Posts tagged ‘neuropathy’

Topomax SUCKS!

Just sayin’.

One of the joys of neuropathy is pain. A lot of it. Like stars behind your eyeballs pain. So one of my docs stuck me on Topomax (Topiramate). It’s not an opioid painkiller, like vicodin or whatever, but it’s an anti-seizure medications that also keeps the nerve endings from firing off at a random painful level.

Ever hit your “funny bone?” That’s the ulnar nerve. That’s one of the nerves affected by my neuropathy, so it’s like constantly having that pain of banging your funny bone against something.

This class of medication has always screwed directly with my physiology. When they first tried two other similar drugs, my eyesight went to hell. I could barely see. I came off the meds and presto! I could see again. Cause and effect. Remove the cause and the effect goes away.

So, after a while, another doc said, “try this,” and handed me a prescription for 30 days. Well, I’ll be damned if the pain didn’t fade to a dull pain (it never really goes away), instead of the eyeball-exploding kind of pain. And it didn’t screw with my eyesight. But it did have direct effects on my physiology. I dropped a lot of weight that I couldn’t spare already, and I started noticing some other minor stuff. That was maybe a year and a half ago.

Now, being Bipolar II, I take a couple of meds for it. I long ago decided if I had to choose between being in pain or being crazy, I’d rather be in pain. When you’re in pain, the only one that hurts is you. When you’re crazy, you hurt everyone around you.

A couple of doc visits ago, I told her that I was experiencing some additional pain. I guess I wasn’t paying attention or she didn’t mention it quite clearly, but she quadrupled my dose. QUADRUPLED! So, like the dumbass I am, doc says “take this,” I take it. I think most of us have that knee-jerk reaction to medical professionals, even when we know they’re patently crazier than we are.

Usually I’m just snarky, but over the past couple of months I’ve noticed that I’ve become more aggressive and angry all the time. I’ve always occasionally had cluster headaches (look it up), but I started having them constantly. Last Friday my wife and I discussed it, and I told her it had to be the Topomax, because I had started to note the doseage on my emergency medical information list, and was boggled by the difference.

I’ll save you the horrors of what happened Saturday at work (hint: it involved the po-po), but needless to say, I’ve stayed offline for a couple of days while I’ve waited for this crap to work it’s way out of my system, and get some of my usual zen-like state back. In the meantime, if I’ve said anything stupid online, I’m really sorry.

I’m not making excuses. Ultimately I’m responsible for my own actions, but at least now I’ve taken steps to get this under control. I take 1/5 of the insane dose now, and only just before bed, so my stupid doesn’t reach my keyboard or my waking work life.

Anyway, again, if I’ve been a dick to you the past couple of days, I’m really, really sorry.

Best fishes,

Jack

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Neuropathy Quick Draw Pipe Holster

I have neuropathy and tremors, but we don’t know what’s causing it yet. When I know more, I’ll probably post it at some point.

Because of this, it’s incredibly painful to fold my hands to reach into my pockets and use fine manipulation. Pulling a lighter out of my pocket is literally impossible. Being unable to do simple tasks is frustrating.

Now, I figured out how to move everything to holsters, but when I fall down (which is getting more frequent), I end up either crushing what’s in the holsters, or really hurting myself where I landed on them.

Being annoyingly improvisational, I came up with this goofy pipe holster.

100912 Neuro Pouch 01

I loaded up a pouch with my pipe stuff. The snap hook you see on the back allows the pouch to move away from my body when I fall.

100912 Neuro Pouch 03

So here are the contents of my pipe holster. From left to right, top to bottom: pipe cleaners, backup disposable lighter, pipe (of course), pipe tool, fluid reservoir, lighter attached to belt snap, and the pouch itself.

100912 Neuro Pouch 04

Windcap clipped to chain. I just unclip it when I want to use it. To make the loop through the top of the windcap, I just bent a paperclip into a loop.

100912 Neuro Pouch 05

A pipe cleaner holder from Iwan Ries.

100912 Neuro Pouch 06

Zippo fuel canister. The skull attached to the clip makes it easier for me to pull it out of the holster.

100912 Neuro Pouch 07

Yep. Skull.

100912 Neuro Pouch 08

Zippo model 275. It comes with an elastic lanyard attached. Makes it easily retrievable if I drop it (boing!), and if the lanyard ever breaks, it’s easy to replace with a chain or something.

