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Help needed. PLEASE. - Carers UK Forum

Help needed. PLEASE.

For issues related to specific conditions and disabilities.
Not sure if anyone here can help but, I really need some help.

My OH has had another BAD day. These days are getting more frequent and the are frightening him and scareing me witless, not to mention the extra dose of worry.

After his usual - but not enough - 4 hours of sleep during the night, this morning at 10:30 he started with, what he calls - ants crawling - with shakes, mini localised convulsions and a severe headache. It is now 20:47 and he has had 3 GM's (TC's) and is still shaking etc.

To date it has been nearly 20 months since he last saw a neuro and we are still waiting to get into the E clinic.

Can anyone tell me if this is normal, if it sounds like his E getting worse or if he is becoming used to his meds.

He had has these bouts before but now he gets 2 or 3 a month.

I'm not sure what to do or where to turn.

Any help, advice or information would be welcomed.

Many thanks

Lydia. (Greywolf)
Under the circumstances I'd call whatever night service your GP has on offer for advice. If the episodes are getting worse - that is, changed in nature and frequency - then you need to get it on record to push for a trip to the consultant.

If the episodes are so bad that it merits a call to the emergency services, the on call doctor will deal with that and if necessary will certainly get your OH in more quickly. Which will get the consultant more quickly, too.

All I can suggest, Lydia. Stay strong.
Hi Lydia, do you post on the NSE forum?
Just wondered as someone was posting with a similar issue there today.

I do post there too!

When we had major problems, any seizure activity, that is more than usual, we were advised to get the Doctors on call out.
More often than not they would try and get OH to agree to go into hospital!

I know sometimes they can't really do much with E in the local General Hospital but if he's admitted with neurological problems/seizure activity, they WILL speak to a Neurologist for advice on how to treat him!

That's what happened here!
OH had been awaiting a referral to a Neuro for some months, he had a massive increase in activity due to an infection and was admitted with STATUS.

He was in for 3 weeks and saw a Neuro each week he was there!

We have been where you are, this last year and honestly, if you are worried at all and the activity is getting out of hand, scary or hard to cope with, phone and get an ambulance. Image
who knows there may be an underlying cause for increased seizure activity.

In OH's case, everyone kept saying wait to see a Neuro but in the end he had an infection running rampant for months and would always have needed hospital care to treat that!!

In hindsight, we should have gone to hospital a lot earlier than we did, looking back it was a mistake to listen to others and sit waiting for a Neuro!

I know it's not easy, OH would not agree to go into hospital initially as he was wary of uncontrolled E in a ward situation.
You know how it is - everyone staring and no privacy.
In the end he had no choice, he was too weak to refuse to go. Image

Final point!
We got Epilepsy Scotland to deal with our local hospital to ensure if he has to be admitted again he will go in a side room, the ward situation did NOT work at all.

Don't be afraid to stand your ground, if it comes to it!

I hope this helps a little,
God bless,
marie x
Hi Marie.

Yes I posted on NSE & on carers org. Needed some help &/or advice. Will try to get my OH to agree to go in to hospital. If not will get doc to come out on call out.

Thanks for advice.
Hi, I saw from a psot elsewhere your OH ended up in hospital.

How are things now?

I hope they're settling a bit. Image

marie x
Thankfully, the clobazam seems to be working. He's settled down a lot, but still feels a bit wierd, and has slept for 13 hours, which will help him a lot. Image

Thanks for all the help and support.
No probs, I'm just glad you're both ok. Image
I know it can be very stressful when seizure activity takes a sudden hike!

marie x
Nearly a week later and things are not getting much better. Daily shakes and jerks, daily ants. At least the big seizures have calmed down. At least till today, a cluster of 5 having just occured - but a normal cluster (well as normal as they get).

I'm hoping to get more than 3 hours sleep tonight, but we'll see. Still waiting for clinic appointment.

THANK YOU ALL for the help and advice and for being there. Image
Just to say a GREAT BIG THANK YOU to Marie for the advice on getting an appointment. I recieved an emailed appointment for 30th. It seems as if threats to go to the MP were more than they wanted.

(((((BIG HUGS)))))

I'm glad you got your appointment!
Keep a seizure diary upto date until you go as when it comes to Neuro's the Diary speaks volumes!
Best of luck,
marie x