[Help] Epilepsy

[pearl]

yep I got a diagnosis of epilepsy about 5 years ago after 2 quite big seizures in quick succession. Since then I've had numerous petit-mal ones and blackouts. The main thing for me was what I called my "walkabouts" where I'd be in a haze for long enough to end up somewhere utterly random before coming round. it really did put a big dent in my self esteem- I became very wary of going out as I'd be worried about something happening in public- I was aware that I probably looked quite odd during an episode (probably like I was drunk of under the effect of substances) which was quite embarrassing. Fortunately I've been seizure free since July last year so things are going well at the moment, but it was a rough ride. I'm fortunate in that my case was quite mild so I really feel for those with more extreme cases

I'm pretty sure I've witnessed 'walkabouts', it's like the person is sleep walking, must admit I put it down to substance abuse, but not alcohol. Now I've read your post I'll be more sympathetic next time : 0 (

 

[turienzo's lovechild]

I'm pretty sure I've witnessed 'walkabouts', it's like the person is sleep walking, must admit I put it down to substance abuse, but not alcohol. Now I've read your post I'll be more sympathetic next time : 0 (

yeh what I really needed was for someone to stop me and sit me down and make sure I didn't move. No idea how I was crossing roads etc. but I appreciate from a bystanders perspective most people wouldn't think "that person is having a seizure, I need to help".

actually the hardest thing for me was experimenting with medication and working out which one was best for me- this took a long time (6 months roughly) and the side effects were really bad and were making my life a total misery. I ended up having more days off work for that than from the epilepsy itself

 

[pearl]

yeh what I really needed was for someone to stop me and sit me down and make sure I didn't move. No idea how I was crossing roads etc. but I appreciate from a bystanders perspective most people wouldn't think "that person is having a seizure, I need to help".

actually the hardest thing for me was experimenting with medication and working out which one was best for me- this took a long time (6 months roughly) and the side effects were really bad and were making my life a total misery. I ended up having more days off work for that than from the epilepsy itself

Glad things are going well for you now and I think attitudes are (slowly) changing as people are made more aware of mental health problems, thanks for the imput, it helps to know

 

[Exile]

As ever with these sorts of threads it's completely humbling when you learn the awful things people are quietly living with whilst getting on with their lives. Good luck to you all.

Very much this.

 

[Brovion]

As ever with these sorts of threads it's completely humbling when you learn the awful things people are quietly living with whilst getting on with their lives. Good luck to you all.

Indeed. They always say if you have good health you take if for granted, and I'm certainly guilty of that. I've got a bad back but that occasionally gives me gip, and incapacitates me, but that is absolutely nothing when compared to what others go through. Durlston himself seems to have been dealt a particularly bad hand health-wise. Humbling as you say.

 

[Durlston]

Sorry to hear about how Epilepsy has turned your life upside down. I've actually had a very similar story of recent.
I'd been epilepsy free for 11 years. I had a Brain tumour removed when I was 16. The brain damage from the operation caused me to have Gran mal seizures. I was prescribed Tegretol but the side effects were way too strong for me to cope with at that age so I chose to go without medication and basically self prescribed myself with Cannabis. I went a further 4 years suffering from Gran mal seizures every fortnight which was destroying my life. Being young and fearless, I decided to go to Ibiza on my own and do a season at the age of 20. Whilst out there for 5 months, the pattern suddenly stopped and I only had one seizure out there and then it stopped altogether. It was clear to me that stress was a massive player in relation to epilepsy. I believe my seizures stopped thanks to being able to have such a fun, relaxing time which didn't look possible whilst dealing with epilepsy. Now I wouldn't recommend anyone to do what I did and not take medication whilst having as many serious seizures as I was having, but I would recommend maybe doing something which could really cheer you up as a means of helping the seizures to not have as much of a control over you and your mental health, especially as emotional stress and depression are massive triggers.

