Finally, doctors are organised! (also, what to put in sz diary?)

[Loopy Lou]

So finally, nearly exactly a month after being told i was being put "urgently" onto clobazam to see if we can get the focal seizures under control, i finally heard from the epilepsy nurse yesterday and my GP today (i know, the actual doctor called me, that's pretty much unheard of here :O ).

My clobazam prescription should finally be ready to be picked up today, so i can be doped out of my head ready for going back to uni on monday. Lovely.

Anyhoo, the epilepsy nurse said that i should be keeping a seizure diary whilst on the clobazam - this is alongside my other meds - to see if it's having any effect, but i don't really know what to put in it, or what detail. Especially since we're not clear whether some of the seizures i have are actually seizures or if it's just me spacing out from med side effects. And sometimes i can completely miss if i have one if nothing eventful happens, since i live on my own and sometimes just.. don't notice.

What would you normally put in a seizure diary?

 

[Nakamova]

A basic seizure diary would list what time a seizure (or seizure-like episode) occurs, how long it lasts, what happens (to the best of your recollection or anyone witnessing it). You could also include a 1 to 10 rating (based on the range of seizures you've experienced). If you think you might have had a seizure (day or night), but aren't sure, give it an asterisk or question mark, and do your best to describe what you think happened.

Also important to note: What meds you take, and when you take them, when you sleep and how long you sleep. If you feel something that might be a new side effect, make a note of that too.

If you want to get fancy, you can also include things like mealtimes, activities, etc.

Different forms can be found at this link: http://www.epilepsy.com/living-epilepsy/toolbox/seizure-information-forms

...and CWE members will have suggestion for apps or other ways to track seizure info. (Chime in guys!)

Here are some CWE threads on the topic:
http://www.coping-with-epilepsy.com/forums/f23/seizure-journals-10776/
http://www.coping-with-epilepsy.com/forums/f23/seizure-diaries-6128/

 

[Nakamova]

and good luck with the Clobazam! and with uni!

 

[Loopy Lou]

Thanks, i've never kept a proper seizure diary before.

Heading off to pick it up now, after calling the chemist in advance. They only have 9 tablets left of clobazam so will have to pick the rest up on monday when they order some more in. I think i read somewhere about a shortage of clobazam in the UK but i'm not sure.

At least i have a few days to try and get used to it, i would have liked longer, but it is what it is i guess!

I'd better keep a notepad next to me so i can note stuff down.

 

[finalpoet]

I haven't tried that med so I have no idea what kind of side effects that med has. But with my epilepsy diary, I have it noted how long I believe the seizure was. I note what day obviously and for me wether it was a partial or grand mal seizure. I would say for you put down every occurrence in detail and then you can talk to the neurologist and figure out wether it's side effects or not. So I put down every seizure, I found an app called "Young Epilepsy", it's for kids but it has everything, including possible triggers. Check it out.

Sent from my SM-G950U using Tapatalk

 

[Loopy Lou]

There doesn't seem to be anything on here about what time of day i should take it. Hmm... I don't know whether night time would be best because it will probably have sedative effects, or morning so it'll be at the highest concentration throughout the day.

I really don't think i'm getting enough support with this so far from neuro and such. Even my doc said the letter from the neuro wasn't clear enough about what's happening with my Keppra and Topamax.

It would be sooooooooo nice to not have to deal with all this! I'm a little overwhelmed by everything

Ah well down the hatch i suppose.

 

[valeriedl]

In my seizure diary I write:
- Date and time of seizure
- How long it lasted
- What I did during the seizure to help my neuro with determining what type of seizure it was. Like what I did during the seizure, sat and stared, walked around, talked, shook or anything else that might be related to the seizure.
- What I felt like after the seizure, had a headache, was tired.
- And anything else that could be important about the seizure.

I also make sure I write down any questions I have to ask him in it because if I don't I'll forget them.

My neuro actually keeps a copy of my diary in my file!

 

[Porkette]

Hi Loopy Lou,

In my seizure diary I put the following:


-type of seizure and time it happened
-If there is a low pressure in the weather or
if I'm under a lot of stress.
- If I'm sick when the seizure happened

I also use a special key I made up to save space on the calendar

A- aura sz, B- absence sz. cp sz. - complex partial sz. A-CP - aura leading to complex partial sz.
After doing the diaries my neuro was able to see what days of the week and times of the day I was having seizures more frequently along with noticing I am having seasonal seizures meaning I have more seizures in the fall and winter compared to spring and summer.
Wishing you only the best of luck and May God Bless You!

Sue

 

[Sabbo]

I record the date & time, and type of seizure.
For simple partials, since I'm aware of things most of the time, I try to note the exact times. Complex partials are trickier. I rely on witnesses telling me what happened/I did, & the time. Any time I'm having other odd feelings in my head I also note those.

 

[Sabbo]

I also note the location

 

[Loopy Lou]

Day 3, totally forgot about doing a diary.

On the good side, apart from an extra bit of dopiness and a metallic taste, i don't really seem to have any side effects from the clobazam, not sure it's properly in my system yet though so i'll give it a few days.

Ok, looking on play store on my phone to find an app or something lol

I haven't had any of the really spacey partials over the last couple of days (it sort of feels like my head is expanding full of empty space and things don't make sense), so i guess that's a good sign? Some blank moments though.

 

[Nakamova]

Off to a good start!

 

[Loopy Lou]

Had my first day back at uni today, had a lot of trouble paying attention and being focused enough to do some research and write an essay, am hoping it will get easier. Will add the essay to the list of stuff i need to do throughout the week lol.

Have been a fair bit more wobbly than usual over the last day or two. Not so much dizzy, as just really unsteady.

Still early days though, and i haven't had any of the seizures where i feel really spacey, just zoning out really, but i think that's due to the clobazam.

Off for a nap before going out for the night with uni friends, in celebration of student finance day lol.

 

[Loopy Lou]

So it turns out that my pharmacist can't get their hands on any clobazam at all, not even a generic version, because of the supply shortage.

They suggested i ask my doctor to "just change my medication", as if it was that easy!

Took my last pill tonight, guess if they don't have any in by tomorrow, then that's the end of that one. They've been trying all week to get some ordered in.

This is just too hard. I have a million other things going on as well, and this is one more stress i could do without! I think that despite the side effects and such, it was actually helping too.

 

[Nakamova]

Yikes, well that sucks.
Good luck Lou, I hope they can airlift some Clobazam to you via drone.

 

[Loopy Lou]

They eventually got a generic version and i ended up missing just one night before they delivered them to me. I had a few blank moments the next day, but seems to have evened out a little again now. Relieved!

 

[Nakamova]

That's great! I hope the generic works out for you.