29 April 2009
So. We've been talking with people on Narcolepsy/Cataplexy forums.....everyone seems to have the same response to "should my EEG show that I'm sleeping during Cataplexy?"
Everyone says no. These people have diagnosed narcolepsy/cataplexy. They know.
So. Still waiting but.
Bye for now,
26 April 2009
I absolutely loved it!!!
I'm so glad I was able to go. And I hope that next year, and a few more years after that I'll be able to go.
I promise I'll have pictures up as soon as we get them.
The only bad thing about the night was, I was tired. And it made it hard. I had to take a nap AT prom, and then I also had an episode while getting off the bus. It was one of the attacks where I couldn't move except my eyes. It sucked. But, I'm better now, just scraped up from falling and some bruises.
So. Yeah. GOOD TIMES.
24 April 2009
You see, my sleep study showed that I have no Narcolepsy. It also showed that I was awake during attacks of Cataplexy, or CD as the doctor now thinks.
Why does this post seem to be off to a bitter, bitter start? Well, it's for two reasons.
One, due to the doctor's words last week, that, "Without a doubt my symptoms were Cataplexy" I was hopeful. Desperately hopeful that after so long we had found the doctor who could help us get the care I need. Unfortunately, that's not true, and I feel it was wrong of the doctor to say that because it gave my parents and I false hope. Now some may say that maybe I shouldn't have believed it, but...I didn't think it was wrong to take that and HOPE.
Two, the doctor showed a lack of knowledge on Cataplexy, Conversion Disorder, and my medical history, none of which impress me.
I'd like to quote this article for some info.
"The sudden loss of muscle tone in cataplexy is similar to rapid eye movement (REM) -associated muscle atonia during sleep , but it is occurring during wakefulness."
"A cataplectic attack is sudden in onset and is localized to a specific muscle group or parts of the body. The subject is lucid during this attack and it is important to recognize that consciousness is always maintained at the onset of cataplexy. "
Both of these pieces state that the person with Cataplexy remains awake during the attack. It does say in the article that if an attack progresses to further loss of muscle tone and longer periods, then the person may experience sleepiness, REM sleep, and hallucinations. I won't fight the doctor there, as I have experienced all those things during long attacks. I've even gone through a full night still in an attack. We know this because "the onset of cataplexy is associated with the absence of deep tendon reflexes that comes back with the return of normal muscle tone. This is a simple test that differentiates cataplexy from other drop-attacks."
And I've had multiple doctors/EMS/other people note that I have no deep-tendon reflex during an episode. That's not something you can make go away people.
Here again, it states that people do not loose consciousness during an episode of Cataplexy, they simply cannot move.
I'm bringing up all this info because the doctor said there were two reasons I didn't, couldn't have Cataplexy.
Because I stayed awake during the episode, and because I didn't loose full muscle tone.
They tested this not while I was in an attack, but as I was coming around from one. The tech captured on video me coming out of the attack, and when she put my arm over my head and let it fall, I pulled my arm from my face.
This drop test is a good way to see if someone has control over their movements, because your body won't let your arm hit your face. The only way it will hit your face is A) Your muscle tone is compromised somehow; either your unconscious or you can't control your muscles, or B) You purposely let it hit your face.
Well, at that point when she did the drop test, I did have minor control over my muscles again, in fact I was trying to talk to her. So no, my arm didn't hit my face. However, if you do it while I'm actually in the attack, it'll hit my face, or head, or something. I've gotten bruised lips and eyes from my hand hitting my face, because I couldn't pull it away.
Now Conversion Disorder is the new answer. This brings me to my other two problems with the doc. If she had read my history, she would know that a diagnosis of Conversion Disorder was made last year and ruled out. Their advice? Start seeing a psychiatrist.
I've been seeing one since June. He happens to be the one that made that diagnosis of Conversion Disorder last year. He was also the one who revoked it!
So why are we going back to this?
These are the criteria for making a diagnosis of Conversion Disorder taken from this site.
"Diagnostic criteria for conversion disorder as defined in the DSM-IV are as follows:
- One or more symptoms or deficits are present that affect voluntary motor or sensory function that suggest a neurological or other general medical condition.
- Psychological factors are judged to be associated with the symptom or deficit because conflicts or other stressors precede the initiation or exacerbation of the symptom or deficit.
