New & confused

[aaron]

I've posted in a couple of other topics at this forum but thought I should do a proper introduction.

I've been with my girlfriend Kate for 5 years. She was diagnosed 3 years ago.

I still remember the night of her first seizure. Scariest moment in my entire life. I had been lucky enough to never have anyone close to me experience anything like this so it really hit me for a six (Australian expression).

I won't go into every detail between then and now but it has been 3 years and we are still both struggling with this.

She tends to have grand mal seizures approx once a month. In between these times we tend to just try to forget about it but I think that is what is stopping us moving forward and accepting it.

She had a seizure a few hours ago and that is why I am here. I have become accustomed to it and don't freak out like I used to but it's still a scary experience.

She was originally put on Tegratol (?) but has now been on Lamictal for 2 1/2 years. Currently on 300mg. I believe this is a below average dose so there is still room to move up??

The problem for us is consistency in seeing her Neurologist. It costs $250 per visit and unless we make an appointment immediately after our visit we have to wait months to see him again. Kate rang up yesterday only to be told she can't see him until June. That's 5 months away!!

What do people do in this situation? If we go to a neurologist in the public system, we will have to start all over again.

Oh, we are in Australia so there may not be many that know our health system

It feels like we have just been going around in circles since the diagnoses and not making any progress.

Kate has also suffered depression for a number of years and been through it all so it makes it hard to convince her to attend support groups of any kind because she has this idea that they are full of patronising, smile be happy types lol

There is one on the 25th Feb that I'm hoping to get her to as I feel this is our only way forward.

Anyway, I don't know what specific advice I'm after at the moment. Perhaps I'm just ranting and venting what I've needed to for the last 3 years.

Hello to you all and I am so grateful to have found this place and learn more about what we are going through.

Aaron

 

[CQ:)]

Hi Aaron,

Welcome to the forum. Sorry to see that your girlfriend had another seizure today & I hope you can get her into see a neurologist sooner.

I'm not sure how long your girlfriend has suffered from depression but alot of people with epilepsy also have depression. Side effects in some of the anti epilepsy medications is depression, mood swings, personality change. Of course we are all different & we all react to medications differently.

I'm also from Australia & you'll find a few of us Aussies on here as well as people from other countries eg - America, England, India, Netherlands etc. It's a great group of people here so if you have any questions just ask & I'm sure someone will help.

 

[Nakamova]

Hi Aaron --

If your girlfriend is having one tonic-clonic a month, then the Lamictal isn't doing the trick. Either the dose needs to be adjusted, or another med may need to be tried. (Unfortunately with anti-seizure meds, there can be a lot of trial and error.) There seems to be a wide range for Lamictal doses -- 150mg/day controls mine, but I've read about people who take up to 800mg/day, so it may be worth trying a higher dose. I'm sorry it's so hard to get through to your neurologist. I'm not familiar with the Aussie health care system, so I don't know what your options are for speeding things up. I would recommend being "a pest" and continuing to ask the neuro to move the appointment up. Maybe if there's a cancellation, you can get in sooner.

 

[valeriedl]

I've had epilepsy for 9 years now and met my husband 8 years ago. He knew I had epilepsy when we started dating.

I had my first seizure infront of him about 3 months into the relationship (It wasn't a grand mal). I just kept coming in and out of relaity. We'd be having a conversation then all of a sudden I'd be staring off into space or doing wierd things. A few minutes later I'd come out of it and just start talking and acting normal again not knowing that I had the seizure.

After about 15 minutes of this happening my parents told him to take me to the ER and they'd meet us there. When my mom saw that he knew what he was going to have to deal with if he kept dating me then she thought for sure he'd leave me, but he didn't.

He's learned to deal with it but I know it's still hard on him seeing me have the seizures. I don't know what I do and usualy don't even know that I had the seizure but he gets to see everything.

I'll have problems getting into see my neurologist sometimes if I think I should see him before my scheduled appointments, which are usually about 4 months apart. Alot of times though I'll beable to get in to see his nurse practioner (don't know if they have them in Australia though). She's able to adjust the meds and do other things that may help with the seizures. I'd rather see the actual neuro but sometimes I have to make due with what I can.

Try not to let her get depressed, I know that happenes alot with people with epilepsy. I always try to look at the brighter side of things and laugh alot, my husband helps out alot with that. We'll joke about some of the goofy things that I do when I'll have a seizure. We don't let my epilepsy get in the way of things either. If we want to go out, take a vacation or things like that we just do it. Sure I might have a seizure but we're not going to let that get in our way. I could have a seizure sitting at home on the couch watching tv so why bother just wasting our time only doing that when we could be out having fun.

Try to get her to join this web site. When she sees that there are other people going through the same things that she has to deal with it might help her alot.

 

[aaron]

Hi Nakamova,
Thanks for your reply. I think a change of meds might be the best option. She's not very happy about the side effects she is having with Lamictal. She seems to have bouts of nausea all the time. Compared to other side effects I've heard about, it doesn't seem so severe but I'm not the one putting up with it. Also she hates blackberry and it seems all Lamotrigine has a blackberry flavour. Anyone know why?

She also knows all too well about the trial and error with medication. She went through all of that with her depression medication.

 

[aaron]

Hi Valeridl,
Thanks for your reply also.

I will try to get her to ring up a couple of times a week checking for cancellations. From now on we will definitely be making appointments immediately after having one. We didn't really know it was this difficult to get one.

I believe the public system is worse and the wait would be almost a year

She had depression long before Epilepsy so it was easy enough for her to get upset before all of this. In saying that, she doesn't seem to get upset about all the little things now (which I could never relate to) but to her, Epilepsy has ruined her life as far as she is concerned.

I am trying to get her to visit this site without pushing her. I talk about what others on here say, telling her how similar a lot of peoples stories are, I leave bookmarks in the browser and shortcuts on the desktop hoping her curiosity might kick in For all I know, she has visited but isn't ready to jump right in so is keeping it to herself which is understandable.

I really hope she will come with me to a support group on Feb 25th. Fingers crossed.

Cheers

 

[Nakamova]

Hi aaron --

My Lamictal pills don't taste like blackberry or anything else -- I don't chew them, just toss them back with water. Maybe there are other forms of the Lamictal she could try that aren't chewable or flavored?

With the nausea, has she tried taking the Lamictal with a meal? Or after a meal? That might help. And avoiding any acid-producing foods that might make nausea worse.