Hello, I am very new to all this

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SarahBU

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Hi everyone!:wave:
I am very new to the whole epilepsy thing. I am 31 years old, I was seeing my GP for migraines. I've only been getting treatment for those for about a year (I had a 4 day migraine and needed relief, so I wen to the doctor). Anyway, the doctor asked how long I've had migraines and I told him, Oh since I was about 15 years old. I always just muscled through them. Didn't realize it's not normal to get 4 major migraines a month and bunch of smaller ones too. So my GP sent me to see a neurologist...who starts asking all these crazy questions(well I thought they were crazy), I start answering yes, or saying...well when I was younger..... well a lot of things starting falling into place. So, I go to the neurologist for migraines...and find out I might have epilepsy....good god! I never would have thought. So I go for an MRI of my brain, have a sleep deprived EEG (that sucked!), and a whole bunch of blood work(to rule out strokes, I think). Anyway to keep the story going... my blood work came back fine, the sleep deprived EEG showed a bunch of little spikes in the brain waves and the MRI showed the my left temporal lobe is slightly smaller then the rest of brain(I've been joking to everyone that I am now an official pea brain, hehe:brain::roflmao:), the doctor thinks this may have something to do with my possible seizures, at this point who know!! So now I have to go for a 72 hour ambulatory EEG next week (very nervous). Seizures do run in my family, my mom and my mom's aunt have them. I guess the neurologist thinks I'm having "complex partial seizures". I zone out, but can still hear what is going on around me. Then sometimes when I wake up in the morning I am not able to move but I can open and close my eyes, I just can't yell-scream or do anything. Those have only happened 3 times in my life that I can think, but were scary(I thought maybe I was still sleeping and only thought I had woken up, but the neurologist said it may have been a seizure). OK that was my long story:pop::clap:
 
wow that's an interesting story!

Welcome to the group and I hope you enjoy it here.
 
Hi Sarah and welcome to the forum. I'm sure with all of this coming out of the blue, you're still just trying to take it all in. I wish you good luck and hope you are able to get everything under control.
 
Your story is almost identical to mine. I just thought I was having migraines to start with and started with my GP, then ended up having an MRI which showed some scarring on my right temporal lobe and also had abnormal spikes in my eeg. As I talked with the neurologist, I realized I had been having a lot of simple partial seizures that I was incorrectly identifying as migraine and some other odd episodes for years and years. I was diagnosed only a month ago and am 53. Oddly enough, since I have started on Depakote, I no longer wake up feeling horrible in the morning, have only had one headache and almost no more dizzy spells that I was getting several times a day. Welcome to the forum.
 
Forgot to mention also that when I have my complex partial seizures, I also am aware of what is going on around me and can hear people talking to me but can't respond or talk in any way.
 
OMG! I'm so happy you shared this with me. I thought I might possibly be nuts. I'm not happy you are going through this too, but it helps to know you've been through this. It's just all so crazy. My parents feel horrible, not realizing all these possible warning signs from when I was young. I keep telling them they couldn't possibly have known all this, it's not like I came with a owners manual! Besides the fact that I just found out that my mom has seizures(she hide this little bit of information from my sister and I). So now I just keep looking up all this information on the internet and then I find this amazing group here! When I'm looking up all the syptoms online.... I keep saying to myself....OMG I have that, and yes this has happened to me in the past, and then it's like no way that could be a syptom too.... you just don't think anything of some of the syptoms(like dejavue...I have it often....I thought everyone else did too...nope it's not normal the doctor says). Who would have thought... it's the only thing I keep saying to myself!
 
Hi Sarah! Welcome to CWE. As you can see, we're a friendly group. :) Feel free to ask questions, check out the library here, vent in the padded room when you need to, and check out the epilepsy 101 thread in my signature. It has some really good info. Also, you might want to start keeping a journal. Write down how many hours of sleep you get each night, what , how much, and when you eat, same with what you drink. Also jot down any odd feelings, migraines, etc...and any stress that you might be under. Some of us have particular things that trigger our seizures. The two most common are lack of sleep and stress. So try to keep an eye on those. Then take the journal in to the neurologist. See if there's a pattern. If there is, then you might need to make some lifestyle or dietary changes. But keep the doc in the loop. Hope this helps. :)
 
Hi! I'm Brandi!
Sorry you have such bad migraines! I have the same problem. I have been getting migraines almost every day lately. It sucks! I'm on Atenolol for it right now. But it doesn't seem to be working well so I'm going to the doctor today.

When you zone out, can you talk? Are you moving around (rocking maybe?)
 
I just kept a journal of my migraines for the first time in october...I had 6 days that were migraine free-IN THE WHOLE MONTH OF OCTOBER! I had never really kept track of it before. How insane is that? But anyway, when I zone out...I'm kind of just looking into space, sometimes I feel like I am standing behind myself looking through(like an out of body experience would be the closest description). I have never been able to speak during it..but when I'm coming out of it..my eyes are still fixed in space, but I can speak then, but not during, I think. I've always been stationary when this happens. I can remember times when I was a child and I would do the dishes at night...I remember standing at the sink washing a plate and I would just stare and wash the same plate for a minute or two...and then my mom would walk in and say "sarah I think the dish is clean, you can stop now." Very strange. But everything I've been reading does say that when you have a seizure if you are doing a repetitious activity...you my get stuck repeating until the seizure is over. I hope that makes sense...it's the best way I can describe it.
 