- The symptom or deficit is not intentionally produced or feigned (as in factitious disorder or malingering).
- The symptom or deficit, after appropriate investigation, cannot be explained fully by a general medical condition, the direct effects of a substance, or as a culturally sanctioned behavior or experience.
- The symptom or deficit causes clinically significant distress or impairment in social, occupational, or other important areas of functioning or warrants medical evaluation.
- The symptom or deficit is not limited to pain or sexual dysfunction, does not occur exclusively during the course of somatization disorder, and is not better accounted for by another mental disorder.
According to learning theory, conversion disorder symptoms are a learned maladaptive response to stress. Patients achieve secondary gain by avoiding activities that are particularly offensive to them, thereby gaining support from family and friends, which otherwise may not be offered."
Let's recap why he ruled it out.
-The attacks do affect my voluntary motor function, but also my involuntary motor function, i.e. deep-tendon reflex.
-The ONLY prior trauma the doctors have that precede the initiation or exacerbation of the symptoms is me watching my dad burn when I was 4. Yes, it was mental and emotionally scarring. Yes, I still have nightmares.
Do I pass out if in a TV show a guy is on fire and then my family pays attention to me where normally they wouldn't? No. So how does it fit?
"True conversion reaction is rare. Predisposing factors include extreme psychosocial stress, and perhaps, rural upbringing."
It doesn't fit.
So now....now we wait. We start looking elsewhere.
I firmly believe that Cataplexy is the best fit, the best condition that explains my symptoms. I'm not saying this because I don't like the diagnosis of Conversion Disorder. I even like it better! It means that Ash won't have these issues. It means that it should've been fixed. But it wasn't.
If a doctor were to say, "You know, I really don't think this is Cataplexy, and here's why, and this condition really does fit better," and then I follow treatment plans and suddenly I'm improving like I should, then COOL!
But if we go back to CD, then we're back to going nowhere. And BTW I am staying on the treatment for Cataplexy. Want to know why? It's working!
And so we keep looking until we find a doctor that has knowledge on the subject, and that can give us an answer.
Bye for now,
20 April 2009
It seems to have gone well in the sense that I didn't sleep solidly through the night and I managed to fall asleep at every nap opportunity, which are both positive indicators of Narcolepsy.
So, good, bad, whatever you want to call it.
And during my last nap while Mom was bringing stuff down to the car, she met this lady in the elevator.
So Lady had two Italian Greyhounds and two little children. One was Autistic, the other had a dog as a companion animal for an undisclosed reason. Since we've been trying to find SOMEONE who will help us get a service dog, even trained just to stay with me during an episode for comfort and pick up things while I'm in my chair, Mom inquired as to where Lady got the dogs. The Lady informed Mom that she herself had trained them, and had trained multiple other service dogs in the past.
Well, so that was cool. Even cooler was the Lady's understanding of the difficulty finding an affordable organization that ALSO provides the services you need AND will work in your age group. So she being the angel she was, she dug a notepad out of her purse, gave my mom her name and number, and told mom that when we were ready to train, to contact her.
She is willing to help us train our own service dog. Of course we'll pay her, but I doubt the fees will be $15,000 plus travel, room, and food. And yearly checkups, and and and.
So. Yes, good day indeed. I even have a cup of coffee. This day just keeps getting better!
17 April 2009
A rough 7 days.
So Saturday was actually really really good. I didn't have any of the full body attacks, but I did have two minor localized attacks. I also got to go out with Ms. E for coffee which was nice.
Sunday was okay until about 6 o'clock, when I woke up from my evening nap. I couldn't move my legs, so I had to use the chair until bedtime.
Monday. Wow, Monday was rough. So when I woke up, I was starting into a full body attack.
Brandon and Tori were home, but it was rough to say the least. That one lasted until probably 2?
Then around 2:30-ish I had a fugue state, left the house, wandered, and collapsed into another full body attack. I was taken to MB, and was there for another 9 hour trip. We got home at like...11?
Tuesday was....okay-ish. I think. I don't remember what happened Tuesday. Mostly recovering form the long attacks, relaxing strained muscles, and such.
