Can someone help me diagnose my epilepsy.

[Mins]

Hi all, i want to say i am a new member here, i have read a lot since being diagnosed and want to thank everyone for all the great advice i have sifted through thus far.

A little about me: i was normal healthy 27 year old male with no background of and headaches /migraines, seizures or any other health complaint.

Then out of the blue i had a seizure in October 2010. This was tonic clonic seizure witnessed my my brother and many other people.

They did 2 MRI exams (different radiologists) and 2 EEGs. Everything came back normal. There is no history of epilepsy in my family, even second and third cousins have no background of epilepsy as far as we know.

Hence, the Doctor decided not to issue AED after first seizure.

8 months had passed and as i was about to re-apply for my driving license i had a tonic seizure (no clonic part this time), this time witnessed by both my shocked and gobsmacked parents.

Since i have has another MRI and EEG and both came back normal. They started me on Lamotrigine 25mg daily now bumped to 75mg 3 weeks later. So far very few side-effects (after 3 weeks of use).

Now this is where i need some help, the neurologist have not been so helpful this far in identifying my type of epilepsy (i often need to know the exact cause of things just for a better understanding).

Here is some extra info - both my seizures were first accompanied by aura (auditory aura), started with a major buzzing and ringing in my right ear. This aura lasted for 30 seconds and then both my brother and parents who witnessed the seizures explained to me that i started to jerk my head and arm while standing. This lasted about 5 seconds before i fell down and moved onto a generalised seizure.

Hence, this must mean i had a partial seizure which progressed to a generalised seizure. I think this is still classified as idiopathic partial epilepsy with auditory aura??? Am i correct assuming this based on my symptoms and diagnosis.

Here is a study i found regarding non-familial partial epilepsy with auditory aura. (sorry could not post hyperlink due to being new member). Here is link you can copy to google or address bar:
http://brain.oxfordjournals.org/content/127/6/1343.full.pdf

If someone can be kind enough to help me diagnose my exact type of epilepsy i would be very grateful. Reading the study (linked above) i feel this fits my type of epilepsy - i could be wrong, if so can someone please point me in the right direction.

Just a little extra information, i have never had a partial seizure in my life apart from the two described which led to generalised seizure (both at exactly midday time of day). I have never had a seizure in my sleep according to my girlfriend of 7 years.

Sorry for very long first post, i would be very grateful to anyone who can help me. I hope to learn and contribute more in this forum and will try to help and post with any relevant advice i come across along my journey of understanding my condition.

Thank again to everyone for this great forum.

Kind regards
Mins

 

[Bernard]

Hi Mins, welcome to the forum. :hello:

I think you are going to find, as I did, that the labels really aren't as meaningful as you think. My wife's seizure patterns have changed in type, frequency, timing, duration/severity, etc. numerous times over the years (mostly in response to different treatment approaches). She would have had several different and distinct diagnoses had she seen a doctor for the first time at various points along the way.

The brain has plasticity and adapts. Whatever your diagnosis may be today, doesn't mean you are locked into that box forever. Much better IMO to focus your attention on what's triggering the seizure events and stop them.

Some food for thought:

Seizures caused by a virus: http://www.coping-with-epilepsy.com...svirus-6b-mesial-temporal-lobe-epilepsy-1124/

On kindling: http://www.coping-with-epilepsy.com/forums/f23/can-photosensitivity-cause-epilepsy-1873/

On diet and the gut/brain connection (read the thread several times if you have to - it's worth understanding): http://www.coping-with-epilepsy.com/forums/f22/does-tryptophan-help-prevent-seizures-5183/#post57089

Take charge: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

Basic (background) info: http://www.coping-with-epilepsy.com/forums/f23/epilepsy-101-part-faq-part-tips-advice-1255/

HTH!

 

[Nakamova]

Hi Mins, welcome!

Your symptoms sound like partial seizure (the aura) with secondary generalization (the tonic or tonic-clonic clonic phases). In some cases the seizure classification can help in terms of medications, since some meds have a better track record against one or another variety of disorder. And if the seizure originates in a very specific area of the brain (focal seizure) that can be helpful if surgery is being considered. But for the most part, as Bernard says, the precise label can end up being irrelevant.

