Zolpidem trial - set up to fail?: Last time I posted... - Headway

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Zolpidem trial - set up to fail?

Mel-Bee profile image
8 Replies

Last time I posted I was asking for people's input on a Zolpidem trial as we were eager to try anything, no matter how slim the chances of success. My daughter, now 25, remains in a vegetative state - or PDOC as I think we're now meant to call it, and I figured that even an 8% chance of raising her awareness was worth pursuing. We met with such negativity from the medics but pushed on anyway. Finally we got approval for a 3 day trial on a drug that costs peanuts in the great scheme of things.

I won't lie and say that I wasn't disappointed when there was no change, because I went into it trying really hard to manage my expectations. However a week ago d had to go to the dentist. (Small wars have possibly been organised with less difficulty) and I was given a printout of her medication to take which I read for the first time. I realised for the first time that she was on 5 different types of pain killer including morphine (I knew about the morphine) and it's a miracle that she manages to open her eyes with that amount of sedation.

In all my conversations about the Zolpidem trial, no one ever discussed the possible impact of other medications and I can't help feeling that this trial never had a hope of working. It has left me feeling a bit p****d off that the doctors seem to have played me rather than engaging with me like the rational, open minded person that I believe I am.

I want to see if we can wean her off some of the drugs and have a second go but am really undecided about whether I want to be responsible for her having even a day of severe pain whilst we try to find the right drugs level - all for an 8% chance.

Does anyone have any thoughts.

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8 Replies
Danger19 profile image
Danger19

Hello my lovely,

I have been a registered specialist nurse for 25 years. Admittedly my specialism is end of life and cancer care but there is nothing medical that I do not know about especially medications. I really don't want to upset or worry you but you are not getting much information from the medical professionals in charge of her care.

Zolpiderm is primarily used as a sleeping aid. I don't know if your daughter had difficulty sleeping or relaxing but that is usually what it is prescribed for. Morphine is an opiate and is highly addictive. So by stopping it if she has been on it for a while will probably cause her to suffer withdrawal. Other opiates are Codiene, Tramadol, OxyContin, Fentynal to name just a few. The withdrawal from opiates is no different to Cocaine, Heroin, Speed, all street drugs. This causes tremors, the shakes, vomiting, diarrhoea, dizziness, has a profound effect on emotions as well. Opiates metabolise into a morphine like substance in the human system but so does Heroin! Also Benzodiazapines are often prescribed in this situation these are Diazepam, Amitritilyne, Temazapam, again to name just a few. Opiates can come in tablet form, liquid, via injection and patch form. Obviously I do not know the extent of your daughters pain but I hope I've given you an informed knowledge of what they may be giving her.

I really hope I have not caused you further distress or concern. I just want you to know what the effects of stopping these could be. However good, decent medical professionals will wean her off them rather than just immediately stopping them.

Anything else I can help you with please just ask. If it's something I'm not sure of I have medical professional friends including Doctors of all qualifications and departments that I can gain information from.

I sincerely wish peace, happiness and both your and daughter some seriously good luck,

Vikki

Mel-Bee profile image
Mel-Bee in reply to Danger19

Dear Vikki,

Thanks for your response. You couldn't possibly upset or worry me in simply stating the facts - the thing we hate the most since our daughter's brain injury is being "protected" with a series of kind half truths and with doctors assuming that we wouldn't understand things. I would always far rather get it straight and then process the information.

D is on morphine, pregabalin, naproxen, baclofen, codeine and paracetamol. I wouldn't think of withdrawing the morphine, because it has made a huge difference to her pain levels and I accept that addiction isn't really an issue for her because in effect this is palliative care. Nor would I change the Baclofen which helps with spasticity and without it she couldn't sit in a wheelchair for a few hours each day. But I do wonder about the others and the fact that she has all of them together. They were added incrementally in the early days to get on top of the pain but failed, which is why we introduced the morphine patch, but the others were never discontinued or reduced. Long term I worry about the toxicity of so many meds, especially liver damage, as she had a serious paracetamol overdose in 2016. I know livers are forgiving but hers took a beating.

Although the Zolpidem is a sleeping tablet, it has had an unexpected effect on some patients in a vegetative state - wakening dormant brain cells and increasing levels of awareness. Do you know how much of a sedative effect d's cocktail of pain meds might have had? I just wonder if they were in conflict with each other.

I think Medical staff don't want to discuss this with me because they perhaps see this as me being unable to accept the situation but that isn't the case. I challenge appropriately because I want to understand. During my daughters long illness, prior to the hypoxic brain injury, if I had just accepted what the doctors said and not fought for second opinions, we would have lost her back in 2009.

Sorry, didn't meant to waffle on.

Mel

Danger19 profile image
Danger19 in reply to Mel-Bee

Hello my lovely,

You are extremely welcome to the information I have given you my friend. I can't believe the professionals involved in your daughter condition are so unsupportive and unhelpful. Unfortunately so many medical staff can be very ignorant to patients and their families.

