Update on recent neuro appt

[CQ:)]

Hi all,

Earlier this month I had 2 auras/seizure activity at work, both were during my lunch break so not seen by my co workers. The 1st one I had was on 4th February which I had in the lunch room while having lunch. My co workers were in the office working so no one realised I had the aura. By the time I finished lunch the aura was over & I was feeling fine.
When I went back to my desk I told my co worker who I work along side the most how I had an aura. She seemed interested in knowing what I do & what to look out for so she came to chat to me. While we were chatting I decided I was OK enough to write down what happened so I wrote on a scrap piece of paper what happened but it all turned out to be gibberish.
My co worker told me later how when I wrote the gibberish I wrote it really fast so she was amazed how I could write so fast yet even thought I wrote gibberish it was still readable & not scribble(it was my normal writing).
I gave myself an extra 10 minutes after that before I went back to work.

I had only told the one co worker about the aura but she had let our boss know so he was aware. The following day my boss asked me how I was feeling & if I would be writing strangely that day. I told him I was fine & I was back to normal so no gibberish that day. A couple of hours later I went on my lunch break & decided to go for a walk. Not long after I left work I had another aura but this time it was really tiny & didn't last long.
When I got back to the office the boss was out so when he got back in to the office I was grinning & told him he jinxed me because I had another aura during my lunch break. Ofcourse it wasn't my bosses fault but it was fun to stir him lol.

I went back to epilepsy clinic on the 9th February to see my neuropsych & neurologist. When I got to the clinic my neuropsych called me in 1st.
When I saw her I gave her a copy of my journal with the gibberish I wrote after an aura. She was particularly interested in the episode I had on the 14th & told me what they call the gibberish I have but I forgot what she told me not long after she said it lol. After we discussed the auras my neuropsych & I discussed how things were going for me in general.

While we were talking my neuro knocked on the neuropsychs door & asked if it was OK for him to come in & we both said yes. So he came in with a student, he grabbed a chair while the student sat on the bed in my neuropsychs room & just listened. I hadn't seen my neuro for 12 months as the last time I was at the clinic he had to cancel suddenly so I saw another neuro. My neuropsych updated him on how I was going, how I was still having the auras & the Tegretol had been increased.


Once my neuro was up to date we discussed what the next step would be.
I told him I don't think the Tegretol / Keppra combo is working anymore so I would like to try a different med. He was happy to try me on a different med so we discussed whether we would try one of the meds I was on pre surgery again, Topamax or Lamictal or try a new med I haven't been on before. We decided to try a new med so he has put me on Vimpat, he has started me on a very low dose of 50mg twice a day for 1 week then I have to increase it to 100mg twice a day. He hasn't changed my Keppra or Tegretol as of yet but he wants to see me again in 4 months time.
He said if the Vimpat does help control the auras better then when I go back in 4 months we will discuss reducing the Tegretol again.

I have to let my epilepsy nurse or neuropsych know if I have any issues with the Vimpat, other wise I just have to email them in about a month to let them know how I am going on the Vimpat.

I went & got my scripts on Tuesday but my chemist didnt have the Vimpat in so I had to go back on Wednesday to get it. I started the Vimpat on Thursday so only at day 3. I haven't had any side effects yet but my side effects usually don't show until about 4 or 5 days into a med change.
The people I work with in the office are all aware that I am on a new med & I may have some side effects at 1st.

Other wise the appointment went well, everyone was happy with how I'm going & how great my employers are.

 

[Fedup]

CQ

The most important part in all this is your happy with how things went, keep me up to date on how the vimpat mix is going for you. I would love to have seen your bosses face when you told him he jinxed you. Its good things seem to be going good. Hope it keeps up.

 

[Cint]

Good to hear from you CQ. Glad to hear you are doing ok for the most part, but sorry you are still having those auras and still have to take meds after surgery. But happy to hear you are able to work with some awesome people who do understand. Keep us posted on how things go in this next year.

 

[Nakamova]

Hope the Vimpat helps, and that your team of docs continues to be so helpful and responsive. Let us know how it goes with the Vimpat.

 

[masterjen]

Thanks for the update CQ! I was on the tegretol/keppra/vimpat combo at one point as well. No added side effects for me with the vimpat except some dizziness and eye sensitivity early on. Good luck and I hope the added vimpat does the trick for you!

 

[CQ:)]

Thanks everyone,
Fedup - my boss is a real true blue Aussie, he has a great sense of humor & not much upsets him so when I told him he jinxed me & explained what an aura is he just grinned.

I went to the appt hoping the neurologist would change my meds so I was happy to try something new. When he mentioned the Vimpat the 1st thing I asked was what are the side effects, he said there aren't too many side effects but main one to be aware of is you might get a little dizzy.

When the neuro 1st suggested the Vimpat & explained to me how I'd take lower dose at 1st then increase it I got all muddled up with the dosages lol.
I forgot as soon as I left the clinic what he told me, just remembered him saying it came in sheets of 14 tablets.

