New medicine??

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jnjdav1
Regular Member


Date Joined Oct 2003
Total Posts : 23
   Posted 12/27/2004 6:09 AM (GMT -7)   
 
 
Hope all of you had a wonderful christmas. I was getting over an episode so it is kind of a blurr to me. Funny thing, (Well Not really) over the past couple of years, it takes me a week to get past a seizure. Of course, this is difficult for my family and my employees. I try to get past it but to no avail. Deep down, I am grateful for what I have but I have a hard time showing it. Mood swings are taking over lately nono .
 
I suffer from cataminal seizures that have gotten worse since I had my tubes tied. Always occuring before a menstural cycle. I am about to request to have a hysterectomy and maybe that will help. They have always been hormonal.
 
Has anyone else noticed that the seizures started taking longer to get over? I am still on Dilantin and I only take 200 mg. I am so afraid of the medicine affecting my liver. Maybe I should switch meds. I am afraid it might affect my aura. I do work full time and we have three children. I depend on my ability to know.
 
Any suggestions ?
 
Nikki

kayakmom
Veteran Member


Date Joined Jul 2003
Total Posts : 585
   Posted 12/27/2004 10:48 AM (GMT -7)   
Nikki, So sorry it takes so long for you to get over the seizures! It can sometimes take my son a week to get his memory all the way back and his thinking is a bit more messed up, too.

I wonder if your neuro would go up on the med since you are still so low and having seizures? Worth asking anyway. There are meds like Topamax and Zonegran that do not filter through the liver but through the kidneys. No idea if these meds would be ok for you. Sounds like a good thing to ask the neuro. I have a friend who also has catamenial seizures and she is told to take an extra med right before her cycle or right as it starts when she sees seizures.

Please talk all this out with the neuro. Sounds like it is affecting life for you!I am sure the thought of switching is a tough one since you have so much depending on you! Talk it over with the doc. Changes are hard and you sometimes see some more seizures right during those weeks of change...

jnjdav1
Regular Member


Date Joined Oct 2003
Total Posts : 23
   Posted 12/29/2004 5:29 AM (GMT -7)   
 
 
Kayakmom,
 
Thanks for the information. Do you know what type of meds she takes? I have an appt in January and I would like to ask about changing meds. The problem is, doctors do not believe in cataminal seizures. They also have a hard time believing that I always know when. From your post, I get that she knows when also.
Doctors need to start listening to us. We know our bodies best.
 
Thank you for listening,
Nikki

try2bhappy
Regular Member


Date Joined Nov 2004
Total Posts : 163
   Posted 12/29/2004 6:13 AM (GMT -7)   
I have never heard of those type of seizures. I had a hsyterectomy when I 38. I took hormones for a while. My seizures started 2 and a half years after that. I started going to a seizure clinic just a week ago. They are taking me off some meds and adding others. One they added is Zonegran my husband has noticed and so have that I have really become very grumpy in the past week. I do have seizures almost every day2-3. But since I have been on the zonegran I have gone 2 days not in a roll with out a seizure.They are doing test on me at this clinic.It is at a University Hospital which is suppose to be really good .I just seen were Kayakmom talked about zonegran. If any one can give me any imformation about this med and does the grumpy part go away. If I have been on it and have gone 2 days (not in a roll) with out a seizure I really want to give it a chance. I have gone for walks. Done extra exercises and am still grumpy.Any suggestions would be welcomed. Mary

kayakmom
Veteran Member


Date Joined Jul 2003
Total Posts : 585
   Posted 12/29/2004 9:50 AM (GMT -7)   
Yes, there are some neuros who do not believe in the catamenial side. They will often talk about how the hormones affecting seizures so I do now know why they fight this one!!

My friend is on Topamax. She had gained 40 pounds with Depakote in 6 months and it was not controlling seizures at all. She switched to Topamax and lost all that weight and has control. Everyone is different.

My daughter has more issues around her cycle as well. Hers are minor, however. Most of hers remain subclinical, so that is a problem!

Hoping your January appointment helps bring you better control!

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 12/29/2004 6:11 PM (GMT -7)   
Oh yeah, my seizure activity is much higher 10 days or so before my period. It's definitely hormone related. My neuro warned me that I might experience this phenominon. It's like clockwork every month!
Happy moments, praise God.
Difficult moments, seek God.
Quiet moments, worship God.
Painful moments, trust God.
Every moment, thank God.


jnjdav1
Regular Member


Date Joined Oct 2003
Total Posts : 23
   Posted 12/30/2004 5:10 AM (GMT -7)   
Thank you all for your help!

I will look into Topamax. I am afraid of making a change while working. Guess I will need to look into driving. Even though I have always known when, I fear new medicine will affect that.

Thanks again, it helps sooo much knowing there are others who understand.

