Flopsy Mopsy

I had my Botox injections almost two weeks ago now.. and this has been brutal so far. I am still in excruciating pain and the complications (I hope they are complications, anyway!) are really disturbing!

I haven't noticed any relief from the pain this time, but my motion side to side has improved a bit. I don't think I have as much motion as I had with the first set of injections and now, I am having serious problems with the strength in my neck muscles.

I manage for the first part of the day to keep my head mostly upright.. But after a few hours.. My head just becomes too heavy for me to hold up.

My head seems like it gets so heavy.. Like my brain wants me to look down at the floor, no matter what I do, my head flops forward. Just like a Flopsy Mopsy doll!

When I try to look in the mirror, or in the upper kitchen cabinets, I can't lean back enough to see that high. The top of my head is forward and my forehead is facing the floor.. when I try to lean back at the waist, I can hardly even see to grab a drinking glass from the low shelf.. And I can forget, at all, about seeing the upper shelves. I am struggling to tilt and lean way over to the side enough to be able to see out of the corner of my eyes.. To look up, at all.

It's now late in the day, and I am having to write this entry while lying down on the couch. I have to more strength to hold my head up. There's no way I could function sitting in a chair or at the computer desk, I'd be stuck watching the keyboard instead of the monitor!

Hopefully, the Botox toxin will level out soon and I can find out if this is a side effect or if I am just getting worse! :(

Dystonia Girl vs Botulinum Toxin - Round 2 ding ding ding

It's Friday night.. and I can't sleep.. I am in so much pain! OMG!!

I had my second round of Botox injections this morning. And that was not fun AT ALL!!


Doc injected me probably about 30 times.. with 200 units of Botox.  In my upper back, my traps, up the back of my neck, and in the little muscles under the jaw down to the collar bone.  It was like getting stabbed in the throat over and over again! Those were the worst ones! :(


My hubby took some pics while I was there..

This is the doc getting the needle set into one of the spasmodic muscles.

And this is me (grimacing - not smiling), trying to hold still as he pumps me full of poison.

Today, at my appointment, we also talked about the problems I've been having with my voice... and how it's been cracking and turning to "pockets of air" as I speak. Doc said that there's also another Dystonia called Laryngeal Dystonia, which puts the vocal cords, since they are also a muscle, into spasm and it affects the speaking voice.

He can refer me to one of the very few ENT Specialist, that do the Botox injections right into each of the vocal cords. :-/ 

Seriously? Ok, I'm gonna have to think about that one for a while, because just getting the injections into the outside of my neck/throat hurts like hell.. Um.. yeah..

Getting stabbed in my vocal cords VS losing my voice?  Maybe losing my voice won't be that bad?

It's been a long day, so some pain meds.. and I'm off to bed! Not that I'll probably get much sleep again.. I have a lot of new decisions to think about apparently!



How I Became a Dystonia Patient

I had my Botox injections on Wednesday.. and it's now Thursday.. just one day later. When I woke up this morning, I turned to my left to see what time it was.

OMG!! I TURNED TO MY LEFT TO SEE WHAT TIME IT WAS!!!

It wasn't a big turn, but it was a turn.. about 10 degrees!! OMG!!! I started crying, I was so happy!!!

I screamed to Mark, "Honey look!!" as I turned my head back and forth a tiny little bit each way. OMG, I can move. Not a lot, but I can move!!! I've been essentially paralyzed for 10 weeks, so I am sooooooo happy, sooooooo excited!!

And then it hit me. OMG!! I started crying even harder. OMG!! I am so sad.. and so scared... and so happy.. and so excited.. and so sad.. and

OMG!! I have a PERMANENT NEUROLOGICAL DISORDER!! I HAVE DYSTONIA!

Yes, I do. I have Dystonia.

My new life started February 6th, 2012, my changed life...a life of pain, of disfigurement and disability... a life of Botox and pain meds.. a life hoping for a permanent cure someday.. and on this day..

I became a Dystonia Patient.

And this blog is about...  My Life With Dystonia

Very First Botulinum Toxin Injections

After numerous trips to every doc I could imagine, my neurologist is becoming my go to guy!

He has ruled out disease after disease, injury, blood disorder, one after the other.. narrowing down his options.. until last week..

"Nat, there is a very rare, incurable, neurological disorder, called Dystonia. It's a movement disorder that causes the muscles to contract and spasm involuntarily, because, like Parkinson's disease, the neurological mechanism in your brain that makes muscles relax when they are not in use, does not function properly. It causes opposing muscles to contract simultaneously as if they are competing for control of your body parts. The involuntary muscle contractions force the body into extremely painful, twisting movements and to be stuck in awkward, irregular postures. But, I've never seen symptoms simply appear overnight, like your symptoms did, so I'd like to try treating it.. if the treatment works, we can positively diagnose you with Dystonia."

