Hi - Feeling a little lost

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

Deano

New
Messages
3
Reaction score
0
Points
0
Hi Everyone,

I always feel a little awkward making a first post on a forum, especially if the first post I'm making feels a little aimless. First of all a little about me. I'm actually not sure if I'm even posting on the /right/ forum. Although I'm sure I've had some form of undiagnosed seizure activity most of my life the worst of it has been, as far as I can tell, medically induced (as you will see below).

I'm 30 years old living in Western Sydney, Australia. I've got a loving wife who is my absolute rock and an 8 month old son who is my world. I'm a nerd by profession and a Mr Fixit by hobby (The wife hates it actually, I have dozens of projects at home that'll "Get finished soon, I promise!")

Throughout my life I've always had moments where I've been told I'd just "stop" and do nothing for up to a few moments at a time and generally become unresponsive. This was always followed by myself coming to with a severe headache.

I'm not sure why this was never investigated by my parents and by the time I was old enough to worry about it myself it was just something that happened, so I never really bothered myself.

This went on until about 5 years ago when I had some issues that caused a fairly significant mental event and resulted in a major depressive disorder that required psychiatric treatment. At first I was trialled on a series of medications including Lovan, Abilify and a variety of other anti-anxiety and anti-depressants with no real effects. And I was placed on Nardil (Which is a MOAI inhibitor class of anti-depressants) which dramatically helped improve my mood.

My wife also mentioned the Seizure activity to my Psychiatrist who referred me to a Neurologist for EEG tests which showed no abnormal activity. The Neurologist actually made us feel as though we didn't know what we were describing and dismissed it as nothing to worry about. This opened the door for the Psychiatrist to treat my condition with Epilim, which, as things had it, caused the Seizure activity to dramatically worsen to the point that instead of something that would occur perhaps once or twice per month that over the course of the month that I was taking the Epilim the acitivity increased to 10-15 times per day.

I was immediately taken off the Epilim and the seizure activity abated slightly but not entirely. Instead of just 'zoning out' now I would actively have muscle twitching in the hands and feet and despite the brief drop off after the removal of epilim from my drug regime the frequency was slowly increasing.

From that point onward I had lamictal prescribed at a 50mg dosage which did help with both my mood and the rate at which the seizures were occurring. But did not help the fact that they were still worsening in severity and duration.

Earlier this year the Psychiatrist also introduced Topamax into the mix in an attempt to further bring my mood under control, this seemed to have no direct effect on any thing really - except for ruining my taste buds on all of the 'good stuff'

About 3 weeks ago due to side effects relating to the Nardil (Fluid retention mostly) I had to stop taking the Nardil. A surprising effect from that was that the seizure activity virtually stopped in it's tracks. Although, since then, I feel as though I've had a post seizure headache almost endlessly. Any kind of light source is absolute agony to the brain and I awake from sleep feeling like my brain is going to erupt from my skull, so I'm actually not convinced that I'm 'cured' so to say, just that things have changed form in some way.

I do apologize for the big rant but as I said, I'm feeling a little lost and I'm not sure why I'm actually posting this all here, I think I'm just hoping for that magically bullet maybe - perhaps a recommendation for a legendary neurologist in Western Sydney??. I just stumbled on this forum while looking for new lights to replace the ones that are giving me headaches.
 
