[Help] Epilepsy

[Durlston]

I've recently been having partial seizures which have been quite frightening with my body shaking, dizziness and sickness. But for a long time now I've felt as though something really bad is going to happen to my body with my muscles claming up when I've undergone stressful days or events.

One big source of frustration is trying to explain to my doctor, who wanted to know absolutely everything about them from when, where and how I felt while they've happened. Being at night sometimes, it's almost impossible to explain and still difficult when I'm at home warning my family. Probably the most likely cause is flashing lights especially now that the days are getting shorter.

I've been prescribed Gabapentin with me already on long-term drugs - mirtazapine and quetiapine but the new med only seems to create confusion, heavy sedation and I'm not sure if they're the right medication for my condition.

Anyone else that can help me out with advice? I lost my job due to being a risk to myself with machinery. I'm really feeling down at the moment.

 

[emphyrian]

there has been lots of info about canabis oil helping people with seizures. I don't know if that is something you would be comfortable looking into but it may be worth researching it.

Hope you get it sorted. I suffer massive migraines which screws with work and everything. haven't tried the oil yet but have considered it many times.

 

[DavidRyder]

That sounds like a horrible scenario and you have my sympathy. I can't help I'm afraid, but I send my best wishes that you can get things sorted out.

 

[Austrian Gull]

Sorry to hear that, Durlston. I've had attacks on and off for the last 30 years so I know how you're feeling. Epilepsy is a condition where there's a lot of theorising and uncertainty which can be frustrating.

My attacks can be quite serious - temporary loss of consciousness - but, touch wood, I think I can minimise the risk of an attack.

Lack of sleep and too much alcohol are a bad mix as well as too much stress. Most of my attacks happen when I'm eating but I can feel the onset (blurred vision, mind drifting) so I can act before it kicks in. If I get up and walk around then it passes.

The hardest thing for me was being a boring git when I was younger and not partying too hard - now I'm at an age where that's not a problem anymore!

Look after yourself and your body - all the best!

 

[Durlston]

there has been lots of info about canabis oil helping people with seizures. I don't know if that is something you would be comfortable looking into but it may be worth researching it.

Hope you get it sorted. I suffer massive migraines which screws with work and everything. haven't tried the oil yet but have considered it many times.

I've heard that the oil from cannabis can help but I'd prefer to try a different route. Sorry to hear about your migraines. When it starts affecting general everyday life it's horrible. Thanks for your reply.

 

[Durlston]

Sorry to hear that, Durlston. I've had attacks on and off for the last 30 years so I know how you're feeling. Epilepsy is a condition where there's a lot of theorising and uncertainty which can be frustrating.

My attacks can be quite serious - temporary loss of consciousness - but, touch wood, I think I can minimise the risk of an attack.

Lack of sleep and too much alcohol are a bad mix as well as too much stress. Most of my attacks happen when I'm eating but I can feel the onset (blurred vision, mind drifting) so I can act before it kicks in. If I get up and walk around then it passes.

The hardest thing for me was being a boring git when I was younger and not partying too hard - now I'm at an age where that's not a problem anymore!

Look after yourself and your body - all the best!

I think maybe my condition has been caused by heavy ecstasy use when I was younger. Even though it's been five years since I last took any, the long-term damage is still unknown. I only drink alcohol at the Amex and the occasional away match with sleep being better since I was let go. It's bloody frightening when I'm out walking and I feel dizzy. I'm starting to recognise the early dangers.

Yeah, it's so frustrating trying to tell specialists the length of time between having a major-ish seizure. Blurred vision, as you say, is one of the early signs.

Thanks for your post mate and hopefully I get it sorted out.

 

[Ninja Elephant]

All the best [MENTION=14168]Durlston[/MENTION], there are a couple of people I work with who suffer with epilepsy. One of them screams like Shamoo and then crashes his head down onto the desk, it happens probably twice a year at work, sometimes more often. He can generally sense when one is coming, but can't really avoid them. It's scary for everyone around him but he's very familiar with the whole process now so he's a bit more relaxed about it. The other person I work with who suffers with it is generally able to avoid a seizure but getting fresh air and destressing herself but I presume hers is quite mild at worst.

I hope you get it under control, I'm sure that once you've got it handled things won't seem so bleak and it will just be a part of your daily life. Don't lose sight of the long term.

 

[Raphael Meade]

Sorry to hear of your troubles!

I don't want to sound stupid, but my dog has epilepsy and they put him on a human seizure control drug thats done a great job and nothing has occurred since. Phenobarbital is the drug (we're in the US but assuming it's universal). It can have side effects of elevating your liver function, but they did make a big thing of it being great for humans too and told me I can get it from a regular human pharmacy if the vet is ever out - not sure if it would suit you but thought it was worth mentioning as an option to look into.

Good luck with getting better!

 

[Durlston]

All the best [MENTION=14168]Durlston[/MENTION], there are a couple of people I work with who suffer with epilepsy. One of them screams like Shamoo and then crashes his head down onto the desk, it happens probably twice a year at work, sometimes more often. He can generally sense when one is coming, but can't really avoid them. It's scary for everyone around him but he's very familiar with the whole process now so he's a bit more relaxed about it. The other person I work with who suffers with it is generally able to avoid a seizure but getting fresh air and destressing herself but I presume hers is quite mild at worst.

I hope you get it under control, I'm sure that once you've got it handled things won't seem so bleak and it will just be a part of your daily life. Don't lose sight of the long term.

Thanks for your comforting post, Ninja Elephant.

The first person you described sounds like he has generalised seizures. Can't begin to understand how terrifying it must be for him and everyone close by. It's incredibly difficult adjusting to Gabapentin. I just don't think I was prescribed the right drug.

