Helpless

[Atmosphere]

Hello out there,

My wife (24) has recently had 2x tonic clonic seizures. I would say that I have been "lucky" to have been with her for the last 3x seizures in that I was able to hold her hand, tell her I love her, and be the 1st one she sees after she stares blankly around the room like a newborn baby.

She is on Lamotrigine 200mg and religiously takes her meds every morning without fail. She has only had 7x seizures (tonic/clonic) since it began when she was 19/20. So to a great deal I guess she's also lucky by it not being something as difficult to come to terms with as 1 per week/day!

It's a double edged sword however, as the neurologist obviously can't make very accurate conclusions as to what triggers it.

Seizure 1-4 has not been witnessed by anyone - and she was simply found lying there - she has gone for an EEG etc after the 1st time... but I'm particularly annoyed at her Neurologist actually for not scheduling follow-up appointments, and she's only seen her twice.
What annoys me most about neurologists is that you have to book like 3 months in advance - but I guess thats a process of elimination, and eventually getting to the right doctor.

Last wednesday was the 1st time she had 2x TC seizures in one day (8 hours apart). There were no apparent auras other than her waking up with a headache that morning, and the TC seizure happening while we were eating lunch at 13h20.

I cleared the food out of her mouth, and had to move her off the wooden chair on to the ground. I know you're not really supposed to move them when they stiffen up, but she has something called osteogenesis imperfecta aka "Brittle bone disease", so I really don't want her to be hitting her bones against anything at the risk of them breaking!

This time it lasted the 'normal' ±2 minutes after which I moved her to bed. It took about 20-30 minutes for her to come around to the point where we can speak to each other. It was however the 1st time in a seizure that she felt nauseous afterwards and actually threw up everything in her stomach.

It was the 1st time she had a seizure in front of my family so naturally she felt extremely self-conscious even though my parents were (bewildered, yet) extremely understanding/loving/accepting.

She struggled a bit with her speech afterwards and would start sentences and then...um...um...you know...continue with sentence...and um... struggle...um.. to complete them.

I'm exaggerating slightly now as it was not nearly as bad/obvious as that, but I did notice it throughout the following 8x hours when it suddenly happened again on our bed.

It was the 1st time that I saw her turn blue and I realized that she had bitten her tongue by the pink liquid that came out of her mouth.... when she stiffened up I felt totally and utterly helpless to see her tense up, so much so that 1st her left arm was pulled out of the socket in her shoulder and 2ndly there came a series of seizures, increasing in intensity where she arched her back to such a degree that the 3rd time I heard a loud "snap" sound deep from within her upper back!!

Tears started rolling down my face as I was helpless, not knowing what to do and realizing that for a 2nd time that day I would have to tell her "you just had a seizure" and have her look me in the my eyes with disbelief and tears welling up asking: "are you sure?"

It breaks my heart and I eventually found this website one morning at 3am when I couldn't sleep in an attempt to figure out how to deal with this and be strong for her sake.

I do my best to document everything that happens to her and we also decided that it's best that she doesn't drive in the foreseeable future until such time as her neurologist actually says it's okay and give us written proof that it's okay.

It is however an enormous thing for her and I can't imagine what it would be like if someone told me now: "Sorry - no more driving for you".

I love my wife from the bottom of my whole heart! And I know she tries not to show how much it pains her to have to put this burden on to me or anyone else - There are just times when this pill becomes a little hard to swallow...purely because I feel so helpless at the time!!

(Thank you for reading this if you got this far... I had to put it into words i guess!!)

 

[Crash]

Hi Atmosphere,
It must be so hard for you to have to stand by and watch,but you are doing the best you can just by beeing there for your wife.Remember there are diffirent types of medication,diffirent combinations of medications to.Sometimes it takes a while for the right medication to be found.But belive me mate,there is a light not always bright but its there belive me,it may take a while but what your wife needs at the moment is you.

 

[qtowngirl]

Welcome Atmosphere, and (((BIG HUGS))).
You got the tears flowing on my end that's for sure - I have had two relationships where my partner has to just sit and watch - and they've both cried a lot as well. I cannot imagine what it's like to be on the other side, but you explain it all pretty well.
I can only tell you what it's like on this side - the bad feelings after, the speech, the devastating words of 'You're off the road.'
You did the right thing though by taking her off the chair, with a T-C it would take nothing for her to fall off and bang her head on something, which would be extra worse if her tongue was in between her teeth. Sounds like though you're scared you have a pretty good handle on what to do.
My boyfriend has said many identical words that you have - especially about feeling helpless. Lately he tears up whenever I have a simple partial b/c there's such a terror of not knowing at any second if it will turn T-C on me.
Neil's right... right now you are the key and exactly what she needs... unconditional love and support and ya know what - cry all you want/need. Take it from a woman who's right in it - we need a strong man but at the same time it makes all the difference in the world to know you're on the same page as us - worried and scared and ready to face it together.
Best of luck my dear, sounds like you've got what it takes, and for that she's very lucky.

