Here’s hoping…

I have an appointment to see the neurologist tomorrow morning, and Mr S and Doctor H have said he will want to witness one of the episodes/seizures.

I’ve been slowly reducing the dosage of my medications. Today, I have only had the one dose for the morning. My leg feels so heavy, twitchy, sore, and not quite under my control. Sometimes it feels like it’s right on the verge of seizing up.

No night dose. Not sure if I’ll get woken up by a seizure or not. Trying to not think about it.

Tomorrow, as I typed, I see neurologist.  I know there are certain things that has triggered an episode, and I know Dr G is going to want to see it up close. 

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Excelsior. RIP Stan Lee

Stan Lee, Marvel Comics’ Real-Life Superhero, Dies at 95

The feisty writer, editor and publisher was responsible for such iconic characters as Spider-Man, the X-Men, Thor, Iron Man, Black Panther and the Fantastic Four — ’nuff said.

Stan Lee, the legendary writer, editor and publisher of Marvel Comics whose fantabulous but flawed creations made him a real-life superhero to comic book lovers everywhere, has died. He was 95.

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Just finished up home visit from Neurocare services


We now have a proper name for what is wrong: Functional Neurological Disorder.  It’s not all in my head, I’m not making it up.

FDN is as common as MS and Parkinson’s with similar levels of disability and impairments with quality of life, but they don’t involve the brain.  FND with me presents with: weakness, sensory changes, movement disorders, seizures, gait and balance difficulties, chronic pain, sleep disturbances.

To put it bluntly, I’m a mess.  But a fixable mess. After giving her the traumatic/stress filled* events I’ve had just in the past 5 years alone, it’s a wonder my body didn’t rebel earlier.

Having to be brutally honest about things goes against how I was raised.  It was “If asked, don’t tell”.  No joke.  To discuss thing that I had kept deliberately buried, had me in tears. Not of shame of what happened, but shame for TELLING someone.  Go figure!


*those in the know know what a shit storm it’s been.

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People keep asking me how I feel

I really don’t know how to answer it without worrying people.

I go to bed terrified that I will be woken up in the middle of the night, having a dystonic seizure just from trying to get into a comfortable position. I’m afraid that if I roll out of bed, putting my feet to the floor a seizure will start.

I, who used to be able to walk for hours, can barely walk for 15 minutes.  When I walk in public or in the house, I am unsteady on my feet. 

I used to be able to heft Canon body, with the 100-400mm lens on all day photowalks.  Now, I can barely lift the rig for 5 minutes

Cooking?  I can get a bowl of cereal ready, using to hands like a 10 year old.  Boiling water, using sharp knives around someone who could have a seizure?

I feel useless. I still get to do the ‘dirty jobs’ (the cats litter boxes) and can manage laundry if hung up on inside rack.

The medications:  The hardest thing is staying awake. I feel as if I’m in a perpetual  drowse.

Depressed?  Yeah.. you could say that.

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Where to begin

After a week of the proscribed medications, I was still having the dystonia seizures. I can’t describe how it feels to have your body trying to force itself into geometrical angles where there shouldn’t be.

I did what I was instructed to do, I went back to the Emergency Department (why? Because the soonest I could get to see a Neurologists is December 12th)

While waiting to see a doctor, I had a seizure.  My son, and a ward nurse were there to help immediately. After waiting another hour, I got to see a doctor.  Or should I say he brusquely spoke to me.  Then he left, saying he was getting some information for me.

While I was waiting, I was asked if I could move to the ambulatory waiting room, as they were swamped.  No problem.  Alan and I went there, each of us sitting in a chair waiting.  The doctor showed up, and asked us to follow him. I stood up, took three steps and started having another seizure.  The ‘doctor’ saw what was happening, said “Oh, I’ll be back when when you’re finished.” and walked off and left me there, in extreme pain, with my son preventing me from falling to the floor.  After the seizure was over, my heart was racing, and I was gasping for air. 