When I was on the train back home I checked my script & saw the neuro gave me 14 tablets for the 50mg Vimpat so I got myself all confused. I couldn't remember if the neuro wanted me to take the 50mg for 2 weeks or 1 week lol.
The following day I emailed the neuropsych & Epilepsy nurse a copy of the script & asked them to ring me on my mobile or email me to clarify what I had to do.
Not long after my epilepsy nurse rang me while I was out walking & said that going by the script I just take the 50mg AM/PM for a week then go up to the 100mg.
She said she'd let the neuropsych know that it had been followed up.

Not long after I checked my emails on my phone & saw an email from my epilepsy nurse which she sent to the neuropsych to let her know the meds had been sorted. There was also an email from my neurologist explaining the dosages & he told me what the nurse had said. The neuropsych had emailed him asking him to clarify the meds for me.
Usually I only speak to the neurologist when I see him for my appts & all other correspondence is via the epilepsy nurse or neuropsych so was weird to get email from the neurologist lol.

It seems that the neuropsych, epilepsy nurse & neurologist were all following up my query about the meds at the same time lol

 

[Fedup]

CQ

I was just thinking if that was me, it is so funny.

 

[CQ:)]

CQ

I was just thinking if that was me, it is so funny.

Haha Fedup,

I had said to the lady who saw me write the gibberish that I told my boss he jinxed me. She laughed & said yeah lets blame the boss lol. Everyone I told that to saw the funny side lol

I work in the building industry so talk to a lot of tradies, usually the tradies are easy going & it takes a bit to upset them.

 

[CQ:)]

Hi all,
I've only been on the Vimpat for close to a month but so far all is going well.
I had very minor side effects after I increased to the 100mg but they only lasted for a couple of days.

I've had 2 auras since starting the Vimpat but both were pretty small, otherwise no other issues. Hoping the Vimpat will be the med that helps with these auras but time will tell

Tuesday is 4 years since my surgery which has gone quick, apart from these auras I'm very lucky with how I've been going & where my life is at the moment so I don't complain much

 

[Nakamova]

Glad to hear that the Vimpat isn't bothering you. Hope to hear a month from now that there have been zero auras!

 

[CQ:)]

Glad to hear that the Vimpat isn't bothering you. Hope to hear a month from now that there have been zero auras!

Haha Nak,
We'll wait & see, I try not to think about it too much because if I do think about how long I'll go aura free I jinx myself lol.

The last aura I had was different again as this time I wrote the time when I was still hearing the noise & it was the right time then I wrote what happened just after the noise finished & no gibberish at all. This is the 1st time in 2 years where I have had no gibberish at all during or after an aura so I thought that was pretty cool :woot:.

 

[Nakamova]

Definitely sounds like the drug is helping. yay!

 

[Fedup]

CQ

Its good to hear that the vimpat is working for you and like Nakamova said hopefully in another month it will be better news again.

 

[CQ:)]

Thanks but I did have an aura/seizure activity last Thursday (12th March) while at work. It was a stronger aura, lasted a little longer then usual & the recovery was also longer. No one at work knew at the time as I went down to the lunch room to have the aura as it is more quieter & away from the main office. I waited until the noise was over before I went back to my desk & wasn't feeling well yet so waited a little while before I went back to my work.

I sent my neuropsych an email to let her know as it was a stronger episode, she emailed me back the next day to let me know it was all noted. I asked my neuropsych if the neurologist wanted to adjust meds (my old neuro was always increasing my meds) & she said at this stage no changes in my meds.
I am due to go back to the clinic around June so will be speaking to the neuro about what happened.

 

[Nakamova]

That's too bad, I hope it was just a fluke.

 

[Cint]

Ahh, CQ, I hope it's only a one time thing. Hang in there!

 

[CQ:)]

Thanks Nak & Cint,
I didn't feel 100% after I had that aura & the following day I had a tiny aura early in the morning (not so concerned about the tiny aura) then still wasn't feeling a 100%.

The strong one I had on the 12th did bother me more then the others do because it was longest Ive had since surgery but i had a quick talk to my neuropsych on Thursday so I'm fine now.

I wasn't letting it bother me as on the 14th March I did something I've wanted to do for a long time. I went for a walk from my town to the next town then walked back home (they are only 5 mins drive but longer to walk). I went via a nice walking track that takes you to the towns then did a couple of errands. I think I walked at less 10 or 11kms & I was exhausted when I got home but was glad I did it as it was something I wanted to do for a while.

I've decided that is all the auras/ seizure activity I'm having for this month

 

[Nakamova]

That's a good long walk!

BTW, Happy Fall! It's the first day of Spring* here.

*even though it's snowing as I type this.

 

[CQ:)]

That's a good long walk!

BTW, Happy Fall! It's the first day of Spring* here.

*even though it's snowing as I type this.

I was probably crazy to do the walk but wanted to do it for a while, I'll probably not do it again because my left foot was playing for a couple of days after that. I am trying some more walking tracks as I get bored easily lol.

Thanks, we are in the 1st month of Autumn, it's starting to cool down but we have the odd warm day.