Hi All hope you can help

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

Status
Not open for further replies.
S

stokesy_1

New
Messages
3
Reaction score
0
Points
0
Hello All

My name is Chris and i live in Birmingham UK and i have had epilepsy since i was 20 and i am now 23 & 1/2.

Recently i am finding it very hard to live with my seizures due to them becoming more frequent and was hoping for a little guidence from others with similar problems....

When i was first diagnosed with epilepsy the neurolagist that was assigned to me didn't really explain it to me and i didn't know what to expect so just presumed he was right and i was wrong. Anyway long story short i was fit free for 18 months and then i had a grand mal seizure (which all my fits have been) and this was while i was driving so i was back in hospital again.

Since August 2007 i have had at least 1 fit every 2 weeks and all the doctors do is just up the medication im on. At the moment im on 3000MG of epilim and 500MG of Levetiracetam (each day)

I dont know if this is alot compared to other people and i dont want to sound like a sad case but that seems lots to me and all they do is keep playing with the medication. They also tried me on lamatragine but that gave me too many headache's and made me drowsy.

I have recently gone to a private doctor who is quite expensive but i am hoping for some better results.

Thanks Chris
 
Hi Chris
Welcome to CWE. I have a son who is 23 in a few days, so I can imagine how difficult it must be to get on with life when this is occuring.

I tend to have a different outlook on this than many so please do read the site, and make some logical, knowledgeable and responsible decisions with your care.

In my NON-medical opinion, if you were not born with this, or did not have a head trauma, or life threatening illness, the medication is putting a bandaid on the cause. The symptoms are still there, only reduced so that you are not over your threshold level.

Everyone has a seizure threshold, some are just closer to that limit than others. The reason people are here at CWE is that they were pushed over that limit for some reason or another.

You lived for 20 years seizure free. What is different in the last four years to make your life different? I believe for my daughter that nutrition, hormones, stress, toxins have pushed her over the edge. We are working to reduce these and I see the episodes dramatically reduce in number. We went the medication route, and found the side effects were unacceptable without any benefit. In fact I believe they increased the seizures.

There is some great reading material here, about vitamin deficiencies, hormone imbalances, electrolyte imbalances. Also some great info on neurofeedback that you should take a look at.

Personally it is my opinion and the approach that I have taken, that you need to find a medical practitioner that is willing to answer questions, and be honest when they don't know the answers. To research all avenues that might make sense to your particular situation. Perhaps you have other "clues" that will help you to consider what are your triggers, so that you can build up defenses against them.

I find the number one area that is an easy yet difficult for many is the nutritional changes that need to occur to return to the best health base as possible.

Hope that makes sense.
Remember I am a mother of a 16 yr old with a seizure disorder that began at age 14.
I am stating my opinions and experiences only.
 
welcome from the USA

:cheers:

Welcome to our web site. I believe you will find a lot of good information here and links to other helpful sites. You are one of several members from the UK. It is always interesting to see the different approaches to treatment by the doctors from different countries.

Unfortunately, too many people have had issues with doctors who do not communicate with them or actually listen. I am glad to see you looking for a further opinion. It may be worth a fortune to you in the long term.

I am not familiar with the epilim. However, I do take Levetiracetam (brand name keppra here in the US). The level of Levetiracetam you are taking sounds quite low. I take 2000 mg per day plus phenytek. Check out the thread Keppra - Alone or Adjunct. This will give you a wide range of information about people taking Keppra/Levetiracetam.

I hope you like our site and visit often. I will usually have a cup of coffee ready for you.

BuckeyeFan

:cheers:
 
Oops - forgot to add that I started having seizures at age 20 as well. Though they have put some limits on my life, I am 46 now with two college degrees, 3 daughters, and 2 grandchildren. The epilepsy can be very mean at times, however I have still been able to live a pretty full life.

Hope your future is just as bright.
 
Thanks for reply's

Changes to my life since i was 20 were probobly doing less physical work due to getting an office job. before that i was very physical as my job was hauling office equipment to and from office's. Not sure if you know but college is 16-18 years of age in the uk so i got my first job part time while at college then i continued with this job until i was 20. I also used to go to the gym 3 times a week but i haven't been doing that much either anymore as i haven't been able to drive or i have been in hospital because i just hit my head quite alot when i do have a seizure. (got some minor scars from it)

I was thinking that maybe spending more time on the PC everyday had something to do with it, i have also stopped drinking but this seems to have made no difference and my fits have still increased. On weekdays i try to get 8 hours sleep and ill go out on a friday /saturday night to chill out.

Cheers Chris
 
Hi Chris! Welcome to CWE! :) We're a pretty friendly crew, so feel free to ask any questions, or just vent. Robin gave you some good basic advice. Also, try reading the epilepsy 101 thread. It's got some great info on epilepsy, and might help it make a little more sense to you. ...Oh! Also, are you taking any herbal supplements? Sometimes they can effect medication levels...so if you take things like Gingko or ginseng they can interact with your medications, and you should tell your doctor about using it.
 
hi welcome to CWE I know its a tough thing to cope with, but remember we're here to support you and your familyduring this time :)
 
hi Chris

and welcome to CWE!

I was just scanning thru the posts, and noticed the last post you'd made.

You commented you sleep 8 hrs a night during the week except Fri/Saturday when you chill out.

First, do you stay up all night those 2 nights, or close to it? And second, not to be nosey, but are you drinking, too? The reason I'm asking is that BOTH of those things are known triggers for seizures. Consider the timing of your recent seizures in comparison to your "chill out" time. If its within a few days after, it's probably tied to it.

And yes, spending too much time on the PC can be a trigger too, especially if you're photosensitive....

Good luck, and welcome to CWE!:bigsmile:
 
Hi Meetz1064

No i just used those as examples.Ill go out like once a week on a friday or saturday, i used to go out more as you do when your young. No i haven't drank since christmas day as i thought that would be the next plan of action.if i feel tired on any a night out then i wont go in the first place or ill just come home early but yes it prob will be a 4am return, but when i do go out it is only once a week and i have never got work the next day so i dont have to get up so i just sleep it off and have been fine last year.
 
Hi Chris

Welcome to CWE. Just kick off your shoes and make yourself at home. We're a pretty lively bunch so fitting in won't be a problem.
 
Hello Chris!

I'm new here to and still learning a few things myself, but within a couple of days of being here I have learned alot!
 
Hi Chris!

My name is Danielle, and I am new here as well. I am very sorry to hear what you are going through. I have gone through the same experiences you have been going through about the doctors upping your meds. Although, in my situation at that time I was 10. It was awful. But, luckily I was able to find a new neurologist and he got me back on track. So I wish you the best of luck, and through the years of living with epilepsy I have learned that the one thing that got me through all of the pain and hardship was FAITH.
 
Status
Not open for further replies.
Back
Top Bottom