anyone have multiple seizure types?

[AlisonBP]

i believe i have multiple seizure types. do other people here have similar experiences? my nuerologist has never told me any classification or diagnosis. after my eeg and mri he just gave me medication and then dischaged me. according to the hospital thats the way it works in this area.

i nearly always get an aura first. then sometimes i will keep full consciousness and can just about hold a conversation while my legs are shaking and my body is starting to stiffen. usually after those i will have one that i partially lose consciousness during. people talking to me will kind of drift in and out and i will be unaware of surroundings. i cant speak or open my eyes and have severe shaking and full body spasms. most of the time i get those ones without the full conscious part.

sometimes my arm will just shake up into the air for no apparent reason or i will lose all perception of time and forget wha a conversation is about halfway through.

sometimes i feel like a fraud or like i'm just crazy. i grew up with the impression that seizures have you on the floor, unconsious and unaware of anything thats happened. all learnt from tv of course. i've even had a neighbour refer to me having 'fake epilepsy' after witnessing me talking and laughing with my friend while my legs shook uncontrollably. it was hard to talk as my stomach started to spasm too but my friend knows i'm usually aware to some degree at least at some point and knows that it scares me so he will make jokes or sing songs that he know will annoy me (usually favourite things from the sound of music and he will deliberately get the words wrong) or ask me completely inappropriate questions to try and give me something to focus on other than fear. when people see the way we deal with the situation they seem to think it means its not really that bad or that i'm just doing it for attention

 

[Nakamova]

Hi AlisonBP, welcome to CWE!

I only have tonic-clonics (the "traditional" epilepsy), but LOTS of folks here on CWE have simple partials, complex partials, myoclonic jerks, atonics, and all sorts of combinations thereof. You'll hear from them soon I'm sure! And you're absolutely right -- there's a lot of misunderstanding and skepticism about the lesser-known different seizure disorders, even though they can be harder to treat and more disruptive.

Is there any way you can get a note from your doctor explaining your seizure disorder and how it manifests? Is there any brochure or handout to give to folks who just don't understand?

Best,
Nakamova

 

[Meetz1064]

First off,

if you think you're having multiple seizure types, or seizures period, you NEED to get more of an explanation from your neuro. And if he's not willing to give one, FIND ANOTHER NEURO! YOU pay THEIR salary, so THEY should be giving YOU the information about YOUR medical diagnosis, NOT brushing you off like they are some sort of god or something.

I, too, have multiple seizure types, though mine are in my sleep. Mine are also under control--except under severe stress--and I haven't had a tonic clonic in 7 years as of last week.

I'm sure that like Nakamova said, you're going to find plenty of people coming out of the woodwork here to share their experiences with you about their seizures. So sit back, relax, and feel free to check out all of the nooks and crannies. Make plenty of friends--there are plenty of us here to lend an ear, if needed, a Padded Room to vent in, and a running joke about who's better and wedding dresses--men or women, and who should cook the brats because of it. *scratching head* Speaking of that, I think we need to find Eric, Speber, Buckeye, Arvind and Bernard and make them do some cooking. Hmmm, I forgot someone.... *scratching head* Birdbomb.....where are you? We need to find the guys to cook! Oops, sorry, got distracted.

Anyway, check out the Kitchen and Library too, they're full of information. And you might want to help yourself out by starting an E journal. See if you can figure out what your triggers might be.

Take care. I'm sure you're going to have fun here at the dinner party.

Meetz
:rock:

 

[Literophile]

i nearly always get an aura first. then sometimes i will keep full consciousness and can just about hold a conversation while my legs are shaking and my body is starting to stiffen. usually after those i will have one that i partially lose consciousness during. people talking to me will kind of drift in and out and i will be unaware of surroundings. i cant speak or open my eyes and have severe shaking and full body spasms. most of the time i get those ones without the full conscious part.

That sounds like mine!!! I was diagnosed with non-epileptic seizures, though, but I think it's a misdiagnosis.

sometimes i feel like a fraud or like i'm just crazy.

I feel like that all the time...

