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Boycie

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Hi, I'm Nick. I'm 34 and until yesterday I'd never been happier. My wife is 35 weeks pregnant, we're expecting a little boy and everything seemed perfect.

Yesterday I had an appointment at the neurology department at my local hospital. Within 10 minutes I'd lost my driving licence and been diagnosed with temporal lobe partial seizures. I'm totally confused and very scared now. I drive for work so that has pretty much meant the end to my current employment I'm guessing. I've tried talking to my employer but my boss lost his son last week and is understandably off work so I really don't know what's going on.

I've booked to get a second opinion privately for which I will pay. The care I received at the hospital was appalling. I was in and out in 10 minutes and wasn't given so much as a leaflet to explain the problem. Nothing was mentioned about treatment or a short/long term prognosis, I was just told to expect a letter shortly confirming an appointment for a brain scan but was also told that this would likely show up nothing.

This last week I've been getting headaches and I'm so worried it might be tumour related as I've read that these can be connected with TPL.

Despite having a very loving and caring wife and family I just feel so alone. I can't risk my wife getting too stressed as i don't want anything to impact the pregnancy so i try to put on a brave face when we're together. The moment I'm alone I just break into tears.

I guess I'm just hoping I can gain some more information and a better understanding of the impact that this will have on my life.
 
Hi Nick, welcome to CWE! I'm sorry for the circumstances that brought you here. Congratulations on the upcoming birth of your son! Along with many other members here, I also have TLE. What tests were used in the diagnoses of your Epilepsy? Did you have an EEG done at the hospital?
The headaches could be due to the seizure activity (postictal stage) that you are experiencing. Many of us experience headaches when we have seizures....Advil is my friend lol
I know it is scary, I just wanted to let you know there are a lot of good people here with tons of info! I thank my lucky stars I found this place when I was first diagnosed. :)
 
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First congratulations to you and your wife and hopefully not to many sleepless nights. I see what you mean in part about how you were treated, was it a neurologist that seen you yesterday, the brain scan they could be talking about is called an E.E.G. and yes it will probably show up nothing although some have, but all this should have been explained more clearly to you. It's not surprising you feel confused and very scared, but Nick think for a second, you are scared of the unknown in other words you have been told something and you are not happy with it, not surprising. In truth when you think about it you are looking for the worst to be wrong, why, there is no reason to look for the worst. So try not to worry so much until you get the second opinion.

If you are told again that you have epilepsy, so what its not the end of the world, it will be if that is what you want. Your life does not end when you find out you have epilepsy, that is when your life starts with a few differences. It's never easy being told you have epilepsy, you have got to realise and accept you have epilepsy not just say it and there is nothing easy about it but then who said life was easy. So sit back for a minuet and think do you really want things to be bad or are you just going to put your life back on track.
 
Hey, thanks for your reply. I'll admit to being a bit nervous about posting as there's almost an admittance of the problem and reading other people's stories makes it all so real.

Tests? Well I had my knees and arms tapped with the small hammer. Then she checked my peripheral vision. I have a ridiculously low heart rate, which seems to have been ignored, although I've always been told that's down to being a very active person. My gp did a heart scan (ECG?) before referring me to the neurology people, and this was fine. That, in all honesty, is the extent of their investigations.

What is confusing things for me is that I've suffered the same symptoms when I was about 16 following a traumatic event in my family. It's hard to explain but I developed this almost fear of black bin (refuse) bags and when I saw one i would experience deja vu. During counselling, this was explored and i was told it was a stress thing, as i had seen a bin bag immediately before the event. Seeing them again caused me to relive the event. Yes, I'm very messed up!

As the symptoms I have now are very similar I'm wondering if I'm subconsciously worried about the pregnancy and i am also under a lot of pressure at work.

Although, I guess I'm just clutching at straws and hoping this will all go away!
 
Ok, let me throw this out there....I think they diagnosed you WAAAY too prematurely. How can you be told you have Temporal Lobe Epilepsy without anything saying 1) you have Epilepsy and 2) what region of the brain it is located in.
I know I'm fairly new to all of this so I imagine you must be really overwhelmed.
 
I think overwhelmed is the perfect word for it. I was just stunned at how quickly she gave a diagnosis and how I was left with absolutely no advice or explanation.

