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Epilepsy

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By *ickey55 OP   Man
18 hours ago

Coalville

How do people cope ? I got diagnosed a year ago and I am on very very strong meds. My Mother in law died yesterday and I had a seizure as I classes her as my mum as my birth mum was useless

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By *alking HeadMan
16 hours ago

Bolton


"How do people cope ? I got diagnosed a year ago and I am on very very strong meds. My Mother in law died yesterday and I had a seizure as I classes her as my mum as my birth mum was useless "

I've had it for just over thirty years. Brought under control in about 18months but the seizures were far apart, apart from when I went statust epilipticus a couple of times which is very serious. What meds are you on. I'm on sodium valproate but a very high dose. Every year the doc asks if I'm interested in reducing my dose, but to do that you have to hand in your driving licence until you are 12 months clear. I can't afford to do that. Just remember all your prescription items are now free, not just epilepsy meds. That took a few years to find out!

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By *etra30Man
14 hours ago

RAYLEIGH

I had my first seizure in Jan 24. Came out of the blue. Was hospitalised for 2 days. Advised DVLA and had to surrender my licence. After 4 months saw a consultant. 2 months later I got my licence back. Within 3 days I had a seizure so back to square one driving licence surrendered again and put on low dosage medication. Seizure free since July 2024. Seen consultant twice and she is happy for me to drive. Have notified DVLA and they have advised they will write to consultant for confirmation so hopefully in July I shall get my licence back. So frustrating not being able to drive. Makes meeting difficult.

Problem with epilepsy medication is it seems to affect erection adversely and I believe you can not take viagra or other aids to overcome ED.

Best of luck.

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By *arsfanMan
14 hours ago

ROSYTH

Always take your meds you can still have a seizure but with meds it can be controlled

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By *3versMan
14 hours ago

glasgow


"I had my first seizure in Jan 24. Came out of the blue. Was hospitalised for 2 days. Advised DVLA and had to surrender my licence. After 4 months saw a consultant. 2 months later I got my licence back. Within 3 days I had a seizure so back to square one driving licence surrendered again and put on low dosage medication. Seizure free since July 2024. Seen consultant twice and she is happy for me to drive. Have notified DVLA and they have advised they will write to consultant for confirmation so hopefully in July I shall get my licence back. So frustrating not being able to drive. Makes meeting difficult.

Problem with epilepsy medication is it seems to affect erection adversely and I believe you can not take viagra or other aids to overcome ED.

Best of luck."

Go back to your doctor to talk about ED medication, it is possible to take them depending on what AED you're on

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By *awihMan
14 hours ago

Aldershot


"How do people cope ? I got diagnosed a year ago and I am on very very strong meds. My Mother in law died yesterday and I had a seizure as I classes her as my mum as my birth mum was useless

I've had it for just over thirty years. Brought under control in about 18months but the seizures were far apart, apart from when I went statust epilipticus a couple of times which is very serious. What meds are you on. I'm on sodium valproate but a very high dose. Every year the doc asks if I'm interested in reducing my dose, but to do that you have to hand in your driving licence until you are 12 months clear. I can't afford to do that. Just remember all your prescription items are now free, not just epilepsy meds. That took a few years to find out!"

If you are under 60 then your GP should have advised you that you qualified for a “Medical Exemption Certificate”. That is what happened with me when I was diagnosed with T2 Diabetes. The certificate is valid for 5 years (if I remember correctly) then you have to apply to renew the certificate. When you hit 60 you get your prescriptions free anyway. If I remember correctly there are only 6 or 8 conditions that you can get the exemption certificate for.

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By *alking HeadMan
13 hours ago

Bolton


"How do people cope ? I got diagnosed a year ago and I am on very very strong meds. My Mother in law died yesterday and I had a seizure as I classes her as my mum as my birth mum was useless

I've had it for just over thirty years. Brought under control in about 18months but the seizures were far apart, apart from when I went statust epilipticus a couple of times which is very serious. What meds are you on. I'm on sodium valproate but a very high dose. Every year the doc asks if I'm interested in reducing my dose, but to do that you have to hand in your driving licence until you are 12 months clear. I can't afford to do that. Just remember all your prescription items are now free, not just epilepsy meds. That took a few years to find out!

