New and would like some advice

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Melainie

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Hi there,

I am new here and hoping that someone has been through similar experiences with epilepsy as me and can offer some advice.

I was first diagnosed with epilepsy when I was a baby, I than spent some time without any seizures until I was 9. My next seizure was when I was 13, after which I was placed on medication which I remained on until I was 25. In that 15 years I have not had a seizure.

My issue is that I still live in the state of believing that I will do something that might trigger a seizure to be brought on. For example I tend to not go dancing under flashing lights because that has in the past caused me to feel dizzy, which is the feeling I remember having before my last seizure. The last two seizure were most likely had stress as a contributory factor.

Any suggestions and comments would be appreciated as I want to try to get pass the fear that I have about having a relapse with my epilepsy.

Melainie
 
Melainie

I am glad things are so good for you and I hope they keep going that way. I am sorry to say this but you have to live your life for yourself, but you cannot make epilepsy come back (so to speak) no more than you can catch it. The possibility that it will come back is always there of that there is nothing you can do but that does not mean you let that fear decide your life, no more than you let epilepsy rule your life and make the decisions for you. Life is a roller coaster and we do not know what is around the corner for us, you could win the lotto as easy as epilepsy returning. You can never tell.
 
As Fedup said you will always have epilepsy. It's not like a cold that will go away in a week or two.

I'm going to assume that you are a woman, I might be wrong though. 13 is around the time that your body starts going through hormonal changes and you start menstruating and that would have been what caused that seizure. There are some women who have seizures around their time of the month. If you haven't had a seizure since then I wouldn't really worry about that bringing on a seizure too much.

If there are things that you know bring on seizures then I'd try to stay away from them. Flashing lights will bring on seizures for some people.

Stress is a major trigger for seizure for many people. I know you can't help not getting stressed over things but try not to, easier said than done.

Are you still taking meds now and are you still seeing your neuro on a regular basis? If you start having that dizzy feeling more often, not around flashing lights for example, defiantly let him know. I don't know if he would suggest putting you back on meds, if you've stopped taking them, to try to help with it.

Nice to meet you!
 
Hi Melainie --

One good approach to the fear and uncertainty of epilepsy is to take control over the choices you make, and let that be your guide.

Flashing lights may or may not be a seizure trigger for you, but if they make you uncomfortable you can either choose to endure them or choose to avoid them. If you choose to endure them, do what you can to be proactive -- aim to be healthy overall, pay attention to how you are feeling, take breaks, etc. If you choose to avoid them, own that choice -- don't regret what you might be missing, but focus on the positive things that you are doing instead.
 
Hi Melainie,

Welcome to CWE. This forum was made by Bernard out of love for Stacy. That love permeates throughout the whole forum.

I will give you two live experiences. My sister has epilepsy and so do I.

I was diagnosed at age 6 and she was diagnosed at age 6. At age 16 I decided not to drive. I did not want to cause an accident. I only had absence seizures when I was a teenager. I had my first T/C's when I was 21 years old. They got worse as the years went by. They have gotten better since I turned about 65. Then I got Parkinson's Disease. I am still a Positive Thinker.

Now, my sister's seizures were completely different.When she was growing up, she had T/C's. She decided to drive. She had a few accidents but she kept on driving. Then she turned 16 years old. Her seizures went into remission. She went to work and had a good paying job until she turned about 60. Her seizures came back all of a sudden and were worse than mine. So, she went without seizures from age 16 to age 60.

She did not get along with me so I don't know if she did anything to prevent seizures.

It is hereditary in my family.

I hope this helps.
 
Melanie

you can't be afraid to do things because you might have a seizure; I have had epilepsy all my life and flashing lights bring them on with me and if you think about that is more likely going to bring on a seizure thinking about it.
Crowds can bring on a seizure with me like my conregation I have to sit up front I can't sit in the back. I don't let it keep me from going out if I seize I seize and I will ride public transit. If someone can't handle me seizing that's there problem.
 
Hi Melanie,

I have tonic clinic seizures that can happen years apart. I've also had them months apart. I'm pretty much always scared of having one, especially since having another would put my job at risk if I'm unable to drive. I avoid flashing lights and I eat every few hours. My job has been pretty stressful lately but I don't know if stress is one of my triggers. My last seizure was 2 years ago, but the constant fear is one of the reasons I joined this forum.

Sent from my XT1254 using Tapatalk
 
Welcome Melanie. I assume one or more EEG's were done when you were a child having seizures? Usually during an EEG is tested whether you have sensibility for flashing lights. When that was negative, I wouldn't bother about this and just enjoy dancing. When seizures come, they come and they are not always triggered by something outside the brain. So why let fear for this make your life less enjoyable when you haven't had any seizures in 15 years.
 
