Update from the neuro - last 48hours

[Wobblez]

So the neuro came around after two days, and guess what, none of my button presses are registering....deep breath Wobblez, deep breath...But he is still picking up random abnormal brain activity, even when I'm apparently not reacting any differently on the video (I look happy reading etc). Whether i've been unsure of pressing the button or genuinely not noticed, i'm not sure. He is continuing with the epilepsy testing and i'm staying up till 4am on sleep dep again tonight. When I have what I feel is a significant "event" they will call a doctor in to take bloods within half an hour to check for metabolic issues. They have finger pricked me several times immediately following an "event" and my blood sugar has been fine.

Here's where it gets complicated...

The doc has several hypotheses

1) I am having a small electrical discharge that cannot be detected on the EEG, and instead of just righting the abnormal activity, my brain is seeing it as a trigger for a seizure and following the same neural pathways and pattern of seizure behaviour that my real epileptic childhood seizures caused. This causes my brain to "imitate" a seizure. He said this could largely be my brain doing this, not me. But i could also be exaggerating it because I know what to expect, I get anxious etc. So basically he's saying I have what look and feel like epileptic seizures, but I no longer have epilepsy, my brain is just following the epileptic pattern of behaviour. And I might have to stay on the meds anyway. It's confusing but I am open to this because I know how powerful the brain can be.

Or it is epilepsy, or something else! He hasn't ruled anything out. He openly admitted that the EEG makes a liar out of him regularly, and his poor patients go home after no readings then have a tonic clonic and end up getting diagnosed that way. But I have had my episodes and they haven't shown up so its not looking likely that i'll be diagnosed with E unless I have a big one.

So its sleep sep again tonight till 4am, exercise bike tmrw and hope for a tonic clonic. Sigh. In the meantime he's booked a psychiatrist to come and talk to me about any psychological basis. I'm happy to explore all avenues because he listens to me, he is honest and he is very thorough. It did upset me though to start with, fear of the unknown, "they don't believe me" thoughts etc. But thankfully he isn't like that. I hope the psych won't take into account my dishevelled appearance and lack of hair hygiene lol...

 

[momof3boys]

I went through the same thing it many ways a couple of years back. Ive went my whole childhood dealing with seizures and epilepsy. In March 2011 I had my first VEEG and to my suprise, I was having alot of simple partial seizures, seizures which Ive never had before. Prior I was having complex partial seizures or grand mal seizures. But one thing we didnt think of is that the neuro cold turkey'd me off both Keppra XR and Carbatrol. Didnt slowly take me off, just flat out stopped both medications. Within a day I was having these seizures and there were activity showing up on the EEG. He just wanted me to have a full blown grand mal seizure. But within the five days I was there, I didnt have a big seizure. He was convinced that the seizures were non epileptic even when he saw activity on the EEG come up. He referred me to a psych dr, and after speaking with her, she was convinced what he saw on the EEG and what he was seeing me have on the video, was indeed epilpetic seizures. The reason being is that she said when you have a person who has non epileptic seizures, the anti seizure medications out there that treat only epileptic seizures, will not stop non epileptic seizures. The day before I was released from the VEEG, I was put back on the Keppra XR. After being put back on that, I had no seizures. That there told her that if the seizures stopped after being put back on a anti seizure medication, then what he saw me having, was epileptic seizures. There were many things she brought up that she was suprised he didnt take into consideration. Like how a persons body would react if they had never been abruptly stopped on two anti seizure medications? She looked it up and it clearly states that when you abruptly stop a seizure medication, you can have a different kind of seizure than what youre use to having. That there would point out as to why I was having simple partial seizures rather than what I was use to having. Also, just because he saw me having the seizures, and they didnt show up on the EEG, doesnt mean that they arnt epileptic seizures, because she has alot of people come in and do tests later on to confirm that the seizures are epileptic and were too deep in the brain to be picked up on the EEG. So in all, there are alot of things to take into consideration. I hope something good comes out of this for you. I was very frustrated when my neuro came in and said this stuff to me. I knew in my gut that what I was having wasnt me making this crap up! I eventually had to get a second opinion, and now Im doing great! I finally found a neuro who will listen and knows what he is talking about! I will pray you get the answers you need! Hang in there!

 

[Wobblez]

Thank you Kristin, it sounds like my diagnosis has just become a thousand miles further away but its so good to have everyone on here as support. So I gather you just kept up the medication and worked on the theory of epilepsy? So confusing and complex ....

 

[momof3boys]

Yes, I was kept on the Keppra XR, and needed an add on medication for the break through seizures I was experiencing. My neuro that did the VEEG was convinced they were non epileptic seizures, even after seeing the psych dr and having her send him all the papers for him to review. I was told by his nurse that he wasnt going to budge on getting me any help with the break through seizures and the Keppra XR was all he was going to give me. She recommended I seek a second opinion. I found a great neuro that my primary care dr recommended and I saw him in March of this year. He couldnt believe the stuff that the prior neuro was saying. Even the fact that the Keppra XR took care of mostly the bigger seizures, he was shocked that the other dr couldnt see that and wouldnt help with the smaller seizures that needed either a bigger dosage in the Keppra or another add on medication. I was put back on Carbatrol only at a smaller dose, and its worked wonders for me!

I hope the drs there can give you more answers and you get a great outcome!

 

[Nakamova]

1) I am having a small electrical discharge that cannot be detected on the EEG, and instead of just righting the abnormal activity, my brain is seeing it as a trigger for a seizure and following the same neural pathways and pattern of seizure behaviour that my real epileptic childhood seizures caused.