You may want to look up frontal lobe epilepsy.

http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=epi&part=ch12#ch12.s81

http://ghr.nlm.nih.gov/condition/autosomal-dominant-nocturnal-frontal-lobe-epilepsy

http://www.epilepsy.com/EPILEPSY/EPILEPSY_FRONTALLOBE

http://www.mayoclinic.com/health/frontal-lobe-seizures/DS00810

 

[epileric]

Oh yes...

I've always had both simple & complex partial seizures and then there's the odd tonic/clonic. I guess I don't get bored this way.

 

[AlisonBP]

thank you for making me feel so welcome. i'm back to the neurologist 14th july. had been under control for 2 and a half years but after a general anesthetic in may they were back with a vengence. it was a general that set them off to start with back in '96.

will definately be demanding more information this time. also need to be firm about my meds. all gp could do was increase my lamotrigine. so now sleepless nights and mood swings.

i know a lot of my triggers- being tired (so sleepless nights arent helping)
stress (mood swings not helping that)
heat (having a lovely summer that i cant enjoy. tried going out alone last week and ended up in a+e)

having quite a few in my sleep. didnt know until i had friends staying with me and they told me. kind of explains those mornings i wake up more tired than when i went to sleep and aching all over. a couple of times since my friend told me its been easier to tell because i'll bite my cheek or i've hit my head on drawers by my bed and woken with a lovely black eye (i have now rearranged my room)

i would never wish this on anyone but it is so nice to find people i can talk to that understand.

feel i know some of you a bit already. last night i was reading 'you know you have epilepsy if....'. stumbled across it after looking somehing up on google. (just realised i got distracted and cant remember what i was trying to look up lol) found it so refreshing to see a sense of humour. the number of times i've tried to deal with things with a joke and had people tell me i shouldnt joke about something so serious. felt as i was the only person they knew with seizures i could get away with it.

 

[RobinN]

My daughter had multiple types when she tried different meds. Now that she is med free the only type she has ever had is a tonic clonic. Lately that also seems to be few and far between. My conclusion is that we are healing her from the inside out with nutrition and vitamin and mineral supplements.

 

[Crystal11]

I have had complex partial seizures since age 6. We all thought they were Absences and I even thought that until a few years ago! I talked to my neuro and she said that they have been Complex partial seizures the whole time. After reviewing my EEG and AEEG, they told me that they are complex partial seizures. I thought it was all in my mind for a long time and my Mom thought that I was just having a spacy moment or "your brain is taking a break"..She just didn't know enough and neither did I. Now I know a lot more! My Twin also has seizures CPs and deafblindness like I do. We support eachother and our roommate also has Tonic-Clonic seizures and a few other types
When I reduced my meds on my own, I would have drop attacks (Atonic) where I would fall half way down to the ground and twice I feel all the way down.. VERY scary and can hurt yourself..I was upset and cried when those happened. Haven't had one sense and hope to not have those anymore. I changed over to Lamictal XR with my Keppra XR and got ride of the Tegretol XR which stopped working and if I missed a dose, I would fall down.
Partial seizures like complex partials and simple partials can be confusing since most people think of the Grand-Mal/Tonic clonic seizures/Generalized seizures..

You said you are somewhat aware during your seizures. Did you ask about what exact type you might have?

You said that your eyes stay closed and you can't speak during the shaking part? Did you tell your neuro this? It might mean something else..
Tell your neuro everything you can possibly think of that you notice when you have a seizure. Sometimes it takes a while for them to figure out.

Your EEG, MRI, CT and other tests rule out seizures due to Epilepsy?

There are other medical conditions that can cause seizure like symptoms that maybe you can be evaluated for..

Take care
Crystal

 

[AlisonBP]

when i see the new neurologist on the 14th i will go through everything with him/her. the last one didnt even tell me what the results of my mri or eeg were. when i went through what things would happen with him he would just mm hmm and write on his pad. he never really told me anything.

hoping to finally get some answers

 

[Aubrey]

I found this site because I maximum-frustrated by my multiple seizure types and the multiple meds that weren't helping perfectly. I started out with frequent tonic/clonics in pre-adolescence, after having those controlled off and on, my combo is: partials, complex or simple, with the occasional t/c thrown in if I get too emotionally invested in a situation; also I have adult-onset absence, complete with unique brain spike, which is supposed to be impossible. That got me referred to an out-of-area epileptologist. I went looking online because I wondered if there was anyone else who had that combination. I am not sure that anyone else on here has my exact combination, but I learned that I am not so unique after all; there are so many different multiple types of epilepsy that people have to deal with on here, when even one alone is problem enough.

