Hello. New to the Forum

[crazybarbie]

Hi Everyone.

I've been reading this forum and just wanted to say Wow! This is an amazing site! I've learned more here than I have from my Neurlogist over the past five years! LOL

Here's a bit about me. (Warning - Long Story)

Approx. six years ago I ended up in my local Emergency Department. After having a CT I was told that I had a mild stroke. Long story short I ended up being transferred to a hospital in Toronto but the Neurlogist there said the scan was incorrect and what I was suffering from was Conversion Disorder. Okay. So I tried to move on. But after months AND months of not feeling well. Having weird sensations and my family doctor not listening to me and putting me on anti-depressants and not looking any further into my "complaints". I finally found a Neurlogist in Toronto who took the time to listen. Took the time to investigate and after having an EEG it proved and showed that I was indeed having seizure activity.

My Neurologist said I was having Complex Partial seizures. At the time I was having multiple seizures per day. I was exhausted, confused and depressed. But now I had someone who was going to help. He put me on Trileptal. After finding the right dosage I was feeling much better. I still have trouble with memory and fatigue. But I was feeling better for years.

Last October I had another seizure. It was bigger than previously. It was in my place of employment in front of many people.

A typical seizure for me would be the feeling my of stomach flipping up into my chest. Smelling a strong and unpleasant odour of mold. Then I would feel/hear buzzing inside my head. I could hear everyone and everything around me but yet can not respond to what is being said to me. Afterwards it feels like I had just ran a marathon here and then back again. My body feels like it was hit by a Mac Truck. My limbs feel like cement. It takes everything I have just to hold my head up.

My Neurologist up my dosage and I was good for a few more months.

A few weeks ago I ended up back in Emerg. I had a few more seizures at home and then another at work in front of co-workers and they sent me into hospital.

But seizures have changed. Now it happens right in the middle of a sentence while speaking. The only way I can describe it is like when watching a DVD and the screen freezes. I will be speaking a word and I will get the first letter out and then my brain freezes in mid-word and then in a wave the buzzing/twitching comes on.

The ER department ran level bloodwork on me and said my anti-seizures are EXTREMELY low. We thought that perhaps that the "Crestor" my family doc had just started me on for cholestrol was reacting against the Trileptal. So I stopped the Crestor immediately. But my family doctor does not believe that is what is going on. He has had me repeat the bloodwork and I'm waiting on results.

My neurologist has me rescheduled for another MRI because my last MRI showed new scarring on my brain as well as an "artifact" on my spine all of which didn't show up on my previous MRI.

I'm tired and frustrated. I don't know what to think. I have an extremely busy stressful job and it's getting harder and harder for me to cope.

I'm hoping that maybe my system has just conditioned itself to the Trileptal and perhaps I will have to be put on another med.

LOL Told you this was a long story. Congratulations if you made it all the way to the end. LOL

 

[epileric]

Welcome crazybarbie

Sorry to hear about all the frustration you're going through. I think everyone seems to go through that. I once went through over 5 neurologists, none of whom I like & some of whom I would actually describe as abusive.

I know what you're talking about when you describe how you have trouble responding to what people here. It's like I'm sure I know how to speak but no words come to mind.

Anyway, make yourself at home here. I have to agree with you that it is a amazing site.

 

[huskymom]

Hi CrazyBarbie!!

I right with you on not being able to say what you want. My co-workers have really supported me, and they are very patient. When I have a "brain freeze" they just wait until it is over and help me come up with my word. I know what I want to say, but can't get it out. Congrats for standing up for yourself and looking to new doctors. I haven't been able to find the courage to do that yet, but I think I am coming close. Mine isn't mean, but sometimes acts like I am making stuff up even though my eeg has shown activity and my mri showed lesions. Yeah, I am really good at making stuff up:rock:

 

[neilB]

Well, as you will see from posts in this site many docs interpret our symptoms differntly! Hopefully things will start to settle down. I actually had (still have) low Keppra levels and my Neurologist keeps asking if I'm actually taking the meds ARGH. Feel free to vent or ask for suggestions as everyone is very helpful and supportive here! :hello:

 

[Nakamova]

Hi CrazyBarbie, welcome!

