Seizure ending

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

embroiderymama
New Member


Date Joined May 2008
Total Posts : 6
   Posted 5/8/2008 2:14 PM (GMT -7)   
I had a grand mal seizure in 1995.  I have been taking medication since then.  This last medicine she gave me is very expensive - lamictal.  It causes balance problems and makes me tired all the time.  I have quit taking the medicine.  Are there any cases where people quit having seizures?  I feel so much better not taking the medicine. 

djdaz_1985
Veteran Member


Date Joined Jan 2006
Total Posts : 2408
   Posted 5/8/2008 2:30 PM (GMT -7)   

Hi there and Welcome to HealingWell!

Have you stopped taking the meds under supervision? There are other AED's that you can try other than Lamotrigine such as Carbamazepine, Sodium Valporate or Dilantin. It is possible for epilepsy to go into 'remission' (For want of a better phrase) but you should be aware that it does not go away permenantely. Just like other chronic disorders, its with you for life. I would talk to a doctor about starting a different med personally. It is possible that you will not have another seizure for years or maybe never... there is also a possibility that you could have a seizure tomorrow.

I hope that helps you a little. Please stay with us and let us know how you get on.

Darrren


Everyone has a guardian angel. They help pick you up when you fall, comfort you through your times of need and help you appreciate the times when things are going well.
 
"A gold medal is a wonderful thing. But if your not enough without it, you will never be enough with it." - Irvine Blitzer (John Candy) in Cool Runnings
 
Moderator - Epilepsy Forum
Co-Moderator - Depression Forum
 
Help support the forums so we can support you:  http://www.healingwell.com/donate
 


Another Day
Veteran Member


Date Joined Mar 2007
Total Posts : 1055
   Posted 5/9/2008 7:13 PM (GMT -7)   
I did have problems trying to take Lamictal also.  I know it works great for a lot of people.  But, I agree with Darren that should get in touch with your doctor.  I do not think you should just stop taking the Lamictal without supervision.  There are some older seizure medications out there that work well that a lot of people use with success that shouldn't be too expensive at all.
 
I do hope you will get back in touch with you doctor and discuss this.  I would hate to see you driving and have another seizure.
 
I hope you will continue to post with us and let us know how you are doing.
 
Take care!
 
Carla

Moderator, Allergies/Asthma
 
Help support the forums so we can support you:  http://www.healingwell.com/donate
 
 
Epilepsy, asthma, fibromyalgia, GERD, depression, hypothyroidism, tinnitus


embroiderymama
New Member


Date Joined May 2008
Total Posts : 6
   Posted 5/9/2008 8:14 PM (GMT -7)   
My doctor did mention other medications but the side effects wouldn't have been good.  I do go to a neurologist and when I told her I was quitting the medication she became upset.  I can  see why she was upset as it is her job to treat people with seizures.  This doctor has told me for 5 years that lamictal is going generic.  I want to mention that I am 58 and was 45 when I had the gran mal.  My husband told me something was wrong with me and I went from doctor to doctor and was insulted and told there was nothing wrong with me. I'll try and write with how things are going.  I'm just wondering has anyone stopped the medicine and not had any seizures? Also, I don't drive. 

SFnative82
Regular Member


Date Joined Mar 2008
Total Posts : 39
   Posted 5/10/2008 12:12 AM (GMT -7)   
embroiderymama- I say try it out. Just be careful about you daily activities. Its great that you dont drive, since its summer I would also suggest staying away from the pool or ocean. Tell you husband ...since you do need to be watched. "I've had seizures with and without the use of medication"-My gran mal seizures started when i was 16 and have only worsen as if gotten older. Ask yourself do the side effects outweigh the chance of you having a gran mal? Will you recover physically and mentally? I'm scared of having a seizure and never coming out of it. Drugs are bad even if they are currently socially acceptable. I've survived years without medication but was recently scared into poppin my pills so i don't bust a seizure!
*jenn--#2*
 
 
Who the heck are "THEY" and why is everyone asking them these questions?
"THEY" sure do have a lot to say...
 
**daily Rx- Plaquenil 400mg , Claritin Hives10mg , Pepcid 20mg, Zyrtec 10mg, oxycodone 10mg**


djdaz_1985
Veteran Member


Date Joined Jan 2006
Total Posts : 2408
   Posted 5/10/2008 3:50 AM (GMT -7)   

There is nothing wrong with coming off meds in a controlled manner. If it has been 8 years since your last seizure then its less of a risk but whatever you do... dont just stop taking them, otherwise you increase the risk of having a seizure. You need to come of AED's gradually, ideally under a doctors supervision since they will know what size steps to take. I can understand why the doctor would be worried about you saying you were going to stop, but im sure they would rather help you come off them in a controlled manner than leave you to do it yourself.