For the next 11 years I just assumed my epilepsy was gone for life and put a lot of empathisis on the Cannabis being a big cure. But last year I started to have Aura's (partial seizures) after experiencing a breakup in a very close relationship I'd been in for 5 years. Like before, I just ignored the Partial seizures believing they would eventually disappear, but this wasn't the case. Eventually I ended up having a Gran mal seizure in my sleep, waking up in a bed I'd pissed in with a horrendous headache and massive depression. I had quit weed by this point and was working full-time. I just made myself believe it was a one off seizure and carried on as normal until 2 weeks later where I had another one. This carried on and it became much more frequent than the last time I had epilepsy plus I was even having them outside walking around and once in a restaurant. Eventually I went to the GP to get on some sort of medication as it was taking over my life and affecting my job. I was told I would have to wait 6/7 months for the consultation to get the medication through the NHS. I couldn't believe people with Epilepsy had to wait this long especially with my type of epilepsy where I had the danger of SUDIP (sudden unexpected death in epilepsy). Sadly, I got back on the Cannabis just to have some sort of medication. Cannabis can sort of work but it works like Benzocaine where if your body isn't feeling 'stoned' you'll be in even more danger from having a seizure than what you would be without the Cannabis. So Cannabis isn't really a great anti epileptic like many people claim it to be. My frequency of seizures didn't change at all when I was taking the Cannabis and I even had 2 seizures in 3 days once whilst 'self medicating'. Eventually I ended up paying for a private consultation to speed up things as it was getting too worrying for me and my family. I was prescribed Lamotrigne which wasn't available when I was a teenager experiencing Epilepsy. Lamotigine works as a mood controller restoring the chemical imbalance in my brain which would trigger the gran mal seizures. People with Bi-polar also experience this chemical imbalance in the same part of the brain which causes Gran mal seizures, so they too are prescribed this medication. At first I was feeling a bit dizzy and also suffering from extreme insomnia and had a few Aura's from taking the medication. It felt almost not worth taking the medication with all the horrible side effects and I was contemplating using Cannabis again which was something I really didn't want to do.

Luckily I found out about CBD oil which you can buy in Holland and Barrets. It isn't at all psychoactive but in-fact the opposite. It's the compound in Cannabis which is medicinal and counteracts the THC (the pyscoatcive ingredient) in the plant to balance the plants dangers and make it less likely to cause extreme psychological disorders. CBD oil has been used to treat all sorts of problems from heart disease, Sciatica, epilepsy etc and it doesn't clash with the anti-epileptic medication I'm using. So I bought a bottle of it and took 4 drops of it on my tongue and amazingly, all the horrible side effects of the Lamotrigine completely went away and I was able to carry on with my life in a much better state. The medication (lamotrigine) is working an absolute treat and my life feels so much more in control again without any more stress. I would strongly recommend you keep taking your specific anti epileptic medication but also use CBD oil too. You'll see that things will become a lot better for yourself. Im sorry to hear you've lost your job, but I'm a believer that everything is meant to be and maybe you'll find a better job for yourself where it'll be much less stressful and might even make you a lot happier than what your previous job was doing. I understand that it's very hard for you to have this perspective right now but once you start to get a better control over your epilepsy, you'll start to have a much happier outtake on things with an appreciation of what life is like without the epilepsy controlling you. Like I said before, I'm very sorry for you that you've had your life flipped upside down, but don't give up. You'll be a much happier person in the long run.

If you're having anymore difficulties with it, please don't be afraid to PM me. The depression epilepsy causes is very extreme so don't think it's you who's going wrong, it's your brain going through a disease you will eventually defeat. Good luck and look forward to recovering.

PS Here's the stuff I'm taking with my medication, get down to Holland and Barrett's tomorrow, it'll be in store: http://www.hollandandbarrett.com/shop/product/jacob-hooy-cbd-oil-60008899

Sorry for not finishing my post earlier, Megazone.