Hi Deano,
Wow, the Fates and the medical community have not been kind to you in all of this! My seizure disorder of over 30 years (I'm 55 now) has not been well controlled by meds but at least is hasn't been exacerbated. Like you, I had "episodes" as a child that were seen as odd or something, but they were never dramatic enough or frequen enough or disruptive enough for anyone to do anything about them. It was only in retrospect, after having my first tonic-clonic seizure, that we realized this had been going on for much longer than we had thought. I mostly have partial seizures now, poorly controlled by meds, and I am looking into having a vagus nerve stimulator implanted to (I hope!) reduce the frequency of those seizures. Enough about me!
As for your situation, frankly, at this point I can't think of much in the way of words of wisdom or practical advice. It seems that you are taking the necessary steps and working with your various docs to try to address the fundamental problems, and the side-effects of the attempts to address those problems, and so on, ad infinitum! (Sadly!)
I can tell you that there is a very supportive bunch of people here and you will get loads of advice and stories from all over the spectrum, and the knowledge that you are not alone in this journey. That is a very valuable thing, because in general the seizure experience is difficult for people to understand if they have not experienced it themselves, and it is pretty scary for family members and friends, so we can't always confide in them 100% because we don't want them to be more freaked out than they already are. I'm in the western US so I have no knowledge of Australian neurologists, and my supply of magic bullets seems to have somehow vanished.
I like the fact that you're a "fixit" type person. I'm kind of that way myself and also have half-finished things floating about.
Keep us informed on how things go. I'm sure you will be getting lots more answers!
 
Hi Deano, welcome to CWE!

You're in the right forum for introducing yourself. :) It sounds like some or all of the drugs you've been on may have been exacerbating your seizures. Many anti-depressants (including Nardil) can lower seizure threshold, and even some anti-seizure meds can have a paradoxical effect and make seizures worse. All of the brain meds can affect neurochemicals in powerful and sometimes unpredictable ways, and it gets even trickier when you are taking more than one.

Your current nasty headache and light sensitivity are most likely withdrawal side effects from the Nardil. Did you stop all at once, or very gradually taper down? Either way, since you've been on it for nearly 5 years even a relatively slow taper might still be hard on your brain, and it may take a while for your system to re-adjust. You might try taking a B-complex supplement (particularly with B6) to help address deficiencies (Nardil messes with B6) and boost serotonin levels that have crashed in the wake of the Nardil withdrawal.

Bet,
Nakamova
 
Thanks for the kind welcome and responses as I said in my first post I was very nervous about actually posting (I think it was more to do with declaring my mental state than anything else)

I had a rather rapid taper (reduction from 135mg/day in less than 1 week) with the Nardil at the advice of my doctor as he wanted to get me onto a new drug before he went on holidays over the Christmas period. Unfortunately he seems to be indicating that he is at 'wits end' with ideas for drug regimes and is on a last ditch effort by prescribing an off label treatment of Buproprion for the depression, which I started a course of on Friday last week. I understand that it has FDA approval in the US for such usage but never received approval here in Australia and is instead only used as a quit smoking aid.

I hadn't really considered that the withdrawal effects could have lasted longer than the washout period but actually thinking about it I can see how that would happen. I'll head to a pharmacy sometime today and grab some B6 vitamins and see what they do after a few weeks. I really do appreciate the suggestion given.

Thanks,
Dean
 
Hi Dean, First of all, welcome!

I am so glad you posted and also for the replies underneath it. You guys are constantly ripping back the curtain that has been hanging over my life and leaving me in the dark about my condition. I didn't know about all the different kinds of seizures until I joined here. I didn't know anti-depressants could lower the seizure threshold or about medication paradoxil effects until I read this thread. Everything is starting to make sense...

I am grateful that people are so open and willing to share so much.

What happened to you with Epilim, happened to me with Nardil and to a lesser degree, two of the tricyclic anti-depressants.

You came off that big dose of Nardil WAY fast and I can't even imagine how horrible you felt, or may still feel. I think it's great that the Psychiatrist is willing to prescribe drugs that help with both depression and seizures, but if you still feel you've always had some sort of seizures going on that get worse with medication then do get another Neurological evaluation.
 
Last edited:
My Psychiatrist is a pretty fantastic guy. Thankfully he is actually one of the few that actually takes a holistic approach to treatment rather than one of the pill pushers and actually had the patience with me to understand that I had an issue with revisiting a Neurologist at the time.

I will definitely be seeking a proper understanding of my condition soon though, I'll ask for a referral next time I see my General Practitioner.
 
Back
Top Bottom