New and would like opinions please

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I tried posting in a different epilepsy forum but all they gave me were facts I already knew, instead of giving me their personal opinions which is what I need and want. Thank you for reading this (it's going to be pretty long)!

About four years ago, I was 13, I had a "fit". My head became fuzzy, my hearing went from fuzzy to completely going out, and I went in and out of consciousness. I didn't think anything of it, even after I had my first seizure, so no doctors were told of it. About 5 to 6 months later, I was turning 14, I had a complete seizure. My head became fuzzy, my hearing went from fuzzy to going out, and I completely lost consciousness. I was told that my body went completely stiff and woke up to my mother and trainer (I was riding a horse at the time) trying to pull me off the horse but my grip on the saddle was too firm. I went to a neurologist and had many tests done. The EEG was not sleep deprived and the results were normal. I also had an MRI which showed that the veins in my brain tangled to make a web when I was being formed in the womb. The doctor said this wouldn't cause any issues, so the seizure had no apparent cause. My doctor told me it would only be a one time thing so I was put on some medication for a week then sent on my way.
Now I just had a seizure about two days ago. This one was slightly different, it began the same but instead of going stiff I went completely limp and my left side went limp before I completely lost consciousness. A few hours before that happened my right leg started twitching enough to really bother me, my muscles never twitch. I went to my normal doctor and he gave me an urgent referral to a neurologist so I have an appointment in 20 days and I will have a sleep deprived EEG done. 20 days seems like forever to wait, so I would like some opinions as to if you guys think I will get diagnosed with epilepsy or just get sent away again. I half want to be diagnosed just so I will know what's wrong with me, not knowing is the worst part of all of this. Thank you so much for reading this! I'm sorry if it isn't really in the right place or is too long, I just want some personal opinions and to know I'm not crazy! Thanks!
 
Hi, and welcome to CWE!
First off, you are definitely not crazy :) People don't just suddenly lose consciousness for no reason, plus the symptoms you have preceding the loss of consciousness are strongly suggestive of some kind of neural or neural-muscular issue. They could be seizures, but the brain and rest of the nervous system are very complex and many disorders seem to have very similar symptoms. Here is a site that discusses some of these "epilepsy imitators". https://www.epilepsydiagnosis.org/epilepsy-imitators.html

A sleep deprived EEG may provide answers, but could still be normal. The next step might end up being an in-patient video EEG so that recordings are being made 24/7 and over a longer period of time in hopes that you will have one of your episodes while in the hospital so it can be observed and recorded.

I know 3 weeks seems like forever, but as best you can hang in there and return here to ask more questions and for support. There are lots of great people here!
 
I doubt that this is going to be very helpful, but I had my second seizure 6 monyhs after my first ( because unlike you I refused to take meds, yes stupid, unintelligent I know)
But after the second seizure I didn't have a choice BUT my neurologist made out "if you don't have a seizure fot 3 years we'll take you off the meds, and if you're seizure free with no meds for an additional 2 years, you'll no longer be classed as epileptic"
So I was like 5 years is a long time but let's do this.
Two years later I had my third (fail) still on meds, so they were inceeased, had my fourth 6 weeks later, but nothing major since. So I was pretty wtf and asked my neurologist what's going o, and dod a bit of research so what can happen is if you have changes in your life and or body be it stress, weight, changes im your lifestyle etc etc or just plain time, it can effect how your body breaks down the meds, so it may become "used to it" or maybe it's just not enough because your body weight is more or maybe it just become more efficient, get what I mean? Lol sorry for the massive reply, a please take it with a pinch of salt because it seems to be that our brains and what and why they do it is still very much so guess work ;) good luck
 
Welcome to CWE,

If you were crazy, your post wouldn't of been so clear, it would be a bunch of gibberish. :) So, no, you are not crazy!!

Don't be frustrated, since the epilepsy world we live in is not an exact science, unlike math there is no clear and precise answer. One has to work with the docs to find the best solution for you and sometimes you have to direct your doc to that solution. And yes, if the medication is not working, then move on to another medication, or up the dosage, which is the first thing they like to do. Just watch out for the side effects and if they are uncomfortable, make sure to let them know.

Sounds like you had an Aura right before your last seizure. Which is a God sent, that way you know when to get prepared, for one.

Good luck with your doc visit, and make sure you have things documented, so you can tell him/her everything that happened. Keep a journal, check for patterns.

Cheers,


:piano: :pop:
 
I don't know if you've been told all of these things or not but hopefully it will give you some help.

Keep a journal. Keep track of your seizures - When they happened. If you had any sort of unusual feelings or other things like the shaking before hand. How long they lasted. What you did during the seizure - blacked out, got dizzy, went limp, shook, drooled and things like that. How you felt after the seizure, some people are very tired and can have headaches. If you are female and they happened during your time of the month.

If there's anything else that you may think important or would like to ask your dr about write it down too because if you're like me you'll forget about it when you see him.

Being tired and stress are two triggers for a lot of people, they are for me. I'm almost guarantied to have a seizure when these things are happening. Too much caffeine is another trigger for people.

If you start to have any of those 'aura' feelings try to sit down somewhere so if you do have a seizure you won't fall or do something else that could hurt you. If you are with someone it would be a good idea to let them know.

During my auras I may have trouble thinking strait. I won't know what the right words are to say when I'm talking. At times I my vision will get slightly blurry. Sometimes my lips, feet, legs or arms could tingle. Not all of them at the same time it's usually only one or two of them that do.

A good bit of times during a seizure if I'm holding onto something I don't want to let go of it. My husband has tried to pry it out of my hands but will just give up and let me have it until I come out of the seizure.

20 days does seem like a long time and it's frustrating to have to wait. You might want to give the drs office a call every so often to see if there's an opening and if you could possibly get in earlier.

But after the second seizure I didn't have a choice BUT my neurologist made out "if you don't have a seizure fot 3 years we'll take you off the meds, and if you're seizure free with no meds for an additional 2 years, you'll no longer be classed as epileptic"

Even if you go for years without a seizure one you have epilepsy you will always have it. It's not something like a cold that goes away after a while. My husband's dad has gone over 20 years without a seizure and doesn't take any meds but he still has epilepsy.
 
Thanks for the replies! I just recently got my doctor reports from 2011 and it turns out they diagnosed me with generalized convulsive epilepsy then but since it was only one attack that they knew of I wasn't put on any lasting medication. I guess now I have to wait and see if they put me on medication now, wish me luck!
 
thanks for the welcome does anyone know if when im taking lamotrigine (but have only had 3 seizures in 5yrs)
 
Three shouldn't be any conflict between Lamotrigine and dermal fillers, but it never hurts to ask your neuro just to be on the safe side.
 
To youngandfrustrated, you mentioned that all you were receiving were facts that you already knew - I know what you mean. I have written an account of what I felt like over the years when the seizures would occur.
Read my story, and see if you can relate in any way. The reason I have written it is to help people out there who may be going through the same thing and have questions. I hope it helps in some way - it's just my view of what happened and how I went from denial to acceptance, to even thankfulness for this condition.
 
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