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[Lissy92]

Hi I'm new to this site and just want to tell about my situation.. I was diagnosed with epilepsy in 2012 aged 20 but have had epilepsy since I can remember without knowing it was epilepsy. I have temporal lobe epilepsy and have complex partial seizures but they have recently progressed to secondary generalised seizures. I used to have complex partial seizures twice a month having multiple seizures throughout day but they changed to having them more often throughout the months. The seizures usually start with and aura ( déjà vu and just knowing I'm about to have one and then just blanking out remaining conscious but in my own world and having really weird feelings I can't even explain. I find it so hard trying to explain to people the way they feel, they're always different but I always feel fear. When I was young I used to say that I was having something funny in my stomach and run close to mum and stand on a mat, rubbing my tummy and looking around the room. Mum never picked up on it as epilepsy she and my family just thought I was nervous. I wish I was diagnosed when I was young but oh well.. I then began having laughing/crying fits. When they happen I just feel either really energetic and start babbling or just really sad and start crying and laughing. Both the complex partial seizures and these laughing fits I can remember the whole seizure but just can't control it. With the blank out seizures I can normally remain my usual activity but just not be with it. Anyway I was put on epilem 500mg twice a day and keppra 1500mg twice a day which controlled seizures for about a month but unfortunately the seizures returned but after a while the laughing/crying seizures stopped and the blank out seizures remained. I stayed on this medication from 2012 until this year recently I was being weaned off the medication to start a family when I had 2 generalised seizures can't remember either of them but my Neuro started me on lamictal which so far is working pretty well. The first 3 months I was seizure free but I then had a couple of partial seizures so he upped my dose, now on 125mg twice a day. I've just began having auras while going to sleep they constantly wake me up as I'm drifting to sleep (very annoying) and also had 2 nights of weird twitching and jerking without having a seizure both times I was really tired. Anyone experienced this? Do you think it could be the meds or something new I might be experiencing? When it happens I feel weird I feel like I'm someone else and start explaining to my partner what I'm about to do next. Both times I tried breathing properly and it eventually stopped. I hate it though as it makes me scared to go bed now, I really don't want to start having seizures again because I'm really liking the lamictal. Also I'm planning to start a family in December and I'm really scared about being on meds while pregnant. Has anyone been on lamictal while pregnant? And did you breasts feed successfully? I really am hoping to breast feed. Sorry about my massive thread lol it just feels really good talking to people who also have epilepsy. It's hard for people without epilepsy to truly understand and know how it feels. Thanks heaps

 

[Jezy]

Welcome, I have had tonic seizures usually but not always at night shortly before I wake up and have the weird feelings before I have them. If you don't try to get enough sleep there is a good chance you will have more sleep ones so try and get enough sleep even though they are scary. I have taken Lamictal for a long time and it seems to work best although I also am taking Keppra. you are so right it is hard to explain how it feels. Good luck.

 

[masterjen]

Hi Lissy 92 and welcome to CWE
Jezy gives great advice about making sure to get enough sleep; that can make a huge difference for a lot of people.
Triggers for seizures can change over time so if you haven't done so recently you may want to keep a seizure journal to see if you can pin-point things that will bring one on - eg. keep track of what you ate and drank each day, what you've done, type of day (such as stressful work day) and your mood, how much sleep you got the night before, physical activity, medications and other supplements consumed, etc. etc.
A woman's hormone levels can change over time, including if a birth control pill was started or dosage was changed. Some anticonvulsants can affect birth control pills as well, and maybe this influences hormone levels (I'm not sure, but your neurologist could tell you).

