Hi, I witnessed my mum having a seizure yesterday eve which is the most scary experience I have had. Mum was in bed, I had just administered her meds and went into the kitchen and heard the most awful screaming (mum’s speech is limited so hearing a noise like this was alarming). I ran into the bedroom and mum was contorting, foaming at the mouth, eyes rolling back into her head and making the most awful deep snorting noise. It was so scary. I called an ambulance and it arrived within 10 mins which was amazing. When the paramedics were with mum she had come out of it and then started vomiting, luckily they knew what they were doing. My dad has been unwell so I have been helping with mum’s care and it was lucky I was there. Due to mum’s advanced nature of CBD, it was decided by the ambulance staff in conjunction with the out of hours doctor that mum would stay at home. Mum’s vitals were ok, we accept there is nothing a hospital can do. Mum is now barely able to say a word, open her eyes or acknowledge. It’s just so upsetting and distressing. I am not sure why I am writing this other than for a bit of therapy, what I saw yesterday I can’t get out of my head as an image. If anyone happens to have experienced this it would be good to understand. We are now dreading the possibility of another which we suspect there will be. I hate you CBD.
CBD and Seizures: Hi, I witnessed my mum... - PSP Association
CBD and Seizures
bichonbear1
Has your mom already taking any medicine for seizure? Or is it the first time she had a seizure? And if so, what medicine has she been prescribed? Hope she is better now.
Please don't worry as it negatively affects caregiving dedication.
Hi, thank you for your message. Mum had a seizure in hospital back in late June but we didn’t witness it as a family, we arrived at the hospital to the bed closed off with curtains, the alarms going off and doctors/nurses surrounding her. We were told mum had a seizure, we thought the worst arriving to that scene. Following that mum was prescribed a med for seizures (valproate). Mum is still not in a great way, it’s taken its toll. The doctor and hospice at home nurses have been over today to see mum.
My husband was on valproate it didn't work. He was then prescribed Keppra. He also had increased clonazepam in a syringe driver. In the hospice he had midazolam and morphine added.
Thank you for sharing that, really useful to know.
No advice just sending support, I hate CBD too x
Thank you so much. It’s just the cruel and unpredictable nature of it. Thinking of you too x
I don’t have any advice as my husband isn’t at that stage yet, but sending support. CBD is truly awful!
Thank you so much for your message. Thinking of you and your husband.
Sending you hugs, As I know it is so hard watching your loved one deteriorate. Especially when some thing new occurs. 💖
Thank you for the hug. It is so heart breaking. It’s a cliche but the rollercoaster journey is immense ❤️
I’ve no advice on this specifically either but I’m sending you all lots of love and hugs - sounds very frightening and so traumatic too. xx
Thank you so much for your kind thoughts. I am trying to get the image out of my mind, it’s still stuck there. If it happens again, at least it won’t be a complete shock although I dread it does xx
I’m so sorry to hear about this. We never encountered seizures. But I guess that once the brain starts malfunctioning anything can happen. It’s highly likely that she has no awareness of what was happening and can’t recall it either. As others on here have said - keep on keeping on.
Thank you. The seizure has swiped mum completely, quite vacant now with a glazed look. Communication was already very minimal but barely there at all now. We’ll see what the next few days bring.
I had a reply for you yesterday- but it’s disappeared!
My brother had minor tremors, which escalated to myoclonus seizures. He was prescribed pregabalin, then moved to Gabapentin liquid. This was increased with his seizures increasing. However, one day in April he had so many I called 999. Midazolam given - no reprieve. Admitted to hospital. Clonazepam started and reduce to zero Gabapentin on advice from neurologist. This has definitely worked for him.
He is now in a nursing home, as he was in our living room and my girls had become wary of his Symptoms. Clonazepam has been increased again and he is now having his pain relief increased to. It’s been a roller coaster and like you I am worried about them coming. CBD is cruel and awful to see it rampaging through his body. We still have moments of humour and I cherish those. Look for the moments ❤️
It’s just awful isn’t it. You are right that every little spark is to be treasured and cherished. I miss mum as she was so much but I feel grateful that I can tell her I love her every day. My parents moved close to me when the diagnosis came and we knew what lay ahead. I can jump in the car and be there in 10 mins, I feel so lucky to be able to do that and be there when needed.
I too hate CBD - and I am feeling for you - it is cruel; frightening; depressing - leaving both sufferer and caregiver feeling helpless and anxious, ruining our lives - a living hell. But just being able to share things with the members of this group that are going through the same as my husband and I gives me so much solace. Thank you all for that
Yes, this group has been fantastic for advice, guidance and experience insight. It does provide so much solace. It has helped our family navigate through this most cruel of diseases. My dad is doing amazing as caregiver, his strength and resilience is incredible but I worry about him so much. It was my parents 49th wedding anniversary on Friday, they have been together since they were 21, this is all a testament to true love.
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