[marialParticipant]

Thanks so much Mulberry. I managed to get at least four hours straight last night so feeling a little more human. I’m in for next 2nd treatment tomorrow and will ask the nurses about something to help me. It’s so reassuring having a wonderful community here to get some of the practical tips as well as support!

[kh0305Moderator]

Hi Maria,
From my experience with dad, his side effects haven’t got worse per se, but they have changed over the course of his treatment. For example, the digestive side effects are milder but he has issues with memory now which he didn’t have at the beginning. Sadly he’s never found a way around the dex insomnia but did have some luck with changing the timings slightly of when he was taking the meds but now just anticipates it and allows himself extra time to catch up with naps. Not ideal but helps a bit.
Hope you find some help with the CBD or an alternative as its never fun being shattered 🙁 xx

• This reply was modified 1 year, 9 months ago by  kh0305.

[marialParticipant]

Thank you kh0305, 2nd treatment and will see how I go this week. Not allowed CBD oil after all but they have recommended Nytol (a herbal sleep support) from the chemist which doesn’t interact with the meds, so will try that. It is certainly a journey and one I’m still trying to navigate. x

[mulberryParticipant]

For me the sleeplessness seemed to be routed in anxiety and the stress of diagnosis as I’d never experienced sleep problems before. If this is true for you, this really won’t last forever. One day you will find you’ve not thought about myeloma for a short while, then these periods extend and eventually the diagnosis & the disease become just a part of who you are and how you live your life. As this happens your sleep will improve, except on occasions that you are taking dexamethasone. Even then I found that by cutting out sugars (except fruit) I did not suffer from Dex highs and lows that most patients suffer (although I was taking zopiclone for sleeplessness). Dex causes blood sugars to spike and my theory was that cutting sugar consumption would mitigate against the effects of Dex. It worked for me.
I hope you soon have the good news that treatment is working.

[marialParticipant]

Thank you once again for your great support and information. This is priceless for me. No doubt a huge part of my sleeplessness is due to anxiety about the MM diagnosis and treatment however fortunately last night the Nytol seemed to take the edge off so was able to get some deep sleep. I generally avoid sugars except for fruit but occasionally indulge in dark chocolate so good to know I should avoid it on my Dex days.
I guess I’ll know at the end of the first cycle how things are looking so currently meditating and focused on a positive healing journey.

So motivating to hear positive stories on this forum

[kh0305Moderator]

Hi Maria,
Sounds promising with the nytol- hope that continues to work for you. Keeping my fingers crossed it does and you get back into a more regular sleep pattern and that will no doubt help with the anxiety too if you’re feeling more rested. Take care xx

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