I got lucky when I was diagnosed and had an ER Dr that actually knew what it was and I wasn't dicked around like a lot of people before they got diagnosed.
As of 3 days ago it has been 2 years since my diagnosis.
Two years ago I had a migraine, or what I thought was a migraine, that lasted for 16 days. I finally caved and went to urgent care after it got to the point where I could feel people talking and I could feel the changes in lights around me. I could literally feel it. Every time someone talked, to me or near me, my head would throb in tune with their voice, tone, pitch, everything. Same thing with the lights. It got so bad I wanted to throw up every time someone started talking or turned on a light.
At the urgent care I explained to the Dr what I was feeling and how it hurt so bad at the base of my skull, but when she pushed there I didn't feel any pain. The Dr was not comfortable with diagnosing me with just a simple migraine and recommended that I went straight from the urgent care to the emergency room. I almost didn't go to the emergency room, but decided I couldn't deal with the pain anymore.
I get back to a room at the ER and the nurse comes in and asks me a bunch of questions. Not even five minutes later I had a Dr in the room. Now, anyone that goes to the ER knows that the quicker a Dr comes in your room the more serious your condition is. So, naturally, I am freaking out at that point.
The Dr asks me the same questions the nurse asked me, walked out, and three minutes later I am being wheeled to have a CT scan. I get back from the CT and the Dr is back in my room. He tells me that I have pseudotumor cerebri and keeps rambling on about the condition. All I hear are the words "tumor" and "lumbar puncture" out of everything that he said. The Dr walks out to give me a few minutes to process everything before we proceeded and I called my mom in tears. I had no idea what the Dr was talking about, I didn't know what was going on, and I had only ever heard about lumbar punctures being the most painful thing you could ever go through. It ended up not hurting at all.
The Dr finishes up with me, I get my discharge papers, prescriptions, and a paper telling me I already have an appointment scheduled with a neurologist. Another sign it is no joke is when they schedule your follow ups for you.
Since then I see my neurologist every six months, had an MRI where I had a panic attack and cried the entire hour and a half I was in that tube, and had another lumbar puncture.
I stopped taking my medication about 8 months ago. I still deal with the tinnitus, headaches, pressure at the base of my skull, I can't look down to read for too long or my neck and head start to really hurt, and issues with my memory (remembering why I walked in a room, what I was trying to say, appointments, important information, etc.) and getting my thoughts out the right way, but it is so much more manageable than when I was diagnosed. I do still deal with one thing that scares me when it happens, but the Drs never really have much to say about it. When I am standing for too long, or grocery shopping, I get extremely dizzy and light headed. I feel like I am going to get sick and pass out. This feeling lasts until I sit down. I wish they knew why it happened but the only thing I can think of is when it happens the pressure around my brain is elevated.
I hear about people getting shunts put in to help the draining of the extra fluid and that terrifies me. That is brain surgery and shunts are notorious for clogging or not working for very long. I made the decision about a year ago that I would never get a shunt unless or until it came down to having to get the shunt or going blind. You read that right. If my disease ever gets bad enough I could go permanently blind. I have some issues with double vision from time to time and blurry vision, but my eye doctor is helping me keep that in check.
I am part of a support group on facebook, which is nice because I don't feel alone in this anymore. I don't know anyone in my non internet life that has this disease so it helps to have people I can talk to about it online. At the same time though, I don't like it. The group is a constant reminder of how bad I could, and still can, have it. It scares me to think that this could be worse that what I have already dealt with. I could just be in denial that I could get worse as well. I have been feeling "ok" long enough that I would like to think that this magically went away for me, but even as I type this I am getting light headed from glancing down at the keyboard and the light from my screen. I am also starting to forget my train of thought so it is time to end this post now :)
One day at a time. That is all I can do. Thankfully I have been having more good days than bad.
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