Who knew!?

[MadameJ]

Hello, I am new to this site and to the discovery of my new disorder, epilepsy. It all started about 3 weeks ago when I woke up in the ER. Apparently, I had a seizure. WTF, I thought, a seizure, how could this have happened? Because I wasn't conscious during this episode, I had to rely completely on my husband and his reaction to what he just witnessed.

I was referred to a Neurologist the next day and I explained, my husband , explained what happened. The Doc then asked me what I felt just before it happened and I said...well, anxiety.

After having the doctor explain to me that he was concerned that I may be epileptic because of my feeling just before the generalized seizure, I began to wonder.

The next week I got an EEG and it came back abnormal! What I thought was anxiety for the past ten years was in fact seizures, simple partial. Who knew! This whole time I thought I was a little off upstairs, the crazy episodes of nausea, bowel movements, worry, fear, unable to speak, deja vu, and feeling of being outside my body were finally explained.

However, the bad news is... Like most of you, I can't drive until further notice, I cant drink ( sell wine for living and husband makes it) and I have to take meds. i am currently taking lamictal and now my hair is falling out and I am getting acne! Poor me, right!

Luckily, my doc is sending me to Portland, Or for a second more specialized opinion on what I can do to control my seizures. Although I didn't get them often, it was explained that once you get pushed into a generalized seizure, you have 97% chance of it happening again.

 

[Nakamova]

Hi MadameJ, welcome to CWE!

It's great that you found this site after only 3 weeks (I wish I had found CWE right after my own diagnosis). It's been a terrific resource for me for support and information, and hope it can do the same for you.

I'm on Lamictal too. I had hair loss at first, but that stopped after a few months. I do still have the acne, mostly on my chin. It drives me nuts, that and the blurry vision that also seems to be a side effect. The Lamictal does control my seizures -- and I am able to drink alcohol without any problem, so perhaps you will be able to eventually, once you get a handle on things.

Best,
Nakamova

 

[MadameJ]

Thanks

Thanks for the reply!! This is good news that the hair issue got better. I was about to change and go on tegretol but my doc and I decided to wait until I finished my sample. I have only been on for 2 weeks.

I guess it is obvious that I don't like to wait around

As far as the acne...I have struggled with it on and off for years but I have noticed an increase. Oh well! The hair thing was more of a concern but you have made me feel a little more confident. (xo)

Funny, my dr stressed that drinking was my worst enemy!? I left the dr office in tears, I couldnt drive, no more wine, and needed to reduce my stress. I have two babies under two...how can I manage without a car and a drink and of course, that was going to make me stressed.

Jeez, life seems so different now.

 

[Blue Cat]

Welcome MadameJ. Hopefully all will contine to improve. I've been lucky not to have either the hair or acne issue. After 6 mo's no sz's (controlled on Lamictal) I got my license back, and am able to drink no more than about 8 oz. of wine. I'm in CA, hope whatever rules you have to are similar. Like Nakamova I didn't find this site until after 3 szs and accepting that, yeah, I have E, and I can cope, and even though mine is extremely mild and not nearly as problematic as most (4 szs in my lifetime), it's wonderful to have people who understand. And the 97%, by my understanding, is for something like the first 24 hrs, and it diminishes after that.

 

[MadameJ]

Me too

Thanks blue cat! I too, hope these symptoms go away...I guess taking meds is like trying on shoes.

What kind of seizures do you suffer from?

 

[Blue Cat]

I only had 4 t/c's, was diagnosed with juvenile myclonic epilepsy when I was 42 (guess I'll never grow up) -had had a t/c at 28 but it was waved off as alchohol (party...), so diagnosis was 2002.

 

[Nakamova]

I get grand mals too, onset was 11 years ago when I was 36.

MadameJ, did your neurologist think that alcohol was seizure trigger for you, or just a tricky mix with the meds?

 

[MadameJ]

Idk

Good question...idk. When I was in the dr office listening to him tell me that I am epileptic, I kinda zoned out when he said I couldn't drive, no wine, and must sleep.

I am assuming it is both! It can trigger seizures and effect the meds.

However, I remember 10 yrs ago, I decided to move to France with who is now my husband and that is when the symptoms started. At this same time I started drinking, he is a winemaker. Is there a connection, I don't know!? Alcohol and worry could trigger them. I didn't and dont get them often but when I do, they last for days. I assume they are continuous?

As far the the generalized seizure is concerned...just before it happening I have been under some stress with just having a baby and him having a fixable imperfection, sleep deprivation, and mixing wine in the picture, I guess, I was a time bomb that blew.

Anyway, if lamictal ends up working out do you know how the generic of it is? Have you tried it?

Thanks again

 

[Blue Cat]

I zoned (cried) when the doc told me and he got mad when I asked him to go over it a few days later, said he'd already told me. Docs. The generic they put me on first was from India - mfg Torrent. Huge swings in blood plasma caused 2 breakthroughs. Was on TEVA generic for 6 months, seemed to work fine (made in US), but Kaiser doesn't carry it any more so went back to brand, works great. Various generics work for some, not everyone, as fillers and quality control of mgf are paramount.