The best thing about it is that I can go in the bookies and I don't play the roulette machines due to the lights! Not that I can afford to bet at the moment. It'll take time but I'll get back on my feet with things. Hope you're doing well mate.

 

[Durlston]

Sorry to hear of your troubles!

I don't want to sound stupid, but my dog has epilepsy and they put him on a human seizure control drug thats done a great job and nothing has occurred since. Phenobarbital is the drug (we're in the US but assuming it's universal). It can have side effects of elevating your liver function, but they did make a big thing of it being great for humans too and told me I can get it from a regular human pharmacy if the vet is ever out - not sure if it would suit you but thought it was worth mentioning as an option to look into.

Good luck with getting better!

It's legally prescribed in the UK so it could be an option. Only problem is with it being a barbiturate, doctors may be reluctant to start me on it as a barbiturate overdose can be easily done.

Glad your dog is healthy and suited to it! Thanks for your help and post.

 

[Megazone]

I've recently been having partial seizures which have been quite frightening with my body shaking, dizziness and sickness. But for a long time now I've felt as though something really bad is going to happen to my body with my muscles claming up when I've undergone stressful days or events.

One big source of frustration is trying to explain to my doctor, who wanted to know absolutely everything about them from when, where and how I felt while they've happened. Being at night sometimes, it's almost impossible to explain and still difficult when I'm at home warning my family. Probably the most likely cause is flashing lights especially now that the days are getting shorter.

I've been prescribed Gabapentin with me already on long-term drugs - mirtazapine and quetiapine but the new med only seems to create confusion, heavy sedation and I'm not sure if they're the right medication for my condition.

Anyone else that can help me out with advice? I lost my job due to being a risk to myself with machinery. I'm really feeling down at the moment.

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

 

[Triggaaar]

I've been prescribed Gabapentin with me already on long-term drugs - mirtazapine and quetiapine but the new med only seems to create confusion, heavy sedation and I'm not sure if they're the right medication for my condition.

Is it possible to get a second opinion from another doctor?

I've no experience to pass on, I hope you can get it under control.

 

[Triggaaar]

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.

I guess supporting Brighton's out of the equation then.

 

[Megazone]

I guess supporting Brighton's out of the equation then.

Not at all. There's a great anti-eplipetic for this called 'Crystal Palace'. The bottom of the table is where you'll find the stuff. Works an absolute gem.

 

[W.C.]

Not at all. There's a great anti-eplipetic for this called 'Crystal Palace'. The bottom of the table is where you'll find the stuff. Works an absolute gem.

I am afraid I can be of no help to the OP but all the best, sounds tough, hope others can provide you with some good advice.

 

[pearl]

I've recently been having partial seizures which have been quite frightening with my body shaking, dizziness and sickness. But for a long time now I've felt as though something really bad is going to happen to my body with my muscles claming up when I've undergone stressful days or events.

One big source of frustration is trying to explain to my doctor, who wanted to know absolutely everything about them from when, where and how I felt while they've happened. Being at night sometimes, it's almost impossible to explain and still difficult when I'm at home warning my family. Probably the most likely cause is flashing lights especially now that the days are getting shorter.

I've been prescribed Gabapentin with me already on long-term drugs - mirtazapine and quetiapine but the new med only seems to create confusion, heavy sedation and I'm not sure if they're the right medication for my condition.

Anyone else that can help me out with advice? I lost my job due to being a risk to myself with machinery. I'm really feeling down at the moment.

So sorry to hear this, what a fvcking dreadful year you've had

 

[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

Megazone, thanks for your time and effort in tapping out a very long post!

I'll try my best to answer everything that you've mentioned. I feel mornings are a better time of day to say how my body feels. Firstly, losing my job was something that was inevitable. My boss was very perceptive and could see how I was behaving in a large group talk but he mistook it for not paying attention. When I explained he felt terribly bad and said what do I want. I said I needed a break even though it wasn't a particularly stressful job and although financially it's placed a strain I think in the long run it's for the best but I want to get myself sorted out first and hopefully, as you say, I can try and enjoy my life before returning to work.

When I'm in a public place like on a train and sitting down I tend to move my hands and focus entirely on outside to try and take my thoughts away from having panicky thoughts. It's almost impossible to warn strangers when I'm going to feel like I'm going to have a partial seizure. As you described the possibility of having a general full-on seizure is terrifying. Things like loss of bladder control and hitting my head hard on the floor scare me. I used to smoke a lot of cannabis and I'm glad it sorted you out for a long time. Having to wait seven months for an antiepilepsy drug is totally unacceptable and I'm sorry for you having to go down the cannabis route. It's not something that I'd smoke again but the oil sounds a really good idea (without the feelings of getting high). I've tried Gabapentin once again. It zonked me out completely, I could barely walk in a straight line and sure enough all the horrible side effects resurfaced this morning like tight muscles, a hangover feeling and stinging urine when I go for a wee. I'm going to see a specialist even if I have to spend money and go privately because I listed absolutely everything to my doctor and I was almost crying with frustration at the end. That's not good. I may try and get a prescription for Lamotrigine as other sufferers of epilepsy have much more experience than doctors.

I have to go out now but I'll finish replying fully to your very kind post. It must have taken you a couple of hours?! I'll get to where I want to be finally and have my condition under control. I'll finish replying later. Thanks ever so much mate for your help.

 

[Durlston]

So sorry to hear this, what a fvcking dreadful year you've had

Thanks for your best wishes, pearl. Maybe all the horrible things are connected - I don't know, but I'm trying to look forward now. x

 

[turienzo's lovechild]

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

 

[lost in london]

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.