Is this a sound advice from GP re fits?

Yes I can understand you totally. My husband is very reluctant too to give up altogether especially the doctors don't seem to know if the alcohol is the major cause. What do you think? Do you think alcohol is triggering your fits? My husband used to drink a lot and wad told by a neorologist that he should gradually reduce the amount otherwise if he stops suddenly it's dangerous. It's not that he is dependent on alcohol he just does not want having fits because of it. I don't knis may be that GPs advice was not sound. How often do you have fits? And are you on med?

Thank you very much for sharing,

Warm Regards,

Gina

Thank you very much for your advice and sharing.

My husband takes 4 epilin ( 300 gr each) tablets per day. Is this a big amount or relatively small doze? We do live in North west London near Finchley road and my husband is a patient at royal free hospital. I don't know for some reason because my husband had a history of drinking they don't like giving him appointments and I'm really frustrated with it and don't know what to do. My husband did drink a lot previously but he has never been dependent on it. If I understood you correctly you are saying that in that case even a small amount of beer might trigger a fit?

Could you please tell me if 4 tablets of epilin is a high doze? Or do you think we should ask the nurse to increase his doze so it can control his fits fully? You also mentioned that no matter what doze of medication you are on if you are drinking even a small amount of alcohol it will not control the fits. Is this right?

Thank you very much Les for your advice,

It's really helpful.

Warm Regards,

Gina

If I understood you correctly you are saying that

You are very much welcome. So, we are looking at 1,200mg of Epilim a day in total - this is classed has a middle rate dose, not low and no where near a high dose. The maximum you can take is 2,500mg of Epilim, however Epileptic Specialists will never put you on a dose this high, they change it at 2,000mg which they class has sensible and not going over the top.

Controlling seizures is not easy, it can take a few years in some cases. You said your husband had a history of drinking, do you mean that at any stage he was classed as an "Alcoholic" and needed treatment, or was it well below this? Usually, what happens is you have drunk a lot in the past then your seizure threshold level is lower hence it is more risky, that's why I mentioned it. I know I cannot drink at all, half a glass of wine, and I was asleep one Christmas, but now I'm on over 30+ tablets a day for multiple disorders.

If he was not classed as an alcoholic then, he should be safe on a few amounts of alcohol, then try maybe a bit more - but note down any seizures that appear. Has your Doctor given you syringes of a drug, which brings people out of a seizure? My wife administers mine, its basically a oral gel that you put inside and along the gum line of the patient. I can get you the name if you need it. It's not like the old days when people were given suppositories to be inserted in the rectum, too many were injured so now it's all changed.

Do you not have the facility to ask to be referred elsewhere, to see specialists? I asked my oncologist if I could be seen in another town, because it was such a long way to come for just a 15 minute appointment, and they referred me there and then. That was when I had cancer though, I did the same with my Neurologist. Anything thats easier, the appointments still come from the old hospital but they are for the closer hospital. Perhaps you should do the same, a doctor can also refer you to another hospital, or if you don't like your own doctor you can ask to be referred to see another. You're not locked to any specific doctor or consultant.

Hope that sheds a bit more light on it... the Epilim dose is not high and not low, so I would say he would be okay, as long as he takes it steady.

Regards,

Les.

Thank you very much for your generous advice again. I'm sorry to hear about your problems with seizures and other conditions. I hope you are doing well now and it's well controlled.

My husband never been defined as an alcoholic. Although he drank a lot from a young age and he is very tolerant of it. If he wants he has a mental ability to stop drinking without craving for alcohol or having other related symptoms. The only thing seems to be happening if he quits alcohol is fits. Thank you for letting me know that his doze of epilin is not a very high doze. It's good to know.

We have suggested to out GP to refer him to a different hospital neutologist but the GP said let's finish the tests we have started with current hospital and then think about if again.

One day my husband discharged himself from the ward after being out there as a result of fits. I don't know ever since they like to think him as a non compliant patient.

The other day he had a fit when I was not home and that scared me a lot just in case he falls over or .... Have you ever had a situation like this?

Thank you Les,

Take Care,

Gina

Yes, I have had situations like that, but I'm all setup if I fall or even have a seizure.

I have discharged myself from hospital before, because I fell out with the staff on the Ward, over incompetence and a lot of other issues that I reported to my doctor when I eventually got back out of hospital, I was rushed back in a day later, but I had 2 major stomach operations in 3 days! That put me in a 10 month recovery period. But I did it, and lived again, 3 times now I have been close to dying - but got through it.

"The other day he had a fit when I was not home and that scared me a lot just in case he falls over or .... Have you ever had a situation like this?"

Yes, I have like I stated at the start of this message. What you need to do is contact Adult Social Care for your area, usually they are situated in your local Council Offices Building, you need to ask to have a Occupational Therapist Review. Or your doctor maybe know how to do the same using the District Nurses in your area. What you need is a person referred to you by either the District Nurses or an Occupational Therapist and ask if you can be considered for a TeleCare System to be installed. This is a system that is connected to your telephone line, it allows your husband to where a grey band on his wrist with a red button on it, they also install a carbon-monoxide detector next to your fire detector, both work wireless to a box with 3 large buttons on.

An engineer will be sent out to set it up, it is setup to call up to 2-3 people then emergency services, but if your husband presses the red button on his wrist the box dials out to the nearest center where they talk him through various things, and if he can do them, if an ambulance is required they will dispatch one at anytime, whether he as fallen or just come out of a seizure - if you have a mobile phone they will put that as the first call, or second, it depends you know that can get to husband to help, either way he will have help in minutes. The system picks up your voice from virtually anywhere in the house, well I'm in a bungalow so it's a bit easier for me. If you type in to Google "What is TeleCare"  it will list the things it does. If you go through the council Occupational Therapist then you do not pay system rental fees, they are all covered for you.