100912 Neuro Pouch 09

Pipe tool attached to key chain with a ball at the top. I can tuck the tool into the top of the holster, and the ball makes it easier to pull out.

100912 Neuro Pouch 11

I've got my eye on you…

Why yes, that is an eyeball. Torn from a screaming… uh… insert your own enemy here. Eyeball keychain from Tech Optics.

100912 Neuro Pouch 12

Again, eyeball keychain from Tech Optics. For cheap entertainment, put it in someone’s soup.

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The Pink Flamingo

Okay, went to neurologist #1. Sweet lady, took my wife so she wouldn’t ask me to fix her computer. Anyway, gave me an anti-epilepsy drug to try. Woohoo! Good thing I have the shrink to give me the more entertaining meds. Okay, so tested negative for diabetes, lyme disease, and a couple of other things.

Went to neurologist #2. Big dog. I think he’s head of neurology at UW Medical Center.

After the general questions, the bastard asked me to do something else I didn’t realize I couldn’t do. Stand on one foot. They had to catch me twice when I fell over. What is this, some kind of entertainment for docs? What’s next? Handstands?

Then of course, the usual 47 vials of blood. This time we’re testing for cancer, and a bunch of other things.

Pink FlamingoAs we were leaving the building, I told my wife that I had already given up my retirement career as professional bowler and ballroom dancer, but now I had to give up my hopes of becoming a pink flamingo in the front yard. -sigh-

Fell down three times since my last post. One time I got that horrid skin crawling thing that comes with neuropathy. I pulled into McDonald’s to get something to drink, and knew something was wrong when I could hardly put on the lid, and it was serious work not to drop the cup.

The UPS man was leaving just behind me, so I tried to open the door for him, and down I went.

Another time was getting out of the car, and the other was when my backpack on wheels took off at a dead run, with me still clinging to it.

Oh, and what’s really cool is that the postmaster approved my request to replace 4 doorknobs I struggle with, with levers. Guess he isn’t the dick I usually tell him he is. Er, forget that last sentence. Love you Len. And I mean that in a manly way, ahem.

P.S. There are times I struggle to do simple things, and I almost come to tears. Don’t tell my wife. I’ll have to kill you. Probably by falling on you.

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Lions, Tigers, Bears, and Neuropathy, oh my!

Okay, I haven’t been online much. Well I have been, but I haven’t spent a lot of time blogging or anything. I’ve been telling people that I’ve been having some problems typing, so we’ll talk a little about that tonight.

You know how someone asks you if you lost weight, but your spouse doesn’t notice because it happens gradually? Naw, that’s not what happened. What was happening was that my hands were shaking gradually more and more. But it happened gradually, so I just thought I was clumsy. Tried threading a needle, took me about 20 minutes of cussing. Figured it was my eyes.

One day, I posted a video on YouTube. It was a kind of technical vid on using a pipe retort. I set the camera aimed at my hands, so I could manipulate the camera. I’ll add here that the camera has a anti-shake feature, so again, I didn’t notice anything through the vid. I figured I’d get some comments and questions about alcohol percentage, disinfection, blah, blah, blah. Instead, the most comments were about how bad my hands are shaking during the video. Here’s the video. You can turn off the audio, it isn’t important, but watch my hands…

If you do listen to the video, you’ll hear a catch in my voice as well. I hadn’t even noticed any of that until I started getting emails and comments.

My arms and legs were getting really tired fast, and I was having a tough time writing.

Now, I hate seeing docs. All my family doc ever says is that I’m just getting old. After years of this, I thought, duh, get a second opinion, so I saw an orthopedist. I did have a torn meniscus but after the surgery, I couldn’t hold my legs steady enough for rehab. He suggested neurologist, so I went to this very nice doc. I did actually bring the video above with me, because sometimes I worry that they’ll just say I’m a hypochondriac.

She saw the video and said it was a “resting tremor.” At this point, I’m going to assume you know how to do ‘net searches, so I’ll use technical terms to keep this novel a little shorter. She had my draw a spiral, and it looked like someone doing a spiral during an earthquake. She moved my arms, legs, had me do this and that.

