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Phoenix13

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Hi all,

I am from the UK and have been recently diagnosed with Epilepsy, I am 43, married with 4 children (all teenagers)

Back in March of this year I had an out of the blue Status epilepticus, my seizure lasted for over 20 minutes and I stopped breathing and my heart also stopped! If I was alone I wouldn't be here. My wife an ex paramedic brought me back by using CPR.

I spent a week in hospital having every test possible but all was normal, speaking to the neurologist we realised I had been having episodes of sorts over many many years, blackouts/accidents put down to being clumsy and sitting up in bed making a screaming noise, put down to dreams/nightmares.

Since the huge one in March I have had 3 day seizures a few night seizures and many absences? It seems the big one has kicked off my Epilepsy. I have since given up my job (Was in the Police) as did not feel safe doing this job. I have found part time work which is in walking distance. Although I have had seizures just before going to work and wife has noticed that my seizures seem related to stress. And to be honest the worry of another big one and scared to be alone or do anything has knocked me for six. I used to go into situations that most people would run away from now I feel I can't do anything outside of home or feel comfortable with anyone else other than family and close friends.

Don't want to be seen as a burden (feel like it) or weak as just lost all confidence. Seeing Neurologist on Weds which is a good job as had another seizure this morning, girls were arguing before school tried to sort it but they left unhappy. Went to make a coffee and sit outside and bam on the floor cut my hand scraped my arm and wet myself.

Thing is this is really getting me down, I cant help feeling like I am letting everyone down, relying on everyone and hate seeing it affect everyone else. For some reason my wife seems angry with me this morning after todays seizure, said I cant seem to cope with stress, which may be right. I don't blame her for her frustration. All the pressure and me not working atm.

Sorry for the long rant but just needed to let it out.

Stephen
 
Hi and welcome to CWE!

I can completely relate to the loss of confidence. I am still "there" and have had seizures for 6 years, although slowly this is improving. I, too, have found others almost angry that I have seizures. While I am not married, I sense the anger and frustration from friends and family. I would suspect that your wife is thinking she cannot rely on you for support anymore and is frightened as well as worried, and unfortunately is presenting this as anger. At least, this is what I am guessing is the reason why those closest to me come across as angry.

As far as feeling down, this is common too. I'm glad you're seeing the neurologist soon. This will help your emotions as well - finally feeling like someone is going to deal with the matter. I would imagine they will do imaging and an EEG if it hasn't been done already, and start the process of finding the best medication for you. Since you have already gone into status, I would also ask about a rescue medication that your wife can give you in the event of another prolonged seizure.

In the meantime, write down as much information as you can about how you feel before, during and after a seizure. Have your wife do the same. Also write down all the questions you want the neurologist to deal with. If not all is covered, don't be afraid to insist on a second appointment before you leave the clinic. If this is a general neurologist you are seeing and getting nowhere, ask the neurologist or your GP for a referral to an epileptologist.

Best of luck to you and I hope you will keep us posted as to how your appointment goes!
 
Get referred to kings college you may have fight on with doc but be coincide with reason.It only has e unit and one of the best in world.i was under them for years until I moved
 
Thank you

Good morning,

Thank you for your replies :) it does help to know others feel the same and your not going mad or alone.

Yes fingers crossed for tomorrow and apparently the Neurologist is very highly thought of so in good hands. I have had every test done and all come back normal but I know that can be the case and still have Epilepsy. I even have had a heart monitor inserted into chest!

Being tested for Brugada syndrome also, its a sudden death syndrome :( my wife calmed down yesterday, I think its just as frustrating for her and we all need a little meltdown every now and then, her mum is also unwell atm.

Will post up what Neurologist says tomorrow but like you say its getting the meds right.

Got to stay positive!

Stephen
 
Wow you have been through a lot in a short period of time. I wonder where you heard that stress causes seizures? I think that isn't true, instead a doctor told me we feel stressed as there are changes in the brain going on and we notice that first and then the seizures come. So if your wife thinks stress is causing seizures that may be why she is upset? In the beginning all of this really hard to deal with but hopefully with the right medications to help control seizures and change of lifestyle you will be able to accept this medical condition. Good luck to you and keep in touch it helps to share and get ideas. Jeanne
 
Sorry Jeanne but maybe your doctor has it wrong.

http://www.epilepsy.com/learn/triggers-seizures/stress-and-epilepsy

"Stress is one of the most common seizure triggers for people with epilepsy."


"How does stress trigger seizures?

We aren’t sure just why stress may trigger a seizure. Stress is an expected and unavoidable part of life. It is our body's reaction to any change that requires a physical and emotional response. Stress is known to cause worry, depression, frustration and even anger. Stress may affect people in many ways. Consider the following:

Stress makes or releases certain hormones related to the nervous system that can impact the brain.
Areas of the brain important for some types of seizures, for example partial seizures, are the same areas of the brain involved in emotions and responding to stress."
 