Let us know how you get on

Darren


Everyone has a guardian angel. They help pick you up when you fall, comfort you through your times of need and help you appreciate the times when things are going well.
 
"A gold medal is a wonderful thing. But if your not enough without it, you will never be enough with it." - Irvine Blitzer (John Candy) in Cool Runnings
 
Moderator - Epilepsy Forum
Co-Moderator - Depression Forum
 
Help support the forums so we can support you:  http://www.healingwell.com/donate
 


embroiderymama
New Member


Date Joined May 2008
Total Posts : 6
   Posted 5/10/2008 7:25 PM (GMT -7)   
my doctor won't even discuss helping me get off the lamictal.  I didn't just quit taking them one day I have been cutting back since last August.  Today I started taking a half a pill a day.  When I went to see the doctor I told her I was only taking one a day and she said if I wasn't taking at least 300 mg a day then it wouldn't do me any good.  She wrote me a prescription to get 150 mg pills and to take 2 a day.  The pills I had been taking were 100 mg. 
This has been a hard decision for me and I know I have to make it myself.  When I told my husband he said he thought I had been doing better and that if I decided to quit them he would be there for me.
I've appreciated all the comments and I hope to get more comments. 

djdaz_1985
Veteran Member


Date Joined Jan 2006
Total Posts : 2408
   Posted 5/11/2008 2:21 PM (GMT -7)   

Hi there,

Im pleased that you have been doing this in a controlled manner... I am just a little disappointed that you have not had more suport from your doctor. Keep us updated with your progress

Darren


Everyone has a guardian angel. They help pick you up when you fall, comfort you through your times of need and help you appreciate the times when things are going well.
 
"A gold medal is a wonderful thing. But if your not enough without it, you will never be enough with it." - Irvine Blitzer (John Candy) in Cool Runnings
 
Moderator - Epilepsy Forum
Co-Moderator - Depression Forum
 
Help support the forums so we can support you:  http://www.healingwell.com/donate
 


Another Day
Veteran Member


Date Joined Mar 2007
Total Posts : 1055
   Posted 5/11/2008 8:32 PM (GMT -7)   
E, I'm with Darren on this one.  I am shocked at your doctor with her knowing that you are going to go off your medication and her not taking an interest in talking to you about how to do it.  It sounds like you have it under control, but what if it were a patient who didn't know how to figure out how to taper off a seizure medication.  Remember how we had to gradually work up to the dosages we are currently on.  What if someone just went cold turkey?  I can see that happening with a doctor like that.  If you need a neurologist in the future, I think I would look for a new one.
 
Please stay in touch and let us know how you are doing.  We all learn from each other.
 
Take care!
 
Carla

Moderator, Allergies/Asthma
 
Help support the forums so we can support you:  http://www.healingwell.com/donate
 
 
Epilepsy, asthma, fibromyalgia, GERD, depression, hypothyroidism, tinnitus


embroiderymama
New Member


Date Joined May 2008
Total Posts : 6
   Posted 5/11/2008 8:51 PM (GMT -7)   
I was lucky that I remembered her telling me that the medicine should be stopped gradually.  I think I have been taking off of it slower than it would be recommended but I guess that's better than taking off too quick.  I could have quit the medicine and just never gone back to her but I felt if I started to have seizures again or ended up in the hospital I would need her.  I live in an area that only has one neurologist and she is rated real high.  I had thought of trying to get another doctor but I think I would need a referral for my insurance to pay and I know she wouldn't refer me to anyone else.  The only place with another neurologist would be 40 miles away and not driving I would have to depend on my husband to take me. 
My seizures just came on for no reason and they found nothing that could be causing them.  They don't think it was caused from any head injuries.  I've met several people who have seizures but they have been in an accident and have had a head injury. 
 

SFnative82
Regular Member


Date Joined Mar 2008
Total Posts : 39
   Posted 5/11/2008 10:49 PM (GMT -7)   
Embriderymama- My last post was started by me and finished by my boyfriend. He was diagnosed with epilepsy when her was 15, he is 26 now. I do NOT have seizures but I did want to tell you that many people with epilepsy do "medicinal therapy". Meaning they take medicine everyday for 12 months-24 months. As long as they remain seizure free the entire time, towards the end of the year they begin to taper off the meds. Many people last 5-7 years seizure free. There are some cases where the person never had a seizure again, however most lasted several years without having another. Some people really would rather do that than be on epilepsy medication consistantly, everyday, forever. Side effects for most just get worse over time. With certain medications , if someone was to take them for 15-20 years uninterupted they could become a virtual vegetable. Thats why some choose to do this.

