Hello I'm new

[MichelleMC]

Hello all,
I just joined this forum, and I wasn't ever going to join an epilepsy forum because I have it and am ashamed of my epilepsy. I have grand mal and partial seizures, but my last grand mal seizure was in 2004, and I have partial seizures at certain times during some months and sometimes when I stress. I decided to join here because I was told by two doctors that I shouldn't consider having children because I'm on three medications. However, I'd like to see about changing to one medication and hopefully then it will be safe for me to become pregnant. Of course I'll have to talk to my doctor. That was my main reason for joining. Epilepsy is not the happiest topic to discuss, LOL, so that was why I wasn't going to join a forum on epilepsy, but now I feel I must. Thank you for reading.

 

[Crazy Monkey]

Hi Michelle

Welcome to CWE

We are a friendly group of people on this forum and obviously Epilepsy is our favourite subject (not). But we all share our problems online from time to time as it is not always easy chatting to someone you are close too.

I am in the same position as you, I feel ashamed of my epilepsy which is why I leave it locked in the closet, I find it a very sensitive subject and difficult to talk about, hence never sharing this topic with my friends. CWE has been a bit of a lifesaver for me, as I finally have somewhere to get things off my chest and always receive good advice.

Sorry but I cannot comment on having children as I have decided not to have any, (I am not to keen on coming of my meds) plus I am too selfish.

Take care

Kim

 

[MichelleMC]

Hi Michelle

Welcome to CWE

We are a friendly group of people on this forum and obviously Epilepsy is our favourite subject (not). But we all share our problems online from time to time as it is not always easy chatting to someone you are close too.

I am in the same position as you, I feel ashamed of my epilepsy which is why I leave it locked in the closet, I find it a very sensitive subject and difficult to talk about, hence never sharing this topic with my friends. CWE has been a bit of a lifesaver for me, as I finally have somewhere to get things off my chest and always receive good advice.

Sorry but I cannot comment on having children as I have decided not to have any, (I am not to keen on coming of my meds) plus I am too selfish.

Take care

Kim

Hi Kim,
Thank you for your reply to me. I am scared to come off my medications and doctors and family members are discouraging me from thinking of having children. I am wanting it too much though. However, I am doing the best healthwise on the medications I'm on, so I am scared. If I have a grand mal seizure, I will lose my driver's license. I am Catholic, and we are going to consult with a priest about this whole matter. The Church recognizes there are serious conditions to avoid pregnancy, so I just want to see where we should go. Maybe the priest will encourage us to adopt only. We will find out soon.

 

[Crazy Monkey]

The problem is with me, even if I wasn't on meds I wouldn't want kids anyway, my life is very hectic and involves a lot of travel and having kids wouldn't fit in with my schedule. I am always jetting off somewhere performing dangerous stunts to get photos. I try to live my life without thinking about my epilepsy and that works for me. My seizures are not controlled by meds anyway and I am restricted from driving so I wouldn't have my license to lose, but I would hate to lose it if I had acheived it in the first place.

But for you, if you want kids then you shouldn't let E stop you, there must be a way. There are plenty of mothers on this forum who have epilepsy, they will be able to advise you better then me.

 

[Cint]

Welcome Michelle,

I can certainly understand your frustrations of dealing with epilepsy. I've had CP and grand mal seizures for years, too. But I don't feel ashamed of it, perhaps embarrassed, when I have a seizure in public. Why should I be ashamed? It's an illness and it could happen to anyone. I share it with friends because they need to know what to do if they were to witness a seizure.

I do have two grown children, but back when I had them, the seizures were under control. I was only taking one medication. But now things are much different for me. I take two meds, used to take 4, and still have CPs and nocturnal tonic/clonic seizures.

I hope you can find the right medication and one day be able to have a family.

Cindy

 

[Cint]

Kim,

Travel is what my life was before I developed epilepsy and had children!
Oh well, there is still time and since nothing has worked completely for the seizures, I might as well travel some more.

 

[MichelleMC]

The problem is with me, even if I wasn't on meds I wouldn't want kids anyway, my life is very hectic and involves a lot of travel and having kids wouldn't fit in with my schedule. I am always jetting off somewhere performing dangerous stunts to get photos. I try to live my life without thinking about my epilepsy and that works for me. My seizures are not controlled by meds anyway and I am restricted from driving so I wouldn't have my license to lose, but I would hate to lose it if I had acheived it in the first place.

