Anyone with nocturnal only seizures?

Posted by kkendrick5 @kkendrick5, Nov 17, 2023

I have had nocturnal seizures since around 1978. I have never had a seizure when awake. These are of the grand mal seizure variety and vary in the severity. I long ago quit taking any medicine for this. Back in the early 1980's I was on dilantin, I felt like a zombie when I was taking it. My seizures only happen between 6 months and 3 or 4 years apart. Mostlymore than a year or more apart. I felt that since there was a long period between seizures I could handle it. Anyone experience anything like this?
Thanks, Ken K.

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My situation is similar. I have grand mal/tonic clonic nocturnal seizures that are years apart. During my last seizure in 2020, I suffered a vertebral compression fracture. Turns out I have osteoporosis. I never want to suffer the pain of a fracture like that again, so I've stuck with the medication, Lamotrigine. If I weren't afraid of breaking another bone, I would get weaned off of it without hesitation.

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I have had them only in my sleep for about 12 years. Neuro put me on Keppra (levetiracetam generic). They were about a year apart I think, Only problem is loose stool. However, there are some people who said they had other issues. Search it using Keppra for their comments.

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@keppraeffect

I have had them only in my sleep for about 12 years. Neuro put me on Keppra (levetiracetam generic). They were about a year apart I think, Only problem is loose stool. However, there are some people who said they had other issues. Search it using Keppra for their comments.

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I was originally on Keppra. Like @kkenrick5, I felt like a zombie, but no other symptoms. I switched to Lamotrigine, and quickly felt better, still like a zombie at times, though interspersed within long periods of near lucidity. I often wonder what I would feel like--how clear my mind would be if I went off the med. I'd really like to. It's completely understandable why anyone would prefer not to be on an AED.

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I have had grand mal seizures approximately every 10 years. All my seizures have been during a night of restlessness. I decided to try eliminating alcohol, increasing exercise, try for a restful 8hrs / night and stop taking my medication (Dilantin + Valium) I was off my meds for about 8 years before having a seizure. I am on Lamotrigine + Depakote now.

History of medication combinations:
Zarontin + phenobarbital
Dilantin + Valium
Lamotrigine + Depakote

Valium has become the rescue medication. If I feel a seizure coming on I can take valium and I am relaxed enough to get some restful sleep and then I am back to normal.

Every medication comes with a side affect. Talking to my doctors regarding the side affects has been the most effective approach for me.

First GM seizure was in the early 70s.

-Greg

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Ask your neurologist about clonazepam. An epileptic drug. I take 1 mg. prior at night. I fall asleep quicker and sleep much better.

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I was diagnosed in 2022 with nocturnal seizures. Couldn’t take Keppra due to excessive weakness. Taking Lacosimide now which is working, I guess (?). Have gotten up several mornings feeling very tired and weak - did I have a seizure? I don’t know. Poor sleep and cannot keep CPAP, BIPAP, EPAP on. Question is this: is my increasing depression due to med or
seizures? Is my crying all the time due to depression, med, or seizures? I cry at practically anything. I feel like I am going in circles …

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Hi @baa
Lacosamide or Vimpat was for me the worst AED I have taken, giving me many side-effects, including the ones you have mentioned. I got into severe depression with this medication.
How long have you been taking it? If you have been taking it for more than 3 months (side-effects will not disappear), I would in your place talk to your doctor and change it to another medication. My doctor did not want to change it after taking it for almost 10 months and feeling very bad, so I changed doctors at that time.
What kind of epilepsy do you have again? I remember you mentioning it, but can not recall it now.
Wishing you better days!
Chris (Santosha)

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@santosha

Hi @baa
Lacosamide or Vimpat was for me the worst AED I have taken, giving me many side-effects, including the ones you have mentioned. I got into severe depression with this medication.
How long have you been taking it? If you have been taking it for more than 3 months (side-effects will not disappear), I would in your place talk to your doctor and change it to another medication. My doctor did not want to change it after taking it for almost 10 months and feeling very bad, so I changed doctors at that time.
What kind of epilepsy do you have again? I remember you mentioning it, but can not recall it now.
Wishing you better days!
Chris (Santosha)

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Thank you so much for answering. I have nocturnal tonic-clonic seizures. Trying to locate more specific but struggling this morning. Before I started having seizures however, I had a very bad situation in family causing awful stress. So confusing as to origin of depression

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My pleasure @baa!
Stress is still the main trigger of my seizures and I try to compensate for it with yoga.
In the words of Indian writer Rupi Kaur, depression is silent, it arrives when you least hear it and suddenly becomes the loudest voice in your head.
Do you have the support of a neuropsychologist? The support of my neuropsychologist has been of fundamental help in those grey days I have experienced while taking Vimpat.
Chris (Santosha)

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Thanks Santosha. There are no neuropsychologists in this area that I can find. No support group that I can find. Probably have some in city several hours away but I would not be able to get there presently. I appreciate your feedback - I’ll keep searching.

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