Questions around Epilepsy

[Bergoomay]

I was recently diagnosed with E in June 2010; after 37.75 years of no issues. I was at lunch with a friend one day and after eating, I passed out for about 30 seconds. I was not completely out; as I could hear her speaking to me; I just couldn't move my limbs or open my eyes and a fast hear beat.

That afternoon, I had at least 13 similar episodes within about 5 hours. I was admitted to the hospital for 3 days where they completed an EEG (20 minute test). I had a couple MRI's completed (With/Without contrast). The neurologist on call identified it as E. I have been to a couple different neurologist since June and both seem to come up with Generalized Complex Partial Seizures. I have tried Topomax which seem to prevent the episodes from showing up on a 24 EEG test and then I was switched over to Keppra. It hasn't been an easy switch since it appears to put me in a BAD mood. I am still having episodes as least 3 days a week and 3 -4 each day that I have them.

Here is how they feel. My eyes and head start to feel funny, almost like they are going to spin and how you feel when you have a fever. I feel like I can't focus on anything which makes me want to widen my eyes as far as I can. I can move my arms and legs and hear EVERYTHING that goes on around me. I have even repeated my stats (BP, Oxygen, HR, etc) back to a dr while doing a tilt table test. My eyes can't open which is the only thing that really bothers me. My DH and 6 year old has seen it so many times, we don't even react to it anymore.

Has anyone ever had this type of situation? It all started right after we did fertiility treatments and the episodes use to be centered around that time of the month and the time of ovulation. Now they just occur whenever.

I have started reading the Epilepsy 199 answers book and it has cleared so much up for me. I am not even sure what to ask my Dr when I go back on 2 Dec; as he is wanting to see me about the mood and frequency of these episodes. He told me last time that the 24 hour test another Dr did could have not shown E activity because it was generated deep within the brain.

I am not sure I can descripe the symptons I am having to 100% in order to provide him an accurate descrption. My DH has gone with me to each appointment so we can both chat with him and hear what he has to say.

Does anyone have any suggestions on how to describe what occurrs before, during and after the episode?

Thank you all for your guidance; as it has been a LONG 6 months for my family and especially my 6 year princesses!
Connie

:giveup:

 

[Nakamova]

Hi Bergoomay,

A few things: Keppra is known to affect mood and cause "Kepprage"; many people find taking a vitamin B6 supplement helps. If you aren't already taking one, you might want to consider it (assuming it's okay with your doctor).

Epilepsy can be triggered by fluctuations in hormones -- high estrogen levels, low progesterone levels, or both. It sounds like that might have been a factor in triggering your seizures. It may still be -- you might want to have your estrogen levels monitored, and ask your doc about catamenial epilepsy. For people with catamenial epilepsy, the levels of AED in the blood can fluctuate too, sometimes by as much as 30%, so it's possible that your Keppra levels aren't staying consistent, and should be tracked as well.

I think you are describing your seizures well already, but the more details the better. It's can very helpful to keep a seizure journal where you note down when your seizure-like episodes occur, how often, what happens, what time of day, what time of the month. What situation are you in when they occur? How long do they last? Can they be interrupted? How do you feel immediately after each episode? If you can, you should track other physiological markers as well -- how much sleep you're getting, what you're eating, how you're feeling overall. In this way you may be able to see if there are any particular triggers (like hormones) that are a factor in your seizures. The number one trigger is fatigue, but you could also be sensitive to something in your diet (like aspartame or MSG or gluten) or in your environment (like flashing lights).

Best,
Nakamova

 

[ColmanMac]

Hi Connie; Hope this finds you well (though I know its a bit of a stupid question!). Like you, Im a newbie on site and was first diagnosed in 1997 but after a couple of initial seizures, literally had nothing more til about 2000, when my episodes would fluctuate right through the spectrum, from basic absences to petit mal, to partial seizures - Grand Mal & now to status epilepticus after suffering a related brain injury in 2006.

My absences are exactly that - like day dreaming, just staring into space & although I'm aware of sounds around me (TV, radio, people speaking to me) I just cannot respond at all.

I'm "fortunate" to get an aura before a Sz so I know I'm gonna have an episode. There's nothing I can do except get out of danger, away from traffic, sit or lie down in preparation for the Sz but I have no control over intensity/length/etc.

I have to have quarterly reviews (MRI/EEG/bloods, etc) & there's talk of surgery which Im not sure about as the risks seem to outweigh the benefits in my mind.

My meds are constantly being changed at reviews because I'm an unstable epileptic (mind you I was always "unstable" before the diagnosis!). But Consultant is determined to get to the bottom of things & I have to say she's damn good & I have every confidence in her - the fact that I enjoy going to see her speaks volumes.

I still work but have to take things very slow as my work is quite pressured involving travel around Europe (I'm writing this on laptop in Frankfurt hotel room!). But if I'm running for a train which is pulling away from the platform I have to let it go & wait for the next as the sudden burst of adrenalin to the brain could be my undoing.

I have no short term memory and no sleep pattern - I can be asleep @ 6pm; awake @ 2am; asleep @ 10am & awake @ 6pm - like permanent jet-lag. But oddly there are more plusses than minuses for me. I can't drive but I just train/plane it everywhere so taking laptop means I can work en route to wherever I have to work. But I have a terrific boss and really couldn't wish for anything more there.

