That's me. It sucks. Basically it's a doctory way of saying my brain thinks and acts like it has a brain tumor, but it doesn't. Have you ever had a migraine? Take your worst migraine and multiply it by 10. The pain is real.
My body either produces too much or does not absorb cerebral spinal fluid, this fluid accumulates around my brain putting a lot of pressure in my head. My vision is affected. My hearing is affected, there is a constant ringing in my right ear to the point that I almost can't hear out of it anymore. My brain function is affected. There is no cure. The meds I'm on help a little and there is hope of remission at some point, but it seems that the condition will only return later if that does happen. Treatment consists of medication and/or shunt surgery. My doctor is trying to avoid the shunt, though he did bring it up last week at my last appointment. I would be the first patient of his that he refers to surgery. I'm not sure how I feel about that.
From all appearances I look fine. I try to act fine. I try to hide the pain, I try to ignore the side affects of the meds. I want to portray a normal life, whatever that may be. But this is real, it is here and it doesn't appear to be going anywhere any time soon. This really sucks. I have spent 20+ years battling migraines, fighting through THAT pain, trying to have a normal life and this is where I am now. It really isn't fair.
I could list all the things I've tried over the years, the natural remedies, the non-natural; the doctors that laughed me out of their offices, the ones that tried to help; the lifestyle changes that made small impacts, the ones that only helped a short time; the big life changes we chose to make in hopes of helping; the suspected triggers we're trying to still to get away from. I'm tired. I want a carefree life. I want to live without having to think about how my actions are going to impact me later. I want to enjoy a trip to a theme park without having to plan how to space my day for my head's sake. I want energy. I want to hear again. I want to scroll down a webpage without my eyes physically hurting. I want my son to be able to walk in a circle around me without me losing my balance, the dizziness is awful. How did I end up like this?!
I'm struggling a lot lately. I'm someone who was great at multi-tasking. I was great at math, great at school. Now I get tired easily. I can't concentrate when there is noise around me. I get distracted easily and I forget things. I make more typos than I care to admit, my spelling and grammar and have slid downhill. How am I still homeschooling?! Things that once were easy for me are now more difficult and things that were a challenge are no longer attempted. I run my own web design business that I absolutely love doing, but I fear that I no longer produce the quality and speed that I once was so proud of, leaving me wonder what my next steps should be and when.
I started writing this as an awareness post because September is IIH awareness month, it wasn't supposed to turn into a pity party, but I guess you can see where my feelings have been lately. I've just been really frustrated with my head and trying to work through my challenges which seem to be getting worse. For more information you can visit the Intracranial Hypertension Research Foundation.