Drop seizures!

[babylamb]

Hey I don't go on this much because I don't have a lot of time because I'm 18 doing my A Levels or sleeping!
I was diagnosed with Epilepsy in October, having had a range of seizures none which I remember! I can only remember 2 seizures I've had which my doctor said sounds like 'Atonic Seizures'. One happened late November when I was at school I was fine one minute and then BAM was on the floor dazed and confused but totally conscious! The second one of these happened on New Years Day. They're really, really weird! Does anybody here have them and can tell me anything? I see one of the best neuros in England (because I have dopa-responsive dystonia) so he's very busy. I'm new to this whole Epilepsy thing so I don't know a lot. I've recognised some patterns and triggers such as school stress and when I'm on my period. Anyway, does anyone have drop seizures here? If not I'd like to here a little story about your epilepsy and any triggers?

 

[Nakamova]

They sound pretty scary! Here are few threads from the archives where others have posted about their drop seizures.

http://www.coping-with-epilepsy.com/forums/f27/atonic-aka-drop-attack-seizures-atonic-epilepsy-5030/
http://www.coping-with-epilepsy.com/forums/f23/drop-seizures-no-warnings-anybody-17316/

 

[JaneC]

Hi Babylamb, welcome! Can't help with the drop seizures but my daughter is around the same age as you, she's just coming up for 17. She was diagnosed with generalised epilepsy when she had her first tonic-clonic a few days before her 12th birthday. She had no seizures for a long time but began having simple partials and absences in the spring and started taking medication (lamotrigine in the summer). Like you she's busy with exams (we're in Scotland) and also likes to sleep a lot lol.

In fact, lack of sleep is her big trigger - the only epileptic activity she's had since starting the meds was some jerking after a series of parties over the festive season. Have you been prescribed meds? It's great that you have a good neuro, not always easy to come by xx

 

[babylamb]

I have partials and absences too, they're very annoying with school! I hope her medication is working and she gets on with her exams alright!

I was prescribed Epilim but then stopped taking it because it made me very sick and gave me a rash and my doctor said my body might not be able to hack anti-epileptic drugs and i should give them a rest and try again a few weeks later or see my neurologist. When on the Epilim though I had a seizure so not very good ! It worked for about 2 weeks. I have been on anti-depressants since I was 15 for having to cope an undiagnosed extremely rare neuromuscular brain condition not knowing i had it and it could be treated and parkinsons medication when I was 17! I occaisonally go through periods on muscle relaxants, painkillers and anti-inflammatory drugs for spinal problems.

Does she get the jerking from being tired? When I'm tired my hands make involuntary grabbing movements and my mouth twitches violently like I'm trying to smile it's very weird!

 

[JaneC]

Yes, Rosie gets the jerks when tired. I'm sorry you have so many things going on. Rosie has been struggling with depression off and on since her seizures came back but doesn't want to try medication - the only SSRI she could have at her age isn't great for people who have epilepsy anyway. She has been referred to the mental health service instead but doesn't see them till February.

I'm no expert on which meds are good for which types of epilepsy but I think you should speak to your neuro about possible alternatives. My friend's daughter took Epilim for a few years and didn't have a great experience of it. I'm not sure it's correct that if you can't take one AED, you'll struggle with them all - some work in different way from others.

Rosie hasn't had any probs with seizures at school since she started taking lamotrigine but she does feel it affects her concentration and I don't think she is doing as well this year, unfortunately. Her prelims start next week and we're worried how that will go. She dropped her dose a little but after the jerks in the last few weeks doesn't want to go ahead with the second small decrease her epilepsy nurse sanctioned.

It's really tough being a teenager with seizures, never mind the other things you have to cope with. Personally, I think you should try to see your neuro as soon as you can to see what he/she suggests xx

 

[babylamb]

Talking to someone and seeing if that can resolve the depression is way better than medication, especially if you know the reason for depression. With me there was no explanation for my depression and anxiety, I also had severe OCD which lead them to believe it was a chemical imbalance which is why I was put on an SSRI. Even though they are likely to mess with a persons seizure threshold they really help me and if I try ween off them I can't cope!

I'm hoping my neurologist will prescribe another anti-epileptic drug for me that will work. I've read some stories online after my experience on it lot of mixed reviews... I got sick, jaundice and a rash it was nasty!