The ‘doctor’ showed up and gestured for us to follow him, and then disappeared again.  I presumed he was getting me information.

He was. He handed me a fucking POST-IT note with a web address.  And then he just walked away.

Wing  and I had a conference call with two friend, filling in some of the details of the useless visit to Fiona Stanley Hospital.

Yes, I had a seizure while waiting to be seen, but I also had another one when the doctor asked me to follow him, and when he saw what was happening, he said “I’ll be back when you’re done.” No offer of assistance, help not even a comment. He just walked off. If it hadn’t been for Alan, my son, I would have landed on the floor.

This is NOT acceptable behavior, and Wing, Daryl, and Meegan said I should lodge a complaint.

So, I have lodged a complaint against the ‘doctor’ that was treating me, watched me having a seizure and said “I’ll be back when you’re finished’. Person taking the complaint said that behavior was unprofessional and unacceptable.

Complaint has been written up, and filed. Maybe he will learn to be a bit more empathetic.
I still don’t feel any better. If anything, emotionally, I feel worse.

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Visit to the GP.

After a lengthy discussion, and some pointed questions, a course of action has been set up.
As it’s not the brain, but nerve pain, I don’t have to ditch other medication, but it will be shelved for a while.

For now, I am on a regimen of Lorazepam and magnesium. I might end up a bit groggy, or in need of a nap on occasion, but you know something, i can live with that. 

Within an hour from taking the first dose, I noticed that the tingling and tightening feeling had faded, and two hours later, I took a nap. AND I didn’t have an seizure/episode when I changed position or got up.

2nd dose will be later this afternoon. And if I sleep through the night, fine. If not, the next day take one lorazepam prior to going to sleep.

Will be on this protocol for 4 weeks.

After this, I will be seeing a counselor, along with the medication, because stress, lack of sleep, and a few other non-neurological/brain issues can cause dystonia.  

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Dear Fuq Up Fairy, find someone else to bother, please?

About two weeks ago, I woke up with what I thought was just a bad cramp/charley horse, from my right foot, straight up to my right hand. The pain was intense. My foot arced and the toes curled, and my fingers dug into the palm of my hands.  As I was ‘stuck’ in one position by closely snuggling cats, I thought it was just because I was in one position for too long. 

Then, 5 days later,  it happened twice. Once when I got out of bed, and the second time when I was walking out to the car.

Two days later, Monday, it happened 4 times.  I called GP, and was informed I would be told to go to the ED/ER, so I called a cab.  Had another ‘cramp’ before the cab arrived, and another when the cab dropped me off at the hospital. The ED doctor got to witness one of the ‘episodes’, and I was admitted to the Neuroscience wing of the hospital for a possible seizure disorder.

Four days, lots of blood tests, (geeze, people how many times do I and the tests have to tell you that I am NOT diabetic!) a CAT scan, an MRI, and having the daytime floor staff seeing a ‘seizure’,  I was hooked up to an EEG and a seizure was recorded and videoed.

The goodish news: Dr B, the neurologist, told me I don’t have any tumors, lesions, clots. Nor do I have any signs of Parkinsons, Alzheimer’s, or other degenerative brain disease. EEG didn’t record any epilepsy or other seizure disorder.

What I do have i ‘idiopathic hemidystonia’.  Something, for whatever reason, is causing these seizures-not-seizures. It’s my brains’ way of handling.. something. They are painful, and outright frightening. That feeling of loss of control is terrifying.  But I remain alert, aware, and even during them, if given a phrase or question, I can answer it or repeat it back.

There is also this wonderful (sarcasm there) kenetic component. In other words, certain body movements can bring one on. (Example, after reflex testing in both the ED and my hospital room, getting up and sitting back down would cause one) I’ve been having a few every day since being discharged from the hospital.

As awful as these are, they aren’t life threatening, so I was allowed to go home. I made an appointment to see my GP, to see what the next step should be.

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