Epilepsy & Seizures Support Group
Epilepsy (often referred to as a seizure disorder) is a chronic neurological condition characterized by recurrent unprovoked seizures. It is commonly controlled with medication, although surgical methods are used as well. Seizures (or convulsions) are temporary abnormal electrophysiologic phenomena of the brain, resulting in abnormal synchronization of electrical neuronal...
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Hello, everyone,
I'm finally posting a few questions about my epilepsy, I've mostly been focused on my other two problems - multiple sclerosis and sleep problems.
I'm finally posting a few questions about my epilepsy, I've mostly been focused on my other two problems - multiple sclerosis and sleep problems.
I've asked this same question on another forum a few days ago, but got no responses, so I hope I'll find a patient and sympathetic heart here.
I am a 30-year old man. I suffer from multiple sclerosis and also epilepsy, which is, they say, a result of the MS.
I've had what I call "mini seizures" for over 10 years now, and one big one (grand mal) about two years ago.The smaller ones always manifest in the same manner, they would wake me up in the morning, I would get a sudden shock in my head, my heart starts racing like crazy, sometimes I got a sort of a strange taste of iron in my mouth, and before therapy I used to also get deja-vu symptoms and sometimes a twitch in my left arm. Those attacks were ignored by my MS doc, with the explanation that I have some kind of vasovagal syncope (?), and it took the grand mal for them to start taking treating me seriously for it.
I was put on Depachine (valproat) 600 mg and Trileptal (oxcarbazepine) 600 mg. The deja-vu feeling after that disappeared, and there was no more twitching, but despite upping the dose to the maximum I still get the heart-pounding and that sudden feeling in my head like a shock and like I will drop to the ground. So the attacks are for sure less severe, but definitely still there.
Sorry for the long intro, here are the questions for which I would love to hear your input.
- my attacks happen regulary almost like clock work - about once a month. When I wake up with my heart pounding, I know that that day I will have about 10 of those episodes. On those days I don't,for instance, drive my car or bike and I try to avoid noisy places. On other days, though, I can guarantee that no seizure will happen. Is this normal? Anyone else have regular seizures like those and feels absolutely fine on other days?
- is there a chance some other drug will work if a combination of two drugs isn't enough?
- how important is it that therapy completely gets rid of seizures, even the smaller ones? My neuro kept upping my dose until I said I'm cured now, which is a lie, I'm feeling ALMOST fine . But I've decided that I can,at least for now, live with this partially efficient therapy, as long as it helps me not to lose conciusness.
- finally, I am afraid of SUDEP. Does the fact that my epilepsy is not FULLY under control increase my chances of this sudden death thing?
Thanks to anyone who reads, better yet responds, I know it's long but I've finally got around to asking this, I've been planning it for so long.
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Hi All.... It's great to see all of the new people joining the site... I'm loving it!!...smileI'm not sure if people are aware that if you don't have Bipolar Disorder but have a loved one who has the disorder we do have a board for people to go to in order to share their experiences and seek friendship, support or adviseIt's the Friends and Family of Bipolar Board.... I hope you'll take a...
You need to talk to your Neuro and give him the correct information so he can treat you properly.
Take care.
Yeah, I suppose you're right, I didn't think of it that way. I apologize to the group.
All I originally wanted to know (before those other questions popped to mind as I was writing) was whether others have seizures in this fashion, appearing at particular times almost like clockwork, and then are perfectly fine the rest of the time.
I find it strange, so I wanted to see if anyone else experiences attacks like that.
I know your seizures are complicated by your MS (so sorry cause that sucks) but I still believe we can all benefits by taking really good care of ourselves. I am not suggesting that you not take meds, I am just saying that traditional numerology offers pharmacological treatment ONLY and there are other things you can do to lower your risk of seizure without any risk to your health.
So...to answer your question- YES, my seizures were happening when I had not eaten in a long time and my blood sugar was low and the moon being full did not help...go figure!
thanks for your reply.
Wow, what a connection - sugar levels and seizure activity. It never would have occured to me, though it is possible, why not.
My attacks also always start in the early morning, and I usually feel kinda queezy that whole day. I've tried out some of my theories (increase the dose of antiepileptics/more coffee/less coffee/Valium pills/melatonin pills...), but nothing seems to help. Only a night of sleep "resets" my brain and I can relax until the next month.
You say you've made changes to your lifestyle. Have you found a way to minimise the seizures on the days when you see they are happening? For instance increasing your sugar levels since those could be a trigger.
Let stuff go, do not let other people's drama be your drama...stress is literally the worst thing for us. Just avoid it any way you can.
Gentle exercise...a walk goes a long way or whatever makes sense for you...even meditation.
Have a small snack before bedtime (so your blood sugar doesn't get too low in the night) and go to sleep and get up at the same time each day. No naps, they throw everything off. Believe me I love a good nap but unless I am completely exhausted I try to avoid them
Eat in the first half hour after getting up. Just put something in your stomach and don't skip meals or go for long periods of time without food. When I was seizing a lot I would skip breakfast and lunch...not good for me. It doesn't have to be much...but eat regularly
Eat well, low sugar whole foods, try to stay away from processed foods with lots of additives in them.
Pay attention to your auras, we all have them. The feelings you have right before you seize. You may feel queezy, light-headed, deja vu. I smell things that aren't there, gasoline or skunk...Anway, pay close attention to what you feel like right before you have a seizure and then when you start to feel those feeling immediately sit or lay down (in a quiet spot) regulate your breathing, close your eyes...try to relax. I can always stop losing consciousness this way. I may still get the headache and the nausea and feel all wonky for the next few hours BUT I do not seize.
Good luck friend, this is no fun but if you can ward off even one seizure it makes you feel more in control of your life. Keep me posted on how you are doing. xo
It takes practice, I am not saying it works for everyone but it worked for me.
Thanks again and good luck to you as well!