It can be more helpful to identify triggers that play a role in lowering your seizure threshold. Like you, I had my first seizure "out of the blue". I was 35, with no prior episodes or family history. It's possible that a head injury when I was 5 may have "set the stage", but that doesn't explain why I had a seizure 30 years later. The most likely explanation is that a combo of fatigue, low blood sugar and aspartame pushed me over the threshold.

You mention that your seizures both occurred at midday. Perhaps there were other things going on -- Had you had breakfast? Were you dehydrated? Had you eaten certain foods? Had you slept well the night before? Been stressed in some way over a period of days? Were you in a location with fluorescent lights? etc... It's not always possible to find a particular trigger, especially if your seizures are rare, but it can't hurt to take a look at lifestyle factors and consider whether changes might help.

Best,
Nakamova

 

[Mins]

Hi, thanks for the links and advice guys.

I can say there was definitely triggers before my first seizure, i was flying roughly 30-40 times per year on business, then i had stress from working too much and my brothers wedding. I would say i was eating terribly and not exercising much compared to what i was used to a couple of years ago. I was also drinking more beer than i had at any point in my life thus far.

I had terrible sleeping pattern maybe because of constant jet lag and changing time zones. I think this is what caused my seizure threshold to be lowered.

The second seizure i was sleeping better but i would say 36 hours prior to seizure i had very late night and quite a few beers which is rare for me since i stopped all this after my first seizure. Also, had excess coffee and caffeine from coffee a few days in a row (i would say in excess of 300-400% greater than my usual 1-2 cups per day). The morning of both seizures i was stressed from work and maybe that is another cause. Food wise i had eaten my normal breakfast as was just had my first bite of my lunch when my 2nd seizure struck.

The only reason i was asking for exact diagnosis was because i am one of those people who always likes to get an accurate picture of the condition purely from a scientific point of view. I would also like to get a probability or estimate in terms of my prognosis.

As far as i am aware - idiopathic partial/general epilepsy with greater than 6 months from 1st to 2nd seizure gives quite good odds of remission when put on the right AED.

Sorry if this sounds dumb and me trying to predict the future, but i am very worried about an increase in seizure frequency and how it will affect my career (which is i would say high stress field).

Will take a read through all the links Bernard.

Thanks

 

[Nakamova]

There's information about risks and remission factors here:
http://neuro.wustl.edu/patientcare/...patientfamilyphysician/referencesource/iv.htm

 

[Rae1889]

The only reason i was asking for exact diagnosis was because i am one of those people who always likes to get an accurate picture of the condition purely from a scientific point of view. I would also like to get a probability or estimate in terms of my prognosis.

Unfortunately the only people qualified to make a diagnosis are medical professionals. IE: neurologist, psychiatrist, endocrinologist etc.

To me it certainly sounds like a partial seizure that generalized, but i am no professional.

You say the EEG and MRI came back normal and you were under alot of stress at the time. It could be psychogenic seizures.

You also said you were not eating well. You could be in the early stages of diabetes, and the seizures were your warning that something was up with yor blood sugars.

You said that you were drinking alot more beer than usual. It could have been a seizure from alcohol poisoning.

As you can see there are a million factors in determining a diagnosis. We at CWE are not here to confirm or make a diagnosis or advise on the type of treatment. We can only answer from our experiences and certain fact. Sadly it does take a long time for doctors to make a final descion and even then you may be able to get multiple opinions. I myself have been in this cycle for almost 2 years. Seen 2 neurologist, been in the ICU and seen a psychiatrist. Not one of them have been able to give me a firm diagnosis although I do have abnormal EEGs and MRIs. I am now going to see a 3rd neurologist.

For the most part, people with epilepsy do not get an exact diagnosis. as close as you can get is the doctors saying Yes it is Epilepsy, or something else.

 

[momof3boys]

Unfortunately the only people qualified to make a diagnosis are medical professionals. IE: neurologist, psychiatrist, endocrinologist etc.

To me it certainly sounds like a partial seizure that generalized, but i am no professional.

You say the EEG and MRI came back normal and you were under alot of stress at the time. It could be psychogenic seizures.

You also said you were not eating well. You could be in the early stages of diabetes, and the seizures were your warning that something was up with yor blood sugars.

You said that you were drinking alot more beer than usual. It could have been a seizure from alcohol poisoning.

