The following is from the American Association of Neurological Surgeons website:
"Dystonia results from abnormal functioning of the basal ganglia, a deep part of the brain which helps control coordination of movement. These regions of the brain control the speed and fluidity of movement and prevent unwanted movements. Patients with dystonia may experience uncontrollable twisting, repetitive movements or abnormal postures and positions. These can affect any part of the body, including the arms, legs, trunk, face and vocal cords."
I have never seen it as severe was you are describing but Dad has experienced small episodes of it. It always passed and nothing was ever done since it didn't present a harmful situation. He hasn't had an episode in months.
My wife had similar symptoms. We think it was Parkinsonism hyperpyrexia syndrome (Neuroleptic malignant syndrome) Anticholinergic (Cogentin) helped for a few weeks but she also needed levadopa or a dopamine agonist.
If the other two meds appeared to have no positive effect then I'd remove them. This should help with the sedation. Mum also had this issues with too many meds being added. She is on diazepam also now which seems to be somewhat helpful and other meds reduced.
Do you have hospice involvement they are good at adjusting medications for pallaitive care, that's their expertise.
He is on Procyclidine and Baclofen as well as a small dose of Diazepam.
The GP is a Pallative care GP and Geoff is now in a nursing home.
I have asked for his medication to be reviewed and if I can speak to the GP today I will ask that she consider removing the other 2 and just using diazepam.
Hope you manage to get a good balance of meds sorted. It is hard as need to help symptoms but not over sedate. Mum is very sensitive to medications so a level of symptoms are still present or else she would be out of it completely and what function she does have removed. Like you describe of not being able to lift head up etc.
Bens neurologist changed his med from diazepam to clonazipam, he claimed it was more suited to the condition. Baclafen never worked for him. Ben's body was very contorted before and even after he died, one of his legs was raised towards his chest crossing over the other leg and there was no way I was able to tease it back to a more comfortable position.
This is a truly horrid disease and makes it worse when doctors just run out of ideas to help with the distress and discomfort it causes
My husband has CBD. He has had seizures until we started with Keppra 6.5 ml 3 times per day. Has stopped them. We don’t give much else prescription wise. That has been prescribed for about 3 years.
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Seizures? Anybody?
CBD and Seizure?
