Post transplant nightmares

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Post transplant nightmares

Postby 1985paulscott » Thu Jul 07, 2016 12:36 am

Hi all

I recently underwent a kidney transplant a month ago.all iss well apart from these constant nightmares im having.usually very random famoly related nightmares not having anything to do with current lifemor situationsim curious as to whether anyone else is in the same situation

Paul
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Re: Post transplant nightmares

Postby rheaybou » Thu Jul 07, 2016 5:43 am

I had bad dreams/night terrors for up to 6 months post TX.

I pu it down to the medication and the trauma that I had gone through. 3 1/2 years later It's not somehing I now have. But have a chat next time you are in clinic with your specialist just o make sure.
Now 35 with Alports and I had my first kidney-versary 18th feb 2013....I hope to have many more.

My living donor and his family are doing all well.

==
Alports.
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Re: Post transplant nightmares

Postby DeanH » Thu Jul 07, 2016 9:15 am

For a short time after coming out of hospital post transplant I also suffered with sleeplessness and issues around nightmares which I put down more to the high steroids and coming off of the pain medication, as soon as I was off of the pain medication and the steroids were reduced down it completely stopped. I too would advise talking to your clinic.

All the best.
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Re: Post transplant nightmares

Postby sporti » Fri Jul 08, 2016 12:39 pm

Oh yes major nightmares and hallucinations. I'm sure it's very common after transplant with all the drugs we have to take. Eased off after a month. Although the hallucinations were a problem! Think it was the steroid
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Re: Post transplant nightmares

Postby cspringer479 » Fri Jul 08, 2016 4:19 pm

I have read insomnia is one of the effects of transplant. While you're taking medications, it is important to carefully monitor and report any unusual side effects to your transplant nurse coordinator. Side effects vary by dosage and type of medication. Ask your nurse coordinator or doctor any questions you have about your particular medication.
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Re: Post transplant nightmares

Postby Chris Wright » Fri Jul 08, 2016 6:21 pm

That may well be a side effect of prednisolone.

It seems to have various psychological side effects.

They don't seem to be well or systematically recorded, but talking to my consultants over the years, it is a theme that recurs.

C
Transplanted Sept 1981

Still enjoying life like a 21 year old, or younger!
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Re: Post transplant nightmares

Postby AmandaClare » Sun Jul 10, 2016 11:19 am

I wake up in a panic every night. I think it probably happens in the first sleep cycle when I'm just dropping into deeper sleep. I wake up with a jolt, usually thinking that I haven't taken my drugs, or that I'm on holiday and haven't taken them for several days. Or that I haven't given my son his medication, which is doubly ridiculous, because he isn't on any! To calm down I have to remember taking my drugs and then go back to sleep. Occasionally I'm properly awake and can't get back to sleep for hours.

It's been happening for at least 10 years and I have no idea why, but I imagine it's related to one or other medication, or is a psychological thing from years of health worries. My medication causes me no conscious anxiety - I've been taking daily meds for 35 years and it's just part of my routine. But maybe unconsciously something else is lurking.
Alports Syndrome
Dialysis 1986, aged 14
Transplant 1988, still going strong!
Baby boy 2010
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Re: Post transplant nightmares

Postby wagolynn » Sun Jul 10, 2016 7:18 pm

Hi AmandaClare,

Have you tried keeping a pad and pen alongside your bed?

When you wake you can answer the questions racing around your head, in writing, and add any thoughts you may have about tomorrow, it's a sort of head clear-out.

Avoid high caffeine drinks after about 3 pm, difficult to digest foods, and alcohol.

It works for some people.
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Re: Post transplant nightmares

Postby j0hnr » Fri Aug 19, 2016 10:18 am

AmandaClare wrote:I wake up in a panic every night. I think it probably happens in the first sleep cycle when I'm just dropping into deeper sleep. I wake up with a jolt, usually thinking that I haven't taken my drugs, or that I'm on holiday and haven't taken them for several days. Or that I haven't given my son his medication, which is doubly ridiculous, because he isn't on any! To calm down I have to remember taking my drugs and then go back to sleep. Occasionally I'm properly awake and can't get back to sleep for hours.

It's been happening for at least 10 years and I have no idea why, but I imagine it's related to one or other medication, or is a psychological thing from years of health worries. My medication causes me no conscious anxiety - I've been taking daily meds for 35 years and it's just part of my routine. But maybe unconsciously something else is lurking.


Is there any possibility you are suffering from Sleep Apnoea - unrelated to medication? Waking up suddenly is a classic symptom (along with snoring) as you actually cannot breathe properly in deep sleep with this. Do you always feel tired - even after 7-8 hours in bed? I have it and need to wear a positive-pressure mask (connected to a CPAP machine) to sleep in - to keep the airways open. Worth asking your GP.
Type 1 diabetes: c.1974
Stage 5 CKD: Dec2012 (creatinine 395 eGFR<15)
Dialysis (CAPD): Oct2013 (creatinine 609 eGFR<10)
SPK transplant: 18Feb14 (both still going well)
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Re: Post transplant nightmares

Postby AmandaClare » Fri Aug 26, 2016 10:27 pm

Thanks for the suggestion, J0hnr. I've heard of sleep apnoea but have to confess it never crossed my mind I might have it! It could be the cause, on the other hand I only get the jumping awake thing on the first sleep cycle, it doesn't happen later in the night. But I will research it more and maybe go to the doctor.
Alports Syndrome
Dialysis 1986, aged 14
Transplant 1988, still going strong!
Baby boy 2010
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Re: Post transplant nightmares

Postby jon albert » Tue Sep 06, 2016 9:19 pm

1985paulscott wrote:Hi all

I recently underwent a kidney transplant a month ago.all iss well apart from these constant nightmares im having.usually very random famoly related nightmares not having anything to do with current lifemor situationsim curious as to whether anyone else is in the same situation

Paul


I t might be the case of anxiety or insomnia due to fear of transplant or something else you did not mention here!
Last edited by jon albert on Thu Sep 08, 2016 2:18 am, edited 1 time in total.
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Re: Post transplant nightmares

Postby Tibbs » Wed Sep 07, 2016 12:15 am

I didn't have nightmares, but I did have incredibly vivid dreams for a few months post transplant. I spoke to my neph and he said that Tacro can give you strange dreams until you get used to it.
26/11/12 - Live donor transplant from my dad
6/1/13 - Discharged - Rejection episode over
7/1/13 - Getting on with life
24/9/13 - Left Radical Nephrectomy of Native Kidney due to cancerous tumour
14/10/13 - Back to work, getting on with life
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