Nikki

Minnie66
Regular Member


Date Joined Jun 2004
Total Posts : 82
   Posted 12/30/2004 7:16 AM (GMT -7)   
Hi
Nikki, I am the new one on the block :-) ..not new to seizures ..new to the board.. but I have to tell you all I know about Catamenial Seizures... Wow amazing.. I just read on an earlier post about those and I made a comment.. you see they are more common then we all think !!!
 
Anyhow... Yes ... Only you know your body.. I argued for years with my first nuero that I trusted.. that my seizures seemed the worst around that time... about 5 days before my cycle.. I keep logs to this day... the cycle is not as accurate as it was for 10 years I knew what day I was going to have a problem.....now that I am getting older it is changing.... But anyway... I knew my problem ... but my doc didnt.....
Finally I switched neurologists...switched gyns....and I went to a special neuro that deals with seizure disorder with women......mind you she moved to California... does me no good..... but there are others out there.....
 
I had a Gran mal with my first pregnancy....I was 6 months pregnant... I knew after that, all the time around the time, of my period to stay home !!!!  I could feel it coming on... I just felt wierd....
 
OK... 10 years later... the auras were not working anymore.... I know like you.. you say you know when they are coming.... well, not to scare you... believe me ... I would never try to do that... I am just trying to make you aware.... I wish I had someone to tell me about half of the stuff, I know now that I should of known 15 years ago.....OK .... Sorrry back to the Subject.. eyes ......
 
The auras werent working anymore.... I was on Tegretol for a good 10 years.... and it just stopped working for me.... Put it this way.... I dont work.... but I do drive.... I also have 3 kids so I drive alot, just to get them around..... I have had times.... when I dont know where the heck I am..... I get lost....
I dont have gran mals.... I dont know about you..... I mean I just lose it for a moment.... I can stop at a red light .... I stop at a stop sign.... I follow all the rules... but it isnt right.... its dangerous......
I always knew when this was going to happpen...my  " spaceouts " then all of a sudden I lost control...
 
My point is .... just be aware .... its scary ... you never know....I am sorry if I sound like I am trying to preach or something... because believe me I am not !!!  I think I would crawl in a hole if my liscence got taken away ..... I already told my husband.... I could not deal with it.....
 
Now meds..... The hormone specialist neuro.... first wanted to put me on birth control pills to stop my periods .... to balance out my monthly hormones.......she said if I went on the pill.... and took them all month long... not get my period at all....... stop my period all together.....for 6 months at a time ... it would balanace my hormones monthly.....This woman is a Big Wig in New York.... She actually just moved to California to do a study though so I dont think she is taking care of patients anymore.... She suggested that..... OR.... like someone else said on the board taking extra meds around that time of the month.....
 
One more thing..... This doc is also the one that reccommended the Keppra for me.... Which I have to say has been helping me seizure wise..... I have had the best seizure control in years on Keppra.....She started me on 1000mg a day though and I couldnt handle it so I cut down.... and slowly went back up to 750mg with the Zonegran 200mg a day..... I have to honestly say with my seizures I have been excellent control...... the best in years.... Although my mood is horrible.....
 
Then again.... I am a 38 year old mother of 3 and wife.... so I guess I have the right to be cranky tongue ..
Just being a stay at home mom is enough to drive anyone nuts huh !!!  LOL !!! tongue ok sorry for the long post..... I just like to share my knowledge when I can.... If I can help others ... I at least feel I did something in this world besides the dishes !!!! :-)
 
I hope I didnt bore you.... next time I will make it shorter 
Have a good one...
Dor :-)

Diagnosed with Seizure disorder in 1989...After much reasearch found the reason was because of an angioma in left temp lobe.. I am looking into surgery at this time...I have been very lucky over the years.. I have had 3 healthy children while on low doses of meds...Seek to get off meds...
currently on .... this month anyway ..
Zonegran 200mg
Keppra 750mg


jnjdav1
Regular Member


Date Joined Oct 2003
Total Posts : 23
   Posted 1/4/2005 5:37 AM (GMT -7)   

 

 

Hi Dor,

 

Thank you for your post. It always helps to know that someone understands what you are going through. This all started in 1992. At first, it was easy to deal with. I married my husband in August of 1996. Our first child was born November of 1997. It seems that after our other two came along things started changing. I suddenly have this overwelming need to make it okay everyday. I feel such pressure that I just do not have the time to be sick. I guess with a full time job and the children it is too much to handle sometimes. I am going to talk to my neuro about changing meds. I tell you though, I am afraid to drive during a change. I do not want to lose my aura with a different med. I do not see how I could afford to quit working at this time. I wonder if there are programs to help? I have never wanted help before always needing independence. However, know I feel that I need help to gain that independence back.

You have been an inspiration to me. I know feel I can make it.