 

[Cint]

As far the the generalized seizure is concerned...just before it happening I have been under some stress with just having a baby and him having a fixable imperfection, sleep deprivation, and mixing wine in the picture, I guess, I was a time bomb that blew.

Anyway, if lamictal ends up working out do you know how the generic of it is? Have you tried it?

Stress is a huge factor in seizures, along with alcohol and sleep deprivation.

I've had epilepsy now for 30+ years. Mine started when I was 22 years of age, during those party days. Lots of alcohol, no sleep, etc.... then the seizures started. I've had SP, CP and generalized seizures over the years and tried the generic medications, but for me, they did not work, so I guess it depends on the severity of the epilepsy whether the doc will try generic or not. Plus I had two children during all this time and they witnessed many CP as well as generalized seizures. My husband was a pilot and was gone much of the time, so I learned to deal with the no driving issue. There are ways to get around.

 

[MadameJ]

I am learning that very quickly myself and it has only been 3 weeks. I just need to allow myself to ask for help. Btw, I feel like you guys must think I am an alcoholic I am not, I just enjoy my wine. it is a huge change of lifestyle! My friends, my work, my husband, all revolve around winemaking.

 

[Aubrey]

I take a high dose of Lamictal. I drink wine. I have tonic/clonic seizures. I think it is a less common trigger than doctors think. What is a trigger for people who have epilepsy is dehydration, and alcohol is (as I am sure you know) dehydrating. So I usually don't have more than two glasses of wine. And I make sure to drink plenty of water. I don't think your career is necessarily over.

 

[Blue Cat]

My doc said that alcohol acts somewhat like an AED, lowering brain activity and when that wears off a sz can occur. I know what you mean about liking the glass of wine, not alcholic just a glass of wine or two. I just found that anything over 8oz gives me the most unbelievable headache the next day - really worse than a hangover. Like Aubrey says, it's unlikely that your career is over, just be careful.

 

[Cint]

What is a trigger for people who have epilepsy is dehydration, and alcohol is (as I am sure you know) dehydrating. So I usually don't have more than two glasses of wine. And I make sure to drink plenty of water. I don't think your career is necessarily over.

Some of the AEDs can cause dehydration, also and lower one's electrolytes. Trileptal is one med that caused hyponatremia for me.
Low blood sugar (extremely low) can cause seizures as can stress, alcohol, lack of sleep, hormones, lack of nutrition.

For more info:

http://www.epilepsy.com/epilepsy/Provoke_alcohol

 

[Nakamova]

Anyway, if lamictal ends up working out do you know how the generic of it is? Have you tried it?

I made the transition to the generic without any problem. My neurologist commented that the generic of lamictal seems to be more effective or consistent than the generic versions of other AEDs. I don't know if this is true, but it has been fine for me. I tend to be medication-responsive, and I take a relatively small dose, so I may be less sensitive to the inconsistencies that generics are known for.

 

[MadameJ]

Thanks

I am going to like this site! It is like FB for epileptics.

 

[SusaninCA]

When I had my first seizure, it was chalked up to anxiety/panic. Then as I got older, they became more frequent and involved loss of consciousness and temporary amnesia. It was mostly passed over with doctors as I tested normal with the EEGs, CT scans and MRIs. then I had a seizure while sitting in my car and my license was taken away.

It took me a about a year to get my license back, and a lot of dealing with medication, the side effects, trying to figure out how to get this all under control. It was rough, but 10 years later, I am mostly ok. I have twitches at night, and am trying a medication for that - as they wake me up and I was not sleeping enough. I notice when I am tired, I am more prone to what leads into a seizure. I have not had a seizure in 3 years - and when I had the last one, I was trying to reduce my medication because it was working so well, I did not think I needed it anymore

 

[MadameJ]

Hello and thanks for replying. So, is that normal that an EEG comes back normal even though you suffer from seizures? And what you thought was anxiety were they auras?

 

[SusaninCA]

MadameJ - I know when I am having seizure activity...now. I feel it in my body, my head, the way my eyes see things.

Anxiety to me is the sinking feeling in the stomach that makes my heart pulse. Seizure is the "I can't see correctly, my mouth has a weird taste, and I know I am about to lose consciousness." So different, but similar.

I had normal EEGs until 3 years ago after I had my last seizure. At the end of the day - if you're losing consciousness, something is wrong and it needs to be looked into. It could be a heart issue, an emotional issue, or a neurological issue. They all need to be researched and tested. And, as much as it sucks, not driving is probable a safe idea.

 

[MadameJ]

that is great that you know your symptoms so well, I am envious. it is all so new to me! I just thought I was a little crazy. The anxiety, I guess I should say auras, were all I had up until my big seizure that landed me in the ER. However, I certainly don't remember that. Luckily, I haven't had anything since.