 

[AlisonBP]

i wont say i'm glad to find i'm not the only because i wouldn't wish this on anyone but it is nice to know i'm not crazy. my mum has been pushing for me to be crazy. she's just been diagnosed with a mental health problem and she seems to want company. on friday she tried telling me my lamotrigine couldnt give me mood swings and insomnia so i should just admit i need help. tried telling her i've been in regular contact with the gp and he's told me it can do that. she hung up the phone and hasnt spoken to me since

 

[Aubrey]

I think your intuition re your mother may be spot on - that she so wants a companion through HER journey, and for her (though not for you) it would ideal if it would it to be you, her daughter. And so she may be angry when you tell her that your mood swings are attributable to a side effect of the Lamictal.

Society is rife with stories of the mentally ill who are in denial and refuse treatment; therefore some people assume that by denying you have a mental illness when THEY think you have one, you are automatically proving yourself wrong. Sometimes, because of its rarity, its unpredictability, and the fact that at this point in time it is less visible than mental illness in our society, an epilepsy diagnosis may actually be more difficult or frightening for a family member to deal with. I am sorry that your mother is not being supportive. It would be nice if she could see that you are each going through a struggle, even if they are not the same struggle, and be supportive based on that alone.

 

[AlisonBP]

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ok so i went to the neurologist today and he finally said it is epilepsy. guess thats good. whats not so good is that he has decided to cure my insomnia i should lower my meds. problem is its only this higher dose that has had it under control.

not looking forward to doing that but trying to not think about it much as i dont want to bring on a seizure through stress. he has discharged me even though it was my first appointment in nearly 3yrs and he'd only seen me for a few minutes. this means if things get worse i have to be re referred which means another 2mths on the waiting list.

tried to talk to him. he asked what kind of seizures i had. told him there was more than one. saw him write tonic clonic seizures after i'd described one type. when i went to describe another he ignored me and asked my friend if he'd seen any and what they looked like. i know its good to get an outside view but surely he should want to know what level of consciousness i have. only i can explain that. also my friend has only seen a couple. not like my other friend who has looked after me for weeks and seen 10 in one day before. i wasnt even allowed the time to say what he had seen.

dont know if i should ask for a second opinion or try it and if i need re referring ask to see my old neurologist not this new one. at least the old one would listen to what i said and not act like i have no idea what i'm talking about.

oh and he repeatedly told me that lamotrigine is more likely to cause drowsiness than sleep disturbance. grrrr

 

[RobinN]

FYI - there are connections between celiac disease or gluten sensitivity and mental health issues and seizures. There is an increase in the possibility if one person shows a sensitivity that a family member will be too.

 

[AlisonBP]

need to look into more things to try. things have been slightly better since i've been going to the gym regularly. hoping exercise is helping. it helps reduce my stress levels so maybe that has something to do with it

 

[rangerwvu]

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ok so i went to the neurologist today and he finally said it is epilepsy. guess thats good. whats not so good is that he has decided to cure my insomnia i should lower my meds. problem is its only this higher dose that has had it under control.

not looking forward to doing that but trying to not think about it much as i dont want to bring on a seizure through stress. he has discharged me even though it was my first appointment in nearly 3yrs and he'd only seen me for a few minutes. this means if things get worse i have to be re referred which means another 2mths on the waiting list.

tried to talk to him. he asked what kind of seizures i had. told him there was more than one. saw him write tonic clonic seizures after i'd described one type. when i went to describe another he ignored me and asked my friend if he'd seen any and what they looked like. i know its good to get an outside view but surely he should want to know what level of consciousness i have. only i can explain that. also my friend has only seen a couple. not like my other friend who has looked after me for weeks and seen 10 in one day before. i wasnt even allowed the time to say what he had seen.

dont know if i should ask for a second opinion or try it and if i need re referring ask to see my old neurologist not this new one. at least the old one would listen to what i said and not act like i have no idea what i'm talking about.

oh and he repeatedly told me that lamotrigine is more likely to cause drowsiness than sleep disturbance. grrrr

I think that you and I should give him some of our Lamictal and dare him to take it for 2 weeks and then he can try to sleep normally every night ! lol.

