My introduction

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Ophelina

Ophelina

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Hi all,

I was never a part of any support group/forum and I am really happy to join you all today.

I was diagnosed almost 10 years ago, when I was 18, after having a grand mal seizure. I was having all kinds of "weird feelings" since I was 10 or 12, but I thought this was normal.
My EEGs were never normal and, even while I was on meds, I still had some kind of partial seizures (the kind that doctors like to call "dreamy states"). This is why my neuro decided to take me off of Tegretol gradually (we tried lamotrigine, but I was allergic).
This worked fine for 3 years and I've learnt how to live with partial seizures up until now. I was having these episodes 1 to 2 times a month, sometimes going months without them, but now I keep getting them a few times a day.
I am really bad at keeping track and I've never managed to keep a diary for more than a week (shame on me, I know :paperbag:).

The seizures are also more intense now. I get really dizzy and confused (but I am aware and conscious) and it is much harder to "get back to track" after having them. I used to be the most sensitive in the morning, but now there literally are no rules.

I will be seeing my neuro these days, but right now I am just feeling a bit f***ed up, because it started all over again.

Hope you're all doing well :e:
 
Hi Ophelina, welcome to CWE!

Sorry to hear that your partials are progressing. Hopefully you and your neuro can find a treatment that will bring them under control and keep them from escalating further.

Best,
Nakamova
 
Hi Ophelina,

Just like you I started having seizures at 10 (53 now). Often I was having seizures the first thing in the morning and then when I went to bed these are called myoclonic seizures. My Dr. did a sleep study on me and found I was having seizures in my sleep. If I may ask do you ever wake up feeling exhausted during the day? If you do you may be having seizures in your sleep like me, but once I got on vimpat the myoclonic seizures stopped. I also have simple partial seizures which will sometimes lead right into an absence seizure where I have a daydream look on my face or I will have a complex partial seizure. Often I get dizzy right before the seizure starts this is all part of epilepsy.
Try taking vitamin B12 1000 mcg. once a day it has done wonders reducing my seizures. Also try and keep better track of your seizures it will help your Dr. and they may see a
pattern in your seizures. My Epileptologist saw a pattern in my seizures and now I have seizures only at certain days of the month and it's always early in the morning or later afternoon unless I'm sick. I wish you the best of luck and May God Bless You!

Sue
 
Thank you both for the warm welcome :hello:

@Porkette
I do wake up exhausted sometimes. It happened just today. I was barely able to crawl out of bed, although I've slept for 8 hours straight.
I've never had sleep-deprived EEG, but I do plan to record myself while asleep.

I was taking vitamin B12 for some time, due to adenovirus, but I didn't notice any difference except for eating like crazy :oops:

Stay well everyone :)
 
Hi Ophelina,

You may want to have a sleep study done to see if you are having seizures in your sleep like I did. The Dr. will do a regular e.e.g. and a e.k.g. around the clock and then when you are sleeping they will be able to see if you are having seizures in your sleep or a possible sleep disorder. I wish you only the best and May God Bless You!

Sue
 
Dealing with seizures

I was diagnosed with Absence seizures when I was 11. I had hit my head really hard on the basement wall when I was 2, when I fell down the basement stairs and tumbled until I planted my face against the wall. The seizures didn't show up for over 8 years. I feel very lucky in that my seizures have never advanced to anything worse than the Absence type.
You have tried several meds and also went off meds for awhile. Each time that a person's body is required to modify itself when a substance that the body is used to having in it, changes happen to the body and brain.
This is a big reason that a person's body changes so much over their lifetime!
I sounds like you have done a very good job of accepting that the E is a part of your life and you have to learn how to deal with the many things that happen differently in the body of a person who has E compared to a so-called 'normal' person. This acceptance is THE MOST important thing that a person w/E can do for themselves!
You are also reaching out for help. which is something that too many people don't do because of a feeling of pride, embarrassment or self pity. Setting those feelings aside and realizing that others CAN help you is very important step to take!
Anytime that you have questions about E, just ask. That is why this site was created!
I forgot, WELCOME TO CWE Ophelina!

ACsHuman
 
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Ophelina said:
Hi all,

I was never a part of any support group/forum and I am really happy to join you all today.
Click to expand...

Hi Ophelina,

You found the right place. We're all in the same situation....we have epilepsy. We might have different types, but we all are here to support you and everyone else. This is the place to be.

"Welcome" :hello:

Joey
 
Vimpat really help my partials.

so did toppmax.

Ive been on tegetrol for 5yrs though
 
Thank you all for support :)

Here's a-bit-late update from my neuro:

The EEG came back abnormal (as usual). One thing that's odd is that all my previous EEGs were showing epileptic activity on the left side. The last one shows it on the right side. I found this very interesting, because I was always feeling my migraines behind the left eye and it recently switched to the right one.
My partial seizures have a tendency to become generalized (this was written on an EEG report) and the proposed therapy is Keppra (levetiracetam).

My neuro was really compassionate. She told me that starting therapy again is my own choice and let me choose by myself if I want to do this or not. In her opinion, doing so would be the right choice.

I am not really sure what to do and I am still rethinking this. I have no experience with levetiracetam. Carbamazepine made me slow AF.

I, also, don't know exactly how I feel about this, but I hope to figure it out.

EDIT: Forgot to mention that she insisted on redoing MRI or seeing my old MRI results. Does anyone have any idea why? If I understood correctly, after my first seizure, a neuro requested MRI just to exclude physical causes like tumors, traumas etc. What else can they tell from an MRI?
 
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Hello welcome.it can f/you up that for sure...Most doc these days leave it ultimatly to you but think it through.If you were driving had accident either hurting yourself or others her opinion would be called and you got bucket of problems.Medicene these days is docs opinions and patients beliefe.
If you are feeling rough with e then what you got to lose by taking meds.Nobody wants shove pills down everyday but what's your alternative ..we all got different ideas you just have weigh it all up..
Cheers
 
EDIT: Forgot to mention that she insisted on redoing MRI or seeing my old MRI results. Does anyone have any idea why? If I understood correctly, after my first seizure, a neurologist requested MRI just to exclude physical causes like tumors, traumas etc. What else can they tell from an MRI?
Click to expand...
My newest neuro did the same thing. I think they just like to draw their own conclusions from the test results. One reason for a new MRI is that MRI equipment has been improving steadily. So a new MRI might be more revealing of a tiny scars or lesions that could be a factor in causing the seizures.
 
Taking Meds

Ophelina,
Each and every person's body reacts differently when any type of med is introduced into it! Many times it may appear that people are having the same reactions to a med, but you can be sure that there IS something different happening somewhere in their body. You can only get a list of the common side effects that may happen when taking a certain med. I have very lucky in that my body has never had a severe negative reaction to any of the different meds that I have been on in the 50 years I have dealt w/my E. This is something that may be very concerning for some people, but if you are having any problems as a result of your E, trying the meds suggested to you by your doctor may be the only way to control those problems! There is always some 'give and take' involved w/E. It sure seems as though anytime a person w/E wants to deal with a problem that person may have to give something up to solve that problem. You know how it has long been said 'You can't have it both ways!' really comes to the surface and shows what it means!:ponder:

ACsHuman
 
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