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qestion re; epilepsy - Page 3 - Carers UK Forum

qestion re; epilepsy

For issues related to specific conditions and disabilities.
439 posts
I have found if he does try to stay awake, he has more, and the after effects get steadily worse the more he has.
Hi there, you're right with this one as lack of sleep's another major trigger for a lot of people.
Sometimes changes in diet can effect things too. My husband was always worse after eating chinese food -I told the Specialist E-nurse and she said that's common it's the MSG (mono sodium glut.) that's the trigger there! Image
Hang on in there!
Marie x
Marie - thanks for that, I had no clue that food could be a trigger also.

Hubs often has an absence after a meal, yesterday it was a roast dinner, we carefully removed the tray from his lap before waking him as often he will jump when brought round, resulting in whatever he is holding flying across the room Image
But, then again, he often misses the evening meal as he has had absences and had to go to bed early.

Looking through the diary, to me it is more sleep related (or lack of), - Hubs has had tests for Bowel Cancer recently, if that isn't a stresser I don't know what is, but he didn't have absences on the days he was visiting the hospital.

The headache is a real worry at the moment as well, always in the same place,on the left side and he says it feels like he's been kicked in the head with a size 10 steel toe cap, this always preceeds or follows an absence.

*sigh* I sometimes feel like I'm going round in circles x
Hi Sturdygirl,

I have noticed this holiday that S often has one or more during breakfast.

Lack of sleep and stress definitely makes S have more.

IBS is also linked to stress; stress can make it worse and the symptoms are stressful. I would think that going out and knowing you might have an absence at anytime is stress inducing. OH must feel (as must you) that this all seems never ending and that is stressful too.

The other thing to consider it the timings of meds and when the meds are lowest in hubby's body and when they are at peak/optimum level.

Have you read up on NSAIDs (non epileptic seizures) more to reassure yourself that you and hubby are follwoing the right course?

Hubby has complex partial seizures and does the usual things like staring into space, blinking every couple of seconds and then rubbing his nose every few seconds. He also gets a sudden spasm in his hand or face and this is often the start of a general tonic/clonic seizure. Headaches are typical of epilepsy and sleep is the only thing that helps - hubby just rolls over and sleeps and cant be woken. After a few bad seizures he has been known to sleep for several days Image

Lake of sleep, change of routine, change in diet, workmen in doing anything in the house, worry about me being unwell, stress about getting to any appointments. These will all set off a seizure Image As will periods of relaxation Image - so holidays are a favourite time for him to have a big one.

Have you got a definite diagnosis yet sturdygirl?
Hi guys, my OH has NFLE - nocturnal frontal lobe epilepsy. Basically they're complex partials that generalise and lots of them. At the minute he has 10 - 15 seizures every day all during sleep. There's lots of aggressive focal movements so he's running around - jerking and banging into things and then the usual end results -vomit and urine. There's no chance of avoiding triggers here as it's sleep related and yes, we all gotta sleep! Image
We set up a direct payment so I can get some help and sleep a couple of nights a week and it's been the best thing we have ever done!

Have you guys any help? I think it's stressful to cope with long term, especially if there's a lot of seizure activity and all the time.
I know we waited way too long to sort out some help that's for sure - we were both practically on our knees and really struggling!
Marie x
Thanks for your input everyone.

Melly, I've read as much as I can, at first I really thought it was down to the meds, but the Neurologist said a definate no. Maybe they are stress and sleep related, I just can't seem to put my finger on a definate answer.

Crocus, the headache attacked again yesterday, Hubs slept the afternoon away, woke up, had an absence and went to bed.
Still no definite diagnosis yet, (2 years down the line Image ) Hubs is supposed to be seeing Neuro again in September but no appointment has come through yet, ( might just give them a phone today) last time he upped the dosage just to see if it makes a difference.
Has medication helped reduce the number of seizures for your Hubby?
And did your OH begin small and work his way up? Hubs began as just a stare into space, we thought he just had 'selective deafness' at first!

Marie, your OH's seizures sound quite scary, at least mine just stays put, the only thing we have to watch out for is a right hook when we wake him Image
The kids are great and help me out, we cope o.k. We have no other professional help apart from visits to Neurology, perhaps when a diagnosis is actually given we will have access to an Epilepsy Nurse (if that's the case) for advice and support.

Thanks for your help everyone, I know it's not a nice thing to deal with, but it's good to know I'm not alone
we also use direct payments and have done now for over 6 years.We use that to pay for extra support for my Lisa while i continue working.Our council have been really good but without them i'd have to give up work, but i know this isn't the case around the country with some councils being very unhelpful.
Lisa has recently come out of hospital in Liverpool where she had invasive recordings done and they made a new discovery in that her seizure activity is all in her frontal lobe simular to your OH maybe? the neuro's now believe her epilepsy (abnormal activity) has always been there, probably since birth.
Sturdygirl, good luck for your neuro appointment next month,my Lisa also has many absences, in September show your frustration with your neuro (without loosing it too much) it's the only way to get them to listen sometimes.When my Lisa was in London we'd come to the 'end of the road' with options but i asked quite firmly for her to be refferred to Liverpool, i can say that's the best thing i ever did, a new team of neuro's and neurosurgeons doing a full reinvestigation as if she's a new case.Tests so far have revealed more about Lisa epilepsy in 6 months then London did over 25 years, although technology has moved on alot to be fair.
Anyway good Luck....sorry for the rambling
Hi, sturdygirl.

In answer to your enquires - hubby has temporal lobe partial complex seizures that within a minute cascade to a generalised tonic/clonic seizure that lasts about 3 or 4 mins and turns his lips blue Image . They are the result of a road traffic accident giving damage to the brain. The scar in his brain seems to be spreading, although we are waiting for the results of a recent MRI scan which will confirm whether or not it really is. They think it is as the seizures, his balance and memory are getting worse.

The meds definitely improve the seizures, At one stage he was having partial seizures every 6 seconds Image although I must add that he is now on a whole cocktail of anti-convulsants and they think that one of them is beginning to cause liver damage - which is a shame as he is actually quite well controlled at the moment. Image At another point he would vomit as he came out of the seizure, but a change of meds sorted that out.

The kids have grown up with it and I tried to go for the "what a nuisance" tack rather than suggest it was scary, so we got into the routine of pushing things away while he was fitting and then getting a pillow and blanket as we couldnt move him afterwards and he simply fell asleep where he was. We dont get any other professional help either. We have access to an epilepsy nurse, but this is more of a "phone for advice" service and Ive never actually used it.

Sorry to ramble on like this, but I hope that is some help Image
Hi guys, My OH has a lesion across the frontal and temporal lobes and that's the focal point for all the seizure activity. It's kinda scary but you get used to it.
He's also on AED poly therapy and tried and discarded all the other available drugs over the years - we have no more left to try...again!
If he takes his night meds even a little later than usual his seizure activity escalates even more to every 20 minutes or so - hard on us both! There's loads of different and kinda crazy seizure activity patterns and it's pretty challenging we have the 'blue' seizures too.
The scariest, for me, is the vomit seizures - he's chokes a lot and had aspiration pneumonia (nightmare!)
I guess that's why we have a DP running and employ a family member to provide much needed cover to let me sleep a couple of nights a week!

You are right in your tack crocus, our kids grew up around all the seizure craziness and coped! They're both in their 20's now - I guess we just found a way I suppose! Image

Support here and on the NSE forum during tough times, has kept me sane!
Marie x
Sturdygirl, I didn't mean NSAIDS - durr!! I meant NEAD.

http://www.epilepsysociety.org.uk/About ... icseizures

I mentioned it, because I wondered if S had this.

439 posts