[AMcGuireParticipant]

Hi everyone, hope this finds you all well.

I've had something on my mind for some time now, so thought now that I'm back into the swing of the discussion board that I'd post something about it. John suffers (or rather I do the suffering!) with vivid dreams and terrible twitches and jerks all through the night.

I'm wondering if anyone else lives like this? I'm assuming it is all down to the drugs????

As you know, John has both MM and Amyloidosis. Like everyone else he takes buckets of pills for both maintenance and pain relief, alongside his patches too. The doctors started him on anti-psychotic drugs a year ago because he was having very vivid dreams through the night which he thought were reality and he was basically trying to kill me (I know it sounds extreme, but he really was punching lumps out of me eg. dreaming he was being robbed by someone so was fighting back). He was completely out of control whilst in a very deep sleep; it didn't happen every night I should add, just every-so-often, he then has no re-collection about the dream until I tell him in the morning. Its been quite alarming.

I guess I've been pushed into asking if anyone else suffers such realistic dreams as the doctors have now stopped the anti-psychotic pills (don't know why, it wasn't explained).

Also, dreams aside, John twitches and jumps about like he's being electrocuted at times, this happens when he's having daytime naps and again when he's sleeping in bed at night. I often say he's a bit like Pinnochio but without strings attached, he never seems to stop shaking. His arms flap around and his legs take on a life of their own. Again, I'm assuming this is drug related. Doctors never seem very bothered about it when we mention it.

Does anyone else lead such an "exciting" life? I've just always wondered if things are happening in his brain or if this is merely side-effects from his medications.

Thanks for taking the time to read,
Sending healing thoughts and love to all
Angelina xx

[brochoParticipant]

Hi Angelina blimey you must both have been exhausted come the morning!! It must be scary to see your husband like that . I think it must be due to the meds, as you said he takes a lot of medication and who knows how they interact with each other. I do have very vivid dreams , sometimes it can seem ages when I wake up working out what is real . I very occasionally get the twitchy legs , although I think the last time was several months ago, which sometimes wake me , I suppose the doctors dont see it as a problem if it is fairly common but if it is bothering you perhaps you need to be a bit pushy with them about looking at his meds and how well they work together Hope you can get it sorted soon love Bridget x

[eveParticipant]

Hi Angelina

Yes I can relate to your post,not as bad but very frighting,Slim has had a few bad times,being an ex marine he has seen and been in many bad situations,but these nightmares he tells me are so frighting,had about 4 in itu,panic attacks they said ,but when we talked about them,they were nightmares.Must admit at time my thoughts were is it mm or drugs,as you say staff not to concerned,I personally think its lack of fluids effecting the brain.
Some funny ones were seeing a girls legs in riding boots walking on top of curtains,and wanting to build walls in itu so no one could get into his space his language was over the top too,He believed all this was real,the bad ones,are so bad I cannot talk about them.

On the serious side with Slim having lesions on his skull,and reading a post on here about someone who had mm in fluid on brain,it knocked me for six,Min was the one who dragged me back to sense.

Hope this is some help to you eve

[MinParticipant]

Hi Angelina,
When Peter was first put on Tramadol and codeine we went to stay at my daughters and he woke up in the morning telling us he had been talking to a variety of dead people relatives and friends who had all been giving him advise on how to beat his kidney failure etc.
We thought he had gone doolally! He cried like a baby because it was so real and so upset because no one believed him It doesn't happen anymore as he knows how much painkiller to take for his back pain now.
More recently I had dreadful sciatica,while waiting for an appointment with the Dr in the absence of any pain killer that worked I took one of his tramadol. The next morning I was doolaly too. Never again.
Reading the leaflet supplied with the drug it says quote RARE side effect extreme sense of euphoria false sense of uneasiness, confusion , hallucinations altered mental state delirium changes to=in ability to think or sense clearly , and the rest
So the answer is read the labels on his drugs, it will probaly account for many of the things you mention as it is only 1 in 1000 who suffer these side effects. Talk to the Dr and see if the drugs are too strong and causing it.
It explains a lot and I was pleased to get home then and read the labels on his drugs and explain to my daughter her Dad was not suffering from cancer of the brain…….which is what we were concerned about at that time as it was so out of character. He was not diagnosed with mm then he was diagnosed with kidney failure so he was on prednisalone and frusimide . So cancer drugs not to blame.
Hope this helps you both.
Min

[AMcGuireParticipant]

Thanks Bridget, Eve and Min …. your reponses have put my mind at rest.

