Head Bonking

I thought I was having a BAD hair day, but took the picture anyway. I'm afraid to show y'all what a good hair day is, in fear you might faint.

Anyhoocares... I suspect the 24 hour heart monitor will show absolutely zip. I had two slightly light-headed episodes, but they caught me on an off day. No surprise to me because the fainting goes in waves. I might have one bad day, three good; then three bad days, two good. Since I've been unemployed, the bad days are few; maybe once or twice a week.

I'll be turning in the monitor today, spotty chest and all, and will make an appointment with the cardiologist. He told me that he thought the tests yesterday (Echo and 24 hour monitor) probably wouldn't show anything and he was right. Well, unless something happens with my heart that I'm unaware of.

Tra- la- la.... and now I'm headed to the phone to call the neurologist to get this jerking stuff taken care of, already. It's really tiring. Literally.

I've been doing SOOOOOOOOOOOOOOO well with the neurological stuff for the past few months, but starting around four days ago or so I started jerking and walking like a drunk again. The jerking is HORRIBLE. I'd forgotten how awful that was.

I'm trying to figure out the root cause and I'm wondering if I should call the neurologist on call or just wait it out until Monday. The jerking just wipes me out because it's not in the least subtle.

I went off the anti-jerking meds (Requip) somewhere around a week before my doctor started me on Lyrica (that was 4/15 according to my blog... see why I write everything here?). I went off it because I was experimenting, trying to get off my drugs. I'd previously tried getting off the klonopin (no dice, started jerking again, so went back on about three days later); seroquel (no dice, got to the point where I couldn't sleep AT ALL); and then decided to try going off the Lyrica. Although this drug is for restless leg and Parkinson's, my neurologist prescribed it for the neurological jerking (officially called myoclonis), which started after the first head bonk (almost two years ago.. wow..)

I guess the problem is that I've been ramping up on the Lyrica right after going off the requip, so it's really impossible to guess which, if either one at all, is causing the issue.

The Lyrica was working SO WELL, so I don't want that to be it. I'm up to 75mg 3x a day and I'm only in pain when it's rainy or cold out (too bad I live in Seattle, eh?), or when I try to chew or move my jaw in certain positions. But the all.day.long aching is gone. It's been great.

I'm going to go back to just two a day to see if that will help. I'm afraid to go back on the Requip by myself because my neurologist put me on the Lyrica knowing that I was off the Requip.

If that doesn't help, I'll call my neurologist on Monday and hope that her assistant gives her the message.

This is so depressing....

Who knew that it'd be my neurologist? I've always liked her from the minute I met her. She's a no nonsense kind of gal and will tell me "No, I'm not going to up that drug because it's addictive", or "No, I don't think you should take time off- that would be the worst thing for you." (heh- I think she is wrong about that... I'm totally enjoying my 'vacation')

Many people wouldn't like her because she's not warm and fuzzy, but I do, and apparently her peers do too. Whenever I mention that she's my neurologist, doctors say how great she is. So I guess that's one good thing that stupid hospital did after the first head injury- assign me to this neurologist.

Anywayletsgetbacktothestory...

Jaw doctor wanted to put me on pain meds but looked up the meds I was currently taking and said that my neurological meds were stopping him from giving me pain medication, so he wanted to talk to my neurologist about it first. He ended up giving me the lowest dose of vicoden with an exchange of stopping the seroquel and doubling the klonopin. So I did that for about a week and then I literally quit sleeping. I was very very tired, but I couldn't sleep. I'm not talking about waking up several times at night- I mean it literally. It happened a few days after this post. I went back on the seroquel, went back to the original klonopin dose and only took the pain medication when I just couldn't soldier up. Boy oh boy have I been sleeping. I had three days in a row of sleeping 13-15 hours in a row. Today I finally feel caught up.

I mentioned all this to my neurologist and said that I'd rather be in pain than not sleep. She asked, "is that really OK with you?".

Wow, I've never been asked something like that from a doctor.

I replied, "No it's not and it makes me angry that I have to make that choice." I could feel the tears well up in my eyes when I said that.

She said, "Well then, want to do some experimenting?".

Ha- do bears poop in the woods?

She said that she wanted to keep me away from drugs that can have a euphoric effect because that's what causes addiction. She knows I'll need long-term pain relief so that just wasn't an option for me.

We're trying Lyrica to start. I'll be taking 75 mg at night for a week and then adding 75 mg in the morning to see if that gets rid of the pain. If not, she'll up the dose and we'll keep upping it until we find a good level. She said that it's not addictive and it really does work well in situations like mine.

I'm not noticing a difference today- but maybe it needs to build up.

The jaw guy ordered a mouth guard to wear at night in hopes that I'll give my jaws a rest from the clenching and stuff and maybe I'll be in less pain. I went yesterday to pick it up, and of course they had to make sure that it fit right.

The tech puts the thing in my mouth and it wasn't sitting properly. So, she jams it harder. My jaw and face are not in the kind of shape that appreciates a lot of jamming, so this was not very pleasant.

After about 10 tries, she takes it out and shows it to another tech saying, "I don't think this is hers". The other tech puts it in my mouth and says, "Well, it's lining up with all her teeth- see? I think we might just need to hollow out the teeth in the implant a little more."

The jaw doctor walks by (thankfully) and so the tech brought him in. He looks at the mouth guard and at my teeth for probably 10 minutes and says, "this isn't hers. Go get the rest of the shipment from that day".

There were five other night guards and I thought this would be easy because my mouth is so small. After about 15 minutes of looking at the guards, the jaw doctor proclaims, "this is Lori's guard". Then he explained to me that I have a harmless genetic mutation in the roof of my mouth (see? I told you guys I am a genetic mess) and the mold clearly showed it.

So they took tried it in my mouth. It fit perfectly, kind of like the glass slipper- only the jaw doctor wasn't a handsome prince and well, jaw guards aren't really that romantic.

I think the worst part is that they were going to just sterilize the one they'd tried to put in my mouth and give it to the real recipient. Yuck! If I knew mine had been worn before me I'd be completely grossed out.

Since I've been unemployed, I've been able to wean myself off of all but one of my neurological medications. Sure, I'm stressed about money, but not physically and mentally stressed like I was with going to work.

I can't tell you how much BETTER I feel without the mind-numbing meds. It's been so long since I've been able to jump out of bed ready to greet the day, that I forgot what it felt like. For a while there, I thought I was a bit manic and maybe I was, but things have settled down.

I'm not tossing the medications, because I'm not so Pollyannaish to think that when I go back to work, the neurological problems are going to stay away. I can still hope that's the case though.