He explained how Dystonia, unfortunately, has no 'cure', but can be symptomatically treated with Botulinum Toxin injections.. Yes, Botox! Apparently, there's cosmetic Botox and medical Botox. Who knew? Because Dystonia is a neurological disorder, these spasms and cramping muscles, have to be treated neurologically, by tricking the brain, instead of treating the muscles (which is why medication after medication didn't work). Each of the cramping muscles is injected with the Botox.. and Botox is essentially a poison.

This is done every three months. Hopefully the Botox lasts the entire three months, but typically, it fades from the body within that time frame. The Botox injections poison the muscle's nerves so that the brain cannot send messages to the muscles to cramp up. The Botox, allows the doctor to trick the brain, to hide these muscles from the brain, the poison stops the mixed up messages from getting through, and allows the muscles to relax a bit, and to stop competing with each other. And hopefully, ease the cramping, ease the stiffness and ease the pain.

I left his office and he ordered my Botulinum Toxin prescription.

And today, I went in for my Botox injections. And he injected muscle after muscle after muscle.. It had to be about 20 injections.. until my neck and back and shoulder blade area were all treated. OUCH!! That was definitely not fun! :(

Doc says if I have Dystonia, then I should feel some relief in about 7-10 days and hopefully it should last just shy of 3 months!

So now... we just wait and see what happens....

This is not a dream!

So, I am still paralyzed and still in excruciating pain!!

At first, I thought, like everyone else, "Eh, must have just slept wrong and have a stiff neck." But the pain got worse, the stiffness got worse. The pain and stiffness has slowly traveled down my neck, down around my shoulders, down my left shoulder blade and then down and around to my lower abdomen. And, not any pain that I could just forget about, this was overwhelming, this has kept me in bed for most of my days and nights, this has kept me in tears for days at a time, this has sent me, over and over again, to the emergency room screaming, shaking and crying in pain, pain like I haven't felt since I gave birth to my kids.

Day after day, of MRI's, CAT scans, brain scans, biopsies, doctors upon doctors, orthopedic surgeons, ENT's, Endocrinologists, Neurologists, Neurological Pain Specialists, Physical Therapists, several times a week, just pleading for some kind of relief.

Someone, anyone, please help me.. please! I can't take this anymore!! :'(

Steroid packs, steroid injections, physical therapy, Ultram, Vicodin, Lyrica, Gabapentin, Flexeril, Amrix... nothing is working! :'(

Dilaudid, Morphine injections and Percocet.. Aaahhhhhh, a little relief.. a little sleep.. finally! But, these are all very strong opiates.. Very strong, very addictive, opiates. Today, writing this, is my 10th week of pain, and several weeks on the opiates. I'm probably addicted by now, but all of my doctors agree.. this is my best and last option.

After weeks of just trying to find some relief.. and of my condition getting worse each time I see my neurologist. I'm cramping, I'm getting pulled over, to the side. It's like having one giant leg cramp, from the back of my head down to my waist. It's very, very painful, and very, very disabling.

I am slowly figuring things out.. slowly.. how to lay down just right, just in the very precise position to not put any extra strain on any of the cramped muscles.. the muscles that have taken over my body. I've learned that I cannot drive, I cannot turn to look to the left at all and I have about 10 degrees of motion turning my head to the right, I've learned that because the toilet paper holder is on the left side of the toilet... I can no longer reach it.. the cramping muscles won't let me stretch that far in that direction. I've learned that I cannot pickup my baby nephew.. my cramping muscles won't let me hold both arms out in front of me anymore. I've learned that I need to buy a lot more drinking straws... my cramping muscles won't let me lean my head back to drink from a cup.. or lean back to gargle with mouthwash.

A lot is changing.. I'm scared. My family is scared.

Superbowl Monday!

So, here it is... February 6th, 2012.

Monday morning, the day after the Superbowl, I unexpectedly woke in horrible pain, unable to turn my head or move my neck, from my shoulders to my skull.

I seem to be paralyzed and am in excruciating pain!!

OMG?!?! WTF!?!?!?! What the hell is happening to me!!??

I haven't done anything unusual.. yesterday was a great day with the family watching the Superbowl.. watched my daughter play some volleyball in the morning, stopped and picked up munchies and drinks, hung out at the park in the afternoon, and later, sat cheering, in front of the TV, eating chicken wings and pizza. Nothing unusual! Nothing life changing!

So, what the hell is happening to me?!?!?