Off to see the big scary neurologist tomorrow!

[Loopy Lou]

I'm pretty much sure he said to me last time i saw him to keep a seizure diary. Have i done it? No.

Well, i can remember the dates of the major ones but haven't even been keeping count of partials. He told me last time that i was probably having less seizures than i thought i was, my family thinks i am having more than i think i am, and i'm just plain confused.

I know i had one tc in february, one on 19th april, and one last wednesday which isn't too bad for 7 months. Again, i'm not counting when i THINK i most likely had a nocturnal, just when i definitely know i had a seizure.

Damn you screwy brain! *shakes fist*

Anyone else getting this confused?

 

[Loopy Lou]

I might bring up that i haven't heard anything about the MRI i was supposed to have (about 14 months ago) and the neuropsychologist i was supposed to be seeing (about 8 months ago) onder:

 

[Endless]

Lou,

Thats why the darn seizure diary is so important. If we write it down then we don't have to remember it, and it doesn't matter if we're confused later. Thing is, we have to remember we have a diary to write down in.

I get confused, too. It could be either meds, seizures, or another neurological condition that I have. Who knows. Some days I'm pretty good, others it's so bad it's ridiculous. I forgot I had a sister for two or three days. She's not letting me forget about that one. I forget what day it is, can't remember if I paid my bills, don't recognize people, get lost, sometimes have no idea if I've had a seizure or something else happened.

Hang in there. I'd say things will get better, but sometimes they do, sometimes they don't. We need to just roll with it the best we can. We're just more lovable this way. (sort of)

Ask your doctor for the orders for your tests, and walk out with copies of them!

 

[Nakamova]

Write down what you can remember -- even if you're not sure, it gives the neurologist a rough idea of what's been going on. And make sure he knows how you've been feeling in general -- fatigue, sleep, energy levels, etc.

Definitely ask about the tests too! And let us know how it goes.

 

[Loopy Lou]

Getting orders for the tests will be impossible. It works differently over here, the neurologist will write a letter to whichever department it is and ask them for an appointment. Unfortunately, because we have the NHS, we don't employ our doctors so pretty much any attempt on my behalf to request stuff will be ignored. Most i can do is call and nag. A lot.

Usually i can never sleep the night before i go to see the neurologist because i get quite anxious. I think tegretol might help me out there though. It's 7.30pm and i'm already sleepy, even after 15 hours last night and a two hour snooze today lol!

 

[Loopy Lou]

Just noticed your post Nak! Must have been writing at the same time lol.

I'm just making a few notes at the moment of what i can remember. Usually he looks at me kind of funny if i say i'm not sure about something, so perhaps i should only write down the events that i'm sure of.

Because i live on my own it can be very easy to miss if i've had an absence. I just wouldn't know unless i missed something really obvious.

 

[Nakamova]

Main thing to discuss is quality of life -- i.e. if sleepiness is the #1 problem, or memory, or seizures, or whatever -- let him know.

 

[Loopy Lou]

Ok thanks for the advice. I think the thing i'm most worried about is the weight gain and extreme sleepiness from the Tegretol.

I might ask to just stay on Keppra on its own for a while and see how it goes. I'd sure feel better without the tegretol side effects. Seizures suck and they make me feel crappy for a while, but it's better than feeling crappy ALL the time.

 

[valeriedl]

It's important to make sure you keep track of the seizures that you have, or think you had, so that you know you are telling the dr about all of them. This way the neuro can make sure that you are being treated right and what meds the drs are giving you are the ones that you need to be taking. I don't know if your memory is as bad as mine but I could have a seizure a week ago and I don't remember that I had it.

When I first started my diary I got a small pocket calander, something to keep in my purse so I always knew where it was and always had it with me so I could keep track of them. I wrote down how long the seizure lasted, what I did during it and how I felt after it.

I also kept a sort of 'diary' in it too. I'd write down things that I did that could have caused the seizure. For instance if I were sick at the time, went to a concert, had family get together, if someone got sick and may have been put in the hospital, if I saw a dr for something and other things like that. This way if my neuro had any questions I'd have the answers right there and not have to spend half the visit with him trying to remember the answers to the questions that he might ask me. You usually only get so much time with the dr during a visit and I'd rather spend it on more important things than wracking my brain.