As you can see there are a million factors in determining a diagnosis. We at CWE are not here to confirm or make a diagnosis or advise on the type of treatment. We can only answer from our experiences and certain fact. Sadly it does take a long time for doctors to make a final descion and even then you may be able to get multiple opinions. I myself have been in this cycle for almost 2 years. Seen 2 neurologist, been in the ICU and seen a psychiatrist. Not one of them have been able to give me a firm diagnosis although I do have abnormal EEGs and MRIs. I am now going to see a 3rd neurologist.

For the most part, people with epilepsy do not get an exact diagnosis. as close as you can get is the doctors saying Yes it is Epilepsy, or something else.

I was going to say the same thing. Ive been doing alot of research on Non-epileptic seizures, and just reading your description of it, fit alot of what Ive researched. My Neurologist took me abruptly off both of my seizure medications, which lead me to have withdrawal seizures that didnt register as epileptic seizures. So I spent the last three months looking up Non epileptic seizures to compare to what I experienced during my VEEG. Turned out, today I finally get a dr that agrees with me, and says what I experienced was withdrawal seizures and are not epileptic seizures. Ive had complex partial seizures, grand mal seizures and now simple partial seizures in my life.

Here are a few links I found in regards to the Non-Epileptic seizures:


http://www.epilepsymonitoringunit.com/epilepsy-symptoms.html

http://my.clevelandclinic.org/Documents/Epilepsy_Center/08_NEU_060_NonEpilepsyPatient_v2.pdf

 

[Endless]

Mins,

Everyone is right - we aren't doctors and can't diagnose your seizures. It really takes a neurologist or an epi (a neurologist who specializes in seizures).

That said, here are a few links to sites that describes the different types of seizures. One or more of the descriptions might ring a bell.

http://www.epilepsy.com/node/968069 (keep scrolling down for the whole list)
Epilepsy - A comprehensive Textbook Look on page 514, table 4

Also take some time to read the old posts in here. You may read some that remind you of things that have happened in the past and that you didn't know were seizures. I had no idea a bunch of things I had gone through were actually partial Temporal Lobe Seizures (like deja vu or daimas vu). These may not have been your first two seizures.

Hang in there. They probably caught this quickly enough that it's under control. I'll have my fingers crossed for you.

Is your doctor going to increase your dosage higher than the 75mg/day? If so, do you know what the eventual target dose will be?

 

[mel239]

Kristin,I was reading how they say that nonepileptic seizures mimic granmal EXCEPT one very important point I noticed.Alot of people are being told they dont have epilepsy even though they are having the bad or wrong sensory problems especially like taste and smell and vision and nowhere do i see this as being indicative of nonepileptic seizures.maybe I am missing something but I thought non epil seiz always looked like granmals and maybe complex partials but never simple partials.

 

[momof3boys]

Yeah when I first started searching non epileptic seizures, alot of what I found came up saying they look like grand mals or complex partials. Then after reading more, I found more, like this site:

http://www.medscape.com/viewarticle/581669_6

That says it can resemble any kind of epileptic seizure. When I went to my psych dr today, I had copied this paper and asked her about it. She did say that after alot of researching and studies, they can mimic any kind of epilepsy seizure. She said she's seen all different kinds. So in ways It just depends on the person. But for the most part, she just kept telling me that anticonvulsants will not stop the seizures if they are non epileptic. Those are treated with anti anxiety medications and therapy.

 

[Mins]

Hi guys, yeah i have taken your advice and will try to talk to my neurologist to see if i can get an exact diagnosis of my type of epilepsy.

I think in my case i dont think i am having non-epileptic seizures just because i cant think of any time i have been depressed or even unhappy in my life. I am generally a steady type of guy who experiences neither extreme highs or extreme lows - but i will try to do some more reading if they can apply to me when i really dwell deep into my psyche. Is it normal to bite your tongue with a non-epileptic seizure when havig what looks like a grand mal?

As for any type of other seizures, i have asked all my family and thought about it as much as possible and cant remember having any type of any seizure described in the links posted. I never had twitches, absences or any type of jerking. I never had any major deja vu or any other type of seizure i have so far read about. My family has always said i have always been alert to everything that is said and cant remember any time i have had any type of twitch or evern daydreaming type events.

