Noises

[jopin]

Hi all,

Does anyone make a funny noise during seizures, sort of like uhh uhh, I used to look after a guy with Parkinson’s who made this noise, now I’m worried I have Parkinson’s, thanks

[DNE92 Moderator FND Hope UK]

I get daily seizures. The really severely painful ones I do make noises - I think it is my body trying to help tolerate the pain but I can’t shout or scream because the seizure won’t let me. Cheers Lou

[jopin in reply to DNE92]

Thanks for reply Louyse, sorry it’s only just come through, yes that’s what mine is like, it’s usually if I’m trying to move position or what I call a head banger seizure, heads just going back and forth really violently, I had what I call a toe curler one the other day, cramp from my toes all way up to my head, I let out a little scream and made to dog howl 😂 I can laugh now but it’s so painful

[DMA1664]

Yes, as per the other reply I have daily attacks. I do make noises but assume it's the air being pushed out when the seizures/spasms start. Also like Louyse says it's sometimes because they're really painful. The only thing I'd say is please try and have some faith in the neurologists you see. I to and still do sometimes wonder if my symptoms are early onset Parkinsons, MS or epilepsy. The way I see it now is that unless someone tells me otherwise I've not got anything like MS or Parkinsons and that's a bonus. Dave.

[jopin in reply to DMA1664]

Thank you for your reply, I love your positive thinking, I’ve not really got faith in my neuro as I said to him I think it’s a FND, he said I couldn’t possibly have it as I wouldn’t know I’d got it, 1 year later he diagnosed me, I do trust my GP which is good as he actually listens to what I’m telling him, I’m very aware of my body/symptoms so when I finally got a GP to listen I felt like I’d won the lotto, been referred back to neuro now as GP doesn’t want to alter any meds without the neuros consent, gone down to 3 diazepam a day and it’s not stopped the seizures but I’ve come round more quickly and less monged out than usual, I do now think it’s just my body vocalising as I’m trying to move around during a seizure, do you take any meds for the seizures?

[DMA1664]

The only thing I take following and sometimes during an attack is diazepam and a strong pain killer. I've had bad attacks where I'm having what looks like a seizure but my tongue twists and turns and neck goes into spasm, making it hard to breath, hence the diazepam during attacks. I refer to them as attacks as they're not seizures. Allegedly I don't suffer from epilepsy which is electricity in the brain so they're not seizures. I was diagnosed with Non Epileptic Attack Disorder in 2016. They're sometimes referred to pseudo seizures or psychogenic seizures. They can be a diagnosis on their own or fall under the ever widening label of FND. Dave.

[jopin in reply to DMA1664]

Yes I’ve seen that pseudo seizures, it makes it sound like you’re making it up...who’d make this up??? I have started getting dystonia attacks while having these seizures, my neck goes onto my shoulder or cramping, I was bad yesterday, topped my record and had 5, 2 left me totally paralysed for about 45 mins, I tried to talk and it sounded like I’d had a stroke, I can’t remember the name now but it’s like a phonic type of dystonia, I’m having to talk from my throat if that makes sense, I can’t pronounce the beginning of the word, I’ve had this a few times so just wait it out and speech goes back to normal after 40-60 mins, I’m thinking it is probably just part of FND my husband thinks I could have Lewy body dementia as I’ve been hallucinating/hearing noises that aren’t there and being really forgetful, I think it’s just sleep related but going to ask to be tested next time I’m at neuro and hopefully be diagnosed for these seizures/attacks, can I ask how long you have been having these and do you get a remission from them? It’s driving me crazy I’d rather be sedated than go through this, I’ve got 5 young kids so I’d rather them see me as if I’m asleep/resting than having seizures/attacks. Jodie

[DMA1664 in reply to jopin]

It's horrible isn't it. I suffer with pretty much all of the same - the fits, the eye droop, speech problems etc. etc. The list goes on and on. When it's bad I suffer with wetting myself also. My Mrs and kids have seen it all so must be pretty awful for them. My youngest who's 6, is the most caring little thing ever and just holds me when I'm having attacks. We took the decision to seek help from his school because he wasn't dealing well with what he was seeing and they've arranged for some kiddy counselling/therapy for him specifically to help him manage having a long term ill/disabled parent. My oldest has gone the other way and found any excuse in the book to now avoid me and stay more at his mums/friends because he doesn't know how to handle it and won't allow us the offer of help. I suffered with these attacks following a rear end shunt in 2014 which triggered some work related PTSD from previous traumas I've seen. So it's been a while. There can be remission in regards to severity, but I suffer with the attacks to one degree or another daily. I've seen a neuro psychologist at Salford Royal in Manchester so should be starting a course of therapy specifically for managing this side of my problems next March. Shane that there aren't any local help groups for us to attend because we should share our stories face to face. Dave.

[jopin in reply to DMA1664]

It really is awful, My 3 and 2 year old have never known me any different so it’s not too bad for them but my 7 year old is really affected by it, she thinks I’m going to die all the time, I think she could do with some councilling to be honest, she’s really emotional around me. It affects all the family, my husband is on anti depressants and anxiety tablets over my health. I feel bad for being like this, always saying I’m sorry we will do it tomorrow, we never go places unless it’s on spur of moment because we don’t know what I’ll be like, it’s totally changed our lives and me. They say mines like PTSD still waiting to see psychologist about it. I’m in South Yorkshire so not too far from you, Ive not had a full good day for over a year now, I was really poorly from November to February last year and missed our annual New Year’s Eve party, I’m not missing this years, even if I’m laid on sofa in my pjs I’m making most of it, it’s not winning this year, hope you get some decent days over Christmas 🎄 Jodie

[DMA1664 in reply to jopin]

My Mrs has family in Doncaster. All the best to you and yours anyway and I hope that you can all get the help and have the fun you deserve over Christmas. Dave.

[jopin in reply to DMA1664]

I’m in Barnsley so not far off, ended up having a seizure last night, I thought I was doing well yesterday, woke up this morning and even my hair hurts 👊🏼 rest day today, hope you have a lovely Christmas too!

Jodie