Now the weird part. You ever watch those cop shows where they test to see if someone’s drunk by watching them walk heel to toe (tandem gait)? I haven’t done that under observation since I was 18, but hey, I could do it a few years ago, what’s the big deal? One step into it, I fell down. I got back up and she said that was okay, and have a seat. Well the hell with that. Must’ve been not paying any attention. Well, I did manage to make it 3 more steps. I was gasping with the effort, and it looked like I was walking a tightrope. I knew I was off-balance, and my brain was telling my legs what to do, but they just were ignoring me. I stopped trying it, stumbled sideways into the wall. Maybe it was a smart thing to have a seat at that point.

She said it was neuropathy. The loss of balance, and my difficulty walking. I’ve been walking with a cane for years because of my screwed up knee, but what I didn’t realize was that using the cane was masking the fact that I was off-balance.

So, long story short, I had my brain magnetized, 5 gallons of blood drawn ONE TINY TUBE AT A TIME, and have been repetitively subjected to electrocution.

We looked at the MRI. That eliminated the two scariest things; a tumor or lesion on the brain, and multiple sclerosis. There was an abnormality that I’ll name a little later here. Parkinson’s was ruled out clinically. So now it’s down to diabetes, idiopathic neuropathy, or “other.”

Ataxia MRI

Diagram showing MRI scans of two brains. The brain on the left shows atrophy (shrinkage) of the cerebellum. The brain on the right shows a normal cerebellum.

So, end of story, mostly, is that I have ataxia (cerebellar atrophy), neuropathy, peripheral neuropathy, and cubital tunnel. We just don’t know what’s causing those yet. I’ve contacted a relative if he knows of anyone on his side of the pond with similar disorders, but I sure as hell can’t remember anyone on my side of the family having anything like this.

My arms and legs are getting weaker, and it’s damn near impossible to stand more than 5 minutes. My right hand and arm are pretty unusable, but my left side is a little better. I’ve had to make some modifications to my car, including a suicide spinner (look it up), an extension for my turn signals, a “lazy-susan” for my ass so I can swivel out, and a beast of a bar that inserts into the door handle to help me out of the car.

Home is getting interesting. I’m sitting in a hydraulic chair at the moment, that tilts forward and lifts so I can get up a little easier. I’ve replaced some of the doorknobs with door levers. Got a couple of those grippy/picker-upper things that I chase the dogs around with. I have this torture device so I can slow down the muscle loss. I have 28 canes, so that’s not an issue, but I may be looking at a walker soon. And I have pouches on my belt, because it hurts my hands to much to reach them into my front pockets. Writing has become ridiculous, while my hand refuses to do what I’m telling it to do. I can type, but it does start to seriously hurt after a while.

I was depressed for about 2 minutes when I realized that I’m never going to get better, only worse as time goes on. Then I thought, screw this. If I can make my own wonky inventions, and cheats, and I’m not dyin’ or anything, things are good. But my dreams of becoming the world’s only a bowling/ballroom dancing/card thrower champion are pretty much shot. I’ll just keep some humor and a positive attitude through serious medication…heheh…

U-Step Walking StabilizerMy wife, however, is totally freaked out. She’s trying to modify the house, or get it sold so we can live in a one floor house. Kind of overreacting there. I joked about having my walker all picked out and she started crying. And if you look up ataxia, I told her at least she was guaranteed to always be smarter than me. 🙂

Anyway, so while I will still post from time to time, I have to give up something else to do with my hands that day. I can do one, or the other. So, don’t cry for me Argentina (and screw you if you don’t get the reference. And if you say you’ll pray for me, I will personally whack you with my cane. If you want to help, come over and rebuild my deck. Or get McChord Air Force base to quit flying over my goddamn house. They come down now so low, that I can see the passengers, the color of their hair, and occasionally sneak a peek at what they’re reading.

And if someone tells me I have to give up my pipe, or relent and go to the VA hospital , I’d rather die on the street. While having my toenails pulled out. Knowing the VA hospital, they’d probably have my ears pulled off instead, and take someone else’s toenails out.

And I absolutely swear to NOT upload the MRI scans to my Flickr account…unless I can get a scanner big enough.

Best wishes to you all, and Facebook readers, I don’t see your comments. These posts are just on my blog and are automatically fed into Facebook and MySpace.

Here’s some links I’ve used to scare the crap out of myself:

Here’s an excellent link explaining what it’s like to choose between typing or doing something else with my hands: The Spoon Theory written by Christine Miserandino | But You Dont Look Sick?

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