The one thing to get used to is none of us are the same with this "condition" - you just have to chat to the rest of the gang to realise that. I faced a long hard slog at first which I'm still facing - but I'm not doing it alone coz. I've got all my friends here to help.

All I really want (apart from a reduction in Szs) is to be made redundant & have more time with my wife & kids. It's ironic that I don't need my work, would easily walk out tomorrow yet there are others fighting for their jobs. The only thing keeping me where I am is my loyalty to my Director as wev'e been together a long, long time.

Of course I could always hit her and get sacked but she punches harder than I do.

But at the end of the day, I refuse to let this thing beat me. I know it sounds full of platitudes but you do the same & let me know if I can help.

Col.

 

[Bergoomay]

Thanks Nakamova and Col for the feedback. I am keeping a journal of most things except my eating habits. I am a runner so I usually eat healthy choices but wondering if some of those healthy choices are causing issues. I normally keep track of what I eat from a calorie intake Vs burn perspective but might need to start keeping track of it a little better. This could identify any triggers from a diet perspective. I greatly appreciate the commetns as sometimes we feel like we are in this all alone until we get awesome responses such as these. My immediate family (DH and 6 year old daughter) have been great through this entire process. It has been a VERY long road for us and I am sure the journey is not over. In life I have tried to make healthy choices (diet, exercise, running, etc) and it makes one question WHY???? I sure hope in the end this endeaver I am on, ends in a great way for my ENTIRE immediate family.

Thanks again for your insight into some of my questions.
Connie

 

[ColmanMac]

Lesson number one, Connie - YOUR'E NEVER ALONE!

Re: diet, perhaps that may warrant a bit more detective work but, as someone who'll eat anything & has the constitution of a horse, I don't think I'm best placed to advise. Do you have a "tame" nutritionist nearby;

Re: Logs, Diaries, etc. - Absolutely essential & I don't know how you feel about having your Szs videoed. (See previous posts). I get a lot of mine filmed and theyve proved essential for my Consultant re: my care & regular 'MOT's'.

Look after yourself
Col.

 

[Bergoomay]

Thanks Col. I appreciate the feedback. I need to be a bit better at keeping track of diet but considering I am starting the training season for another half marathon, I am sure I will do a better job this winter.

How far from London do you live? My family is coming there next July and I am considering running a race in London or Edinburgh if I can find one during our visiting time.

Have a great week!!!

 

[ColmanMac]

Hi Connie; Wer'e over 350 miles from London, right up in the Tyne Valley & just on the English side of the border. Around here there tends to be a greater affinity with the Scots than the English!

On the other hand, wer'e only 85 miles from Edinburgh and 10 miles off the Border.

I've said before, here, that the tourists think the Roman Wall was built to keep the Scots out of England but, in reality, it was built to stop the Scots joining with the Northumbrians (called Border Reivers) and kicking the brown stuff out of the Emperor Hadrian's army!!

If I can be of any help re: organising practicalities for marathons, let me know.

Col.

 

[RobinN]

There is known research that an imbalance of hormones (estrogen dominance) can cause seizures if your seizure threshold is lower. One prescribed method of treating them is to give bio-identical progesterone, to help balance the two. It could easily be connected to your fertility treatments.

Drugs are only a bandaid on the situation. They are not clearing up the original cause.
We found a neurologist that specializes in woman issues. However, she has no background in nutrition and the role it plays in hormonal balance. She did prescribe the progesterone ( after I did the research and requested it), yet she did no testing which bothered me. She also only was able to offer more medication after my daughter had a glucose tolerance test. So I doubt we will be back.

Perhaps your gyn can help you research this. To me, it doesn't sound like the meds are doing what they are intended to do, and it seems silly to continue taking them, only to put you into a stupor, which defeats the purpose. If quality of life is reduced, it isn't acceptable to me, or my daughter.

 

[Bergoomay]

Thanks Robin. I am pass due for a meeting with GYN since I can't drive to get there but might have to go ahead and schedule that appointment for as soon as I can get one in. It just seems odd all of this started after our fertility treatments and I had no problems before that.
Connie

 

[Bergoomay]

Thanks Col. We are looking forward to visiting England/Scotland as my husband and I both do Genealogy research and his family has been traced back to Scotland.

If you have any recommendations on sight seeing or castles to spend the night at, please feel free to pass them along.
Connie

 

[ColmanMac]

Will do Connie - Is it specifically Scotland you want to concentrate on re: tourism or the Scots/Northumberland Border?
In the meantime I'll dig out the relevant local authority websites which house tourist info. functions.

BW; Col.

 

[RobinN]

Connie - I just reread a comment of yours and it connected with me.
My daughter has been a figure skater for almost 15 years. She trained every morning.
I thought I was giving her good nutrition etc...
I now know that was not the case. Not good Brain food, not food to keep the GI system healthy. The two go hand in hand. On top of it, what her body was needing for energy, etc was more complex because of her physical needs.

Ours has been a roller coaster ride, and the meds made it all worse. I think now that Rebecca is in college and the training is at a much lower level, and her nutrition is more structured, we are seeing positive results.