Wednesday was good. I moved back down to the 10's which has been the right choice. I went with Bro to go get his trailer so he could go get his new car, then home. Then sleep. lol.
Thursday was a grand day. So first, I had my appointment with the sleep clinic in Bellevue.Everything about it was awesome, except the part where they had daddy make me go out. That sucked a little.
But they listened to us. Actually listened. Sat for 2 hours and listened in fact. The NP, who seems to be our main caregiver and the person we'll be interacting with, was so nice.
After she was done with an extensive history, she called the doctor right away.
Without even two sentences apparently the doctor confirmed what we've know for quite some time. She said without a doubt my symptoms were Cataplexy.
Then, because of a miraculous cancellation, I was able to be scheduled for a sleep study on Sunday, otherwise their next available spot is SEPTEMBER.
Wow, Wow, Wow,
The doctor also said she'd be willing to try a drug called Xyrem. It's main ingredient is GHB. But, it's shown great success treating people who have Cataplexy/Narcolepsy. It basically knocks you out so you get great sleep, then you don't have the same issues in the daytime. Right now, if I miss a nap I have a worse time controlling the attacks, because I'm more susceptible to emotional triggers. Part of the reason I need naps during the day is because I don't sleep well during the night. So if we do try this hopefully it will be the right treatment.
And then Mom, Dad, Tori and I went to Seattle so Dad could finish something at work. Mom and Tori and I got coffee then wandered. Then we went to the marketplace across the street and wandered. Then came home.
And we also found out last week that insurance will cover a rigid frame chair up to 90% up to $1,000 dollars. So if the chair is $1,300, they'll cover $900 of it and we have to cover the rest. Which still isn't bad, because that brings the price of a rigid frame chair from $1,300 to $400 so.
Yeah. Lots of good lately to compensate for the bad.
Bye for now,
10 April 2009
It's been very frustrating. I'm still trying to regain function in my legs, and am currently getting around the house in my chair.
I hope these episodes stop soon. They're terrifying, and I have no control over what happens when I'm in them. Last night I was sooo tired that I couldn't stop laughing, and the slightest thing was funny. The problem then was that it would make me go further out.
Do you know how hard it is to communicate that I want my ponytail holder taken out with nothing but blinks? Almost as hard as asking what time it is.
I'm praying for recovery to come soon. This is really hard on everyone, especially my family.
08 April 2009
Well, that was an interesting last.....9 hours.
I got out of the ER not too long ago, after spending the day there.
Around 7:25 this morning, I started slipping into an attack. And, I could feel it happening....my legs gave out, I called for the nurse, then everything but my eyes were too weak for me to move. I don't know how long I lay there trying to talk with my eyes before my brother got there, then my mom came too. They were able to get me in my chair, and then once they got me outside, they resorted to calling 911 so the fire fighters could transport me.
I couldn't do ANYTHING. I was trying and I couldn't move. It was completely terrifying.
The fire fighters got me into the van, and my mom and Tori took me to the ER. I was having a hard time breathing/swallowing. When we got there I was put on a gurney, full monitors (heart rate, blood pressure, respiratory rate, pulse Ox, CO2) and oxygen, and put in a room.
The next...5 hours? were spent trying to communicate by blinking, which by the way is VERY frustrating. Plus dealing with things being done without me being able to move at all.
Then over the last 4 hours I gradually got back muscle tone in my mouth, then arms, then finally legs. But it was long, and very frustrating, and very terrifying.
Now I'm home....no school tomorrow, in fact, I don't know when I'll be going back to school. I need to get my attacks under control...I don't know.
So. I'm going to rest and sleep and nap then rest some more =)
06 April 2009
02 April 2009
I had an attack as I was being weighed and my height checked. Mom and Dad said the nurse kinda freaked out. I feel sucky for that. Especially because I can't control it. I had a harder time coming around, mostly because I was afraid.
Once all that was over, (I went out a few more times in my chair) I saw the doc. Mostly we just reviewed everything. Then he referred us to a sleep doctor within the system which was AWESOME. Cataplexy is a SLEEP DISORDER. I've seen 6 neurologists at Mary Bridge and although a sleep specialist has been discussed, no one has actually referred us. So this is good.
So. AND, I just got an email from Summit, which is an assistance dog organization in Washington State, so it might be a good option for us!