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We are trying different medicines, taking some away and adding new ones. It's a scary thing because we never know how they will react. Charles doesn't even take morphine anymore and the pain is almost gone. Is taking Trazadone for sleep which helps but he still had a morning hangover and sleeps a great deal (but could be progression). Eliminated Baclofen as well.

Major problem with constipation which is ongoing. The lactulose does nothing and they give no alternatives.

We are stable right now until the decline continues. His throat is giving him a great deal of trouble and it will eventually close up. Then.....

Anyone else had issues with these drugs?


7 Replies

My mum is at the same stage, we also stopped baclofen and all unecessary medication. With regards to lactulose, we use Senakot 2 tablets morning and evening, suppository on alternate days and an enema on day 3 if bowels have not opened. We initially started with lactulose, however as mum as progressed we have now got to enema stage. Hope this helps a little.

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Thanks, I think this is very helpful and yes we are seemingly in same stage.




Mum suffers awfully with medication side effects so she is hardly on any drugs. We've just gone through a rough 3 months trying to find an epilepsy drug that she can tolerate to help full seizures and myclonic jerks. It has now been decided to stop them as the cons outweigh the pros. She was like a different person on them (hostile, aggressive, irritable) and the sedation effect was horrendous too. She wouldn't eat and was so low. Now she is eating more again and more like herself.

She tried baclofen for her stiffness but couldnt tolerate . She just takes paracetamol for pain. Her mood swings are severe but is on a low dose of citaolopram but I doubt it does much now. The neuro said that drugs are ineffective really after a period and intolerance always an issue.

Whilst she isn't in severe pain and I can handle the moods I will keep her off the multiple drugs for as long as possible. The epilepsy ones though will have to be resumed if her seizures get very bad and frequent, they do think they will also progress with her CBD.

For bowels we use Movicol. Latculose and senna did nothing for Mum and we tried more aggressive drugs that she found gave her very bad cramps but can't remember the name of it now. The incontinence nurse advised movicol was sort of in the middle drug.

It's hard knowing what to do for the best and take advice of the medical professionals but the carers know in reality the effect they have on them day to day.


The only thing that has worked after lactulose stop working we were told to try this by emergency Dr,it's a over the counter medicine called restoralax ( dr said for 2 weeks)2x times a day and it took 3 days to kick in,but watch out it really kicked in,after 8 days of 2 times a day we are now doing it every second day at 2x a day and every other day 1x time a day.Today was actually the first non disastrous day I have had in a few weeks..not sure if it sold where you are,link below.

Really tired,hope it make sence

Good luck




Ben has had the same trying to get him off as many drugs as possible, he has 2 Clonazipan at night, citalipram in the morning and 1 sachet of latulose in the evening. He does wear a 5 mg morphine patch to try to help relax muscles as he is very stiff. That's it apart from medication if he has UTI, thrush or eye infection as and when required. Medication Nightmare, you never know if you are doing the right thing.

Love Kate xx


Did a bit of reading..

Miralax/Movicol/restoralax If you are on Miralax ...

"Miralax/Movicol/restoralax If you are on Miralax or as its sold in the UK as Movicol or in Canada as Restoralax.

I think I will get a post going on just different stuff used for constipation.


1 like

Good idea. 😊


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