"Rescue" packs

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Hi Everybody!!!! My name is Rick:einstein::einstein:
Like the sign says, I'm new here. Let me introduce myself and
let you know what I am thinking.
I have Secondarily Generalized Complex Partial. Been this way
for the better part of four decades. I would have written sooner, but I had a bad weekend.
Let's talk about my 'actions'.
It starts with the typical 'absence'; missing bits and pieces, and it
could last for up to eight hours or more if I don't push it.
Must take it easy, no stress. But even so, sometimes I'm not so
lucky. Grand Mal
The last episode ,(i hate the 's' word), was caused by a switch
to generics, which I was finally able to reverse.
Some people tell me the period preceeding is an "Aura", But
their definition of an aura seems to have a lot of symptoms I
have never had. I don't have any psychic phenomenae, no rubbing
parts of my body,no 'lights', no smells. Just this constant
intermittent reality. The kind where you want to sit down, and
stay there. You're walking on the edge---literally. No sense in
talking, cant' hold a conversation.
The best I can figure, the aura I am feeling is the 'partial'
section...before it goes generalized. It seems that there should
be a way to stop the 'spike and wave' or contributing 'theta'
formations before disaster strikes. Until I find some way to
exercise my ability to control.... there's not much choice.
Ever heard of a 'brainmaster'?? That's for another conversation.
According to the American Academy of Neurology, in the process
of treatment for Status Epilepticus,(yes, it has happened),
there are 'rescue' medications available [For use at home].
Liquid forms of Diazepam or Lorazepam of which 1 -2 ml. can be
dropped into the cheek pouch of the person suffering the attack.
This could very well be the way to stop all secondarily
generalized seizures!!! I know it doesn't seem too big a deal to
a Neurologist...I have inuqired as to their existence, and was
informed those are for the worst of the uncontrolled.
Just need those packs!!!
Well, it IS a big deal for me. ANYTHING to stop the formation of
a 's'.
What else is there, or how can I go about obtaining some of
these rescue packs if I can't get my neurologist to prescribe
them??
Seems like on my first post I am already going rogue.

Thank you for your time, I appreciate it.
RICK
 
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Meetz1064

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Have you

considered A) asking your primary care doctor to prescribe it or B) changing neuros?

Welcome to CWE.. I'm sure you're going to like it here............
 

Nakamova

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Howdy Rick --

Welcome to the site! It sounds like you would be interested in neurofeedback -- that is training your brain to avoid the "bad" brainwaves. You can search on the site for more information about this.

While Diazepam/Lorezapam may stop seizures after they start, it's much better to prevent them from happening in the first place if at all possible. Do you have a sense of what (if any) your seizure triggers might be? It's a good idea to keep a record, not just of your seizures, but also of other things that might affect them -- sleep, diet/metabolism, activity, etc.

Best,
Nakamova
 

Bernard

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Hi Rick, welcome to the forum. :hello:

... Until I find some way to
exercise my ability to control.... there's not much choice.
Ever heard of a 'brainmaster'?? That's for another conversation.
Yes, it's a neurofeedback system. My wife has used one.

... treatment for Status Epilepticus,(yes, it has happened),
there are 'rescue' medications available [For use at home].
I've not heard of the drops, but there are disposable syringes of Diazepam (and possibly Ativan?) that your doctor can prescribe to try and stop status clusters. This only works if you have someone near you who is capable to administer it.

Unfortunately, the Diazepam shots have never helped stop status clusters for my wife. I've tried it several times, but it doesn't do anything for her.
 

skillefer

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Hi Rick! Your neuro may not want to prescribe the emergency packs because for some people, if they use a medication for an extended period of time, the med can quit working. for example, I took depakote for years...and now it doesn't work for me at all. Had to switch to a different med. Also, it is best to try to prevent seizures. Not just pop an emergency pack when you feel a seizure coming on.
 