Oh Bridget, some mornings I'm completely exhausted … John on the other hand seems completely unaware that he's been jiggling about. I try to pretend that I'm on a bumpy train or car journey so I don't notice the matress shaking so much and its less of an issue. I also have a little wall of cushions between us to cut down on being thumped.

Eve, I had a little laugh about the legs in boots! Heavens, Johns had some weird dreams at times too … makes you wonder where on earth their imaginations come from?!

Min, you're inside my head – I've been thinking for the past couple of years that Johns amyloidosis has gone into his brain and thats whats causing all the bad dreams and twitches (even though the scanner hasn't picked up brain activity). From reading your own accounts it appears that the drugs are to blame along with lack of fluids which has always been a problem for John and his wonky kidneys. John has always been one for going that extra mile – by this I mean if there is a VERY RARE side effect to get then he'll get it! It makes us chuckle actually, even with the likes of the amyloidosis – he couldn't just make do with MM, he had to go and get the amyloidosis too 😛

John is starting at the newly built local hospital under a new Haematology team so we can start afresh and hope they will get to the bottom of all the wonky bits. I'm becoming increasingly worried about his excrutiating back pain now, he's had no chemo for a few weeks now after reacting badly to the Velcade; his back is lumpy and bumpy which I assume are tumors. I phoned the old hospital yesterday for help as he was in agony so they've suggested doubling up pain relief until he starts with the new team. Oh I so hope they decide quickly on when chemo will begin again.

Anyhow, thanks for the advice on our living nightmares its much appreciated.

Sending healing thoughts and love to all
Angelina xx

[JentayParticipant]

Hi Angelina! What a rotten time your are both having. From my own experiences I would say the drugs are to blame for the nightmares. I had horrible nightmares when I was first diagnosed and taking a cocktail of drugs. They were so bad that I was afraid to go to sleep, in fact. They stopped as soon as I managed to get off all the painkillers etc.

I have never found that doctors are particulary good with drugs. They tend to over-prescribe and don't understand that certain combinations create various unpleasant side-effects. My advice, for what it's worth, is to have a word with the hospital pharmacist. He or she is the expert and I've found them only too ready to help.

Hope life settles down soon for you both,
Jen.

[DaiCroParticipant]

Miss, miss, me miss!

Vivid dreams of the highest order in Technicolour TM with all the bells and whistles.

The whole body super-twitch (usually when I am about to drop off) is a classic, I would love for someone to set me up in laboratory conditions with forty strategically placed cameras etc. to capture the moment in slow motion. I swear that my whole body clears the mattress by a good inch or so… and if you had someone with really quick hands they could pass an aluminium hoop along my body before it landed. The mini leg jerks are frequent too but I don't mind them… they amuse me.;-)

I've been on Gabapentin and slow release MST for over three years now – am & pm – and if I miss a dose (which has happened about four times in total) I get real bad withdrawal symptoms, including stomach cramps, shaking, dehydration and a whole body dull aching – not pleasant. :-S

Occasionally I take one 3.75mg Zimovane sleeping tablet – I can't take them too often because they lose their efficacy after a while… and you have to wean yourself off them and start again… so says the teeshirt wearer. But, used cautiously, once or twice a week, and this baby sleeps like one… and more importantly dreams like one… bliss.8-)

Dai.

[AMcGuireParticipant]

Oh Dai, I've almost wet myself laughing at your expense! Bless you. What a picture you paint in words – I must try the hoop thing with John and see how that goes with his "whole body super-twitch" although I don't think my hands are quick enough to make the gap!! 😀

Jen, you are right about doctors over-prescribing drugs. John goes between the hospice, the GP, the hospital and the community nurse who all throw in their tuppence-worth which ofcourse results in him taking all sorts of cocktails that no-doubt work against each other. I'm hoping that once he's under the care of the new hospital and its team within that they'll sort him out once and for all.

Thanks everyone for your responses and funny little stories, I could add a few of my own but best not blether away. It good to know that John is "normal" then, or as normal as can be on so many drugs, so I'll stick this little worry into a box and be done with it.

Bless you all.

Sent with healing thoughts and love
Angelina xx *y-a-w-n*

[KWilsonParticipant]

Yes, I did have the bad twitches and did and still do have the vivid dreams. I feel the patches (Fentanyl) plus the oral morphine exacerbated these and made my slightly psychotic. I'm not on the patches now but still have the vivid dreams which are, as you say, exhausting. I've always had bad nightmares but the cocktail of drugs we have to take seems to add to the frequency of these.

I've no answers tho'! Sorry!

xxxxxxxxxxx

[Author]

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