This makes no sense to me. If your brain is following the same abnormal neural pathways as a seizure, then it IS a seizure.

I'm glad he's being open-minded and hasn't ruled anything out. Here's hoping more definitive info shows up on the EEG soon.

 

[Wobblez]

It does seem incredibly close to just "having a seizure". He says my events arent typical of epileptic seizures. What about the hypothesis that I psychologically elaborate on minor abnormal electrical activity, or even elaborate on a normal physiological reaction to the point of a psychogenic seizure? That sounds feasible but its odd that I should start doing that now, and not over the past 10 years when I had a break from my seizures, between age 3-15 and then when it started again at age 25. Maybe someone installed Windows Vista in my brain...very problematic lol.

 

[Nakamova]

Maybe someone installed Windows Vista in my brain...very problematic lol.

:lol:
Now that I would accept as a good working diagnosis.

I agree that it's pretty unlikely that you would suddenly develop psychogenic seizures after a ten-year break. If anything I would consider that hormones a more likely factor, since they become their strongest during ages 25-30...

 

[Wobblez]

Hhhmmm. It does seem odd. I guess if I posed that question to him, (why now?) I would likely get an honest but vague answer..."we don't know why, stress, uni etc".

If by the time this test is over we still haven't found any epilepsy, I'm considering trialling a few weeks at home off my medication, if he will discharge me medication free. I can just afford the loss of wages, and I'll probably need the time off anyway. I figure now that i've done the withdrawal in the hospital, it could be a good opportunity to see how I go. I don't think i'll be able to function though, and I think these things will keep happening. I also have exams to think about. So many things to wonder and so few answers about what life will be like in a week's time...

It's 3.09am here - 50 mins left then till my sleep deprivation ends and i can go to sleep!!

 

[Wobblez]

Nakamova, do you know roughly how long it takes to build back up to 400mg Lamictal daily after going cold turkey? Would it give me side effects that would impede my ability to work/study, like headaches, dizziness etc?

And how are you my friend? =) How's the shaky feelings?

 

[JaneC]

Hi Wobblez, can't answer you question as I don't know if restarting is the same as starting, or if titration is the same rate for everyone, but thinking about you in there x

 

[Wobblez]

Hi JaneC, thank you =) I'm in good spirits today. I was on forced sleep deprivation last night so only slept from 4am to 7.30am. Then the tech came in and re-glued most of my electrodes before deciding to take the whole lot off, let me wash my hair (YAAAAAAAAAAY!!!!!) and start again, as they had been on 7 days. So this took most of the morning, and now I've just had lunch and i'm checking in before attempting some study. My hair is fresh and clean, and its all neat and tidy. I'm not sure if the psych is coming today or monday. I saw my neuro very briefly just after my shower and as i was almost fainting in the shower, I didn't have my questions ready to fire so I missed him. All I know is that we are proceeding as normal and it looks like i'll be here for the full 2 weeks.

 

[Nakamova]

Nakamova, do you know roughly how long it takes to build back up to 400mg Lamictal daily after going cold turkey? Would it give me side effects that would impede my ability to work/study, like headaches, dizziness etc?

It would be best to titrate up at the same pace you did the first time around. You might experience the same side effects (if any) that you experienced during your first ramp-up -- as always it's hard to predict.

 

[Wobblez]

Thanks Nakamova, I am so grateful to have all of you to talk to. I can feel my anxiety increase, with each answerless day that passes. I feel guilty for being here when there so many more seriously ill people around me. I just have so many uncertainties and I'm actually really looking forward to discussing them with the psych (assuming he or she will be nice). I'm assuming the psychiatrist will put me back on meds to start with, and work with me to explore the possibility of a psychological basis to the seizures. Or if the doc can't rule E out I guess he'll put me back on as per duty of care etc. My gut and previous experience tells me I won't be able to function very well without meds but as I'm over the withdrawal period and have booked time off work I'd like to consider trying. Still have exams to think of too. Oh I don't know, trying not to get anxious about all these uncertainties. Driving is just one of them! Will I be safe at home alone? When can I get back to work? Should I defer my exams or just get them over with? I haven't got any decent study done in the whole week I've been here. Too many distractions. My parents fly out to England for a month the day after I get out, so my mum will be worried, and I won't have her to rely on for transport. I'm hoping I receive the replacement tyre in time for my dad to fix my scooter before he goes. How will I know when to gp back to work? Am I even sick or is this just anxiety? And I can't stop sneezing and the poor man next to me is bright yellow and has to wear a mask. He must have liver problems. Say if my cold kills him!! I know I know. Too much time to think.

 

[Wobblez]

I pressed the button last night, first time in 24hours. The nurse known for her grumpiness was on and she poked her head in the door for a split second, saw that I was upright and looking at her and gruffly said "she's fine" and stormed off!!! That's the second time she's done that! I said my usual "sorry about the sirens, I'm okay I'm just recording the feeling for the EEG" to the younger nurse who happily asked me what I was feeling etc, wrote it down and ensured I was ok then left. Everyone is lovely her, except that silly woman, but she is enough to set off my guilt and self doubt. I keep reminding myself that I'm here for a reason and should just ignore her. That button press didn't show up on the EEG either.

 

[MuayThaiFighter]

I think people with poor bedside manner need to leave the health care system. This test is serious, and she should treat you with more respect. Don't let anyone make you feel guilty or self doubt yourself. All any of us want is a better quality of living.

Truthfully I think she's jealous. She can't be as cool as you. Its the plain ole truth.

 

[Wobblez]

Thanks MTF, you're probably right. The test did show I have an incredible sense of humour.... =) Everyone else has been fantastic too.