There's a couple of things I forgot to mention. When I was 14 I fell off my mountain bike with no crash helmet. It was pretty horrible, sustaining a head injury and I'm 100% convinced that my epilepsy was caused by that. Back then safety wasn't taught as much and what made it worse was I was travelling downhill at quite a speed. I only remembering waking up in hospital and a few weeks later I returned to school. The first time I knew something was wrong was when we had school assemblies. The eldest sat near the front and I felt paranoid and scared that other pupils were looking at me which led to having small partial seizures. After it happened whenever an assembly got called I hid in the school toilets for the 20-30 minutes. Nobody noticed for months until I told a female teacher who was very understanding and I never had to sit in that environment again. I didn't leave school with many GCSE's. Like you did, I tried cannabis at a young age when I was at college. It chilled me out and for a very long time I never suffered any kind of seizures. But as I got older I tried the party drugs and I feel that they contributed to going back to having small minor fits, especially the electric feeling in my head. The bright lights in nightclubs didn't help either. So I quit them - eventually.

I've been in stressful jobs before where bosses have taken advantage of me. There was a feeling of claming up especially at night where I slept poorly and woke frequently.

To say 2017 has been a bad year for me personally would be an understatement. I lost my girlfriend at the end of March after she fell into a diabetic coma, then I was prosecuted and taken to court (with no one getting hurt I must add). The stress of it all led to a few shocking days where I didn't get out of bed. I really don't want pity because a lot of other people have far worse lives than me. I had a strong support network but I do feel now my epilepsy has been as bad as it's ever been and I want to put 'the speed bumps in before I get completely knocked over' as the saying goes.

I'm kicking myself because I was near the Holland & Barrett shop earlier and could have enquired about some oil from cannabis. I could still go later or tomorrow because it's certainly worth a try. Thanks once again, Megazone. If I ever have any concerns then I'll PM you or I'll say on the thread hoping my condition improves mate.

 

[Durlston]

yeh what I really needed was for someone to stop me and sit me down and make sure I didn't move. No idea how I was crossing roads etc. but I appreciate from a bystanders perspective most people wouldn't think "that person is having a seizure, I need to help".

actually the hardest thing for me was experimenting with medication and working out which one was best for me- this took a long time (6 months roughly) and the side effects were really bad and were making my life a total misery. I ended up having more days off work for that than from the epilepsy itself

I really hope things are better for you now buddy.

Whenever I see anyone staggering or is off balance I never assume they're drunk because it could be any number of things - food poisoning, epilepsy, diabetes etc.

 

[Megazone]

Sorry for not finishing my post earlier, Megazone.

There's a couple of things I forgot to mention. When I was 14 I fell off my mountain bike with no crash helmet. It was pretty horrible, sustaining a head injury and I'm 100% convinced that my epilepsy was caused by that. Back then safety wasn't taught as much and what made it worse was I was travelling downhill at quite a speed. I only remembering waking up in hospital and a few weeks later I returned to school. The first time I knew something was wrong was when we had school assemblies. The eldest sat near the front and I felt paranoid and scared that other pupils were looking at me which led to having small partial seizures. After it happened whenever an assembly got called I hid in the school toilets for the 20-30 minutes. Nobody noticed for months until I told a female teacher who was very understanding and I never had to sit in that environment again. I didn't leave school with many GCSE's. Like you did, I tried cannabis at a young age when I was at college. It chilled me out and for a very long time I never suffered any kind of seizures. But as I got older I tried the party drugs and I feel that they contributed to going back to having small minor fits, especially the electric feeling in my head. The bright lights in nightclubs didn't help either. So I quit them - eventually.

I've been in stressful jobs before where bosses have taken advantage of me. There was a feeling of claming up especially at night where I slept poorly and woke frequently.

To say 2017 has been a bad year for me personally would be an understatement. I lost my girlfriend at the end of March after she fell into a diabetic coma, then I was prosecuted and taken to court (with no one getting hurt I must add). The stress of it all led to a few shocking days where I didn't get out of bed. I really don't want pity because a lot of other people have far worse lives than me. I had a strong support network but I do feel now my epilepsy has been as bad as it's ever been and I want to put 'the speed bumps in before I get completely knocked over' as the saying goes.

