(Sort of) just diagnosed

MattD

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My story starts last April when, after a night of drinking and not much sleep, I had a seizure in the middle of the street without warning. An EEG showed up enough unusual activity that I was deemed likely to have a repeat at some stage, but since it was precipitated by some stupid behaviour on my part (I'm not usually a party animal!) the decision was made not to medicate me until (if) it happened again...

I'd almost forgot about it (barring a little voice in my head that was starting to get excited about approaching my one-year anniversary!) until Sunday, when I sat down on the sofa feeling fine, and woke up an hour later in A&E, with two seizures in between. I've now been given a short course of Epilim, and a further appointment with the Neurologist that saw me last year.

Reading a lot of other experiences, I feel pretty lucky - I'm not having regular seizures (and I'm hopeful the Epilim will bring even them under control), I never got around to learning to drive, and I have a very understanding workplace. So overall things could be worse - I'm just getting used to the idea of having this condition indefinitely...

So hi, great to get to know you all!

M
 

N Sperlo

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Hey Matt.

Welcome. You hear a lot of people here that can make any situation feel like a walk in the park. I had some issues when I found out I had epilepsy and then when I stopped taking meds (which I went back to taking), but I can live life perfectly normal. I only worry about the effects of the medication and if I have a simple partial. Usually life is just as normal for me as it is anyone else.
If you have any questions, ask. People here are open to ANY types of questions here and it helps.

Nice to meet you.
 

Nakamova

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Hi MattD, welcome to CWE!

No fun having a relapse before the one-year mark, but sounds like you're taking it in stride. I hope you weren't too dinged up by the seizure. If you were, I hope you're on the mend and starting to feel better.

Even with the long gap between seizures, it's very important to get them under control. I thought I might be one of those "once-in-a-blue-moon" seizure sufferers, but after tapering off meds (under doctor's supervision), my seizures started to become more frequent. You don't want that to happen -- the fewer seizures you have the better.

Best,
Nakamova
 

MattD

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Thanks for the welcomes :)

"Dinged up" is a pretty good way of describing this week, actually. Monday is a bit of a blur overall, and the last two days have only been a bit better. Fortunately work allowed me to do half-days yesterday and today while I get my energy back, and I think tomorrow I might be up for a full day. I just feel very tired and forgetful. Looking forward to getting back to my old self...
 

Belinda5000

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Matt,
I hope the best for you and that you are able to find a med that controls you with know more seizures.Drinking and taking AEDs is strictly a nono ,and if you know that now that's great.

I've never driven because of my epilepsy but it's great if others can with control.
 

MattD

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I'm not a heavy drinker but I do like a glass of wine on a Friday night... I guess being teetotal is something I'll have to get used to. At least I never learnt to drive, so I don't have a license to surrender :)

I just wish my muscles would stop aching. Most of them are fine now but 72hrs down the line and the backs of my knees are still killing me.
 
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MAB

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Hi Matt. Hope you're feeling better soon.

Not sure if it would help you or not but my neuro prescribed some muscle relaxers to help with the spasams I have in my legs and it has really helped me. Maybe you could ask your doctor if that would help you.
 

qtowngirl

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welcome matt :)
best e forum around, good to have ya. sorry to hear about all this, it's a reality shock to say the least. however there is thousands of people on here who have been there and completely understand what you're going through. ask or vent about anything.
our similarity is my first grand mal as well, early on a monday morn after partying WAY too much friday night, and in emerg that's what they chalked it up to. a few months later, bang, woke up on the floor and diagnosed weeks later. truly hard to accept, but over time it does grow on you. according to the neurologist it was a 'coincidence' about the first one, 'i don't have e but just partied too hard?' was thrown out the window.

so when you say 'just diagnosed' do you mean that medically they're saying 'likely but we'll do further tests to be sure' kind of thing?
 

MattD

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so when you say 'just diagnosed' do you mean that medically they're saying 'likely but we'll do further tests to be sure' kind of thing?
Not quite.

After my episode last year, I had an EEG and an MRI and was diagnosed with a "high likelyhood of a repeat occurrence" and that was that. This year I've not been formally diagnosed with anything, although since I've been put on Epilim and sent back to see the Neurologist (and since this time it came out of nowhere!), I'm not sure there's much anyone can say that would come as a surprise.
 

qtowngirl

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well that's bloody unfortunate :ponder:
some of these pros have to be guided in the right direction, or left for someone better, depends for all of us how big of a city we live in etc. can really suck!
'high likelihood of a repeat occurrence' ey? imo 'high likelihood of epilepsy diagnosis, will do further testing' is more appropriate.
got enough energy right now to start demanding answers matt? problem is that we don't 'in stone' have epilepsy until they confirm it, and do NOT deserve to be floating out in the wind. best of luck getting on with it, diagnosis or not, whatever the reality is.

