So 8 months on and my daughter is still in a persistent vegetative state - or PDOC as they now seem to call it. I have been researching Zolpidem which in clinical trials managed to restore some people to minimally conscious. I know that it only had an 8% success rate and I'm not getting too carried away here but it has to be worth trying.
Has anyone had experience of a loved one who has had a similar trial?
Have just been given the OK by the neurologist to give it a go - not sure for how long. Would welcome any feedback.
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Mel-Bee
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My partner was given and still takes amantadine, his neurologist at the hospital said it was to wake the brain up. Having researched about it, it says it can wake the brain up quicker. Although this helped Alan, it may not be suitable for your daughter. His tbi was April 2017 and he was in a coma for a few weeks, for me, the lines between his vegetative state and minimal conscious state are blurred. He is doing well but is using crutches indoors (he was in bed many months due to broken pelvis) and he gets fatigued easily and the short term memory is not so good but he has still got a sense of humour. This worked for Alan and every brain is different. Sorry for the long reply. I hope the trial is helpful for your daughter x
I've only read about this Mel and have no direct experience. I know it can provide windows of communication whist the drug is active and has been known to awaken hibernating cells to encourage longer periods of consciousness. It seems to be rated a miracle drug, even by the scientific community.
I sincerely hope your daughter is one of the lucky ones who responds to the drug ; as you've said, it's a slim chance but, as a parent, I'd be more than willing to give it a try. All best wishes m'dear, Cat x
I thought I was in a café but it was lunch time in hospital and I said to my Daughter "My treat Sarah pass my bag up" she told me "it isn't here Mum" so I told her not to muck about I am paying lol ..Glad I can look back and laugh when she tells me what I said xx
I say give it a try my husband has anoxic brain injury and it worked. The only thing is it’s short lived. It has a short life. I wish my husband would just stay like he is on Ambien however I’m hopeful for new research
Thanks for sending this. The consultant tried to talk me out of trying because there is no clinical evidence that it would work, so to hear from someone that it did makes me feel that we're not wrong to try.
But can I ask a personal question - and it's fine if you don't want to say - but overall, has it made it harder for you to see an improvement but for it to be so short lived? And how short lived are the improvements - the research notes talk about the effect fading as the drug wears off but no one actually puts this into hours.
It means a lot that you took the time to send this message, thanks again.
youtu.be/KTFicgrVk0w Here is a link about some other people that tried it on viceland. I don’t see any long term improvement yet but there are some stories where people gotten better. It’s like I get 10 minutes to talk to my husband again. And then it goes away. It’s frustrating but it gives me hope but it’s heartbreaking at the same time. I’m now looking Into Hyperbaric chamber with dr harch. I’m all for trying alternative therapy. I wish you peace and blessings
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