But for you, if you want kids then you shouldn't let E stop you, there must be a way. There are plenty of mothers on this forum who have epilepsy, they will be able to advise you better then me.

Kim,
Thanks again for your reply. How are your seizures controlled if not by medications if you don't mind me asking? If you do, I'll understand.

 

[MichelleMC]

Welcome Michelle,

I can certainly understand your frustrations of dealing with epilepsy. I've had CP and grand mal seizures for years, too. But I don't feel ashamed of it, perhaps embarrassed, when I have a seizure in public. Why should I be ashamed? It's an illness and it could happen to anyone. I share it with friends because they need to know what to do if they were to witness a seizure.

I do have two grown children, but back when I had them, the seizures were under control. I was only taking one medication. But now things are much different for me. I take two meds, used to take 4, and still have CPs and nocturnal tonic/clonic seizures.

I hope you can find the right medication and one day be able to have a family.

Cindy

Cindy,
Thank you for your response as well. There was a medication that worked well for me, but the doctor took me off of it because back then(this was years ago) he found it to be dangerous for other reasons. Anyway, it's on the list of epilepsy medications and is not known for certain to cause birth defects, so I was thinking about asking about going on that medication.

I do have another question. What's the difference between the complex and the simple partial seizures?

 

[Crazy Monkey]

No I don't mind you asking, I am always open when it comes to talking about my epilepsy on this site.

My seizures are not controlled, we have tried loads of different meds and nothing seems to work, I have had seizures since I was 10 years old and I am now 30, I am now used to living with them, I try not to let them restrict my life too much, the only thing that bugs me is not being allowed a motorbike, most other things I can cope with.

I have absence seizures, I have about 50 of these a day, I have had what we think to be a couple of drop seizures and recently I keep waking up in the night after having a seizure of some description, not to sure what type yet, but they keep happening. My seizures are getting worse and the meds keep changing and increasing, but I try to ignore them the best I can. For some reason I do feel ashamed of them, I know it can't be helped, but I just feel that Epilepsy is a condition that is not socially accepted and I might be paranoid but in the past I have found people to back off. Also as Cindy mentioned they are also embarrassing, I seem to have seizures in the most unfortunate of places.

 

[Cint]

Complex partial seizures are where a person is in a semi-conscious stage. They can't understand when someone is talking to them, nor can they speak. May wander aimlessly. The seizure usually lasts 2-3 minutes. A simple partial, the person doesn't lose consciousness, and it usually last maybe a minute.

 

[Nancy]

Hi Michelle ~ Welcome
You asked on another thread about people taking meds .......

Well, I've been taking lots of them since I was diagnosed, age 46, in 1990.
I've had two brain surgeries - lol - haven't had a seizure since the last one May, 2007.
I've been told that I'll be on the meds for the rest of my life.
Suits me - I'd rather take meds than have seizures.
But, of course, I'm old and don't think about having children.
Best wishes to you.

 

[RobinN]

Hi Michelle -
My daughter is the one that is having seizures. She is 16, and this all started with the change in her hormones. Pregnancy certainly worries me in that regard for her.

We tried four meds and they all had terrible side effects. I now believe that they also increased seizure activity. She is med free at the moment and is down to one tonic clonic a month, from six. We also have made nutritional changes, vitamins and minerals for brain support, and neurofeedback. I am passionate about healing her body, not adding more toxins to it.

 

[MichelleMC]

No I don't mind you asking, I am always open when it comes to talking about my epilepsy on this site.

My seizures are not controlled, we have tried loads of different meds and nothing seems to work, I have had seizures since I was 10 years old and I am now 30, I am now used to living with them, I try not to let them restrict my life too much, the only thing that bugs me is not being allowed a motorbike, most other things I can cope with.

I have absence seizures, I have about 50 of these a day, I have had what we think to be a couple of drop seizures and recently I keep waking up in the night after having a seizure of some description, not to sure what type yet, but they keep happening. My seizures are getting worse and the meds keep changing and increasing, but I try to ignore them the best I can. For some reason I do feel ashamed of them, I know it can't be helped, but I just feel that Epilepsy is a condition that is not socially accepted and I might be paranoid but in the past I have found people to back off. Also as Cindy mentioned they are also embarrassing, I seem to have seizures in the most unfortunate of places.