 

Thanks again,

 

Nikki

 

 


Minnie66
Regular Member


Date Joined Jun 2004
Total Posts : 82
   Posted 1/4/2005 9:37 AM (GMT -7)   
Hi ...
 
Nikki.. I know where you are coming from.. belive me !! I could honestly say.. I am the same way... I dont want help from anyone or anything... I am very thickheaded when it comes to that subject..
 
We just happen to be lucky enough that I could stay home... barely... It isnt easy though... I worked many part time jobs over the years... And like you .. the first, I would say first 10 years or so , of my Seizure problems werent so bad... they were under control.... Then Bam... it just got out of control....
I dont know if it was the changing body... or just the Tegretol was inaffective anymore... we still dont know.... Just the pressure and stress of taking care of a family.... Stress is a big Seizure trigger....
 
I am thick as a brick though..... I also want to work.... My youngest is in full time school now... and I am home..... I want to be out in the world again....At least part time.... But like you.... It is scary... I am scared to take a job... and not know where I am one day while talking to someone.... If you have your problem under control, I understand why you dont want to switch.... that is such a tough decision....
 
Do you know why you  have the seizures ?? I know you said they are hormone triggered, but is there another reason.... alot of people never know why they have them.... I am lucky to know why I have them....What type of seizures do you have ???
 
As far as feeling like you need to take care of everyone... You know what... I am the same way too...
 
But you know.... Over the past year.. I really been doing alot of research and alot of thinking...and my New Years goal is to start taking care of me too :-) .... I am going to make some phone calls this week to the docs office about going in for my evaluation for surgery.....
 
I think the family could go for a week or so without me.... Maybe they can learn how to do laundry yeah ...Maybe I can be med free !!!
 
Start thinking about yourself too.... I know it is hard..... But you cant help them, if you dont take care of yourself !!!!
I hope all goes well with you visit at the doc !!
take care
Dor :-)
diagnosed seizure disorder 1989
reason, angioma in L temp lobe
seeking surgery options
Keppra 750mg
Zonegran 200 mg


Minnie66
Regular Member


Date Joined Jun 2004
Total Posts : 82
   Posted 1/4/2005 9:42 AM (GMT -7)   
Opps sorry... I forgot I wanted to say as far as programs for help... I know .. Or I think if a person is diagnosed with Seizure Disorder.. they could get Disability... But I have read it is difficult... I have never tried... I never really asked my doc either... You might want to ask your doc... also check out the epilepsy foundation website maybe there is some info on there ??/ .....
diagnosed seizure disorder 1989
reason, angioma in L temp lobe
seeking surgery options
Keppra 750mg
Zonegran 200 mg


jnjdav1
Regular Member


Date Joined Oct 2003
Total Posts : 23
   Posted 1/5/2005 5:34 AM (GMT -7)   
Dor,

The doctors have never been able to tell me why. They have never found anything wrong even after MRI's and CAT scans. My GYN put me on birth control pills at 16. I would go two or three months without a cycle. I stayed on them for three years. I grew tired of taking them so I quit. A month later I had my first grand mal seizure. They put me on dilantin. I started noticing that they only happened two days before my period. I went to my Neuro and explained this to him. He laughed and said that has nothing to do with it. I went back to my GYN and talked to him. He said that my body probably stopped producing a certain hormone that my body was used to getting with the pills and this was how my body reacted to it. He put me back on them and they stopped. Unless of course, I did not get a good night sleep.

I got pregnant with our first daughter on the pills. I did not have any problems during pregnancies. I guess because I had no cycles. Inbetween pregnancies, I was usually fine. However, since I have had my tubes tied. I am back to having them every three to four months and two days before my cycle. I am not comfortable going back on the pills. I worry about them. They can cause problems.

I will talk to my Neuro about diff. meds and any effects they may have.

I have to do something different. I feel that I am going through panic attacks and I never feel normal anymore.

Thank you,
Nikki

Minnie66
Regular Member


Date Joined Jun 2004
Total Posts : 82
   Posted 1/5/2005 2:36 PM (GMT -7)   
I am telling you if I read one more person, that doesnt know the reason for their seizures it is amazing !!!I am so lucky to know the reason !! I know what you mean about not feeling normal though....I still feel like a wierdo, and I know the reason for my problems....Hopefully with time you will find the reason for your problem.... I believe you !!! I been there.... Again, more people have these problems, and just dont even realize it !!!!  I hope your doc can help you soon....I dont blame you about the pills, I always hated them too, I refused to go on them too sad .....I guess we are thick !!!!  I know I am anyway !!!!
Feel better :-)
Dor :0)
diagnosed seizure disorder 1989
reason, angioma in L temp lobe
seeking surgery options
Keppra 750mg
Zonegran 200 mg

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