Hey all....need some support :(

Lix

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Hi!
My name is Alex, I'm 36, a mama of 3 lovely children aged 2, 11 and 17. I'm a college lecturer with a great life- well, it was till in Nov 12, I mentioned some odd symptoms I'd been having since my daughter was born (2 years)- I was seeing the doc about gynecological issues. On the spot he diagnosed Epilepsy :'(
My odd symptoms? Here goes- a wave of dread with a bizarre dream-like de ja vu....that's so intense it knocks me sick, shaky, sweaty and pale. Lasting bout 30 secs. Sometimes a smell and muffled sound.
Since my diagnosis I've noticed other things that I just put down to tiredness. The feeling that things are moving arounds me- like shifting, if I'm in a car stationary, it can feel like its moving. Flickering in my eye- in the peripheral vision. Depression has always been about along with anxiety and irritability. I've also thought about events in my life- ok, when I drink alcohol, there's 2 'me's- one a lovable drunk, the other, apparently I glaze over, talk rubbish and if anyone tries to touch me, I get violent. :( just made me wonder.
I had an MRI about 4 weeks after being diagnosed- this showed up an Arachnoid cyst on my brain stem and I was told it was a incidental fund and def not a factor in my 'seizures'. This through me- think this is why I went into denial.
My MRI showed no issues with my temporal lobe and after a more extensive 'cyst' MRI, I've been told that is of no concern.
Since my diagnosis, I'd had 1 mild aura until yesterday.
In the last 24 hours I've had 2 definite partial seizures (I think that's what they were? Maybe complex? Maybe just auras? I'm confused)
After each I'm so disconnected, emotional and lose time.
I need advice? Does any of this strike a chord with anyone? I feel pretty lost right now. I going to start the Lactimel I was prescribed in Dec as this is obviously real (think I thought it would go away) I'm going to sell my car- this breaks me....time to take it seriously.
Alex
 

Katiered

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Hey Alex, I'm sorry that this has happened to make you seek us out, but I'm glad you found us. Everyone here was a huge support during my diagnosis, and I can tell you it was beyond needed to have this group of people in my corner. So post away! Vent, cry, and ask questions anytime you need! I think everyone had a hard time dealing with it in some way.

For me I was depressed, and confused, and scared (because I had no idea what this meant for my future). Coming on here, reading other people's situations made me see what I'm going through isn't anything to hide or be embarrassed about (I feel so much more comfortable talking to the people in my real life because of the honesty and kindness of everyone here), but they've also but everything into perspective too! You don't necessarily need to sell your car! I have the same type of seizures as you (from the sounds of it - I have simple partial temporal lobe epilepsy, not convinced its not complex sometimes), and while either of ours may change at some point down the line, I started my medication right away and I'm working on getting seizure free. When I am for six months I can have my licence back. I'm sure that will be a huge drive for you to work towards getting your seizures managed, especially considering you have three kids to take around to everything!

I think it's good you're accepting what's happening so you can accept treatment. They certainly won't stop on their own!

I'm taking lamictal too, just stopping one med and starting the other so we can work our way up together! Post any questions, like I said everyone is incredible and kind! And with people all over it seems there's normally someone around to vent to :). But feel free to message me too if you want! Take care of yourself and just know its going to get better now that you know what's going on, and you've accepted it!
 
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Lix

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Thank you so much Katie!! I have tears in my eyes reading your response.... I'm all over but I guess 2 seizures in 24 hours can do that :(
In the UK, you need to be seizure free for 12 months and that honestly freaks me out the most- as you say I have 3 kids and a busy full time role in a college- teaching special needs adults....my car is like a lifeline :'( Although- I have been complaining I'm too busy- my family including partner are demanding and full on.......perhaps it's time I did step back? Let others take the lead a bit....let my partner do school runs etc as I no longer can logistically without a car.....
 

Katiered

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Yeah.. The side effects suck. They wipe you out and they're all different. But, they do get better, and hopefully with the right one the few left are worth it compared to the seizures.

I'm so sorry you're having such a rough go of it right now. I do really understand how frustrating it can be.. I had to take a step back from school and work for a bit myself. The side effects were just too much for me to try and juggle and make my brain work! I'm sure if you're honest with your partner you can find a way to slow your life enough to keep yourself healthy. Your mental health through this is as important as making sure you're eating well, taking your meds and getting enough rest because stress can bring on seizures too. For me emotional stress is as big of a trigger as lack of sleep. And my seizures tend to cluster too, so don't stress too much about having multiple back to back. But maybe start writing down when you're having them and anything else that could contribute to why (sleep, meds, alcohol, period, eating, emotional extremes etc.) so you can see for yourself if there's any pattern! Maybe gaining a bit of control, and predictability over it will help considering it sounds like you're the type of person who normally has things under control and managed! It has to be really frustrating that everything has been flipped upside down so suddenly. I know for myself, losing the independence of my licence was more upsetting than I could have imagined.. And I'm only trying to manage a household of two!
 
