What should I ask my neurologist?

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shonafrances

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Hi I have just posted earlier today in the new people section and got some lovely replies. I am being tested for Temporal Lobe Epilepsy (simple, partial I think) as I get déjà vu episodes complete with hideous fear, nausea, tingling arm, audio/visual hallucinations. I also have mood irregularities. It also seems strongly linked to my period (I get them just before or during).
I had a normal MRI and the EEG came back with 'suspicious activity on left temporal lobe, not definitive of epilepsy'.
I am seeing the neurologist next month as I haven't seen him to discuss the test results etc.
I want to go in as well equipped as possible so wondered if I could ask some advice on what to ask?
If he says he can't diagnose it on those results what else should I ask him to do?
If he does diagnose me any advice on medication? My main concerns are a) Weight gain- not from a vanity point of view but because I am doing really well in recovery from anorexia so don't want to be destabilised by sudden weight gainand b) I am writing my phd and am worried about my concentration being effected
Do I need to ask for any specific treatment if they are seizures and are triggered by my periods?
Any other questions you think I should ask?
I will take my 'seizure' diary to show him.
Oh and can I just share that I had one of my déjà I episodes last night before bed and the day before in the afternoon and now all day to day I keep feeling like one is about to happen, I HATE that feeling, it is so distracting and anxiety provoking! I was invited out tonight but won't go as I am scared of it happening when I am out :(
 
Ummm... well, obviously not a doctor here, but if you're having simple partials, and you DON'T want weight gain... I'm on Lamictal, it has helped tons, and I the only negative side effects were at first. No weight gain, and my brain functions mostly normal now (some weird dreams, but that might be Keppra too). Keppra actually made me lose some weight, but it really affected my moods. Those are the only two I've used, and they don't leave me zombie-like.

I don't know a TON about the period thing, but I know progesterone helps some people. Mine are always the worst right before my period, but happen sporadically. I do know it can be a trigger. Are you on birth control? I know some of them make a difference. I'm on non-hormonal because hormonal turns me into an emotional wreck, but I have heard they can help, so you might want to ask about that.

Definitely be informed of medications though if you are concerned with side effects. I had a nurse practioner almost prescribe me Depakote because it's the first one she thought of, and I basically said no, I'd rather stay in Keppra, because the side effects are awful. Epilepsy.com has some good information. Here is a link (though there is a bunch of information throughout the site): http://www.epilepsy.com/epilepsy/seizure_medicines

Also, crazymeds.us has tons of info. I really like it because it's pretty straight forward.

Best of luck and I hope it works out for you! I think bringing along the seizure diary is a great idea :)
 
Running girl that is really useful thanks soooo much.
I'm not on birth control as I have found it effected my moods in the past.
It is so hard as I may not even be having seizures and I also worry that the neurologist will get annoyed with me if I am too opinionated, but at the same time I had a psychiatrist put me on medication before that caused rapid weight gain and rage and another psychiatrist couldn't believe he had prescribed it considering my history, but being trusting I had taken it, so I have learnt the hard way that you need to equip yourself!
Thanks for the links :)
Have you had epilepsy for a long time?
 
can you ask your doc to do full blood check on ALL vitamin and mineral levels......pack in as much as they can....
 
my Son is also in Neurofeedback...which you can read breifly about in 2nd link..
 
shonafrances said:
Running girl that is really useful thanks soooo much.
I'm not on birth control as I have found it effected my moods in the past.
It is so hard as I may not even be having seizures and I also worry that the neurologist will get annoyed with me if I am too opinionated, but at the same time I had a psychiatrist put me on medication before that caused rapid weight gain and rage and another psychiatrist couldn't believe he had prescribed it considering my history, but being trusting I had taken it, so I have learnt the hard way that you need to equip yourself!
Thanks for the links :)
Have you had epilepsy for a long time?
Click to expand...


You're quite welcome :) mine started in 2010 but I didn't get diagnosed until april. I have.just done tons of reading. And yea it's really frustrating not knowing. My first seizure got dismissed and I went untreated for two years. After that I made sure to educate myself. Definitely important :)


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For what it's worth, I was on Dilantin for about 15 years, then stopped because my sz control was getting worse and I was having gum swelling. I've been on lamictal for about the last 15 years and I am happy with it a=overall. I had a short trial of both Keppra and Zonegran and felt like I wanted to jump off a bridge or something. It was the worst I have ever felt, emotionally. (That's me, though. Other people may not be affected that way.) Now I'm on Trileptal and Lamictal, and doing mostly ok. I've had about 10 partials so far this month which is fewer than it could be)

Good luck with this journey! You will do fine! We are all here for you. :)
 
Hey, welcome to cwe ;o :), like you im just going through the "diagnosis period" , but I haven't had mri results yet or anything, neuro next month, im on carbamazepine but to be honest don't think would be great for you, it can make you put weight on even though im yet too have too, but I think that's just luck I eat so much because of it, my gp said just write everything down in your seizure diary it should be enough it redices the third degree if you like when you get too the appointment!! :), so just keep going with that, good luck and give me a shout how you get on!! :) -hugssss-
 
Thanks again for the encouragment Arnie, it is so good to get!

Maisy, thanks for sharing, it is horrible waiting and not knowing isn't it? What sort of seizures are you getting? I basically don't want a medication that will effect my appetite (either up or down) as that could be really problematic for me. In the summer a psychiatrist put me on Mirtazapine and it made me want to eat the whole world and stab people (i didn't stab anyone but i did gain 10lbs)! No fun at all for me or my patient and very lovely partner that I was screaming at and then sobbing in the arms of three seconds later. I have accepted the weight gain (as much as i can and with a lot of hard work) as I am at a healthy weight but anymore would be tricky. And if it reduced my appetite and I lost weight, also very tricky! So i just want to go in with some knowledge so I don't end up taking something in good faith that will interfer with my recovery from the eating disorder. Of course the neurologist may well not prescribe anything or even diagnose anything....Oh the uncertainty is awful!
 
just had my letter through in black and white sounds like im being invited to a birthday party wtf!!, fools, anyways yeah it is frustrating, im getting tonic-clonic and complex partials maybe unsure about these, thing is with the meds, all have there own side effects whether you get one or the other or any is pot luck, as obviously effects us all different, just remember be your own advocate :), be one step ahead and you tell him, had too learn this pretty quick had 5 stays in hos since December and numerous A+E visits
 
Masie that sounds crappy, sorry ur having to go through this ((hugs)) and yeah that is the thing isn't it, who knows how the individual will react to what meds, ugh, what a pain! good advice about being my own advocate, thank u :) Hope ur appointment goes well xxxx
 
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