If you are under 60 then your GP should have advised you that you qualified for a “Medical Exemption Certificate”. That is what happened with me when I was diagnosed with T2 Diabetes. The certificate is valid for 5 years (if I remember correctly) then you have to apply to renew the certificate. When you hit 60 you get your prescriptions free anyway. If I remember correctly there are only 6 or 8 conditions that you can get the exemption certificate for."
But I had been paying for all my other meds for ten years before a chemist told me I don't need to. That was completely by accident as I was getting my epi meds along with something else at the same time.

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By *alking HeadMan
13 hours ago

Bolton


"I had my first seizure in Jan 24. Came out of the blue. Was hospitalised for 2 days. Advised DVLA and had to surrender my licence. After 4 months saw a consultant. 2 months later I got my licence back. Within 3 days I had a seizure so back to square one driving licence surrendered again and put on low dosage medication. Seizure free since July 2024. Seen consultant twice and she is happy for me to drive. Have notified DVLA and they have advised they will write to consultant for confirmation so hopefully in July I shall get my licence back. So frustrating not being able to drive. Makes meeting difficult.

Problem with epilepsy medication is it seems to affect erection adversely and I believe you can not take viagra or other aids to overcome ED.

Best of luck."

Depends on the meds. What are you on?

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By *arehamMan
11 hours ago

_areham

Hey chaps. I like many of you, I too have Epilepsy. I had a full TC seizure out of the blue. Looks like I had a bleed/haemorrhage to the top of my Thalamus and I now have epilepsy affecting my left temporal lobe.

My seizures are now under control now, but it took nearly 5 years and multiple combinations of various drugs till I settled with a combo of Keppra (Levetiracetam) and Lamictal (Lamotrigine). Losing my driving licence was devastating. I'm a petrol head and have had fuel in my veins from birth. I've got my licence back now, but I became reliant on non-existing or shitty public transport or relying on family and friends to help out. Not great when you are having raise 2 school age kids and also need a car to get to/from work.

I've suffered with accepting the diagnosis, the depression, and at times I went to some very bad and dark places. If it wasn't for my partner and kids, I wouldn't be here, and I'm sure you know what I mean.

My memory is shite. I forget words, names etc... but I can recall shit from 20-30 years ago like it was yesterday.

As for the mention of ED, I've not had problems with taking various ED meds. I've tried the usual ones. They've worked and I've not had any major side-effects nor seizures.

I was always told by my Neuro than no one persons epilepsy is the same as someone else's. We all have our triggers. Most of us take drugs but in varying doses and different drugs.

Happy to chat to anyone that just needs to offload about their epilepsy to someone who can understand.

Stay well all of you x

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By *awihMan
9 hours ago

Aldershot


"How do people cope ? I got diagnosed a year ago and I am on very very strong meds. My Mother in law died yesterday and I had a seizure as I classes her as my mum as my birth mum was useless

I've had it for just over thirty years. Brought under control in about 18months but the seizures were far apart, apart from when I went statust epilipticus a couple of times which is very serious. What meds are you on. I'm on sodium valproate but a very high dose. Every year the doc asks if I'm interested in reducing my dose, but to do that you have to hand in your driving licence until you are 12 months clear. I can't afford to do that. Just remember all your prescription items are now free, not just epilepsy meds. That took a few years to find out!

If you are under 60 then your GP should have advised you that you qualified for a “Medical Exemption Certificate”. That is what happened with me when I was diagnosed with T2 Diabetes. The certificate is valid for 5 years (if I remember correctly) then you have to apply to renew the certificate. When you hit 60 you get your prescriptions free anyway. If I remember correctly there are only 6 or 8 conditions that you can get the exemption certificate for. But I had been paying for all my other meds for ten years before a chemist told me I don't need to. That was completely by accident as I was getting my epi meds along with something else at the same time."

https://www.nhsbsa.nhs.uk/check-if-you-have-nhs-exemption/medical-exemption-certificates

Just in case anyone else isn’t aware the above link tells you what conditions qualify and how to apply for the exemption certificate. Remember it covers you for all NHS prescriptions- including those from NHS Dentists.

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