Naproxen is an anti-inflammatory and is more effective than Ibuprofen and Diclofenic. Pregablin is used for epilepsy but is also extremely effective for nerve pain and can help with stress and anxiety, often used in conditions such as Multiple Sclerosis. Baclofen often is very effective in spasticity and joint stiffness, a very good analgesia. I don't understand why they are giving Codiene when your daughter already has Morphine given via a patch? I can see the importance of the Paracetamol as this can help Morphine to work 30% quicker and better. All these medications can have a detrimental effect on the liver and kidneys. But I would hope she is having regular blood tests to check on liver and renal function. You are absolutely correct, the liver is the only organ that can repair itself.

You should not be seen as unable to accept the situation. If I were your daughters nurse I would be of the opinion that you are simply a concerned Mum who wants the best outcome for your daughter and wants effective medication to not just improve her condition but also keep her comfortable. You are doing nothing wrong in your situation, just wanting the best. Keep fighting on and try to stay as positive as you can.

I am more than happy to give you support and offer any information you need. You are in my thoughts my friend.

I wish you some peace, happiness and a whole lot of luck,

Vikki

Mel-Bee profile image
Mel-Bee in reply to Danger19

Thanks Vikki,

I have asked today if we can schedule a review of her medication with the doctors and we'll take it from there. I didn't know about the interaction between morphine and paracetamol, that is really helpful to know.

I hate to take up more of your time but could you advise which of them have a sedative effect. Optimally, I want to find a position where she is pain free but as aware as possible. If that isn't possible then obviously I'll go for pain free.

Thanks for your support - it is a bit of a lonely existence even with husband and other kids and sometimes it is really exhausting being the strong, coping one.

Mel xx

Danger19 profile image
Danger19 in reply to Mel-Bee

Hello my friend,

Please don't worry about taking up my time. I'm happy to help. Zolpidem, as it's a sleep aid will make individuals groggy, confused and may continue once they wake in the morning. Morphine and Codiene can also affect a persons awareness and cause a person to appear confused and very tired. High doses will cause the individual to appear almost drunk, and very dopey. Pregablin is also quite strong. My Dad takes this for Multiple Sclerosis. Every time his dose is increased he appears almost non responsive. He becomes very confused, sleepy and it can make him struggle to cope. If you could find out the doses she is given it would help. All these medications can have a mild to strong sedative effect, it can also depend on how the individuals body copes with it. I had to take high doses of Codiene for a while and my children couldn't understand the changes in me when I took them. I would keep falling asleep through the day, I would talk about rubbish and they would have no idea what I was on about. I couldn't drive my car because I was sleepy, dopey and dangerous. I decided my children were more important and just learnt to live with the pain. Opiates and pregablin should not cause a person to become completely unresponsive but will affect awareness.

My friend is a Medical Registra at the local hospital and he agrees with what I have told you. If we can help in any other ways please don't hesitate to ask.

Take care,

Vikki

cat3 profile image
cat3

Those meds do seem excessive Mel. I'd be asking about the Pregabalin and Naproxen in particular. Together with the Paracetamol, Codeine and Morphine it almost hints of a chemical cosh. Definitely look at reducing some of the drugs gradually and, personally (as a mum) I'd try the Ambien again when your girl's system might be clearer and more receptive.

It's an established fact that so many pain meds can both cancel each other out and/or actually cause more pain. But by inducing a level of torper, a patient and their pain can be managed efficiently.

It's might be a long shot, but one you seem determined to take ; so good on you for trying everything possible to bring your daughter to a better place. My best wishes for you all, Cat x

Mel-Bee profile image
Mel-Bee in reply to cat3

Thanks Cat,

It is reassuring to know that other people have the same question mark over such a vast array of pain killers - and that there is nothing intrinsically wrong with at least asking the question about whether they are all necessary.

In a non-funny way it makes me laugh, because back in July 18 when they fitted her PEG by cutting into her belly, the hospital gave her no pain relief at all because, to quote them, she couldn't feel pain. Her heart rate of 170, stomach curls and groaning might have given them a clue that they were wrong but apparently not. So I'm all for too much rather than too little. Still, we got an apology and the nurses got further training. Nothing said about the doctors but of course they are untouchable in my experience.

I'm sorry that my posts all seem a bit angry at the moment. Coming up to the 1 year anniversary and the NHS enquiry is finally concluding with serious failures identified in d's care so I seem to have a bit of a downer on the medical profession, which is so unfair because we have met some wonderful doctors and nurses in the last year and before her brain injury.

I am so grateful for your reply, will definitely keep pushing for a review of her meds and a second trial.

cat3 profile image
cat3 in reply to Mel-Bee

No need to apologise for your anger m'love ; it's well justified and this is a safe place to vent. I just hope the enquiry is thorough and honest.

You are your daughter's champion Mel ………..such a commendable but exhausting role !

Good luck going forward..... xx

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