I just find it so strange that no one in my whole family including second cousins has ever had a seizure. Also, all my MRI's are normal and EEGs are all normal. It's just so unexpected and still has not sunk in yet. I have had all my blood-work checked immediately after each seizure and throughout the year and they cant find anything wrong. Even went to ENT specialist who cant find anything wrong.

I guess i have to come to terms with my epilepsy and just deal with it. Its very scary thinking that a grand mal can strike at any time. Its now been 3 weeks and 2 days on AED and so far so good. Just trying to take it one day at a time. They are going to bump me to 50mg twice a day for now - neurologist said he will increase if i get breakthrough seizure.

Thanks everyone for all help and support.

 

[Rae1889]

Things are not cut and dry when it comes to epilepsy. Most people bite their tongues when having tonic clonic seizures (aka grand mal) They typically bite the sides, and sometimes the very tip. BUT not every seizure comes with tongue biting (epileptic or non) and not every person does this.

One of the biggest factors of whether the seizure was psychogenic in nature is if you remember it or if you have your eyes closed. (again the eyes closed part can vary.)

Most people with Epilepsy experience a psychogenic seizure every now and then.

I wouldnt say you have to come to terms with your Epilepsy just yet, as your not even sure this is what it is. Just wait until you have a more difinitive answer from your doctors.

 

[Mins]

Things are not cut and dry when it comes to epilepsy. Most people bite their tongues when having tonic clonic seizures (aka grand mal) They typically bite the sides, and sometimes the very tip. BUT not every seizure comes with tongue biting (epileptic or non) and not every person does this.

One of the biggest factors of whether the seizure was psychogenic in nature is if you remember it or if you have your eyes closed. (again the eyes closed part can vary.)

Most people with Epilepsy experience a psychogenic seizure every now and then.

I wouldnt say you have to come to terms with your Epilepsy just yet, as your not even sure this is what it is. Just wait until you have a more difinitive answer from your doctors.

Hi Rae, i think your right as i have not come to terms with my epilepsy - i am still in somewhat of denial and still shocked this has happened to me. I guess time will heal all wounds and hopefully i can come to terms with it.

I actually described the events of my first seizure to 2 different neurologist - both said it was idiopathic generalised epilepsy. I think the problem was that my brother who witnessed the seizure was so shocked at the time that he had memory loss himself of exactly what happened.

After the 2nd seizure my mum clearly stated that i was seizing while still standing (jerking my neck and raising my arm while standing), my dad was even aware of my aura because i was eating with him at the time and i got up and quickly said 'dad my ear is buzzing, im going to have a seizure'.

I can only remember the aura and then remember the paramedics in my house and the extreme nausea i was feeling.

The sides of my tongue have been badly bitten both times. I have zero memory of the whole event after the aura. I was extremely angry with paramedics after both seizures when they were trying to take my blood (this was what my brother and parents told me).

After my 2nd seizure i saw my 3rd neurologist (just by chance not because i did not want to see the same guy), he said this was idiopathic secondary seizure which took me by surprise.

Anyway I'm just describing the same things over and over so sorry guys - still trying to get this of my chest i guess.

Kind regards
Mins

 

[Mins]

I have just been reading about gluten intolerance and am surprised to say i honestly think i may have some issue with gluten.

I say this because i remember as a child there was a couple of time where i was eating mainly breads and cereals with most my meals (just sandwiches and such) and i always had major pain around my waist (i hated any tight clothing around my waist simply because every time i breathed in or out i would get major pain around my sides).

I even remember collapsing in pain 2 times and being constipated - my parents had to help me up once when i fell down due to the pain around my waist.

A couple of years ago after major knee surgery (ACL rupture) i had extreme pain around my waist everyday. After surgery because i could not train i was basically gorging on feel good foods and was trying the European diet of plenty of breads / croissants / danish. The pain during this time was unbearable and i had MRI just to rule out IBS or crohn's disease.

Just looking over my diet, i know me and my brother both get extremely bloated from breads / pizzas / Indian food with nan bread. I also eat cereal every morning and i am always bloated afterwards (i always thought this was insignificant).

I do take vitamin supps and drink only water and eat a lot of fruits and fiber so last few years not had any problem with constipation (i did have few minor problems with this when i was young).