The conversation went pretty much like this:

Her: I can see that this has come as a shock to you
Me: yes, very much so. So what happens now?
Her: well as this is life changing for you, you'll probably want to go home and think about it and speak to you employer.
Me: but I don't understand
Her: (silence)
Me: so do I leave now?
Her: yes

And I swear im not making that up! I walked out of the hospital in total shock. She may as well have just given me a Good Luck card.

My biggest worries are if I'll lose my driving licence permanently or not. I think I read somewhere about having to go a certain number of years without a seizure before I can apply to have it back. This obviously impacts my job, and as good as I'm sure my employer will be, I don't see how I can continue in this job. With a child on the way I'm now worried about how I'll be able to afford it.

My other worry is that this is genetic and I'll pass it on to my son. It almost seems cruel and i don't want him to resent me.

I know I'm probably looking at all the worse case scenarios right now but I think I'm still in shock. I'm sure in time once things become clearer that I'll see that this doesn't have to mean the end of anything. I've suffered from depression and stress in the past, all relating to one event and I've spent thousands on counselling and feel so much more in control of myself and my life... then this comes out of nowhere and knocks me for six.

I feel better just for having verbalised how I feel on here, and to hear somebody say that it's only the end if you allow it to be is certainly what I needed to hear!
 
Well I agree with BrandiBrat, considering what you have just told us they were a bit premature in saying you had epilepsy. Yes the stress from anything can do it, the thing is you need that second opinion. The fact you have a low heart rate the first thing that comes to mind for me is, you must exercise a lot and if so you might want to cut down a bit. There could be a lot of different things causing this for you also like you said it could be subconsciously being worried about your wife and the pregnancy.

Posting does not mean you admit to anything and you are welcome to post and everybody here will try and help. But like I said when you are told you have epilepsy you have got to admit it to yourself first and accept it.
 
Definitely speak to your GP and see if the neuro wrote a more detailed and technical letter to them explaining things better. Sometimes the specialist's job is just to be clever and diagnose stuff and they leave the bedside manner and follow up to the GP. Stupid way of doing it but some consultants truly are hopeless communicators.

If your GP has no answers either ask for a referral to a new neuro. A diagnosis of epilepsy can be life changing so shouldn't be rushed into and you don't want to give up driving licences, tell employers, take precautions in every day life that are unnecessary.

Hope you find a doc who cares more about you than a just a technical diagnosis!
 
I'm hoping other's pop in here soon...
So, were there other symptoms that got you to the doc or the neurology dept? I mean besides the headaches and the event with the trash bags? What were the seizures like? I apologize for all the questions and I don't mean to seem nosey...I'm really not an overly inquisitive person like this. I'm just really dumbfounded as to how she jumped at a diagnoses so quickly without any testing.
In the State of California a person has to go 6 months seizure-free and then s/he can have their license reinstated. I understand how you are upset...your livelihood is at stake, as is the support of your family. I'm not sure what it is in other countries. Perhaps one of the others can offer some knowledge soon. Or, google what it is near you. I doubt it is years, though! :)
Fedup is right, it's not the end...you are strong and you will get through this. It sounds like you've gotten through a lot more in your life, right?? You can do it :)
 
I play football (soccer) twice a week and I train and do olympic lifting about 3 times a week. They are two huge things in my life, although I do neither to any great level of ability! Can doing too much exercise bring on the symptoms/make them worse? I can't imagine my life without keeping fit. In fact the first thing I decided to do, if forced to be off work for any period of time, was to throw myself 100% into training. I figured my brain might not be functioning as I'd like it but I'll ensure the rest of my body is in tip top condition. I found exercise hugely helpful in dealing with depression and stress so cutting back would be a massive worry for me.

I've taken myself off fishing for a couple of days, with my wife's blessing, to have some time to think and get my head around everything. I need to formulate a plan. So far I've pretty much just laid here crying with the dog looking at me strangely! I'm glad he loves me unconditionally as i feel like I'm letting people down if I show I'm upset.
 
I've not actually described what led me to being referred to neurology have i, that was silly of me! Ok, so it goes like this.

One Sunday evening, about 6 weeks ago, my wife & I were walking the dog. We got back to the house when I felt a strong deja vu. We kept talking and i said I needed to stop a sec as i was feeling feint. I must have fainted as i heard the dogs lead hit the floor and i was sat down. My wife says my legs just went jelly like. I didn't experience any feelings of fear or dread and there were no strange smells. I didn't wet myself or fit (in the classic sense). I felt fine after, just confused about how I'd ended up sat on the floor.