I'm kicking myself because I was near the Holland & Barrett shop earlier and could have enquired about some oil from cannabis. I could still go later or tomorrow because it's certainly worth a try. Thanks once again, Megazone. If I ever have any concerns then I'll PM you or I'll say on the thread hoping my condition improves mate.

Your recent story sounds horrendous. That must've been terrible what happened to your girlfriend, but then for you to have to deal with the stress of being prosecuted and attending court, would've destroyed anyone's life. Well done for carrying on with your life considering all that and then the Epilepsy on top. You must have a very strong spirit as many would've gone off the rails after all that. There's no harm in feeling sorry for yourself when you've been through what you have. It's tragic and until you accept the severity of your dilemma's, it'll only eat you up inside. Just be thankful that you've at least had a life that other's can only imagine or watch on TV, meaning you'll definitely have a lot of character and compassion for other peoples problems. I too didn't pass my GCSE's as the diagnoses of having a Brain tumour was given to me on the day of my Prom night, which was directly after the exams. But I see that as a blessing as it wasn't the path which was meant to be and I hope you can have the same view too. Sorry to hear you've been taken advantage of by previous Bosses. Again, I've had similar ordeals. It helped me to learn there's plenty of spiteful people out their who will take any underhand chance to take advantage of unfortunate people with terrible issues as a weak means of trying to show off their believed self superiority. Don't think about them, as they're probably going through awful personal issues which their ego isn't letting them admit to. Just be grateful and proud of yourself you haven't ended up a moron like the ones who've taken advantage of you, especially considering the obstacles you've had to face throughout your life.

In relation to your bike crash, it very well could be the case. I would suggest going to your GP and asking for an appointment at the Neuro behaviour clinic where you can talk about how the crash had an affect on you and your behaviour straight afterwards causing you a lot of stress in your teens. I went for an appointment about this time last year and they found out I was dealing with childhood ADHD which may have been the cause of my Brain tumour as it grew in all the areas Childhood ADHD affects the brain. It was very enlightening to find this out and also explained why I ended up with severe osteoarthritis in my right knee from the age of 15 after being so active with all sorts of sports and not resting when dealing with the growing pains. After your appointment at the neuro behaviour clinic, you'll likely then be put through for an EEG scan.The scan enables you to know what part of your brain has the most electrical activity going on and will help you to know what the main causes of the triggers are. It will feel like a lot of weight off your mind if you can find out where and when the epilepsy began and thankfully there are people out there who'll be able to help you get to the root of the cause. I haven't yet received the EEG scan results but I'm very mush looking forward to finding out the results.

Thanks for being brave enough to put up your ordeals on here, it also helps me to read how others have been through similar problems. I'm thinking about volunteering for Mind to be a campaigner in raising awareness on Epilepsy and how poorly it's being treated in the UK with the slow service and the extremely stressful medical assessments and benefit claims Epileptic people are then having to take, which is ridiculous when Stress is a massive trigger to all sorts of Epilepsy.

Let me know how things have gone with you as I'm very interested and would love to hear that things have got better for you. Good luck mate and I'm very happy to be at some sort of help for someone who's gone through a living nightmare. I'll definitely be putting out positive thoughts for you and I hope others on here do to.
All the best :thumbs:

PS and don't forget the CBD oil.