Kim,
Thank you for your response. I'm sorry you have such problems with your seizures.

 

[MichelleMC]

Complex partial seizures are where a person is in a semi-conscious stage. They can't understand when someone is talking to them, nor can they speak. May wander aimlessly. The seizure usually lasts 2-3 minutes. A simple partial, the person doesn't lose consciousness, and it usually last maybe a minute.

Thank you, Cindy for answering my question.

 

[MichelleMC]

Hi Michelle -
My daughter is the one that is having seizures. She is 16, and this all started with the change in her hormones. Pregnancy certainly worries me in that regard for her.

We tried four meds and they all had terrible side effects. I now believe that they also increased seizure activity. She is med free at the moment and is down to one tonic clonic a month, from six. We also have made nutritional changes, vitamins and minerals for brain support, and neurofeedback. I am passionate about healing her body, not adding more toxins to it.

Hi Robin,
My seizures developed too when my hormones changed and I first had my menses. I didn't know they were seizures because they were the partial ones where I didn't lose consciousness so for the longest time we thought they were just nervous twitches, until I was 16 and practicing driving with my father. Then I had my first grand mal seizure, and thank goodness we were right near the hospital.

 

[RobinN]

That is lucky.
We were told that hormones would not be something that caused seizures. HUH?

 

[MichelleMC]

That is lucky.
We were told that hormones would not be something that caused seizures. HUH?

Robin,
Sorry, but I'm not understanding what you are referring to when you say that is lucky. There is such epilepsy as(I may not spell it right) Catemenial Epilepsy, whereas it is hormonal epilepsy and I read more about it the other day and the signs of having that kind of epilepsy is the woman having seizures during her ovulation or before her menses.
Why did they tell you that hormones would not cause seizures? Some people it does. I'm one of them.

 

[Meetz1064]

Robin's saying

that it was lucky that you were near the hospital when the grand mal (now called a tonic clonic) happened.

People that say that E(pilepsy) is not related to hormones are...UNAWARE. I'll be polite. fft::bigsmile:

Like you, I have grand mals (tonic clonics), but mine only occur in my sleep cycle. I'd been having some twitches that were waking me up in my sleep....so I've been put back on Klonopin (YUK). I don't have the pleasure of the other types of szs that you have....I'm lucky in that respect, I guess.

BTW, it's nice to meet you. You've found a wonderful place to be, here at CWE. Mr B (Bernard) has made us a wonderful home here, so please feel free to check out all the nooks and crannies.

Take care!

Meetz
:rock:

 

[RobinN]

That is exactly what I meant Meetz. Sorry to confuse the conversation.

I was just never told about catamenial seizures. I had to go to my favorite place, The University of Google, to find the answers. We no longer have that neurologist. We have one at USC that is a specialist in hormonal seizures. Rebecca uses a bio identical progesterone. Now we are working to fine tune the dose.

Yet I am working past that with my personal research, and finding out why women would have an imbalance in the first place. So far, I am concentrating on the adrenal glands and the liver. You can search the forum and find some info.

 

[MichelleMC]

that it was lucky that you were near the hospital when the grand mal (now called a tonic clonic) happened.

People that say that E(pilepsy) is not related to hormones are...UNAWARE. I'll be polite. fft::bigsmile:

Like you, I have grand mals (tonic clonics), but mine only occur in my sleep cycle. I'd been having some twitches that were waking me up in my sleep....so I've been put back on Klonopin (YUK). I don't have the pleasure of the other types of szs that you have....I'm lucky in that respect, I guess.

BTW, it's nice to meet you. You've found a wonderful place to be, here at CWE. Mr B (Bernard) has made us a wonderful home here, so please feel free to check out all the nooks and crannies.

Take care!

Meetz
:rock:

Hi Meetz,
I guess that it might be better when it all happens in your sleep right? Are you able to drive? If so do they feel better about you driving because you have your seizures when you're sleeping? Does it make it hard to sleep though? Thanks.