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Trigger

I have known my 'trigger' for years. Sleep deprivation...mainly the part about 'waking up'. I will elaborate later. Unfortunately there is no way to stop this from ever happening. Guess what...this is a side effect of Lamictal!!!! I just so happened to be taking Lamictal and Tegretol XR. Yes, I have tried the 'schedule' thing, and Neuro even has prescribed Diphenhydramine for those nights. Doesn't work.
You see, I think alot. I work on one problem at a time until I figure it out---then I move on to the next. I have solved many a problem this way. I have been exercising 'releasing' the concern. Sometimes it works and sometimes it doesn't.
Yes, I have looked at neurofeedback. Problem is coming up with the hardware. This is delicate machinery, (easy to get ripped off) when purchasing. Then comes the money....or is that the other way around??? I would already be doing it if there were equipment available.
I don't mean to shoot down any ideas, but I have thought about this too. Heavily.
Let's see, I predict a 'change of medication' will be the next suggestion!!!!
Don't misinterpret my cynicism. I appreciate all input.
I will be happy to consider any reasonable idea. That's why I'm here.

Thank you all!!!
RICK
 

tam bam

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Hi Rick,

I am new here as well. Gosh and I thought I have been suffering for a long time. 4 decades is a lot of time to be suffering that way. I know what you mean about your aura. I too have this type but not all the time. I do have different auras as well (some of the more typical ones). I used to get your kind of aura all the time. It feels as if you are there but not. You are kind of looking out on the world but don't feel like you are in your own skin. It is kind of crazy.

I too have had status epileptus as well. It happened for the first time a month ago. I do get the partial status epileptus all the time and they can last for days. Not sure if I should seek out a doctor when the partial one comes on. I hope you get some help soon. I took valium after my visit to the hospital but my family doctor didn't refill the script. My new neuro will not change my medication until he performs a new EEG, (had one already back in May and it didn't run long enough). I am now waiting for a new one but the hospital is full so I have to wait until the cows come home. LOL!

I hope you feel better soon.

tam bam
 

Nakamova

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Hey Rick --

Have you already tried going to see a neurofeedback practitioner, or is that not an option? I can see how having the equipment yourself would be great though. I've considered that too, for after I win the lottery...
 
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Lottery

Ha!!!!!!

If you don't play, you can't win!!!!!
Yeah, it's been a long road. Like I said, I have never spoken to another of my kind before, so this is a treat. I really appreciate the responses. I said i was going to elaborate----- here it goes....
I could stay awake all night, studying or something...No big deal....I could even stay awake ANOTHER night.....I feel a little bit like I'm tweaking, but I feel pretty stable nonetheless. Okay, here's the tricky part. Let's say I fell asleep the first night, and only slept 4 hours or so. I know instantly as soon as I wake up...theres going to be trouble. I will start spacing out any second. (absence)
I would like to add that sometimes, even if I got enough sleep, it has happened anyway. But the part about waking up is still involved.
It just happens to be combined with contributing circumstances. [Maximum Concentration / half-life] Sometimes this feeling is hard to identify, like if you get up early in the morning and have to report directly to work. No time to think. Find out when you're there. SCARY
When I was young, I was dropped to the floor right in the middle of the day, but THANK GOD that stopped. :clap:
What's up with that??? I feel good that there is nothing OBVIOUSLY WRONG with me, and I hope to stay that way. But this thing about 'waking up' is weird.
Ever heard of anything like that before??? Not bloody likely.

RICK
 
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Neurofeedback

Nakamova,

No, I have never seen one. It will be up to me to search until I am convinced I have exhausted all resources. I believe this would be the answer to my case. It is the control that I need. I may have to study other means of meditation, like yoga or something of that type. I have a general idea of what it would cost to take up that amount of time on an EEG. I think I will have to look towards another type of instrument----one more readily obtainable.

THANK YOU ALL, RICK
 

Crystal11

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Neuro or primary dr might just feel that the current medication is working accurately. Sometimes neuro will prescribe additional medication to help with cluster seizures. But I've also heard that rescue medications are only for people who have severe seizures and are not able to get help fast enough.

I definitely would talk to neuro and ask what other suggestions can be offered to you, or at least explain better why you may not be able to obtain the rescue meds..

Take care,
Crystal
 
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