Hope that helps,

Regards,

Les.

Thank you very much for your recommendations. I Had not noticed your reply up until now. Thank you for recommending the telecare device. I have looked at it on Internet just now. I'm bit confused though. Does my husband have to press the button himself? Because he is always unconscious when he is having fits. So I don't know in that case how he can notify the ambulance?

I hope you are doing well now both physically and psychologically . You have done really well to overcome those difficulties. When it's spring and days are longer and everything is blossoming it's much easier to keep a positive spirit isn't it? I hope you are enjoying the lovely spring Les.

Cheers,

Have a lovely day,

Gina

I'm not sure how well you are up on electronics and pairing of devices, but basically you have a main controller box near your main telephone socket, they unplug your main phone and plug their box between your phone or phones, this allows it to override all phone calls and even if your main phone has been dropped, for example half way through a conversation. Telecare sends a signal to instruct both lines of communication are being interrupted which you will hear "Emergency outgoing phonecall being made please hang-up!" - the first time I heard this I was on the phone to my brother, and wondered what was going on. Basically, Telecare make calls to you - these are test calls, and you do not need a phone to talk to them they can hear everything going on.

Epileptic Seizure Pre-warning

Now, to your question - what you mentioned is quite true, I do not know your husband - but could you ask him if he has any pre-warning before any Epileptic seizure? this may sound stupid to you, it did to me when I was first asked the same question. With normal Epileptic Seizures people have said they have no such thing, until the person asking the question starts firing some strange questions at you; one of the main examples is: Do you ever get a taste of onions before losing consciousness? You may have found your husband does not actually know, or does but it is unclear to him. There are a number of Epileptic Specialists that will go through the questions, including that one I mentioned with your husband, because they specialise in this field they know what questions to ask that might make your husband recall, just before losing consciousness. It maybe just for 1-2 seconds but enough time to press the Emergency Button on his wrist, it is worn like a watch, there other devices like pendants which go over your head and hang around your neck, but they don't recommend them just in case during a seizure you could cause injury to yourself.

Come to think of it, I think your doctor should have a copy of the seizure questions, basically they go through them one by one - hoping one of them 'jogs' your husbands memory. A person with Epilepsy normally has a form of warning, but they are nonrecollective at the time. This is what I said sounds silly but a large majority of epileptics do have some form of notification just before their seizure occurs. So perhaps having a word with your doctor would be a good idea. 

There are a few cases where this does not happen, with me I have no warnings of seizures, but I have Epileptic and Functional Episodes, both of which look the same to a person in the same room, but they are totally different to the person affected. 

Epileptic Seizures = involuntary movements/spasms uncontrolled unless treated during or after seizure. An ECG will show the brain pattern of electrical pulses.

Functional Episode = involuntary movements/spasms uncontrolled unless treated during or after seizure. So far it looks the same, but the patient having the seizure does not have the same symptoms as an Epileptic Attack. The involuntary movements/spasms are there but the person is conscious to a fashion - durinng the seizure the person can see what is going on around them, but has no way of communicating, since all senses are affected. You could be calling their name, they would hear you but in no way can they respond back to you. Now, the big difference, if an ECG is done even at the time of the Seizure no out of the ordinary brain pattern is detected at all.

But with both types of seizure the patient would feel very tired and worn out after coming around. Now, about that RED button again, if a patient has multiple seizures - it could be pushed between them, or after if the person still feels un-well or unable to get back up. To be honest, I would not be without mine, it can be a life saver and many people swear by them. But I guess, it would be up to you as a couple if you would want the system in your house, the fire alarm detector is a bit more advanced, that also is paired to the main controller box. Of course if you have a power cut then it switches to battery back up - if any new battries are needed at anytime the box will dial out and order them for you, then you will get a call to find when the best time it is to call for an Engineer to fit them for you. The unit is just all automated.

That's a better write up, and how the box can be used before a seizure occurs (this might require your husband to see a Epilepsy Specialist, and know more than a standard GP.

Regards,

Les.

Thank you very much again for a very comprehensive and detailed advice. It's really kind of you.

I have a mobile phone but we don't have a land line in our flat.

Without my husband pushing the red button himself will the ambulance pick up if he is having a fit? Because he is always unconscious and asleep when he has fits. It tend to happen early in the morning at 5,6 am. He would start chewing his mouth which I will hear even I'm asleep and immediately afterwards he would start convulsing. The day before yesterday I woke up at his chewing his mouth unconscious and I managed to stop him having a fit. I started shouting at him and slapped him on his arms and surprisingly he came around but wet himself in the bed.

I have also been noticing that his mood plays a major role in bringing his fits. He always tends to have fits if he had been worried or upset or stressed out. To me it almost seems like the mood thing overrides the actual alcohol he had consumed. I don't know if you have noticed in your pattern?

We haven't managed to establish a good rapport with doctors and I'm really not expecting from them much. Hence I am trying to get more information from this site. Of course it would be very helpful and reassuring to find a good doctor who we can communicate and learn a lot of advice. I don't know Les where do you live, we live in a very crowded bit of London and may for that reason or may be my husband drinks alcohol we just can't get a proper help from medical people. I hope you have been having a peaceful and lovely bank holiday week end. Thank you very much for your very detailed and generous advice again.

Cheers,

Gina