Epilepsy

LegacyUser

My girlfriend has epilepsy.

She gets a seizure every other month, and a number (two to ten) warnings (minor, partial seizures, barely noticeable to others, but she will have to pause whatever she is doing for a second or two) every other day. She is on a large number of pills, and has been for last 15 or so years! A scar seems to be the problem, but it will take them months of tests to see her condition can be improved with a surgery.

Not so much worried, but have many questions all the same:

Anyone here has same or similar condition?
Do you know anyone with similar condition?
Anyone know much about these sort of surgeries? Effectiveness, cost involved, how long would it take for them to do all the tests?
Any comments on how the medicines would effect her future, pregnancy for example?

I must add, I am not expecting to find exact answers here; but more from your own experience or from someone you know personally. I have done a lot of research into the condition and the surgery success rate etc etc, but I suppose I am trying to get how its been to others who have been through this.

thanks a million and bless you all!

Beruthiel

BoneO wrote:

Not so much worried, but have many questions all the same:

Anyone know much about these sort of surgeries? Effectiveness, cost involved, how long would it take for them to do all the tests?
Any comments on how the medicines would effect her future, pregnancy for example?

these are questions that she should be asking her doctor.
this is not a Medical Forum and there are no qualified people here to answer these questions effectively

LegacyUser

Beruthiel wrote:

these are questions that she should be asking her doctor.
this is not a Medical Forum and there are no qualified people here to answer these questions effectively

Beruthiel, thanks! However, if you read the last paragraph of the post, I think I have made it very clear.

BoneO wrote:

...I am not expecting to find exact answers here; but more from your own experience or from someone you know personally. I have done a lot of research into the condition and the surgery success rate etc etc, but I suppose I am trying to get how its been to others who have been through this.

Rev Hellfire

My daughter has hypsarrhythmia (Infantile Spasms) and as such is treated by quite a number of anticonvulsant drugs (sodium valproate, phenobarbiton and Sabril). Normal epilepsy (if there is such a thing) can be managed quite well with medication and even more severe types like the above can be lessen quite a bit.

I would suggest that in addition to a gp you would look at brainwave ireland which has a wealth of material on the subject.

CrazySka

i suffer from this myself, it only came on three years ago though and hasnt affected me majorly (only three siezures in total) but my aunt suffered quite badly with it when she was younger as did a friend, it did improve over time though and she now hasnt had any problems for a long time, i did some checking into it when i first got it and it does seem to generally ease with age. with the correct medication it should be brought under control and the longer you go without a siezure the less likely it seems to be that you will get another.
Im sure that there are other issues especially on the children thing such as driving and the chance of it happening around the kids but you cant let things like this affect your life anymore than they have to.

LegacyUser

Ray, John, thanks for sharing that.

Ray, what age / how young is your daughter? How frequent is it, and how is she coping with the medicines?

John, a very close friend of mine is in a similar situation like yourself - he has 4 seizures over all, in last 5 years or so – and with the new laws (can drive if you haven’t had a seizure in 12 months) he has applied for his driving license too. He does complain the medicine making him drowsy, but he is a very positive person, and he is combating it with, among other things, proper diet etc.

My girlfriend though had seizures since she was ten, which effected her teenage years pretty badly (seizures everyday etc), I was told, and since then it had improved to just one seizure a year up until a few years ago. Now I am afraid its getting worse (we are charting it now, a simple excel sheet and graph) and seizures are getting more frequent since April this year – she is healthier all the same – we both quit drinking, eating very healthy, she looks much better and she is doing great at work, coping with long hours and even fitting in evening classes after work! With plans of a family and stuff around the corner, we are ever so slightly concerned!

Thanks again for all the comments. Please do add if you yourself or know anyone who has epilepsy and how you/they are coping with it. Also it would be great to hear from someone who considered/undergone surgery too!

Regards!

Victor

A friend of mine suffered a head injury as a child and needed daily medication, annual check-ups and for the first few years annual X-rays.

He lived what seemed like a perfectly normal life up to the point where, one evening he collapsed and died in his bedroom.

Otherwise, I have only come across one person having an epileptic seizure and I understand statisticly the general population averages seeing only one such event in their lifetime. I presume you have been brought up to speed on how to react when she does have a seizure?

LegacyUser

Thanks Victor, Yes, she did tell me how to react (and how not to overreact) to a seizure. Surprisingly, she has had at least a dozen seizures during the last 18 months or so that we have been together, and I was never around when she had one! So, even though I know what to expect, I am yet to see it for real!