It is possible to build up a tolerance to AEDs. I think over the course of our lives, most of us here have tried more than one AED. It can be an evolving, frustrating process to find the med and dose that works. It sounds like your neurologist is paying attention and that's good thing, and taking another look with an MRI should be helpful.

Do you have a sense of what your seizure triggers are? If you aren't already, it's a good idea to keep a seizure journal where you track seizures, meds, side effects, and anything that potentially might be a physical, physiological, or emotional stressor -- anything from fatigue, to certain foods, to flashing lights, to dehydration. It's a great way to be proactive about your health, and find things that might help in controlling or reducing your seizures.

Best,
Nakamova

 

[PhylisFeinerJohnson]

Welcome! You've found a community of intelligent, kind, caring people...

Here's the skinny on AEDs losing their effectiveness over time...

Almost all first, second and third-generation epilepsy drugs lose their efficacy after prolonged treatment. Perhaps it’s because your metabolism builds up a tolerance to the drug. And ramping up the dosage can work. Or it may be a functional tolerance where your brain receptors have become resistant to the drug. In that case, a change in medications may help. Or adding another med to the mix may improve the results...

“A new critical review by Dr. Wolfgang Loscher and Dr. Dieter Schmidt shows that repeated administration of antiepileptic drug (AED) therapy has diminishing results in preventing seizures in epileptic patients. In clinical trials, the number of patients remaining seizure-free declines over time with prolonged treatment. This review explores how acquired tolerance, the adaptive response of the body to foreign substances, as opposed to innate tolerance (which occurs in patients naturally resistant to certain medications) is responsible for this diminishing effect.

The risk of developing a tolerance to AEDs was traditionally thought to be small. Loscher and Schmidt, however, conclude that while AED tolerance is not a serious issue for most sufferers of epilepsy, it is a significant aspect of treatment in some patients. A few may even develop a cross-tolerance to similar medication. This “multi-drug resistance” is of serious concern to patients with medically intractable epilepsy.

The findings directly conflict with the treatment method many doctors are currently using…

It is standard practice to increase AED dosage until adequate seizure control is obtained. However, this protocol presents a number of issues. The threat of medication tolerance is generally overlooked, as is the idea that epilepsy can be a progressive disease and does not develop at a fixed rate. Further, patients may acquire a tolerance to some effects of a particular drug, but not all.

Loscher and Schmidt have spent decades studying the effects of AEDs, however, Loscher believes that AED tolerance is a topic that has yet to be fully explored, and that more long-term clinical trials are becoming increasingly necessary. ‘Despite the convincing experimental evidence,’ Loscher says, ‘tolerance to the effectiveness of AEDs seems to have been forgotten.’

Research is currently being done on the effects of placebo and conditional tolerance (a mental, conditioned-response effect that the mind has over the body). Doctors are also studying the effects of lower initial and target doses of AEDs. The possibility exists that many patients are being initially over medicated poses a significant challenge to doctors and scientists working toward effective seizure control.”

This study was published in Epilepsia magazine. Epilepsia is published on behalf of The International League Against Epilepsy (http://www.ilae-epilepsy.org/) the world’s preeminent association of physicians and other health professionals working towards a world where no person’s life is limited by Epilepsy. Its mission is to provide the highest quality of care and well-being for those afflicted with the condition and other related seizure disorders.

Resources:

http://www.sciencedaily.com/releases/2006/09/060911111533.htm
http://www.raysahelian.com/epilepsy.html

 

[crazybarbie]

Thank you everyone for the welcome and for the info.

It's so great to hear that I'm not alone and others are going through similar things.

The more I think on it I'm more convince that my Fam Doc is probably right and it has nothing to do with the Crestor and more of my system growing an intolerance of Trileptal. I spoke with the pharamasist to see if there was any record of Crestor reacting against the anti-seizure meds and of course not to my surprise there is absolutely nothing Canada wide. But then of course with my luck I could be the very first. :roflmao:

I haven't kept any written records of my seizures but do know that my triggers do include stress and lack of sleep which of course pretty much describes my everyday life.lol