Epilepsy?

[Debbie41]

Hello everyone,
I have read a bit about epilepsy but it still seems confusing. I had a tonic clonic seizure 7 years ago. MRI and CT clear, no eeg. Had another one 2 years ago (my new baby was only 6 weeks old and I wasn't sleeping). I was driving but thought I felt funny so slowed down and stalled the car and lucky for me and my 2 boys no-one was hurt. MRI and CT clear. Went on 5mg valium to prevent seizures (couldn't go on anything else as I was breast-feeding). Upped to 10mg a few weeks later due to twitching. Eeg showed mild epilep - but neurologist said I didn't have epilepsy and was sleep deprived. Very happy with this. But my doctor said yes and he put me on epilim. Epilim made me but on weight so after 9mths on it I weened myself off in Feb this year. All has been going well until yesterday. I was a bit tried and I didn't have a seizure but it felt like a seizure coming and I couldn't move or talk for about 3-4 minutes (I didn't fall down and lose control of my bladder like my other seizures). I had to lie down afterwards. During the event I could hear my son talking to me but couldn't move or respond. It was a horrible feeling. I was shaky before it and feeling sick. I didn't have a seizure though. I'm just wondering if this is related or more like a fainting spell because I haven't been sleeping well.
Thanks for your help!
Debbie

 

[chmmr]

Hi Debbie, I'm no expert by any means, but it sounds like the episode you describe is possibly a partial or a partial that generalized into a complex partial seizure. Not all seizures cause convulsions like the ones you previously experienced. The fact that you couldn't move or respond, and that you felt ill afterwards and needed to lay down both point towards that episode being far more likely to be seizure related than to a fainting spell. The lack of sleep could also be a trigger for seizures because sleep deprivation is known to lower the seizure threshold. I would definitely book an appointment to see your doctor asap and tell him what happened, as well as letting them know that you weaned yourself off the meds.

http://www.epilepsy.com/epilepsy/seizure_complexpartial

http://www.epilepsy.com/epilepsy/seizure_simplepartial

 

[Debbie41]

Thank you for the links chmmr, that was very useful. Maybe this is what was happening. If this is the case I am very disappointed in myself and upset that I might have to go back on medication. My doctor believes too strongly in drugs whereas I prefer more natural methods. He was ok with me coming off the epilim because I hadn't had any seizures, but I'm sure he will want to put me back on them. I am in two minds 1) drugs for the rest of my life and gain weight or 2) risk a seizure while driving. I still don't believe that I have epilepsy - I do believe the neurologist was correct. I think perhaps I have a lower threshold and there are other ways to help this other than drugs. I'm not sure how to handle this. It's such an intrusion. I have very much respect for all of you going through this.

 

[Nakamova]

I still don't believe that I have epilepsy

The definition of epilepsy is having more than one seizure. So unfortunately, I think epilepsy is an accurate diagnosis. As chmmr says, seizures don't always involve loss of consciousness -- in fact, simple and complex partials are more common than tonic-clonics (grand mal seizures).

The key is not to have the seizures escalate; the more you have, the more likely you are to have them in the future. I understand your reluctance to medicate, but if you continue to have seizures you may want to consider taking an anti-seizure medication. There are many to try, and not all of them affect weight.

In the meantime, do your best to avoid known stressors. Fatigue is the #1 seizure trigger, but many other things can also act as seizure triggers: dehydration, low blood sugar, food additives, certain medications, nutritional imbalances, metabolic issues, hormone fluctuations, illness/infection, environmental issues (flashing or fluorescent lights), emotional stress, etc. Be proactive about your overall health: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

There are non-med treatment approaches. Studies show that the Modified Atkins Diet can help with seizure control; you could look into trying that with doctor supervision. Another approach is neurofeedback. There haven't been long-term, large-scale studies documenting its success, but there are many anecdotal reports suggesting that it can play a role-in seizure control. More info here: http://www.coping-with-epilepsy.com/index.php?p=eeg-neurofeedback

 

[jyearta]

I too agree with the post before me.

I can't begin to know how you feel, with the baby and other children.

I have simple/complex partial, where I can't respond to anyone.

I too agree you need to see a Neur.

YOU ARE NOT ALONE.

-----HUGS------:hugs:

 

[Debbie41]

Thank you guys. I am very upset. Can having the partial seizures lead to more tonic-clonics? Do you know if I lose my driving license with partial seizures? I have lost it once and don't want this again.

 

[chmmr]

Sorry you are upset Debbie Having any seizures can certainly make you more prone to tonic clonics because any seizure given the right conditions can generalize. I believe depending on the state/province sometimes you can drive with partials, but complex partials and tonic clonics are both no no's (you said yourself you coulldn't move or speak and obviously that would be a huge danger for yourself if it happened when driving right? Not to mention to anyone in the car with you and others on the road) So sorry you are going through this. I would definitely be seeing your doctor asap to figure out if they are indeed seizures and what you need to do now. I do agree with Nakamova though, 2 seizures is considered epilepsy so i don't think the diagnosis was incorrect. Hugs

 

[jyearta]

Thank you guys. I am very upset. Can having the partial seizures lead to more tonic-clonics? Do you know if I lose my driving license with partial seizures? I have lost it once and don't want this again.

It's normal for you to be upset, it is when you 1st. are told are find out you have E.
I live in Ga. and I have my license, I don't work anymore, so I only dr. to the store around the corner. I have déjà uv before A complex seizure comes on, I don't dr, on the days I have any déjà uv (which is a partial seizure)

Ask any and as many questions as you like. The more you know the better it will be for you.

I keep posting this, but I have learned more here on this forum than any Dr. ever told me.

 

[Debbie41]

Thank you. I suppose I don't want to believe it. I suppose this has always been happening to a lesser extent but I've not recognised it. I used to get a lot of smacks as a child for not listening. I thought I was a day-dreamer. But I suppose it's getting worse. I have phone meetings and someone asks me a question but I've missed bits so I can't answer. My husband and kids tell me things but I don't remember. I have done a lot of convincing of myself that they are wrong and they didn't tell me something. I don't mind zoning out because it feels ok and I think I can bring myself out of it so not really epilepsy - I don't really know though - could zoning out also be a symptom. Sometimes I laugh when I hear them after they've asked me the same question 5 times. I don't know why I laugh because I wasn't being funny or mean - I just didn't hear them. I always thought I had an attention issue but maybe this is part of it too?

 

[Nakamova]

Cognitive and attention issues could definitely be seizure-related. Even inappropriate laughter can be a kind of seizure. I know exactly what you mean about missing "bits" of a phone conversation. It's as if someone switched my brain's power button on and off very quickly.

 

[Debbie41]

Yes, exactly the on and off of the brain. I know people find me weird sometimes because my conversations can be disjointed. My friends always said it's because I'm intelligent so that's what I thought too! I have 3 degrees and an IQ 176 so all these missing conversations haven't affected my intelligence. I always considered myself a bit eccentric!