Just remember that you need to be constantly with someone, probably your husband. It may make you feel like a child, but for people, like my boyfriend its worth it. Stay away from pools this summer! :)

either way I hope it all works out for you.
*jenn--#2*
 
 
Who the heck are "THEY" and why is everyone asking them these questions?
"THEY" sure do have a lot to say...
 
**daily Rx- Plaquenil 400mg , Claritin Hives10mg , Pepcid 20mg, Zyrtec 10mg, oxycodone 10mg**


djdaz_1985
Veteran Member


Date Joined Jan 2006
Total Posts : 2408
   Posted 5/12/2008 2:52 AM (GMT -7)   
I cant believe that there is only 1 neuro in your area!!! Its something I hear on HW quite a bit about neuro's (and psych's from Depression Forum) and makes me wonder... if America is so big, why are there so few specialists? Anybody answer that one? As for being rated real high... she doesnt get my vote.

Everyone has a guardian angel. They help pick you up when you fall, comfort you through your times of need and help you appreciate the times when things are going well.
 
"A gold medal is a wonderful thing. But if your not enough without it, you will never be enough with it." - Irvine Blitzer (John Candy) in Cool Runnings
 
Moderator - Epilepsy Forum
Co-Moderator - Depression Forum
 
Help support the forums so we can support you:  http://www.healingwell.com/donate
 


embroiderymama
New Member


Date Joined May 2008
Total Posts : 6
   Posted 5/12/2008 5:44 AM (GMT -7)   

Thanks for all your replies.  When I hear about people who have seizures they are usually starting them while they are young or have had head injuries. I can't remember an older person having them but maybe they don't get out as much or talk about it. That's why I'm wondering if I  might do better without the medication.

The worst part about having had a gran mal seizure is I lost 15 years or more.  They said I might get them back but  I never did.  I don't think I could stand to lose another 15 but I'm losing something by being on the meds.  I was a bookkeeper for a motel chain and I did the books and payroll for 3 motels and 1 restaurant.  I was very good with numbers.  The first month after the seizure I couldn't even balance my checkbook.

 

I hope I'm not boring everyone with my life.  Maybe this will be my new medication _ talking about it 

 

 


sand1
New Member


Date Joined May 2008
Total Posts : 5
   Posted 5/30/2008 1:28 AM (GMT -7)   
Hi embroiderymama
I can relate to your turmoil when it comes to the meds. I too have been on lamictal, which for me was absolutely 'evil'. When I started to take it at a quarter dose, I vomited and suffered nausea for 4 days. I was told as soon as I felt better, to up the dose to the next level. This just meant I vomited for more days. All this over Christmas. I also suffered gum disease from the chewable tablets which damaged my teeth. All I wanted to do was to get off the stuff as I was in denial about the whole epilepsy thing, and hated putting this toxin in my body.
My first siezure was when I was 31 (4 years ago), and after much too-ing and fro-ing from docs to specialists, I was told that it was a hormonal/pregnancy thing and if I didn't get pregnant again and looked after myself I shouldn't have another siezure. I was told I could come off my meds within 12 months. Of course, I saw that as a window of opportunity and started reducing my dose a little sooner. I reduced it slowly and carefully and had no problems whatsoever (apart from a few sleepless nights worring "what if?")
I was siezure free and feeling fantastic for just under 3 years - until last Sunday.
My doctor wanted to put me back on Lamictal, but I refused and opted for Epilim, as I prefer the hair loss to the vomiting!!
As for the memory loss, I too have suffered a lot, and don't remember much of my youngest daughters first year of life. Things sometimes come back, but I think we probably all have to accept the fact that there will be memories that we have lost for good. Whether this is due to the meds or the seizures, I don't know.
Keep posting, as it has helped me greatly, and not to mention djdaz is just wonderful!
Take care
Deb

embroiderymama
New Member


Date Joined May 2008
Total Posts : 6
   Posted 5/30/2008 8:22 AM (GMT -7)   
I don't know what other people have but each time I started bed wetting she upped the medicine.  Just a few nights ago it the bed wetting started again.  I have been adding back to my medicine and I guess this is a lesson for me.  I was a nervous wreck that I would be in some situation and embarrass myself and have a seizure.  Also, I woke up with therrible headaches in the morning.  Don't know if that's what caused the bed wetting but I'm thinking maybe I won't take any chances. Thanks for all the help.
New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, December 10, 2016 11:18 PM (GMT -7)
There are a total of 2,736,222 posts in 301,362 threads.
View Active Threads


Who's Online
This forum has 151452 registered members. Please welcome our newest member, sarajseri.
193 Guest(s), 3 Registered Member(s) are currently online.  Details
geop, jrpsf, (Seashell)


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer