Nightmares and mds

Please post here your experiences of MDS as a patient, carer, family or friend

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Goldtooth
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Nightmares and mds

Postby Goldtooth » 04 Nov 2015 06:09

Ever since I was diagnosed with MDS RAEB Intermediate nearly a year ago I have been plagued by nightmares, I awake in the morning greatly distressed.
I manage to cope quite well with my predicament during the day but there seems to be no escape in sleep.
Has anyone else experienced this and if so I would greatly welcome any suggestions how to beat it.
I mentioned this to my GP and he just shrugged his shoulders!!

Anthony
NW1958
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Re: Nightmares and mds

Postby NW1958 » 04 Nov 2015 11:17

Anthony - sorry to hear about your distress. I am not sure I would describe my own experiences as nightmares but certainly my dreams get very wild and I awake feeling fatigued. I think fatigue is at the root of this problem, I am currently on my second cycle of Azacitidine (and I take Methotrexate weekly) and i think these add to the effect. Fatigue will make you sleep so deeply and perhaps that causes the nightmares. I wish I could offer a solution - I'd be trying aromatherapy and music, and certainly hoping my GP didn't simply shrug his shoulders (which I am sure he wouldn't)
It is a shame that there is such a limited understanding of sleep.
Good luck and best wishes
Male, Aged 56, Still working, Recent diagnosis, Based nr Exeter
MollyP
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Location: South East England
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Re: Nightmares and mds

Postby MollyP » 06 Nov 2015 09:08

Hi Anthony, I am sorry your nights are disturbed in this way, I am not an MDS patient, but the wife of one, I have however had cancer myself and have had to suffer with ongoing fatigue but thankfully I sleep.
I myself found self hypnosis a massive help when I was ill, I had done a bit of medication using cd's but I found a lovely hypnotist and he taught me how to hypnotise myself, whilst undergoing treatment in the radio therapy scanners I would take myself off to the garden I had created in my mind and wander about, do a bit of weeding etc. that was 5 years ago but sometimes now I have trouble getting back to sleep when I awake at 2am and I use the same method, although a different place to engage my mind in a safe and peaceful place, sometimes it's thnking about having a lovely snooze in the sun with the waves swooshing up the beach below me.
I have found it an amazing tool, even here typing to you now thinking about the counting back from 10 to 1 calms me down and regulates my breathing.
If you haven't tried it and think it's mumbo jumbo I would say have a go, I was fully aware of where I was and what was going on in my first session. If I had the money I would go every week for a guided session. As it was I went twice and for about four years I used the techniques taught to me almost every day, my life has moved on now and I am a calmer person in myself but I know that a lot of that is down to being able to calm myself when I need to.
I do hope you get a good nights sleep soon
Best wishes
Molly
*** *** *** ***
69 yrs hubby - CMML 1 dx Feb 2013
raised Monocytes was watch and wait
Nov 13 hydroxycarbamide.
Jan 14 blood OK
April 14 Taken off Hyd' - low neutrophil
Still w&w
Jan 15 raised counts but retains w&w status
May 16 still w&w
Goldtooth
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Re: Nightmares and mds

Postby Goldtooth » 07 Nov 2015 08:55

Many thanks for your suggestion, I'll certainly give it a try and let you know how I get on.
A great many of my bad dreams feature unpleasant moments in my past in exaggerated form.
It's true that your past comes back to haunt you!!

Best wishes
Anthony
chris
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Re: Nightmares and mds

Postby chris » 10 Nov 2015 16:27

Dear Anthony

I recall you saying that you were quite badly affected emotionally when you were first diagnosed and you mentioned counselling had been arranged? Not sure if you ever took it up or whether it helped but I do wonder if your current nightmares are happening because you are still anxious but just managing to suppress it in your waking hours only for your sub-conscious mind to try to deal with it at night? So I wondered if more counselling might help? It would at least give you an opportunity to talk about what has happened in your past and that in itself might help to stop the nightmares?

Molly has also given some great ideas on what worked for her and I think you just need to work through what might help you.

Hope this helps

Chris
Chris. (F) Age 67 (2017). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
Goldtooth
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Re: Nightmares and mds

Postby Goldtooth » 20 Nov 2015 06:08

Dear Chris,
Thanks for your advice.
I have always had vivid dreams all my life, usually related to unpleasant episodes experienced in the past.
The nightmares are not so frequent now, not because of counselling which I did not find at all helpful.
I am just finishing cycle 12 of Azacitidine and at the moment things are going well, long may that continue.
I still feel furious that I should have been so unfortunate to be diagnosed with MDS and I reckon my anger is a positive way of dealing with it.
I certainly don't think of myself as an invalid, in fact I feel very positive about life.
It may sound rather odd but anger works for me as a coping mechanism GRRR.

Regards
Anthony
chris
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Re: Nightmares and mds

Postby chris » 21 Nov 2015 13:28

Dear Anthony

Absolutely!! Why shouldn't you feel angry ?! I still do - 7 years on!! I feel I did everything "right" in my life regarding diet and lifestyle and feel most aggrieved that I should have been "selected" for this disease!!

Keep up the good work with the Aza!

Chris
Chris. (F) Age 67 (2017). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex

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