** Editor Note: Holy long post. This turned into something much longer than I had planned. My apologies. But it is worth the read … at least it was helpful for me to get it all out. Thanks! **
If you are not a fan of the parody David Blaine videos … my apologies for your non-understanding of the title of this. If you have seen these videos … pause here for laughter ….
Now, seriously. What the eff is going on with me? I’m sure there are many people who have asked themselves this question over the last couple of months, maybe longer. Mabye no one has noticied. I’m thinking that is possible becuase the more introspective I get the more I see that I have been “like this” for a long, long time. But something (I’m pretty sure I know what … I’ll get to that later) has set my being “like this” into a horrific downward spiral and my desire to not be around people and hermit myself away, flip-flopping with bouts of hyperactivity is becoming totally out of control.
The social worker I’m seeing temporarily thinks that I’m experiencing some ups and downs between depression and a fun combination of anxiety and panic. I have no “official” diagnosis … which I am finding is quite common when dealing with mental illness. There is no box. No one size fits all. There are overlaps and in-betweens and bits of this and that and you deal with what you have the best way you know how. But I digress … back to what is up with me.
Those who have known me for a long time know that I tend to have spells where I go away. I don’t talk to people for awhile. I don’t want to attend social functions or do much of anything with other people. I hibernate. I become a hermit. I hide. It has been called many things by many of my friends and family. It’s is very bothersome and annoying to them as well, and I know that. I wish that I could “turn it off” (trust me, I wish this more than anything) but unfortunately it seems to be just getting worse.
Those who have known me for a long time also know that I have been dealing with Migraines and the fun that goes along with them for many years. A handful of years ago I found a wonderful Neurologist. We tried all kinds of things and medications. I’ve been on all of the special migraine medicines. I’ve done beta blockers and other heart medications. These worked on and off, here and there. But then I found that I had a headache, nearly daily and sometimes stretching for days at a time. He said I had what they called “transformed migraine” (which basically meant that my headache never went away, just changed from type to type. So he told me that they had just approved the use of an anti-seizure medication (Keppra) for use in Migraine. Turned out that they did scans of folks having migraines and their brains looked a lot like those of folks having seizures. Go figure. But it worked. My never ending headache went away and I went without a “migraine” for a very long time. Years. I’d have a sinus headache or other normal kind of headache every now and then, but a little ibuprofen and it was gone. Life was great.
(I’m gonna speed through this next part quickly to fast forward all Scooby-Doo style to now)
Then I developed double vision. It was pretty darn bad. I couldn’t see well at all and at night it was super bad. I went to my Neurologist and he got a bit worried. A previous MRI I had showed evidence of demylination, which is a sign of MS. Double vision being a symptom of MS had me getting another MRI and a crap ton of labs (18 vials of blood to be exact). The MRI came back unchanged – which was good and I went to (no lie) 4 different eye doctor/surgeon/neuro types and they said my double vision was just muscular. Two eye surgeries and I’m fixed … at least close enough to use prisms in glasses to see.
Then I got a new job and lost my beloved neurologist to insurance changes. Major suckage. But, I was doing well so my PCP took over writing the Keppra scripts for me and I went about my life. Then a couple of years ago I got this very wierd symptoms of a buzzing/vibrating/electrical sensation in my brain that didn’t go away. Not ever. After several days of losing my mind to this sensation (no pain mind you) I had to get a new Neurologist. He’s perfectly fine I’m sure, I just don’t get the same vibe from him as I do my old guy. He examined me and said the sensation was an Aura without the Migraine. He put me on Klonopin, which is used for a variety of things (including seizures and anxiety disorders). After two days on a low dose, the sensation went away and I rejoiced for I felt like I didn’t want to slam my head in a door any longer. After a year the script ran out and I didn’t refill it right away. The sensation didn’t come back and stayed away for about two years ….
Then on May 16, 2010 … the sensation came back. It was a Sunday morning and I woke up with it and a headache. The best way to describe it is to put your cell phone on permanent vibrate and stick it inside your head. That is what I have. Nearly all the time. Still. I have daily headaches as well again. And the three days after this started up I also had: dizziness, loss of balance, nausea, shaking of my hands, some loss of motor control of my hands and fingers ringing in my ears and this weird shaky sensation in my whole upper body. My co-workers joked on Tuesday that I looked drunk walking down the halls. I was freaked the flip out. I called my neurologist and they couldn’t see me for just over a week. Longest week of my life. I finally got in and he prescribed the Klonopin again. I asked “so you think all of these other symptoms are related to migraine?” and he said “No I think it is all anxiety and stress.”
A week goes by and I have no relief. At. All. I call him and he’s on vacation so they suggested I call my PCP who didn’t understand why he didn’t want to do a MRI. I didn’t understand either. My PCP put me on a tapering dose of steroids in case I had some sort of swelling or infection and ordered an MRI of my brain and cervical spine (with and without contrast). The report comes in and the brain MRI is still unchanged (yay!) but the cervical spine MRI showed an 8×8 mm “something” that couldn’t be described as anything in particular … so I get to go back in six months for another … to make sure it isn’t growing. (Let me tell you … this does not encourage de-stressing and relaxation). But I’m over that for now … because I’m still having the buzzing and the shaking and some here and there dizziness and moments where my heart feels like its gonna jump out of my body and tango down the hall and this really, really sucks.
So, much like addicts have to do, I had to admit to myself that I have a problem. I know I struggle with depression and have for a long time. I shut myself off. I go to the opposite extreme and have fantastic days where I think I can do it all and try .. and then end up stopping. I’m the queen of unfinished projects. Ask my husband, or my mom.
I started with my PCP who said “yes – you need to talk to someone.” So I went to the Employee Assistance Program at work for some free counseling with a social worker (who is FABULOUS by the way. Love. Her.) She agreed that I’m going to need some help. She agreed with me in that it is likely this most recent flare of my brain symptoms have caused a giant disturbance in my brain and what might have been some kind-of-bothersome-and-annoying depression has turned into a monster of depression/anxiety/stress/mess.
Where am I now? Waiting to get an appointment with a Psychiatrist to help me find the right medications and waiting to get an appointment with a Psychologist for some therapy to help me deal with … life. My brain is still buzzing and I still get headaches daily, so this week I get to call my Neurologist again and say “Not working. Still.” And see what he wants to do next. I’m also having what I can only guess are anxiety attacks daily where I’m certain I look like I have Parkinson’s disease … but not really. It’s all inside me. No one can see it … only I can feel it.
I’ve been doing a lot of “looking back” and seeing a lot of patterns and this is all making sense. My brain and body was just waiting for my ego to admit I need help and I’m looking forward to getting that help. If you want to check in on me … feel free to come back here every now and then. I’m hoping to do more writing. The counselor said journaling will help. Some of them will be private … to protect the feelings of people I love when I need to vent. Most of them will be public. Some will be about this specifically and some won’t. But I at least wanted to try to explain myself for anyone who knows me and has wondered what the heck has been wrong with me. “I don’t feel well” is the best I can come up with in casual conversation … but it really doesn’t cover it.
Send me prayers and positive thoughts or whatever you desire. I’m working right now on getting through every day, one day at a time. I’m discovering all kinds of things about the world of mental health. Like how freaking difficult it is to find a doctor or therapist. It shouldn’t be this hard for crying out loud. But I’m pushing on. Putting on a smile and trying not to bum everyone out when I am out in public. Ducking into the bathroom for a few moments to breathe, or cry, or resist slamming my head against the wall. Bear with me … I plan to be back soon.