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Lix

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I have already realised that emotional stress/conflict and worry triggers my episodes....although having only had 3 since my diagnosis means pinning it down within the context of 'emotional stress' has been hard.....2 of the 3 I was answering a heated debate on flipping Facebook! That app has now gone from my phone!
I'm beginning to realise slowly how many other little symptoms I've been having amongst actual recognised seizures and the implications they have had on my quality of life.....which has lead me to accept the Lamictal....I'm usually a homeopathy kinda woman ;) I'm almost accepting to take it against all my better judgements as this last 24 hours has made me see I have to.
I'm scared of feeling more exhausted than I already do....I have to function in some level.....and I'm scared of becoming more depressed- the effects if that on my family :(
Thank you Katie.....you have been a bit of a lifeline this afternoon X
 

Katiered

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Anytime Alex!

I've read good things about lamictal for depression so hopefully you'll notice some changes soon. It could also just depend on how your body reacts to medication as to how the side effects are for you. For me my energy is almost always affected, so hopefully it just won't be an issue for you! Especially considering how slowly we have to start this one!

You said you're scared of becoming more depressed, and while that's valid I think you should try to commit to yourself to try and focus on a day at a time for right now. Time will pass and you'll slowly feel better! Before you know it things will be better, hard to see right now though... Hope your day is going a bit better hun
 

Jilian

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Alex, I could have written your post. I'm a 34 year old mom of 3 and I was just diagnosed with epilepsy and started Keppra Wednesday. I'm afraid too. I'm an earthy mama and usually shy away from medicine. I'm so happy to have found this forum to see that I'm not alone. I'll keep you in my prayers and hope that we can both get this sorted out soon. It is such a scary time!
 

Sandie

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Alex, you did absolutely the right thing by joining this forum of wonderful people. At times we have all felt like you do right now and we still do sometimes. It is ok to be less than perfect. Epilepsy can be scary because it is so unpredictable. You have obviously been there for your family and now it is time for you to step back for a little while and let your family be there for you. Try not to stress over things you have no control over and just roll with it (I wish I could take my own advice), You will eventually come to terms with this and not be so scared. This forum is great because everyone here has some personal knowledge to offer and since I have become part of it I am not scared now -still frustrated some days though. Good luck and I wish you brighter days ahead.
 

Maisy

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Hey lix, im sorry about your heart wrenching journey, i would firstly, check the DVLA site around epilepsy, as there was alot of changes too rules back in march, regarding the types of seizures and how long people cannot drive etc, Deffo write down when your having them triggers, time, what it was like, my neuro had a heart attack when i said ididnt have my diary, also just hang in there and chin up, hope you get through ok -hugs-
 

Lix

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Ladies!!! Thank you!!! <3
My fella is struggling to be there for me....after and before seizures I'm very irratible and irrational and he just sees it as me being an ass :( it's causing a huge drift between us :'( having this thread has helped in the last 24 hours!! My eldest son, however is being my rock!! It's hard for everyone I know, but having been the strong one that holds the family together, I guess I'm hoping its time for my partner to take the lead.....
Xxx
 

Katiered

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Aw I'm glad this is helping, there are such wonderful people here! I would ave been such a mess without everyone so keep coming back, even just to read!

Have you encouraged your guy to read up on what's going on? Maybe if he has a better idea what's going on with your brain he'll have an easier time accepting that's its truly not personal when you're irritable (at least not right then ;) ). I, as the person actually having them, had no idea how much of what I was doing was associated with the seizure itself so it would make sense that he might not get it - but it's time to fix it before the divide gets bigger! It's incredible your son is being so wonderful, hopefully with some education your man will be too once he understands!

How was the rest of your weekend?
 

Fervie

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Hey Alex ,

I'm new in this forum and the only reason why I reached up to here is because I wanted to talk with people that could understand me . Epilepsy isn't something hard to live with if and only you be careful. Small things matters.
Until I read your post , I ddn't know how to explain what I'm going on . Same spot with you about seeing stuffs shifting once . Only in my case , its combined with heart palpitations , feeling confused and scared , and the top end I see things shift once then I throw up . This happens to me once a month before or after my monthly PMS . I've been to neurologist and everything is clear.
Let me know how things work out for you . Good luck and God bless!
 

Lix

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I've spent a wonderful day in Scarborough with my family, by the beach and seizure free :) still so confused about the driving situation though :(
I have my car outside and so much to do tomorrow!! Feels surreal that I shouldn't get in it and go about my business!! I don't even know where to begin with buses :(
My partner has come round a bit....after the initial diagnosis 4 months ago, I think we both just thought it would go away....2 strong partials in 24 hours seemed to knock us both- in different ways. He realises my actions and reactions during a 24 hour period of seizures (hate that word as I don't fit or lose consciousness!!) are mainly controlled by condition. I've felt much less irritable today! :)
You guys are all brilliant! Thank you xxx
 
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