 

[Durlston]

Your recent story sounds horrendous. That must've been terrible what happened to your girlfriend, but then for you to have to deal with the stress of being prosecuted and attending court, would've destroyed anyone's life. Well done for carrying on with your life considering all that and then the Epilepsy on top. You must have a very strong spirit as many would've gone off the rails after all that. There's no harm in feeling sorry for yourself when you've been through what you have. It's tragic and until you accept the severity of your dilemma's, it'll only eat you up inside. Just be thankful that you've at least had a life that other's can only imagine or watch on TV, meaning you'll definitely have a lot of character and compassion for other peoples problems. I too didn't pass my GCSE's as the diagnoses of having a Brain tumour was given to me on the day of my Prom night, which was directly after the exams. But I see that as a blessing as it wasn't the path which was meant to be and I hope you can have the same view too. Sorry to hear you've been taken advantage of by previous Bosses. Again, I've had similar ordeals. It helped me to learn there's plenty of spiteful people out their who will take any underhand chance to take advantage of unfortunate people with terrible issues as a weak means of trying to show off their believed self superiority. Don't think about them, as they're probably going through awful personal issues which their ego isn't letting them admit to. Just be grateful and proud of yourself you haven't ended up a moron like the ones who've taken advantage of you, especially considering the obstacles you've had to face throughout your life.

In relation to your bike crash, it very well could be the case. I would suggest going to your GP and asking for an appointment at the Neuro behaviour clinic where you can talk about how the crash had an affect on you and your behaviour straight afterwards causing you a lot of stress in your teens. I went for an appointment about this time last year and they found out I was dealing with childhood ADHD which may have been the cause of my Brain tumour as it grew in all the areas Childhood ADHD affects the brain. It was very enlightening to find this out and also explained why I ended up with severe osteoarthritis in my right knee from the age of 15 after being so active with all sorts of sports and not resting when dealing with the growing pains. After your appointment at the neuro behaviour clinic, you'll likely then be put through for an EEG scan.The scan enables you to know what part of your brain has the most electrical activity going on and will help you to know what the main causes of the triggers are. It will feel like a lot of weight off your mind if you can find out where and when the epilepsy began and thankfully there are people out there who'll be able to help you get to the root of the cause. I haven't yet received the EEG scan results but I'm very mush looking forward to finding out the results.

Thanks for being brave enough to put up your ordeals on here, it also helps me to read how others have been through similar problems. I'm thinking about volunteering for Mind to be a campaigner in raising awareness on Epilepsy and how poorly it's being treated in the UK with the slow service and the extremely stressful medical assessments and benefit claims Epileptic people are then having to take, which is ridiculous when Stress is a massive trigger to all sorts of Epilepsy.

Let me know how things have gone with you as I'm very interested and would love to hear that things have got better for you. Good luck mate and I'm very happy to be at some sort of help for someone who's gone through a living nightmare. I'll definitely be putting out positive thoughts for you and I hope others on here do to.
All the best :thumbs:

PS and don't forget the CBD oil.

Thanks ever so much for your lovely and caring post mate. I forgot to mention the terrible news you were given about the brain tumour. I can't begin to imagine how terrifying that must have been at such a young age with your whole life in front of you. I'm so glad that you pulled through and it's made you into such a caring and thoughtful person. At least with my mountain bike accident I was unaware for a large part of it and others worried for me. My life was never in serious danger.

This last year has been shit personally apart from Brighton being promoted. I still think of my loving partner everyday and know that she'd want me to be happy. I was after a single girl I see in her line of work a lot but was beaten to it. Maybe far too soon. Anyway, best wishes to you and thanks for everything you've typed and sent. It's been an unbelievable help. Will keep in touch mate.

 

[seagulls4ever]

It's not at all unusual for people with epilepsy to try different medications until they find one that is 'right' for them.

Go back to your neurologist, explain it isn't working out, and see what other options there are to pursue.

 

[Durlston]

I'm giving Gabapentin a good try to see if it does work. Doubling up tonight is a bit like being drunk, stoned and tripping out at the same time. This is far too much to handle. I'm glad I'm at home (as I always am on a Saturday night now) because people would think I was out of my head if I was out walking to a pub or club like I used to. A bouncer certainly wouldn't let me in anywhere with me staggering. I'm doing exactly what I was instructed on the packet. I'm going to phone up the hospital on Monday because there must be a lot more options that are suitable.