 

[Lissy92]

Hi Jezy, thanks soo much for your advice. I definitely agree with you, sleep is so important. I go to bed really early 7:30pm lol but yea the auras at night time are annoying, they're a new thing since starting the lamictal and my normal seizures improving.. Not sure if the auras are happening so much because my normal seizures are trying to happen but the meds are controlling it so the auras result and the twitching as well.. The auras at night normally keep me up for an hour or so and then I drift to sleep I find breathing properly helps heaps. Glad your meds are working well for you, it feels soo good when seizures are controlled thanks heaps again

 

[Lissy92]

Hi Lissy 92 and welcome to CWE
Jezy gives great advice about making sure to get enough sleep; that can make a huge difference for a lot of people.
Triggers for seizures can change over time so if you haven't done so recently you may want to keep a seizure journal to see if you can pin-point things that will bring one on - eg. keep track of what you ate and drank each day, what you've done, type of day (such as stressful work day) and your mood, how much sleep you got the night before, physical activity, medications and other supplements consumed, etc. etc.
A woman's hormone levels can change over time, including if a birth control pill was started or dosage was changed. Some anticonvulsants can affect birth control pills as well, and maybe this influences hormone levels (I'm not sure, but your neurologist could tell you).

Hi masterjen, thanks for your reply yeah I agree a lot with getting enough sleep also, sleeps soo important. I do love my sleep and normally sleep so well so that's why I'm annoyed at these auras disturbing my sleep lol hopefully they improve over time.. Love your idea on the seizure journal I'm going to start one now, good idea it definitely sounds like it would help knowing what might bring a seizure on. I'm not on birth control but I agree with you. I do find that I had more seizures around normal hormonal changes, I think stress is also a trigger, but then again they also happened when I was relaxing at home watching tv, who knows.. I hope one day they find a cure for epilepsy to help us all thanks again

 

[Jezy]

You might be right, I have been getting the twitching at night and hopefully it is the meds stoping a full blown tonic seizure. I have a nine year old son so going to bed at 7:30 sounds great but not happening, lol. I am also going to start a journal.

 

[Zoe]

Hi Lissy92 and welcome to CWE. Keeping a journal, like Masterjen suggested, can be a great help to you. Try and note all the details, like sensations you felt, how long since you had eaten before going to sleep, what you drank, what you were doing, tv, reading, or if you’d been upset, relaxed, worried, any detail you can think of.

Over time, you may see a pattern to your seizures, like more on the nights you were watching tv, were upset, or something else. Have you tried a google search, like “causes of nocturnal seizures”, That may link you to information that applies to your situation. You may also want to search “electrolytes nocturnal seizures” or “catamenial nocturnal seizures” seizures triggered by homonal changes. These are very common in women. Whatever turns up you may want to search and see if your meds might also be a factor. “Sleep disorders nocturnal seizures” is another search that may give you some ideas on the cause and how to treat them.

 

[Belinda5000]

Hello Lissy92
welcome to CWE,
I was diagnosed in 1964 at the age of two I'm 53.I have tonic-clonic , absense generalizel,
complex partial and simple partial sz's. My nocturnal sz's sometime I just scream out. I don't get aura's. I've been on more than 20+ drugs. I have refractory epilepsy/intracable and my husband also has epilepsy but he was one of the lucky one who's surgery worked and he had it in 1972. I had surgery on my RTL in Montreal.Canada in 1982. It was the worst mistake I ever made.

 

[Ruth]

Welcome to CWE Lizzy92. This forum was made out of love by Bernard for his wife Stacy. That love permeates throughout the whole forum.

 

[Lissy92]

Hi Lissy92 and welcome to CWE. Keeping a journal, like Masterjen suggested, can be a great help to you. Try and note all the details, like sensations you felt, how long since you had eaten before going to sleep, what you drank, what you were doing, tv, reading, or if you’d been upset, relaxed, worried, any detail you can think of.

Over time, you may see a pattern to your seizures, like more on the nights you were watching tv, were upset, or something else. Have you tried a google search, like “causes of nocturnal seizures”, That may link you to information that applies to your situation. You may also want to search “electrolytes nocturnal seizures” or “catamenial nocturnal seizures” seizures triggered by homonal changes. These are very common in women. Whatever turns up you may want to search and see if your meds might also be a factor. “Sleep disorders nocturnal seizures” is another search that may give you some ideas on the cause and how to treat them.

