Since our holiday in Devon

[DenB]

Whilst we were on holiday in Devon a couple of weeks ago, my husband experienced a few seizures. Something that he hasn't had before and since then he has been waking in the night, mostly twice a night, with uncontrollable myoclonus jerking. I describe it as that because I'm not sure that they are seizures as he seems concious, not like before on our holiday when his eyes were rolling from side to side and I couldn't rouse him.

The episodes during the night can last up to 40 minutes, which can be very distressing!

All I can do is to hold my husband's hands to stop him from hitting himself in the face. All his limbs are uncontrollably jerking, his eyes open wide, starring, probably wondering what was going on!

I talk to him, trying to calm him and eventually the jerks subside and he normally can go back to sleep until the next one!

My GP has told me to increase the dose of Clonaepam that I give my husband at night to see if it can make a difference.

And that is where we are at the moment.

MY husband is in the very late stages of CBD and I hadn't expect these seizures or whatever they are at this late stage but as I said in my last post, this may be our new normal.

I hate having to watch my husband go through these episodes and not be able to stop them for him. Maybe the Clonazepam will work, maybe the jerking will stop after a bit, or maybe the GP will think of something else to try.

Has anyone else have this happen to someone who they care for with CBD or PSP and what medication if any has worked?

Any help or suggestions would be great.

Love to you all

Denise x

[Hidden]

Kevin_1 had a post on this topic two weeks ago it is here:

healthunlocked.com/psp/post....

[DenB in reply to Hidden]

Thanks jeff166.

The only difference, is that I don't think my husband is in any pain at all, when the jerking takes place. Distressed though!

I know that Myoclonic jerks are part of CBD but I just wonder if the seizures he had on holiday, have started what is happening to him during the night times now.

As before the seizures, he hadn't experienced anything like this!

I noticed someone else' GP suggested upping the dose of Clonazepam, hope this might make a difference.

D X

[Hidden in reply to DenB]

Everyone experiences these diseases differently. Clonazepam is worth a try. Kevin thought Liz was having seizures for sometime before they figured out it was muscle spasms. Just a thought to keep in mind if the drug doesn’t work. There were other medications mentioned in the responses to his post.

[Kevin_1]

Hi Denise

Yes, they are horrid.

We now think Liz is suferring from some sort of muscle cramp rather than epilecptic fits. Liz has signalled that, "it is not in her head."

She says they are painful. She is i late stage and these just started out of the blue. They are occasional. Seems to be about twice a month.

She is fiven intramuscular Medazolan as soon as she has a n episode. It is a benzodiazapine which helps with both muscle cramopin and fits.

I hop there is something useful to you in this.

Warmly

Kevin

[DenB in reply to Kevin_1]

Hi Kevin, thanks so much for your reply.

I'm not sure that Roy's episodes of jerking are muscular. He doesn't seem to be in pain, as such, not unless he hits himself in the face or bangs his feet on the end of the bed and they are not shaking but definite violent. jerks.

He doesn't seem to have any of this during the day, only when he is in bed, either early hours of the morning, or just before he is due to wake.

He does have sporadic Myoclonic jerks during daytime hours which he more or less has always had.

Last night he only woke once with the jerking, although my body clock has already been set I think, as I was awake at 2.00am expecting to be woken!

Will be in contact with GP with update tomorrow and trying to get hold of Consultant Neurologist, whom we haven't actually seen since Nov 2017.

We mutually agreed to stop going to see her because of no benefits to us.

Anyway, I just need something for Roy to help with this, as you know it can be quite distressing.

I am writing down all the medication that everyone on here has suggested and will give to one doctor or another to see what they suggest.

Many thanks

Take care

Denise X

[Kevin_1 in reply to DenB]

Hi Denise

Yes, it sounds different to Liz's episodes. I hope you find something which works.

Looking forward to hearing.

Best of luck.

Wsamly

Kevin

[dollydott]

Hi Denise

I'm not sure whether mum had some form of seizure in the night or not.

She usually sleeps soundly and doesn't move but a few mornings ago I found her with her head off her pillows, her legs were up on the wall and she had a scrape down her nose. She couldn't tell me what had happened but it was very strange. Since then I've tucked the duvet under her arms in the hope that she feels more secure . I have witnessed sudden jerky movements lately when she is just sat quietly is that what you mean by myclonic jerks ?

Its all a worry isn't it? I hope your gp can prescribe something to help your hubby. It must be very distressing for him and you to witness.

Love to you both

Lynda 😊😊