lots of seizures!

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cookiemonster

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Hi everyone, I'm a new member with a fair bit of experience with the impact of epilepsy. My daughter is 17 and suffers with frontal lobe refractory epilepsy. She is a non surgical candidate who has had lots of disappointing and very often disastrous AED trials.
She has on average 10-15 generalised seizures per day currently and also on average once every 5-6 six weeks has an emergency hospital admission to abort prolonged seizures/status epilepticus. Although she was diagnosed at age 8, the last 3 years have been very tricky and resulted in her spending 8 months in hospital and six months in a wheelchair (no reason found)!
I am wondering if there are any other members experiencing large numbers of generalised seizures on a daily basis? We have yet to find a family in Ireland who is similar to her. The impact on life is massive, the support sometimes very lacking!
Thanks :)
 
cookiemonster

You are very welcome to C.W.E. you will get some good advice and meet good people as well. Ireland is a funny place when it comes to epilepsy, so meeting a family in a similar situation in Ireland is like pulling teeth. Yes there are others here who experience a lot of different seizures. Nice to meet you.
 
Hello and nice to meet you! I know you'll get a lot of support here, I sure have.

When I was diagnosed with epilepsy, at age 27, I was also a non surgical candidate. I wasn't having nearly the number of seizures that your daughter is having but I was having probably about 20 or 30 a month. All mostly simple and partial seizures, hardly ever having a TC.

My very first seizure I had was the only time I went into status epilepticus. I was put into a coma for over 4 weeks before they felt it was ok to bring me out of it. I had been in and out of the hospital several times after that while having seizures before too.

I was taking a ton of different epilepsy meds but they couldn't find anything that was really helping at all. My neuro thought that a VNS (vagus nerve stimulator) would help and it has. I'm still taking meds along with it but I'm down to on average about 7 seizures a month and they aren't anything like they were before I got the VNS.
 
Hi Valeriedl

Thanks for your message, that actually does help! :)
We are also considering VNS and although the neurologist says the results are disappointing, from what I've read, it seems to be worthwhile.
That is scary that they put you into coma for 4 wks! My daughter's prolonged seizures tend to resolve with iv treatment, but not with buccal midozalam.
I suppose the reason that we were looking for a situation similar to my daughter's is that there are so many challenges that she and I face that are not included in the supportive websites/literature.
Whilst we understand the positive messages that we generally read associated with epilepsy, we feel that for chronic epilepsy (10/15 tonic clonic seizures per day) there is little advice and life is a challenging series of road blocks and stop signs! Even sc
Schools who say 'oh epilepsy, we have experience of that, no problem'. Then, when she actually attends school, she has clusters of seizures, tiredness, dizziness, nausea, gait issues and on and on. In this situation I may as well sit in the car park as the phone call to come and get her happens quickly. No matter how calmly they are given reassurance, they are just not used to seeing multiple seizures on a daily basis and my experience has been, they don't cope well and exclude her. Sometimes hard to remain upbeat, you know? :)
 
Hi Cookiemonster! I am glad you found your way to CWE. I read your post with concern and admiration for your stamina and faithfulness. Personally I have zero knowledge of anything so serious as what is facing you and your daughter -- but at least I am saying so [unlike the school administrators.] But many people who use this site DO have this kind of knowledge and have hard won understanding that could be of real use to you. Over the long haul I think you may find much practical understanding as well as heart understanding -- I hope so.

I hope you keep posting. I will be sure to read them [even if I don't say anything.]
 
Hi cookiemonster - welcome to CWE :)

I was diagnosed with temporal lobe epilepsy when I was 21 and have a range of tonic-clonic, and simple and complex seizures. My first seizure was the first and only time I went status, and was in a coma for 2 months afterwards apparently caused by encephalitis- though no proof for this could be found, it just fit the symptoms.

I hear what you're saying about the lack of support, and can only imagine how difficult it has been for you and your daughter without a good support network. The care and treatment I've received from the NHS has been a joke. But there are a few epilepsy and disability support charities out there- but I'm not sure what the situation regarding those is like over in Ireland.

The best place I've had for information and encouragement is here- I've learnt much more about my condition than I ever have from a medical professional, and the support from this small community of active members is fantastic!
 
Hi cookiemonster, welcome to CWE!

I don't know whether this might apply to your daughter's situation, but it could be that there's a particular genetic issue at play that makes her vulnerable to the daily seizures. In one case (link below) it turned out that the person was unable to process calcium the way most people do, and taking calcium channel blockers reduced her seizures by a significant amount.

http://www.cureepilepsy.org/news/story.asp?id=97
 
lots of seizures

Thanks for that. It is so interesting and I am always trying to get the neurologists to think outside the box with my daughter as she doesn't respond well to text book treatments.
Food for thought certainly!
 
cookiemonster said:
Hi everyone, I'm a new member with a fair bit of experience with the impact of epilepsy. My daughter is 17 and suffers with frontal lobe refractory epilepsy. She is a non surgical candidate who has had lots of disappointing and very often disastrous AED trials.
She has on average 10-15 generalised seizures per day currently and also on average once every 5-6 six weeks has an emergency hospital admission to abort prolonged seizures/status epilepticus. Although she was diagnosed at age 8, the last 3 years have been very tricky and resulted in her spending 8 months in hospital and six months in a wheelchair (no reason found)!
I am wondering if there are any other members experiencing large numbers of generalised seizures on a daily basis? We have yet to find a family in Ireland who is similar to her. The impact on life is massive, the support sometimes very lacking!
Thanks :)
Click to expand...
Hello cokiemonster,
Welcome to the forum and sorry to hear about your daughter.

I've suffered with Temporal-lobe epilepsy since I was 15 they kicked off as being autisms, where I was either quiet or violent.
When I reached 18 grandmal seizures occurred also...then I was having 18 or more of seizures daily, hospital became my next best friend besides coma's and my heart stopping and now they're still hard to control but your daughter being in a wheelchair for 8mths i'd ask if Todds-paraylsis (Todd's Palsy) is present...mine occurred after two strokes at 24 and when you have a seizure it leaves you paraylised, as I have that for life now.

You may find the link below very helpful on (Todds Palsy) regarding info and seizures :)

http://www.disabled-world.com/health/neurology/todds-paralysis.php
 
cookiemonster said:
We are also considering VNS and although the neurologist says the results are disappointing, from what I've read, it seems to be worthwhile.
Click to expand...

I was unable to have surgery so that's why my neuro suggested the VNS. It works great for some people and others have problems with it. It's not a 100% guarantee that your seizures are going to stop and you won't be taking medicine anymore.

I've had my VNS for about 7 years and as I said in my post I am still taking meds and having seizures. Before I got the VNS I was having at least 20 seizures a month. They were all complex partials with a few simple complex partials thrown in. Now I'm down to on average 7 seizures a month. This is simple and complex partials added together.

It does come with side effects, just as medicine does. Some of the ones that I have are shortness of breath, coughing and I had a slight voice change. There are many threads on here talking about it.

It will take a while to get the settings right so it's not like once you have it put in it's going to start working right away.

I don't if you've visited their web site but it's http://us.cyberonics.com/

I guess you could say it's sort of like medicine. You don't know if it's going to work until you try it. If it's not working you can have it turned off but it can not be removed. The only real problem with that is since you will have metal in your body you will be unable to have an MRI.
 
The VNS worked for while for me than slowly stopped working. I'm happy for anyone that's having good control with the VNS I'm refractory and I've never had any luck getting under control for more than a few months at a time.
 
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