I never drank beer during college / uni and was strictly a vodka man. However, even though i rarely drink i have only drank beers this last year and half - always extremely bloated and in pain around abdomen next day from drinking as little as 3 beers (i thought beers would prevent hangovers i suffered from vodka).

Prior to 1st seizure my diet was terrible - pizzas, fast food sandwiches and lots of beer (this was unusual and i attributed to my constant travelling and irregular schedule).
Prior to 2nd seizure on the weekend my and my girlfriend had so much bread like food and again beer.

Just wondering if this can really play a role in lowering my seizure threshold and whether i have gluten intolerance of some kind. I might be grasping at straws here but i know i have always had major problem with heavy breads (rest of family loves Indian food which i never eat because of heavy nan breads aways bloat me for 12-24 hours).

I am i being silly or is there any substance behind my claims??? I am thinking of simply trying gluten free diet and seeing how i feel in terms of bloating.

 

[Nakamova]

There are scientific studies that have documented links between gluten issues and seizures. And many people have found that their seizures were reduced or controlled when they switched to gluten-free diets. There's a lot of info here on CWE about this:

Here are some places to start:
http://www.coping-with-epilepsy.com/forums/f39/migraines-seizures-gluten-sensitivity-5772/
http://www.coping-with-epilepsy.com/forums/f39/epi-improved-w-gfdiet-md-report-5532/
http://www.coping-with-epilepsy.com/forums/f22/gut-brain-connections-5352/

RobinN's thread about her daughter's treatment talks about neurofeedback, but also talks quite a bit about how making nutritional changes has allowed her daughter to be med-free and virtually seizure-free:
http://www.coping-with-epilepsy.com/forums/f32/neurofeedback-rebeccas-story-2733/

Here's a link to an article that explains the link between gluten and neurological issues:
http://www.huffingtonpost.com/dr-david-perlmutter-md/gluten-impacts-the-brain_b_785901.html

 

[Mins]

Thanks Nakamova, i have had a look through a few threads here at CWE, some excellent advice given and i have decided to try a gluten free diet for 30 days.

Hopefully this will end any bloating and fingers crossed i don't have another seizure.

 

[Nakamova]

It can actually take a while (several months) for the full effects of the gluten-free diet to be felt, and sometimes it's a good idea to make the transition slowly. On the other hand, if you start to feel better right away that'll be a sign that you're on the right track! let us know how it goes, and how you feel.

 

[Mins]

Hi guys hope all are well.

Just update on Lamotrigine - i am still on 50mg per day and will be bumping to 75mg today.

So far side-effects have been minimal, was headache at first which has faded. The vivid dreams have also started to fade slightly, did get some acne at first but that has also faded. A little bit of trouble finding words but i don't know if this is due to Lamotrigine - could just be because i know this is one of side-effects so every time it happens i notice it more and think its due to Lamotrigine.

No seizures thus far (Just over a month now) - but i don't know if that's due to the pills as i have only had two grand mals in my life which were also 8 months apart (so i figure my seizures are relatively benign, fingers crossed).

After reading and gaining great insight on this site i have also changed my diet:
- no caffeine whatsoever, just water (this mean no more coffee which sucks so bad).
- No wheat or gluten (started this in the last week).
- Magnesium supplement.
- Added another multivitamin.

Also, sleeping same time everyday, trying to keep stress away and no partying or drinking whatsoever for now

The only major complaints in terms of side-effects has been:

- Ear pain (don't know why this is happening but i am trying to add drop of oil each day to stop the pain).

- Also, in the last week i have noticed some stars when i get up to quick, lasting maybe 10 secs. Could be due to blood pressure which has increased since my last seizure and was 143/78. (I have been exercising at a minimum right now just because i tried to let my body heal so may be why blood pressure has increased).

Apart from that all good. I hope i am moving in the right direction and trying everything i can to keep seizures away. Thanks for reading.

 

[Nakamova]

Hi Mins, thanks for the update, sounds like things are going pretty well. My blood pressure increased when I started Lamictal, although it's not listed as a side effect. So then I started taking the magnesium citrate, and that got my BP back down. You may find the same thing happens for you.

 

[Endless]

Thanks for the update. You are doing all the right things!