Nevyn

My Dad has pretty chronic epilepsy, I grew up with it , just part of who he is.
I do remember being told about it and being given a book when I was ten that
explain about what happens and what you should do.

Stress, not enough of sleep, not eating regularly and not taking meds on time
can put a persons system under duress and sezerures can be triggered more often under those circumstances.

My dad didnt have many grand mal seziures but he had a lot of partials and
spasms. As far as I can tell surgey is not always that straight forward and there
are not a lot of garentees. Hell at one stage they wanted to try a labotmny
on my Dad ffs.

With the cocktail in meds this can also have a lot of sideeffects on your gf
system, changes in meds can be stressful in it's self but there are a lot of
new meds out there it is just a case of trying them until the right regime
is found that works and it not to hard on her system.

As for the effect on her system if she was to considering having children that is something she would have to sit with her Dr or the consultant she is under and disscuss.

A lot more people have epilepsy then most people realise and the people at
brainwave have some wonderfull rescources.

Rev Hellfire

My daughter is two, as far as the epilepsy goes it pretty severe (west syndrome). Her seizures are at the moment mostly under control, in that there are no major ones, but daily ones would not be uncommon.

tbh she's pretty much at the far end of the scale and is not really representive of your girlfriend.

embee

Hi BoneO,

I'm epileptic myself, I was diagnosed when I was 11.

I'm 24 now, almost 25 and medication has the seizures more or less under control.

Also, I am 30 weeks pregnant. The only "risk" factors involved with epilepsy is that taken anti-convulsants can affect the absorption of folic acid in early pregnancy. A doctor will be able to advise your partner on how important it is for her to take extra doses of folic acid as an epileptic to prevent neural tube defects.

Epileptic women run a slightly higher risk of having babies born with abnormalities, like cleft lip & palate, congenital heart defects and behavioural problems for the child in later life, but it is only a minutely higher risk than a non-epileptic mum. Generally speaking though, her pregnancy will be classed as "high risk" because of the epilepsy, and because of this she will be more closely monitored than a low risk expectant mum. My hospital gave me an extra scan where they checked babys heart, lungs, brain and I also had a 3D scan, which ruled out cleft lip and palate. Most epileptic mums to be have perfectly normal pregnancies though, so as long as she sees her doctor before conception and in early pregnancy, she should be fine.

Hope this helps. If you need any more info, feel free to send me a pm.

LegacyUser

Fantastic post embee - thats a lot of information there! Thank you so much!

My gf is already taking folic acid every morning (5mg, I think). We are not considering a baby just yet, but its definitely in the 'TODO' list.

Meanwhile, we have been keeping a record of the number of warnings and seizures since April (new medicine), and the ms excel graph is a great way to explain everything to the doc during quick visits. The graph was pretty calm during the first three or so months, and the later part of the graph is pretty rough. With the graph, Doctor could really visualize the increase in warnings and seizures, she was immediately referred to another Neurologist (more experienced, we ere told). I am not aware of any other tools/software out there that does something like this - anyone? There must be one out there, if not I can always write one, I do that for a living!

And Congratulations in advance, and best wishes for both yourself and the baby. Hope everything goes brilliant for you!

GusherING

I've suffered from epilepsy too. I had my first fit when I was 3 years old (3 days before Ireland beat England in Stuttgart, my dad always tells me!!). I had fits about once a month after that for about 6 months. I was put on medication, and I had ECG's. Since I've been 9 or 10, I've been off medication and haven't had a fit since I was 3. I'm now approaching 21 and I feel like my epilepsy is something that belongs way back in my past. I don't think it hinders my lifestyle much, although I dislike talking about it to most people (indeed, I'm wondering should I be posting this), and it is always something in the back of my mind.

These days, I hate telling people during job interviews, I felt wary about telling my insurance company for car insurance (but I did), and it also means I can't go bungee jumping or scuba diving as well (which is a bit of a shame):o . I also have some concerns about how likely it is for my children to inherit it, although I am aware of the lack of genetic linkage and there is no history in my family. Thinking about what my parents went through with me, I wonder could I do the same, if my child had epilepsy.

I don't wish to come across as all doom and gloom by the way. I'm sure the medical practices and knowledge way surpasses the amount known in the mid/late 1980's. And anyway, you just gotta move on and face it. Hope it all goes well for you embee, and BoneO, I hope my story might be of some interest to you.;)