 

[LJ-Bain]

You are a strong man! She is so lucky to have a loving partner like you.
I hope that they will be able to get her on some medication soon and that the neurologist is understanding and acts quickly.
How scary for her to have Brittle Bone Disease as well. You must feel like you can never leave her side.
I know how helpless you must feel. All you can do is just be right there for her and you are! Stay strong! Feel free to vent here!

 

[Nakamova]

Hi Atmosphere, welcome to CWE!

Epilepsy is so full of unknowns, both for the person experiencing it and for the friend/family member/caregiver watching and wanting to help. In some ways it may be easier for the patient (in the case of a tonic-clonic), because being unconscious prevents there from being any pain during the event or any memory of it afterwards. The rest of it is terrible, but at least there's that saving grace.

Don't be too hard on the neurologist about not pinpointing a trigger. Most of us never know what the primary trigger was for our seizures, and can only guess at what the secondary trigger(s) might be. Making it even harder is that seizures can change over time, as can the triggers. Keeping a seizure journal can be a great help, but there's no guarantee that it will yield specific info about a trigger, especially if the seizures are relatively rare.

You're doing quite a bit by being by her side, and taking note of what is happening. Together the two of you should be squeaky wheels about getting in to see the neurologist sooner rather than later. Clearly either the dose of her current med or the med itself needs to change. 200mg is a relatively low dose for Lamictal, so it's possible that a higher dose might help with seizure control.

Best,
Nakamova

 

[Atmosphere]

Thank you all...

I must say I have considered the idea of going to buy a baseball bat before the next neurologist appointment... But I guess she might see me coming!!

I also guess it's hard to balance the care you give, attempting to understand vs becoming obsessed about whats happening.

It's in my wife's nature not to bother people with stuff and she always try to deal with it on her own. I'm glad however that we got to a point where we agreed that she'd tell me immediately next time she feels an aura or if she thinks she feels an aura.

Recently she's been plagued by a lot of pain and infection from her Tonsils, combined with tooth ache coming from her bottom wisdom teeth. This then may lead to head aches... or head aches could happen for no reason.

There are also times where she feels as if she has balance issues combined with her hearing sounding like she put a big sea shell over her ears.

I'm not sure if these are signs or even simple partial seizures/auras of what is to come... but being very analytical myself, i'm attempting furiously to connect all the dots!

I would like to know however how common Myoclonus (twitching) are with epilepsy... On the web you read of a lot of people who get it... but at what point do I need to get worried about it?

She would only ever get it directly after she closes her eyes and goes to sleep. I usually hold both her hands while she's sleeping, and can sometimes lie awake for quite some time trying to see a pattern...8 out of 10 times it's in her arms, where the other times it would be in her legs or her whole upper body moves.

It doesn't last long - and i'm probably just "twitchy" myself due to her recent seizures...

We have a bumped up neuro appointment organized by my family doctor on 4 April. I also have an appointment with a different neurologist on 17 June for a 2nd opinion.

She's been to the neurologist twice, however I have not. The neurologist have not ever spoken to someone who's witnessed her seizures.... and I've witnessed 3 myself as well as attempted to write down everything I can remember the day it happened to try and keep it fresh in my mind.... but what else should I try to write down? I'm hoping to tell her neurologist as much information as possible - as well as how my wife is recovering and what is happening to her during the days directly after the TC. What sort of things should I be looking out for?

Thank you for helping...! It means a great deal!!

 

[qtowngirl]

Hi Atmosphere,
Just mentioning this as I dealt with it with two neuros (one was a consult - walked out half way through and never went back); some neuros want hard facts that it was indeed a tonic clonic (both suggested possible fainting in regards to one T-C where I was alone without witness). So, if your first or second neuro wants hard facts one thing they can't really argue with is the moan during the tonic stage (stiffening of arms and/or legs). Did your wife let out a moan or some sort of scream? Though you may know it was a tonic clonic some want proof and it's pretty tough to argue with that.

Other things of note (tho I'm sure you did it all from the sounds of your diligence) is timing it. Was it more than five minutes (if so call an ambulance). How long was it between end of seizure and her eyes opening? Did she have a noteworthy headache such as a migraine after the seizure or after sleeping?
Also auras (Simple Partial seizures); sometimes they can be quite mild and have symptoms that one may not think of as 'really odd,' such as your stomach being off, face hot/flushing, inability to find the right word for even just a few seconds. The symptoms for simple partials are quite vast, and you are conscious during and do remember them, even when followed by a T-C. Once she's come around, or even the next day, see if she can remember anything out of the ordinary from before the T-C, even if it's minute.