I even type up a paper with the dates of the seizures and the info about them and give it to the neuro when the visit startes so he sees it and I don't have to go flipping through the calander finding all the seizures so I can tell them how many and when they were.

 

[Loopy Lou]

Wow, you're so organized!

Well i can remember the dates of my major seizures, and i'll tell him that i'm still having partials most days, with bad days perhaps once a week.

I'm so the opposite of organized

Also, i should point out that my neurologist is neither big nor scary. Just a bit stern. I get very anxious before my appointments.

Gonna go get some breakfast, chill out and have a bath and then head up there later. Appointment isn't til quarter past 6 in the evening.

 

[Nakamova]

Our neurologists (in the U.S.) are never available for evening appointments! Is that normal in the UK?

 

[Loopy Lou]

Yep. For some reason my appointments have always been in the evening. I think their hours are longer than normal consultants. I don't know if my neuro has a clinic during the day, i think he has other obligations too.

They have a pretty big caseload. I'm thinking of asking to be referred to the hospital in my town (currently i go to the nearest city hospital). That would mean losing the support of my epilepsy nurse though.

But so far i've been having problems with the city hospital because of referrals going missing, test results not being passed on, tests not being done etc.

I seem to "slip through the cracks" an awful lot, even my nurse has noticed.

 

[Nakamova]

I always liked my epilepsy nurse better than the neurologist. The nurse had epilepsy herself, so that made all the difference. But I had to switch hospitals when my insurance changed, so that was that. It's been a trade-off probably similar to what you face -- the new hospital is closer which is nice, but the new neuro is sort of cold, and I doubt I'll see an epilepsy nurse ever.

 

[Loopy Lou]

The hospital i currently go to is apparently the best neurology centre in the north west, but so far i haven't experienced that. I've only really seen lack of communication and being forgot about. Plus, whenever i have an appointment my mum has to take time off work to drive me there, wait (though she usually comes in with me because my memory is terrible and she can remember stuff for me) and drive me back.

I don't know if they even would let me change neurologist. I'd have to ask my GP i think. It's not an insurance issue obv because of the NHS, more of a funding/go where we put you issue.

I'll see how it goes today and then try and make a decision.

 

[valeriedl]

Wow, you're so organized!

Well i can remember the dates of my major seizures, and i'll tell him that i'm still having partials most days, with bad days perhaps once a week.

I'm so the opposite of organized

Also, i should point out that my neurologist is neither big nor scary. Just a bit stern. I get very anxious before my appointments.

Gonna go get some breakfast, chill out and have a bath and then head up there later. Appointment isn't til quarter past 6 in the evening.

Thanks Loopy Lou

I also write down any questions I have to ask and the meds that I need refills on. I've usually got about 3 pages that I give him with all that info on them, I hope he likes that I do that.

As I said, you only get so much time with the neuro and I don't want to spend it trying to remember things, flipping around through things and digging out pill bottles.

 

[CQ:)]

I also write down any questions I have to ask and the meds that I need refills on. I've usually got about 3 pages that I give him with all that info on them, I hope he likes that I do that.

As I said, you only get so much time with the neuro and I don't want to spend it trying to remember things, flipping around through things and digging out pill bottles.

Valerie -
I do the same thing in regards to printing of information for my neurologist.
I write all my seizures (even the weird episodes I sometimes had in middle of night) in my seizure diary. When I am due to see the Neurologist i would type up the details from my diary, I also put what dosages of medications I am on at the time & then print a copy of. So when I did see the neurologist I would just hand him the print out so I didn't have to think too much lol.

For a while I used to wait until I had at less 4 seizures before I would go see the Neurologist so often I would have 2 - 3 pages printed out.

When I saw the epitiologist in June 2010 I had typed up for him my whole history of epilepsy - from a quick run down of my epilepsy history as a baby to the seizures I had from 2002 - 2010. I think it was about 15 pages of information I gave him lmao.