Hi Zoe, thanks for your advice. The seizure does seem like a great idea, it would be very helpful knowing what may trigger seizures, hopefully I see a link I haven't googled causes of nocturnal seizures or electrolytes nocturnal seizures yet, but good idea I will have a search. I have read info regarding catamenial seizures before and I did relate a lot to the symptoms, I had a hormone blood test but it resulted normal. I think blood tests for hormonal imbalances etc may be hard to detect as they're always changing. I have mentioned to my Neuro about seizures around menstrual but he didn't say too much. I will have another google search regarding catamenial seizures but search nocturnal catamenial seizures as you suggested, it may help thanks again for your advice, I'll have a google search today and hope to find some answers

 

[Lissy92]

Hello Lissy92
welcome to CWE,
I was diagnosed in 1964 at the age of two I'm 53.I have tonic-clonic , absense generalizel,
complex partial and simple partial sz's. My nocturnal sz's sometime I just scream out. I don't get aura's. I've been on more than 20+ drugs. I have refractory epilepsy/intracable and my husband also has epilepsy but he was one of the lucky one who's surgery worked and he had it in 1972. I had surgery on my RTL in Montreal.Canada in 1982. It was the worst mistake I ever made.

Hi Belinda5000, sorry to hear about your unfortunate refractory epilepsy/intractable that would be horrible not being able to treat your seizures and having tried 20+ meds would be very hard and draining! it's hard enough just starting the first set of meds let alone trying 20+! Your husband is lucky the surgery worked for him but unfortunate not for you.. I would be so scared to try surgery you're very brave. Thanks for sharing your story, kind regards

 

[Zoe]

Hi Lisssy92,

Be surre and let us know what you find out in your searching. We are always learning new things about managing seizures.

 

[Lissy92]

Welcome to CWE Lizzy92. This forum was made out of love by Bernard for his wife Stacy. That love permeates throughout the whole forum.

Hi Ruth and thanks for your welcome your right that love definitely permeates through the forum. Stacey has had a very long journey.

 

[Lissy92]

Hi Lisssy92,

Be surre and let us know what you find out in your searching. We are always learning new things about managing seizures.

I'll keep you updated

 

[Jezy]

Yes, keep us updated on anything about nocturnal seizures and I will.do the same

 

[Belinda5000]

Hi Belinda5000, sorry to hear about your unfortunate refractory epilepsy/intractable that would be horrible not being able to treat your seizures and having tried 20+ meds would be very hard and draining! it's hard enough just starting the first set of meds let alone trying 20+! Your husband is lucky the surgery worked for him but unfortunate not for you.. I would be so scared to try surgery you're very brave. Thanks for sharing your story, kind regards

Lissy92

I'm just like anyone else except when I have a seizure, and I wouldn't want to be like some of these so called "normal people" I never did drugs in school and and never hung out with people like that.If someone can't except your seizures and they say there a friend there not a true friend.I excepted my epilepsy when I was a teenager.I know I'm different and that just shows I'm determined more. My husband is my rock and he is always there for me, thanks you for the compliments and I feel as I when people ask me about my attitude I say that's life.

 

[Nakamova]

Hi Lissy, welcome!

You were asking about Lamictal and pregnancy. Plenty of folks have had healthy babies while on Lamictal. There are risks with AEDs, but you should also weigh them against the risk of having a seizure while pregnant. The main thing is that your neurologist and your OB/GYN need to be on the same page in coordinating your care. Lamictal levels need to be monitored very closely during a pregnancy, since the clearance rate is sped up by higher levels of estrogen. Similarly, after delivery, Lamictal levels may need to be reduced since estrogen levels will drop as well.

Below are a few CWE threads that you might find of interest:
http://www.coping-with-epilepsy.com/forums/f23/pregnancy-epilepsy-lamictal-8803/
http://www.coping-with-epilepsy.com/forums/f23/pregnant-have-been-pregnant-lamictal-13151/
http://www.coping-with-epilepsy.com/forums/f23/lamictal-pregnancy-12871/
http://www.coping-with-epilepsy.com/forums/f23/lamotrigine-epilepsy-drugs-birth-defects-497/
http://www.coping-with-epilepsy.com/forums/f23/lamictal-want-pregnant-18420/

 

[Lissy92]

Hi Nakamova, thank you soo much for your helpful information weighing the risk I'd rather be on meds than have a seizure while pregnant and just hope for the best thanks for the threads, I'll check them out thanks again, kind regards

 

[Nakamova]

Good luck! and keep us posted.