Phoenix13,
! ! ! WELCOME to CWE ! ! ! :clap:
It is going to take some time for you to get an understanding of your E! This is a very important thing for you do. Don't try and learn everything about E in too much of a hurry. Doing something like that may just cause you to miss some of the necessary facts that you will need to have to totally understand your E.
I have had E for 50 years, bur I am learning new things about E every day that I am a member of this site. This means that YOU CAN learn the things you will need to know! You just have to be willing to do this over time, not all at once.
The feeling of being a burden on others is something that you will learn to accept as a part of your life. I'm sure you have seen other people who have needed help from others to do things. You have to adjust to the fact that you are now a person similar to them. It definitely doesn't make you any less of a person. I had to do this even though some people refuse(d) to lend me a hand when I need(ed) one.
The only way that those feelings can hang around is if you allow them to. Just keep a stiff upper lip and show the people who refuse to accept you that you are still the same person with a few new needs.
Living with E is no different than a person who lives with asthma or diabetes. The only thing that some people seem to see is that a person w/E may not be allowed to drive. These people with these other conditions may have seizures just like we do!
Stephen, your wife is going to need some time to adjust to your situation just like you will. She will have to make an effort to learn about E also. She should be proud that she was able to save you. Now she just has to be willing to make the effort to learn facts about E that she will also need to be accepting of your situation. The best thing that the two of you can do is sit down and calmly talk about what each of you needs to do now.
You say that other people are feeling disappointed with you. This is probably because they themselves have always felt as though they could ask for your help in doing some things, but now they see that they are going to have to find someone else to help them unless they are willing to help you with a ride. When you get a ride you can help them just like you used to. When you let them know that is all that is needed to get your help, they should be able to see you are still a helpful person and you can feel better about yourself because you are again helping them!
If you have any questions in the future, just ask. The members of CWE have lived many years combined w/E and have a lot of experience to draw on! :tup:

ACsHuman
 
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Hi guys, and thanks again for all of your replies :)

Well I have seen the Neurologist this morning and he is going to change my meds to Keppra and slowly take me off the Lamotrogine as it seems like it's not working. I asked him a few questions about why it happened and why such a massive and life threatening seizure and he replied "We may never know" could be from a convulsion I had as a kid to it being a build up of stress over the years and not recognised the symptoms of it starting, brain just decided enough was enough!

Wife is ok and to be honest she has been an absolute star and so understanding, I think the other day it just got all too much, I really couldn't ask for a more loving caring and understanding wife. Just got to get used to the new drug and I know there are a few side effects but as long as I recognise them I should be ok? Fingers crossed. Looking at ways of making sure I am not alone often as Neurologist has said even with medication the risk of a status will always be there.

So a few changes to be had and some adjusting but we will get there, been through worse ( My first wife died at the age of 30 through cancer leaving me with the kids, if I can get through that I can get through anything) As long as the seizures stop or completely slow down then I should be ok! I can deal with the absences and twitching.

Thanks again guys really appreciate your replies.

Stephen
 
Hi, Stephen
Thanks for the update. Sounds like the neurologist visit went well. You may get several responses here talking about "Kepprage", but this by no means is an issue for everyone. The risk is 1-10% as per the site drugs.com I didn't have any anger issues when I was on it. I got hung up on the fact that every time I got frustrated it was the Keppra until I finally realized that my frustration and anger was no more frequent than before I was on it, since I was frustrated in general in dealing with life changes thanks to epilepsy. The probability of many side effects developing is slowed with a slower titration onto the medication (my doctor and I reduce titration onto a medication to about half of the so-called standard titration) and this helps incredibly.
Of note is that there are other medications that can help with the absences if Keppra doesn't do the job, but one step at a time :) Best of luck to you, and looking forward to another update.
 
Kepprage

Yeah I have heard of the side effects and the irritability and anger, thing is as Neurologist said and you mentioned that not everyone gets it and I feel that sometimes if you read up you almost expect it. I am going to try and be very sensitive to how I am feeling and if I feel it coming or notice it I will remind myself its not me it the drug, sort of control t if I can.

Fingers crossed anyway! Start the new meds this evening so let you know how it goes.
 
Blimey

Well took a Keppra tablet last night and this morning and damn! totally wiped out, so sleepy but also so chilled.
 
Hi Phoenix13!
I take Keppra as well. Being tired but very relaxed were the things I noticed for myself, too. In fact, I'm so relaxed that I no longer suffer from the anxiety I did before taking it. I only take a total of 1,000 mg/ day, but after more than a year of taking it, I still feel great. I wish you continued success!
 
I Use KEPPRA and Feel Great!

Phoenix 13,
I started taking Keppra at the same time I was seeing a counselor about depression(about 11 years ago) so I don't know if my feelings of being at ease are from the Keppra, the counseling or a combination of both, but I couldn't be happier with the result! I now feel like a new, free person! :clap:

ACsHuman
 
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