I don't have any exams at the moment because I'm doing practical A Levels, but if I miss anything like an assessment I can get my expected grade without doing the assessment due to medical reasons. Have you talked with your daughters school about the effects of her epilepsy and concentration? Exam boards can take special considerations for people with epilepsy I think. When I was doing my GCSEs I didn't have epilepsy so I'm not too sure. It took a while for my school to understand my specific troubles but they're really helpful!!xx

 

[JaneC]

Hi Babylamb, poor you, you have so much to cope with. I'm a long-term SSRI user and tend to buy into the chemical imbalance theory because, no matter what else I've tried (psychiatrist, CBT, self-hypnosis act) I only really feel well when on antidepressants. I don't have to worry about seizures though.

I've had a big dilemma over Rosie and exams. She did really well in her standard grades last year and although that was before she started taking lamotrigine, I thought it would be hard to convince the exam board that she needs extra time. Unless her prelim results are out of this world and going to ask the school to request an assessment, especially as I have now heard of another pupil who is getting extra time when I can't quite understand why their condition merits it.

So, now half of me wants her to do well this week - and half of me doesn't :dontknow:

 

[heylena]

I have had atonic seizures since I was a child. It has only been recent that I have discovered that I have epilepsy (summer 2013), but am not on any medications for the seizures in hopes of controlling them naturally rather than depending on drugs to "fix me".

I am 24-years-old and they have progressed as I have gotten older (or the fact that I have had more stress and pressure in my life as I have gotten older - ie school, job). When I was little, I would become unconscious for a couple of seconds and wouldn't remember how I got on my bed and would only remember brushing my hair. I naively linked these "falls" to the idea that I would always fall safely. There was a break or I did not mention or dismissed minor "seizures" until high school - college, in which the seizures matured due to stress and school. As they matured, rather than "fainting falls", I would be conscious during the fall (knowing that I was falling), but I couldn't do anything about it except only had control over protecting my face (depending on the severity). At the time, I did not know what these "spells" were except "falls". My parents and doctors kept insisting it was because of my weight and thinness, that I wasn't eating enough, didn't have enough D vitamins etc.

It is relieving to know that there are others that are experience these "falls".

 

[Tez_20]

Talking to someone and seeing if that can resolve the depression is way better than medication, especially if you know the reason for depression. With me there was no explanation for my depression and anxiety, I also had severe OCD which lead them to believe it was a chemical imbalance which is why I was put on an SSRI. Even though they are likely to mess with a persons seizure threshold they really help me and if I try ween off them I can't cope!

I'm hoping my neurologist will prescribe another anti-epileptic drug for me that will work. I've read some stories online after my experience on it lot of mixed reviews... I got sick, jaundice and a rash it was nasty!

I don't have any exams at the moment because I'm doing practical A Levels, but if I miss anything like an assessment I can get my expected grade without doing the assessment due to medical reasons. Have you talked with your daughters school about the effects of her epilepsy and concentration? Exam boards can take special considerations for people with epilepsy I think. When I was doing my GCSEs I didn't have epilepsy so I'm not too sure. It took a while for my school to understand my specific troubles but they're really helpful!!xx

Hello babylamb,

Sorry to hear what your going through with your seizures and partial ones can become a nightmare at times...having them myself besides alot more but I hope you do well with your A levels with what your going through.

How you have depression and also OCD...I have the same and find the OCD at times proper mental torture and the both together will cause seizures more because of the extra mental stress.

If you can when doing things take a break and give your mind a slight rest as i've found this out over the years helps in a large way. :hugs:

 

[lindsayschu2]

There are very many options for epilepsy medications--I think to suggest you may not be able to take these drugs because Epilim didn't work for you and just take you off drugs entirely is not a good suggestion (my opinion). It sounds like your general dr is the one who took you off epilim and suggested giving meds a break? Most neurologists would not make this recommendation--they would switch you from Epilim to another medication at the same time rather than taking you off meds entirely. Can you give your neurologist a call even if you cannot get an appointment? You should probably not 'give meds a rest' as your doctor suggested if you are having active seizures. I hope you are feeling better soon!

 

[lindsayschu2]

I now see this is an old thread--I hate it when old threads pop back up and I give advice on them