:hugs:
 

MattD

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well that's bloody unfortunate :ponder:
some of these pros have to be guided in the right direction, or left for someone better, depends for all of us how big of a city we live in etc. can really suck!
'high likelihood of a repeat occurrence' ey? imo 'high likelihood of epilepsy diagnosis, will do further testing' is more appropriate.
got enough energy right now to start demanding answers matt? problem is that we don't 'in stone' have epilepsy until they confirm it, and do NOT deserve to be floating out in the wind. best of luck getting on with it, diagnosis or not, whatever the reality is.

:hugs:
To be honest, aside from his aversion to a firm diagnosis, the Neuro I saw last year seemed like a decent guy, and I'm pretty sure I'll get some more clarity from him this time. He was just reluctant to do anything following my EEG and MRI until I had another siezure - well, I'm there now. Taking my partner along for extra support this time too - if nothing else, she probably needs a better understanding of all this, just in case...
 

pccoder

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I think that's fair Matt. I've always been told that having a seizure does not make you an Epileptic. It's when you're having more than one and they don't know why (I.e. a bad reaction to drugs, as some drugs will actually cause a "normal" person to seize) that you can officially be considered to have Epilepsy. Even then, a lot of neurologists won't say that you have Epilepsy without a positive result on an EEG. This is a crappy disease.
 

sunflower

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Hi Matt.
I'm not exactly a veteran on the forum, but I can still welcome you! :)
I know what's it's like to just kind of be bounced around. I have moved several times and have, obviously, needed a new neurologist each time. It feels like, "Oh, you have seizures, huh? I see that your other doctor had you on (current medicine at that time). Let's just keep you there." Then I would have a couple seizures and call the doctor and they would just increase the dosage or add a different medicine without really looking into it. I hate the feeling of trial-and-error.
I just recently got a new neurologist because a practice finally opened up in our town. I've noticed that many people comment on their doctors' physical attributes. Mine is my age! I'm 32 and when this girl walked in and we started discussing my condition I felt like I was talking to a peer. However, she is the first one to get me started on the process of entering an epilepsy monitoring unit. She studied under one of the epileptologists in Phoenix and was able to 'get me in.' I had been waiting for over two months to hear from the insurance company about coverage and they finally contacted my doctor who called yesterday to let me know that authorization has been given. I don't know what the coverage will be, but it was really a relief to know that I will be checking in to St. Joseph's hospital in Phoenix on Feb 4th.
Like the other members have said, this is a great place to vent and/or tell your story. I have been reading about others who have been through an EMU. It sounds like a relatively boring process, but along with some intense fears about stimulated seizures and being recorded 24/7, I'm also looking forward to it to see if these specialists have any new ideas. I hope your neurologist can figure out some answers for you before you have to go through something like this.
Looking forward to hearing about your experiences. I wish you the best!
 
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MattD

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Thanks for the welcomes everyone :) I've got an appointment booked in now in a fortnight, so until then just sitting tight and letting the Epilim settle in, plus trying to get all the questions I have in some sort of order!
 

qtowngirl

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Thanks for the welcomes everyone :) I've got an appointment booked in now in a fortnight, so until then just sitting tight and letting the Epilim settle in, plus trying to get all the questions I have in some sort of order!
you're welcome ;) and that's great about the appt! i must ask tho, what is a fortnight? a week or?
 

Nakamova

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fortnight = short for fourteen nights, i.e. two weeks.
 

MattD

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Well, I've had the appointment now, which gave me a chance to straighten a few things out. Not least of all, it turns out I was put on a very low dose of Epilim. The Neuro gave me the choice of sticking with it and 'waiting and seeing' or ramping up to a higher dosage. Since we've established now that I'm prone to tonic-clonics with no clear triggers and no warning signs, I opted for the latter :) I'm feeling much more reassured now and the anxiety I've been suffering ever since seizure #1 seems to be nearly gone.

Being a rather quick appointment there's still a lot I really don't fully understand, but I'm getting a follow up soon with a specialist nurse, which is good. In the meantime, the Neuro agreed that my cutting back on coffee (from 8 cups a day to 1) was sensible and that my cutting back on booze (from a bottle of wine every weekend to teetotal) was probably overkill. Both good news and I had my first glass of beer in a month last weekend - felt good :)

Been great to read all the stories on this forum while I'm getting to grips with everything - what a great community it is here!
 
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