the new year......

we are only 10 days inyo the year & i've already attended a funeral of my favourite aunty
i nearly called off going as it upset me so much.  my aunty really meant a great deal to me
so it's gonna be hard on me when memories fade; as they all do it really sucks though my
aunty wilma was around for an amazing 86 years.  i'm guessing she touched many peoples
hearts believe it or notshe fostered over 60 children in her lifetime now isn't that truly remarkable
  • Current Music
    you raise me up

Pre-trial Survey Testing Candidates Wanted

If anyone is interested in helping create a survey for epilepsy quality of life by completing
a survey intended for a clinical trial with 'mock' answers, then express your thoughts on how well worded the survey is and whether it is easy to understand, comment that you are interested. The researcher is based in Brisbane, but you could probably skype.

It is a fairly straight forward process, does not require any personal health information (just basic demographics - age, level of education etc). I just did it to help with epilepsy awareness, although there is a small cash incentive for your time that people mostly aren't terribly worried about.

The researcher is coming close to deadline, and is finding it harder to find us than anticipated. A lot of epileptics don't use support services, and don't know other epileptics, because we tend to not advertise it if we can help it.

I thought it was kinda fun. I like quizzes.
cockatoo, bird, white

Feeling Fucked up

I think I had a major seizure Wednesday morning.

I had all the symptoms of one when I woke up: confusion, migraine, "pins and needles" sensation all over my skull, and bits of my language and memory seemed to be missing. I've had periods of brain fog for the last few days, and deep feelings of depression. I may have fucked up by confusingly making comments over in an LJ community  (which I've now left) because certain words just weren't there for me. I realised something was very wrong yesterday when I couldn't remember my mother's middle name (it's Jacqueline).

Felt a lot lot better this morning. Thing is, this isn't the first time this has happened recently. At the end of May I was getting obsessive-compulsive over a silly issue regarding a local mailing list (people were only mailing minutes as Word attachments), and stressing out, and having similar symptoms, only I was afraid to post about most of them here.

Feeling fucked right now. This morning I'm going to an in-world meeting of gimpgirl in Second Life. Just as well I guess.

  • Current Mood
    depressed depressed
cockatoo, bird, white

Migraines and Fugue

In the past week I've been having "episodes" - periods where my ability to read/write text is impaired, I start losing facial recognition, and 3D vision goes partly to 2D. Most of the time it's been after using my computer, and looking at monitor, for any length of time. Like the migraines I had a month ago, when I started seeing a crystalline type rainbow on one part of my vision, I find this really disturbing.

I've also been feeling dizzy off and on and sometimes getting a metallic taste in my mouth. I just don't know what to make of all this. Is it all "just" migraines? What's causing it? There have been a few stress points of late and I was also starting to fall into a depressive trough - is it all just stress? I haven't been able to draw any comics for a week, though I may try drawing something about this problem today (maybe put it in comicdiaries).

I'm off to see my dietician tomorrow, and am thinking of seeing a new GP. I no longer have a endocrinologist for my HRT and my current one has been substituting for one, for all I know these are all connected. Last night after I went to a Birthday Bash, it was suggested that my being overweight and/or diet may be a contributing cause to this.

Some thoughts please.

  • Current Mood
    weird weird

Cross Your Fingers and Your Toes....

So I have sent a letter of concern to the ER nursing director, the hospital's "Quality Services", the Ombudsman, and the Epilepsy Foundation of Vermont since New Hampshire doesnt have its own office, and Vermont is probably the closest. I'm feeling uneasy because that may be going overboard, but I stated in the letter that I wanted to file a complaint with the weight of seriousness the matter requires, so that they review and change their practices. I'm also uneasy because I claimed it was "unconscionable" for them to have yelled: "Anastasia you're too heavy! You're going to hurt somebody!" when they lifted me up during my seizure and demanded that I walk to the gurney but I couldnt move my they had to carry me. (They shouldnt have lifted me during a seizure in the first place, in the air, not to a lying position). True as it may be, it might constitute as libel. The terms of my complaint were basically that I wanted these practices reviewed and for them to seek out training on the proper treatment for those with epilepsy.