I've never had anything show on an EEG, but flashing lights can cause seizures for me. I agree about enjoying life, but I understand where Melanie is coming from.

Sent from my XT1254 using Tapatalk
 
Melanie don't give up what you want to achieve ..both me and daughter have e she was about 9 at the time she went to school with children with server e was intensive unit where the ones who had status e spent most of day unconscious most of those children are living full productive lives one even horse trainer.with my daughter s have stopped but eeg

will show e she stopped all meds years ago when she 15 she 32 now.i remained on meds
have some issues but I won't allow it to rule me ok I don't drive but other issues.You know what problems you have had you may never have s again but you are aware...think of people who walking around who don't know you could take 100 or more people do eeg and some of them have e but never had s.You can take load of people with e and eeg show normal.If you feel concerned talk to doc or e nurse at local hospital
 
Hi Melanie,

Welcome. You've come to the right place for advice, information and support.

There are a lot of triggers for seizures and recognizing what yours are is important. Not enough sleep, stress, flashing lights, illness......the list goes on and on. Some are avoidable and some aren't. I try to avoid the ones I can when possible, which isn't always the case.

A good neurologist or epileptologist can get you on the right path and possibly make you feel less fearful and anxious. Sometimes it takes a combination of things to manage your E and it can involve some (OK, a lot) of trial and error.

As a great and learned philosopher once said: Hang in there, baby.
 
Melanie,
I believe I did have some seizures as a teenager and then none until I was in my thirties. I believe stress and the right conditions triggered mine, but they also found what they believe is scar tissue on my brain. I still have the concern of the unknown but I don't think I have a fear anymore. My son and I are leaving for Israel soon. I recently did a school construction trip in the Dominican Republic which I am returning for another trip. I always have the concern of what if something happens when I am away. But like others have said you can't let it stop you. I am enjoying this forum so far as it is very theraputic in many ways to read similar stories.

Gilles
 
I think it depends on your type of epilepsy - I was originally told by my epilepsy doctor that because my epilepsy was considered "juvinile" I could grow out of it.

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Zara-Newman said:
I think it depends on your type of epilepsy - I was originally told by my epilepsy doctor that because my epilepsy was considered "juvinile" I could grow out of it.

Sent from my SM-G920F using Tapatalk
Click to expand...
The neurologist called a generalized tonic clonic seizure that started in the frontal lobe spread throught.

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Melainie said:
Hi there,



I am new here and hoping that someone has been through similar experiences with epilepsy as me and can offer some advice.



I was first diagnosed with epilepsy when I was a baby, I than spent some time without any seizures until I was 9. My next seizure was when I was 13, after which I was placed on medication which I remained on until I was 25. In that 15 years I have not had a seizure.



My issue is that I still live in the state of believing that I will do something that might trigger a seizure to be brought on. For example I tend to not go dancing under flashing lights because that has in the past caused me to feel dizzy, which is the feeling I remember having before my last seizure. The last two seizure were most likely had stress as a contributory factor.



Any suggestions and comments would be appreciated as I want to try to get pass the fear that I have about having a relapse with my epilepsy.



Melainie
Click to expand...



My name’s Nadine. The 1st question I have is what type(s) of seizures do you have? I have complex partial from a lesion on the left temporal lobe from a fever my mom had during pregnancy and a concussion I got at age 2 from falling against a tv where I had a tonic clonic one. I took Tegretol until age 22. Seizures were being controlled by the med, but I saw a neurologist and that’s when the lesion was discovered. I had gone through some horrible stressors loss of a family member and caregiving where the person tried to commit suicide. Seizures were happening again some psedogenic which are seizures from stress and epileptic ones. Meds and dosages changed for yrs. 15 yrs later I went through a lobotomy surgery-removal of lesion and left hippocampus which both control short term memory reasoning, and sequencing. I’m having a lot of problems with memory. For strobes wear sunglasses, cover an eye, or turn away. I’ll get a migraine now from strobes. Stress, not eating, not sleeping, fever are other triggers. They are many others so go to the epilepsy foundation’s website


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Hello & welcome to the group. I've had epilepsy since childhood. I had simple partials since I was little, but nobody understood what they were when I complained of "weird feelings". I had 2 or 3 tonic clonics when I was 14. A simple partial occurred during an EEG after them, those feelings were diagnosed as seizures. Now I get complex partials, too.
Stress can trigger mine, but many occur without any obvious reason--sometimes just 2 or 3 hours after I take a dose of medicine.
 
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