The following day, I was driving to my mums to collect the baby's buggy which had been delivered to hers. I had the deja vu again but didn't feel feint at all. I then realised that I couldn't remember where she lived despite having driven the route many times before. Seeing her street sign kind of kicked me back into normal mode and i was fine after. That week and the one after, I experienced very mild deja vu whilst out walking, 3 times in total. One occasion it came on when I saw the rubbish/refuse collection lorry. Those instances were very mild, with no fainting or feeling feint and i was completely aware of what was happening.

I've had no repeat for nearly 3 weeks now and apart from the headaches and an upset stomach I've felt fine.

From what I'm reading online, there's some classic symptoms there so I can see how that diagnosis was come to but some others are missing, although it's obviously not the same in every case.

I've got a private appointment with a neurology expert in a week's time so until then I just think I need to educate myself on this. I want to go there armed with information to ensure I ask the right questions.

I will cope this, there is no other option, and I'm well aware that in the scheme of things it could be much much worse. But right now I badly need information. I've learnt more on here this evening than I could have hoped for. I'm so grateful for everybody's input. There must be new members posting their stories on a fairly regularly basis yet you still manage to be genuinely interested and I'm so grateful for that. Hopefully in time, I'll be one of those offering advice.
 
Boycie

The reason I said about the exercise is it can result in a low heart rate and this can cause other problems and it is usually the likes of soccer players/rugby players ect who do this intense training. The problem is not the exercise but the type and amount you do, you can do the same exercise in a different way or so I have been told. So when I say cutting back I am not talking about giving up exercise only changing the way you do it. You could always through yourself into painting the house 100%, bet the wife would like that and think of the exercise you would get.
 
BrandiBrat

Ya that is true so she probable has something else lines up for him.
 
And now I have to delete this page from my history, I can't have her getting ideas!

I've been very busy around the house the last few weeks and I've done enough painting to last a lifetime! I did suggest sanding and repainting some shutters, but i'm sure if look hard enough I can find somewhere that says rigorous diy should be avoided, like driving! There must be some pro's after all.

I'm going to play it by ear on the exercise side of things. I've had a low heart rate for a good many years now, it always comes up in health assessments at work but it's not been a cause for concern prior to this. I probably just need to learn how to manage it better in light of what I now know.
 
Boycie

Now you are getting the idea and I agree about the DIY.
 
Gday nick .

i am not really up all of the differant types of siezures however besides headaches did you have a siezure that you became absent ( unconsiouse , not spelt right ! ) ? i would get another opinion , as far as i am aware the driving laws regarding E are nearly the same in most countrys , i had a eeg ( wires stuck to head ) mri or xray ( can't remember what it`s called ) ect before i physicaly lost my licence , however i did stop driving by myself when all that was going on , could you ask a work mate to give you a lift to work ? ,
wish you all the best mate .
 
HI,

I'm happy to hear the news of your baby that is on it's way.



You have come to the right place.

I joined this forum about 2 years ago and found more helpful information.

I understand what you mean when you spoke of feeling all alone, Epilepsy can do that when you 1st. find you have it. Just know you are not alone.

I'm glad your are going for a second opinion, I don't see how this Dr. could have given this diag.

Keep us posted.
 
Just a quick update
I've got an appointment with a private neurologist next Wednesday and an appointment for a brain MRI on 2nd June (via the NHS)
I've spoken to work who are prepared to move me in into the office in a temporary role until things are clearer & I've got a diagnosis. I've also spoken to the DVLA who were completely useless.

I've accepted that it'll be at least 6 months until I drive again, and possibly up to 12. There's no point worrying about things I can't change and I should be grateful that things aren't worse. I feel quite guilty complaining about this when my boss is off work having lost his son to cancer.

The messages of support from complete strangers on here have been amazing. To be able to talk about feelings and fears with people who understand is a massive help. Thank you all so much!
 
There's no point worrying about things I can't change and I should be grateful that things aren't worse. I feel quite guilty complaining about this when my boss is off work having lost his son to cancer.
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I think you are taking all the right steps, with the right attitude. Don't feel guilty about complaining -- big stresses and small stresses alike can take a toll, and venting can definitely help. Comparing one person's troubles to another's can give some perspective, but ultimately it doesn't change the fact that epilepsy is a raw deal. Keep us posted as to how things are going. I hope you are feeling okay.
 
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