This is an important issue. Though my own case had mild consequences, there have been deaths and lawsuits regarding the lack of knowledge and misguided practices of "first responders" in the treatment of someone who is having a seizure. This simply has to be reversed.

emergency room care for seizures

"I'm mad as hell and I'm not going to take it anymore..."

I dont have a clue if my experiences are similar to anyone else's, anyone else at all, in my region, in my state, in the USA, in the world, etc.
I think it would be a good idea if I found out.

I know for sure that I have been incompetently treated in the emergency room when in for seizures. I really think its mostly a matter of the nursing staff not having a clue what to do. Seizures are scary for those who have them, but perhaps more so for those who have no idea what its like and how it works. I sympathize, however, these people are supposed to be PROFESSIONAL CAREGIVERS.
My complaints are as follows, just from my visit today:

1. I was beginning to seize and they asked me to sign a form. The effort to try and sign the form brought on the full blown seizure. And my signature ended up taking up the whole page. Totally unuseable.
2. I was in the midst of a full blown seizure and they were asking me to do things like move my arm over here, etc.
3. They hauled me out of the wheel chair during my seizure and then screamed at me "You're too heavy! You are going to hurt somebody!" when I couldnt walk to the stretcher.
4. At no time did anyone even after the seizure and everything had calmed down did they show me where the call button was. I held my urine for over an hour waiting to ask someone to go (in case they needed a urine sample), ended up ripping electrodes off myself so I could get up and go to the nurses' station to ask. The nurse said yes. Within 1/2 an hour a nurse came and told me they needed a urine sample. I told her about having already gone and that I had no call button.
She said that a urine sample was what the doctor had been waiting for, and this was the same nurse who told me I could go before. I told her I had no call button. She hauled one out from behind some drawers and wires and left without a word.
5. People turned on and off my light without saying a word to me.
6. When they were taking me to get a CT scan the nurses talked to each other as if I wasnt there...the only thing they said to me was, as if I was 2 years old, "the doctor wants to look at your head now" as her way of informing me we arrived at the radiology department.
7. Four times I requested my family to be with me, to which they said that they were going out to tell them come in. The nurses never approached my family, even though they were in the waiting room. The time my Mom asked to see me, they claimed that the doc didnt want me to have any extra stimulis. The only way I got my Mom in was to catch someone coming in the door visiting someone else.
8. When I get myself up to go to the bathroom, my bed tipped at the end I got up from because the side bars were up and had been up for 3 hours even though I had not had any seizure activity during those three hours, and I could not put them down. I believe thats actually considered an illegal restraint.

I understand the necessity of ascertaining whats happening with the physicality of the person having a seizure, but moving and asking them to walk themselves I think is a gross misunderstanding of whats going on with someone having a seizure.
I think a little respect for an epileptic's dignity and humanity is also a necessary improvement.

I would like to know if others have similar experiences or tips on re-educating hospital care staff, to facilitate activism to remedy this problem.

Fits after stroke

My husband is in his late 50's and in january had a severe stroke. He is so lucky to have recovered with no motion or balance problems but he has right frontal lobe damage which causes problems with cognitive function. Out of the blue, 2 weeks ago, he had tonic-clonic seizure and they now tell me that approx 15% of people that suffer strokes in this area end up having seizures. I am really annoyed that we were not imformed of this earlier. So now he is on 1000mg epilim daily and we are waiting on the first blood tests. He hasn't had another tonic-clonic but has been having clonic activity in his legs at night which he sleeps through but I don't.

Is there anyone out there that has a similar problem that I could talk to about this. I have now found I can learn a lot more by looking at the net than the Doctors seem to tell you.

Whoever said that ignorance is bliss has never been in a situation like this.
  • Current Mood
    curious curious
Doom Song!

Levitiracetam Theories.

Is there anyone around that is on Levitiracetam?

I'm on that at the 3000mg limit (plus Carbamazepine and Gabapentin) and have current brain issues, which include memory troubles, forgetfulness and an unfocused mind in general(most of the time).
(Usually I'm fine, so my best guess is my brain is revolting against the levels, or just hates the mix in general.)

Is there any record at all of memory issues with the drug?

If anyone can help out, it'd be VERY appreciated.