My Mum just had another seizure, first one was in February. They didn't start her on medication then in case was a one off.
I've rung out of hours doctors who want her to go to hospital, she has already stated in an advanced care plan she doesn't want to go hospital and has A DNR. I think they are going to try to get me to admit her when they come to visit.
It is the weekend so nothing is going to happen anyway! We see the neurologist too in two weeks for 6 month check.. guess I'm just looking for some support here off you lovely people.
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Spiralsparkle
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Aww Spiral Sparkle I'm so sorry to read this, how is your mum now? It must have been so frightening for both of you? I'd be more inclined to keep your mum at home as what did they actually do in hospital last time? Very difficult to decide! Much love and thinking of you both x
They did nothing really apart from scan that showed more or brain had deteriorated. Out of hours doc been now and said obs are normal and to keep a close eye on her in case she needs to be admitted. No signs of infection yet. Last time she had a temperature after going into hospital but they never found out why.
She doesn't want to go in so will keep her home hopefully. Will ring Parkinson's nurse Monday to notify them.
My mum started having seizures about 2 months ago, she was put on anti-seizure medicine immediately. It was really distressing to see her having them, but thank God they are now controlled. Hope they can help your Mum quickly.
I am so sorry to hear that, Spiralsparkle. You will both feel exhausted by it all. Go with your gut feeling as to whether you think your mum will be safer in hospital, or more comfortable at home.
How is she now? If medication is helpful, she may have a better quality of life with it. I hope she is still able to communicate with you, and hold your hand consciously.
Am sending a big hug and prayers your way. Hang in there!
She will definitely be more comfortable at home. Out of hours doc been now and obs all normal. Got to keep an eye on her for signs of infection but all ok at moment.
She hates that hospital so much.
She is extremely exhausted but talking as she did before today's seizure. She is very upset though as feels so rough. Keeps saying she has had enough now and can't take anymore.
Pleased she is able to talk to you. Yes, it is a horrid space to be in. Try and 'cocoon ' yourselves in your own 'happy space' and enjoy doing/eating a little of what you enjoy! Music can be very soothing and help her (and you) to relax
and rest. We used to end the day with a bit of sneaky chocolate shared together.
I play relaxation music every night. She didn't want it on this morning as head hurt too bad but is now is listening to some. She doesn't want to drink though as been sick so that is current battle
Hi Jillann! Pleased to see you are keeping in touch. We haven't managed to organise that PARTY yet! Have my bottle open in case we can share a glass tonight!
I am so sorry to hear about your mum. My hubby has said a definite NO to hospital and has a DNR. It is a very difficult situation and I really feel for you. Hospitals are not the best places to be in and I am sure you would give your mum excellent care. Jx
It really is her biggest fear to die in hospital after two awful admissions. I'm hoping she won't need to go in so far no need as obs been checked and ok. Got to keep a close eye on her x
I too have carers but the emotional stress and worry doesn't go away. My hubby has been asleep since 8pm last night and is still asleep.....continual worry. Jx
Yes bed bound and non-communicative plus everything else and in advanced stages of PSP. Please don't be sorry we all get so consumed with our loved ones and there are days when I struggle. Take care. Jx
Massive hugs to you I have read some of your posts since this morning. Hope he is as comfortable as can be. Mum said other week I'm not scared of dying but want to be comfortable.
Hi SS, Well I have epilepsy and one thing I have never come across is that siezures, in and of themselves, shorten ones lifespan. However, she may have more of a serious underlying cause than epilepsy. Two things that come into mind is the obvious brain tumor , but it may also be a new med.....some new meds can wait 2 or 3 months to rear all their ugly negative symptoms. Then therre is a new food in her diet , perhaps? and then theier may be injury to the spinal cord or the brain itself.....I dont know if seizures can exasurbate condition your mom already has and I am sure there are other things that cause szrs.....for me it was 'luck' of the draw. I am on a new drug Lamictal; combined with my old drug Tegretol, it seems to be helping alot....you might ask the dr about that one....if your mom wants to that is....
...one thing I might do is get her a mouth guard so she doesnt bite her tongue or break a tooth...she can't swallow her toungue.....but if you can roll her on her side so that she doesn't choke on saliva too much....I'm sorry this is such a god-awful response but it's what I know.....
I'm so sorry, hospitals are a complete nightmare for PSP sufferers and their carers, keep your dear Mum at home with you if you can, I personally found them a waste of time and very stressful, no one understands the disease unfortunately 😔
She has stayed at home. Her temperature was high yesterday but seems to settled today. She had a temperature after her first seizure and they never found the cause. Out of hours docs rang to check a few times yesterday as they were worried about sepsis but so far she seems to be ok on that score. She hasn't slept though since it happened apart from 10 minutes so we are both rather exhausted!
She is better than yesterday, thank you. Very confused though about it all as has no recollection of yesterday and wondering why she is in bed and feeling so pants bless her. Hoping she manages to sleep some today as she has only had 10 minutes since yesterday morning. Is your Dad still in hospital ?
Oh poor thing, I hope she gets some rest today. Yes dad is still in - and my mum too now! She had a heart attack yesterday. So this changes everything about dad coming home. Can't believe it! What next?! At least they're both on the same ward!
My husband's first seizure was also in Feb. He spent a week in the hospital having a variety of tests. They first determined he had a stroke, then it was that the brain was no longer able to control the autonomic functions, then seizures. While there he had several more seizures and we ended the week with the medical team divided about what exactly was going on and why. His regular neurologist is adamant that his seizures are caused by PSP. (He was diagnosed in April 2016).
He was started on medication immediately, but it took awhile to get the dosage regulated. By the third month he started having some significant personality changes so they changed his medication to Vonergran. No obvious side effects but he's still occasionally seizing, so we're working on getting the dosage right.
The seizures exhaust him and seem to worsen his PSP symptoms. He has had two this week. With one seizure he fell and broke three ribs. He too has a DNR and no desire to return to the hospital.
Sorry to hear husband is having multiple seizures and not controlled yet. I don't think they can determine an exact cause with these conditions by sounds of it. As we never got an answer . Luckily yesterday was only the 2nd occurrance so will have to see if they want to start meds for it but Mum doesn't want to. Also lucky they both have happened early morning in bed so no severe injuries. It certainly does take it out of them the energy and trauma.
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Another wonderful weekend with PSP!
Another uti ! 
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