My seizures - Frustrating!

[Jun]

Hi everyone,

I know my seizures are nothing compared to the severity and frequency of others, but at the same time, these days have been getting frustrating!

Currently on tegratol and frisium.ve had seizures since I was about 15ish...right around the high school days. My convulsions have always been minor - only lasting a minute or so.

The frequency have always fluctuated depending on what I'm dealing with in my life, for example when I was a university student, with all the stress and etc, I would have one roughly once a month. After my school days though, seizures became less frequent...maybe three or four per year.

I'm now turning 33 this year. My seizures prior to Sept 2017 (from my recollection) have more or less been predictable...i.e.: I would have aura's and have a couple hours or a day to branch for impact, but recently (post September ) I've had threes- four seizures spanning from thanksgiving 2017 until now, and during these episodes, I've noticed that I don't have aura's and/or that brace for impact period. I would only feel like I am going to have a seizure when I feel my arm stiffening up, which is basically when I start convulsing.

This has me worried. Because I don't have that branch for impact window of opportunity to get out from whatever I'm doing....whether it be when I'm at work - to hide or go home, or if I have plans with friends, so that I can cancel.

I knoooow everyone's seizures are different and people are on different meds and doses of meds and etc.

I'm just looking to see if people have had similar experiences of losing their auras and hsving more seizures, or any other advice or comment.

I would greatly appreciate it!

Many thanks!

 

[finalpoet]

Well I have to admit that I've never had a warning for my seizures. For a partial I just lose my speech briefly and a grand mal, I just transport either to the ground or hospital. I hate saying, but I wish I had a warning because, like you, I would plan accordingly.

Without ANY warning, I would say you're in the same boat as me. So I have nothing to preemptively tell me, but without prior knowledge I still don't avoid hot things, or stairs, maybe I should but I don't. I just live life as usual.

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[ferchaleal5]

Hi everyone,



I know my seizures are nothing compared to the severity and frequency of others, but at the same time, these days have been getting frustrating!



Currently on tegratol and frisium.ve had seizures since I was about 15ish...right around the high school days. My convulsions have always been minor - only lasting a minute or so.



The frequency have always fluctuated depending on what I'm dealing with in my life, for example when I was a university student, with all the stress and etc, I would have one roughly once a month. After my school days though, seizures became less frequent...maybe three or four per year.



I'm now turning 33 this year. My seizures prior to Sept 2017 (from my recollection) have more or less been predictable...i.e.: I would have aura's and have a couple hours or a day to branch for impact, but recently (post September ) I've had threes- four seizures spanning from thanksgiving 2017 until now, and during these episodes, I've noticed that I don't have aura's and/or that brace for impact period. I would only feel like I am going to have a seizure when I feel my arm stiffening up, which is basically when I start convulsing.



This has me worried. Because I don't have that branch for impact window of opportunity to get out from whatever I'm doing....whether it be when I'm at work - to hide or go home, or if I have plans with friends, so that I can cancel.



I knoooow everyone's seizures are different and people are on different meds and doses of meds and etc.



I'm just looking to see if people have had similar experiences of losing their auras and hsving more seizures, or any other advice or comment.



I would greatly appreciate it!



Many thanks!

Hey.. well totally get what your frustration and yes everyone is different im 29 and i started having seizures last year for the first time... its been 9 month since i started and i get between 25-35 a month so yea frustration is the main word also being tired all the time ... headaches every day when i get my seizures.. i do not have auras i never had them since i have nocturnal seizures... i dont sleep because usually i get them in clausters the worst one was one night 11 seizures dam i finally gave up trying to sleep that night because every time i tried a seizure started so i was sleep deprived so more seizures the following days the last month its been hell since im a chef and there is a lt of stress in my line of work so even more seizures and i feel like my body got hit by a train i pulled a beck muscle and since the sz dont stop i dont get better so i have to call in sick i have tried about 5 different meds and dosages and they still cant get them controlled so probably dr said that next steps are goingto be a bit more aggresive i still do t get what more agressive can they be if in already with 3000 mg keppra 20 mg onfi and some clonazepam so... i dont know sometimes i get frustrated, angry etc i find venting with my best friends helped me since i cant do nothing else than pray they will get them contrulled soon ...


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[Nakamova]

Aura, no aura, partials, t-c's — it all messes with your ability to plan, even if you know what's coming. Unfortunately seizures can and do change over time, in unpredictable ways. It sucks.

If your seizures change in frequency, duration or kind, then let your neuro know. Ideally, you and your doc can work to get control of the seizures before the new pattern gets hard-wired. A tweak in the dosage of your AEDs may help.

 

[Porkette]

Hi Jun,

I always have more seizures in the fall and winter compared to the spring and summer and my Epileptologist told me I'm having "seasonal seizures" which means do to the lack of serotonin in the fall and winter I will have many more seizures and they are more severe. I have both absence and complex partial seizure and during this time of the yr. the seizures last longer and often I get a aura before the complex partial but during the fall and winter I get no warning and the seizures last longer and it takes me a couple of days to get my act back together again. Try going on YouTube and listening to ocean waves or serotonin music. It's the frequency that helps calm the nerves down. I wish you the best of luck and May God Bless You!

Sue

 

[Sabbo]

It's important to see your neurologist because of the change. Keep track of them. I've kept track of all my seizures (simple & partial) since 2008. I also record ANY odd feelings I have in my head. If I happen to get very different or strong seizures (or many of them despite my taking my meds), I make sure that my neurologist is informed about them.