and most of the food triggers except caffeine (cappuccino is my treat)I try to be prepared for loud noises or prolonged loud noises with ear plugs (if if remember them) or I take the energy hit and sacrifice some up time at home. I try to watch for bright lights or those nasty fluorescent lights by wearing tinted glasses until you of course break both pairs by kneeling on them. I try to use ice or let cold air hit my face – it doesn’t stop the pain but lessens it.

Most days this is how I feel. A mixed media piece I created as part of my personal art therapy journey.Self Portrait Mixed Media
and this is my view. An iPhone pick of how I seem to be there but not really exist.
may2014 403

The doctors and I have tried all sorts of different meds. In February, the decision was made to try Botox as a way to desensitize my overactive neurons. It took a several months to get extended health approval as this is an expensive procedure. So on April 24, 2014 I was injected with 31 needles. When being injected, there is pain, my right forehead felt a little uncomfortable, but it has less feeling than the left anyway. When she injected the left side it felt like “holy shit burning acid being injected” I have no idea why people just like their wrinkles rather than put up with that pain. I was injected in my temples, various other places on head, neck and upper shoulders. The injection time took about 15 minutes or less (felt more) and I can still see injection sites on my forehead. Mostly it was quick and didn’t have too much pain. I just was not expecting to feel the Botox to be felt going in – No one warns you about this. However, this $1000 procedure is worth every penny if it works and I am not sidelined from life too much.

I didn’t notice anything significant right away. My head felt like lead and I can’t really raise my eyebrows at all. However after two weeks, there is some positive results. My pain is still there but dulled and I have had some sidelining attacks but I am currently writing on the computer without tinted lenses. My Neurologist says that we have to give this type of treatment at least three tries and then evaluate it’s success. So far I am positive and fingers crossed that we re-route the over active brain activity to a more important part like my right side of my body.

Here’s to being positive and changing my views on a the use of a beauty product for my brain. Oh how High maintenance I am (LOL)