Lamictal works well for me but it also causes huge sleep problems as it does for you. I hope that you can find some great medical care/monitoring soon...I have had a couple of similiar experiences myself and know how hard it can be...most of the Nuerologist do like to hear from someone who has witnessed seizures but there should never be less attention on what you are sharing. I have been to several over the years and it does seem as the Nuerologist who have the best attention to the actual patient have less knowledge/actual skill than the Neuros who are basically jerks. As far as sleep goes, something that took me quite some time to learn (ok, I am a bit slow..even after 2 docs told me.) was that I needed to break down and take one more pill...ugh. I usually take Ambien every night and FINALLY get much needed sleep. I have done this for almost 2 years now. I now take 550 mg of Lamictal per day. I was able to drop back from a high of 650mg. I dont seem to be able to go lower without the siezure activity level really jumping up, so the sleep problem remained. It has worked well for seizure control, but the sleep issue had to be resolved...lack of sleep leads to seizures; or at least it was one of the big triggers for me.

 

[Ivanatron]

HI Rangerwvu

That's very interesting about your insomnia..I'm on lamictal as well - 500mg per day - and I can't seem to get enough sleep! I sometimes get dizzy and only slightly lose my balance..sometimes I have issues finding words too...english is my second language, but for some reason I can only remember a word in my mother tongue and not english...even though it's a word I use on a daily basis...very strange....just goes to show how unique every one of us is..medication affects each one of us in a different way...
I hope that you can start sleeping well soon...it's so frustrating when you're laying in bed wide awake for hours..

 

[Endless]

Hi, Ivanatron,

I'm on Lamictal, and I get dizzy, too. Be sure to tell your doc about that. He may reduce your dose.

You sleep lots? I can barely sleep at all. I typically get between 3-4 hours a night. 4-5 if I take a sleeping pill, but the sleeping pills hurt my stomach and make me groggy all day.

I also feel like I'm hopped up on speed. This isn't a good thing. It's not nice, calm energy like I used to have before I was on the meds. It's like I'm a car with the pedal to the metal, but the parking break is on. I just kinda vibrate with energy. It's no help for getting things done, and it feels really icky.

 

[sbncmo]

Hi Alison,
Welcome to the group. I see you have been here since June, but I didn't see your post until today.

I have several types of seizures - myoclonic, tonic, complex partial & simple partial (sensory & psychic). It has been a major ordeal with me because I can't take ep meds. I'm finally on a new one, Vimpat, & seem to be handling it okay, but it isn't controlling all the seizures.

I was told 15 years ago that I had a "seizure disorder", but nothing was explained about it. I went thru a few different meds, another eeg showed I was still having seizures, & I was tried on other meds. My neuro stopped public practice (works only at a hospital now). I went of my meds for a couple of years & the seizures came back. I saw a new neuro, eeg showed multiple seizures, started the med merry-go-round. I didn't know "seizure disorder" was epilepsy until I did my research & found out that there are about 40 different types of seizures. I was told bymy current neuro that the term seizure disorder is used now because of the stigma associated with the term epilepsy. People hear epilepsy & they think of the falling on the ground type - the grand mal. I'm 46 & I've actually had seizures since I was a year old. I had grand mals until I was 5, along with absence seizures, which continued thru my teens. When I was 18, I started having complex partials, although I didn't realize this until just a couple of weeks ago. And I've had the other types for a number of years.

I suggest you get with a neuro that you are comfortable with & see him/her regularly. You should not be discharged from a doctor when you have an ongoing ailment. So I hope you find someone who will keep treating you, treat you with respect & that you like.

Shelia