Hi Sarah I am also new to all of this. I completely understand the part where you talk about being aware of surroundings but unable to talk or stop the partial seizures. It is amazing when you start to look back at all of the signs that you just rationalize away until you have a diagnosis. I now found that I analyse everything that I feel or goes on with my body - that too can drive you crazy but I do hope that levels off. Trying to explain to people who have not experienced it is difficult because they look so puzzled or confused but they are trying to be supportive. Anyway hopefully things will even out with meds kicking in.
 
Sarah............You are definitely not crazy because if you are, I am too and I'm not about to go there! It's weird how when you find out and think back, things really do start to fall into place and click. Things that made no sense whatsoever now make sense. I just wonder why I (or anyone else for that matter) didn't catch up on it sooner. Hang with us and we'll support you through it -- it's been an immeasurable help to me.
 
Bernard said:
Hi Sarah, welcome to the forum. :hello:

That sounds like sleep paralysis
Click to expand...


Bernard,

Funny you should mention this... I was googling for insomnia and I found this too. I have a feeling I might suffer from this too. Knowing someone else is thinking this, makes me lean towards the sleep paralysis for my morning problems(but that has only ever happened twice in my life, that I know of).

Thanks!
 
Hi Sarah -
I suffered with migraines for 30 yrs. I was put on many different meds over the years.
I would be in a fetal position for 4 days. I lost so much time to this pain. I concluded that they were hormonally triggered, but conventional doctors only had pharmaceutical answers.
Then I met a doctor that suggested that I try magnesium.
I have not had a migraine since. I take an ionic form of this mineral

Then my daughter began having seizures after her menses began.
I then learned that migraines are now classified in the seizure family.
She also tried pharmaceutical drugs, but the quality of life on them was unacceptable.
Her neurologist suggested that she use magnesium also.
Right now she is using a chelated form of the mineral.

Making nutritional changes has also been a part of our approach to seizure control for her.

I was also having sleeping issues at the time and the same doctor helped me to eliminate this issue as well. Magnesium deficiency can cause a lot of symptoms.
 
Ambulatory EEG was post-poned

So as I had mentioned in my posting...I did have a 72 EEG schedule to start yesterday. Well we had to post-pone it b/c I am sick. The tech said the my coughing and sneezing will cause anomalies in the test. So now I am rescheduled for 12/1-12/4. They initially offered me next week, but there is no way I doing that over Thanksgiving. Call me selfish, but I would like to not look like the bride of Frankenstein during Thanksgiving! OK thanks for listening(reading). I needed to vent that!
 
72 hour EEG only laster 24 hrs & 48 minutes

So I had my EEG. I started it on Monday 12/1 in the A.M. Needless to say when I went for my appointment on Tuesday at 11am, I had them take it off. I was in very bad pain as soon as I left the Dr office on Monday. I tried to power through it. I fell asleep for about 30 minutes Monday night. Then I had a horrible anxiety attach. My head was pounding, I took motrin and my migraine meds..nothing eased the pain. I was freaking out. At about 1am I called the hospitals emergency room to see if there was anything they could (at this point I was shaking and crying from the pain.....I am the same girl that lived for over 15yrs with severe migraines and never sought help..so I like to think I can tolerate pain). The emergency room said I had to call my Dr and there was nothing they could do to help. I felt horrible waking my Dr. up.... so I powered through it. My husband felt so bad, he wanted to help me but there was nothing he could do. So I call the Nuerology center at 9am to see if when I came in for my appt at 11am, if they could take this thing off. They said that my Dr had to approve. I call my Neurologist at 9am... of all days, she's not coming in until 1030am. So I call back at 1045am, right before my 11am appt....the Neurologist still isn't in... I start to cry again at this point. I check in for my appt...thank God... my Dr. called and said they could take it off, since it had been at least 24 hours. When I tell the tech about my experience from the night before, she says... if it was that bad, you could have taken it off yourself...... SERIOUSLY!!! Anyway, she unhooks me and I have these horrible red welts where the electrodes were. Later that night I have blister inplace of the red welts. So it turns out I had a bad allergic reaction to the glue. Long story for nothing... I go back to the Dr in January to find out the results from my EEG. Can you imagine if I would have just not said anything and forced myself through with it for the full 72 hours?

Thanks for listening!
 
SarahBU said:
... So it turns out I had a bad allergic reaction to the glue. ...
Click to expand...

That's pretty unusual I think. It may be the first time I've ever heard of it. Sorry you had such a horrible experience with it. Hopefully they got some good data.
 
I guess I should have also included that I am a fair skinned Red head. So I do have sensitive skin. I'm sure this didn't help it.
 
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