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Hi

My ccm has given me epilepsy, so I had to surrender my driving license, does anyone know if I only have to be seizure free for 12 months, or because the cause is a ccm is it longer?

thanks

Jeanette3 :p
Hi Jeanette.
My husband is in the same boat as you, he had to surrender his driving licence in October due to his cavernoma giving him epilepsy. We have been advised that as long as he is seizure free for 12 months, then he can drive again. There has been no mention of the cavernoma affecting his licence at all.
Sarah
Hi Sarah

Thankyou for your reply, I surrended mine in October as well, how are your husbands seizures, not too bad I hope.  I've been seizure free since October, but then again I only get them every 9-10 months, so I'll probably just be due to get it back when I have another seizure.  What joy.

All the best
Jeanette3
Apart from the grand mal seizure my husband had in October, he hasn't had any since.
Saying that, my husbands Gp believes he has been suffering from abscence seizures for years without our knowlegde. So who knows, he may have been having seizures but we just don't know about it.

How do you feel when taking the Lamotrigine?
My husband is ok some days but others he struggles to stand without feeling dizzy, constantly feels 'out of it' and generally feels rubbish, although he is taking a large coctail of pills.

Take care.
Sarah x
Hi Sarah

Thanks for your reply and sorry to hear about your husband having a TC seizure.  What dosage is your husband on?  mine is only 75mg so I'm not too bad on the meds, felt funny for a few days every time I upped them though. My Cavernoma is in the left temporal lobe and is 9mm big, do you know much about your husband's.

I have been referred to see a Neurosurgeon in April to discuss options, which I'm pretty nervous about.

all the best and I hope your husband starts to feel better on his meds soon.

Jeanette3
Hi Jeanette,
My husband is on 150mg of lamotrigine,  I believe it is higher than the normal starting dose due to also being on amitriptyline for depression and thyroxine for hypothyroidism. Apparently amitripyline reduces the effects of the lamotrigine?

My husbands cavernoma is right frontal lobe and measures 6mm, we have been told by our gp they probably wouldn't operate, we wont know much more until our visit to the neuro, Dr Brierly in April.

My husband is being treated for epilepsy rather than the cavernoma at the moment, because despite myself and my husband being convinced we heard the neuro state a bleed, it hasn't been written down on anything to the GP's.

Sarah x
Hi Sarah,

I was told by my Epilepsy nurse that 150mg is the normal dose to work up to, but my Neurosurgeon seems to think 75mg will be enough to keep mine at bay as they are very mild and infrequent.  But only time will tell as I only get them every 10 months ish.  So it will take to just before getting my license back to fnd out if the dose is right (not so great).

How is your husband and how are you coping with it all.  I know my husband has found it hard watching the change in me.  But he has gone away with work now for 4 weeks so I am determined to use this time to try and get back on track.

all the best Jeanette3
My husband has taken it very hard. He rarely goes out now, and if he does go out, he makes sure he isn't alone. It was only yesterday that he admitted that he was scared to go out in case he had another episode like in October.

I find it hard to deal with too, it's the not being able to do anything to help. My husband tries to hide how he feels but I can see in his eyes when he is having a bad day and doesn't feel right. Not just mentally but also physically.

We are slowly getting back to some sort of normality, but I doubt it will ever be like it was prior to the collapse.

Sarah
Hi Sarah,

I do know how you both feel, my husband told my mother that he felt he had lost me down a big black hole.  Thats when I realised that it is only me that can get myself out of that hole.  My Cavernoma had caused anxiety over the last couple of years from the first simple partial to being diagnosed. Not enough to go to Doctors about but looking back we had realised that my personality had changed a bit at a time.

Since being Diagnosed and on Lamotrogine that is alot better.  What time of day is your husband taking his dose? I was taking mine all in the morning which made me fuzzy in the head and depressed.  So now I take small dose first thing in morning and 2nd dose around 5pm.  Now feel alot better.

Your husband will get his confidence back, I've started running again, on my own.  Also my husband has gone away for 4 weeks to Norway with work, I'm home alone with kids and I'm doing ok. The more he gets out the more confident he will get.

I blacked out Dec 08, whilst home alone with the kids.  So that is always at the back of my mind. The worst thing was that I felt horrible with heart palpitations and all sorts up to 2 hours before I blacked out. :angry:

Does your husband come on this forum it does help.  Also I have joined an Epilepsy Forum NSE which is fantastic for support and advice about Epilepsy, also even for a moan.  There are a few of us on it with Cavernomas.

take care, all you can do is support your husband but he's the only one that can really get his confidence back. I'm 40 this year and I could definately think of a better 40th present.

Take care
Jeanette3

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