It is now 5 days since my neurosurgery to remove a 1cm cerebellar secondary tumour, and I am lying awake at 2am in my hospital bed. The unfortunate side effect of Dexamethasone is all too common, as many of you may have experienced. I have experienced ravenous hunger, burning stomach pains, racing heartbeat and palpitations, feeling hot, and the ever present sleeplessness and overwhelming creative thinking. I just can't switch the brain off! This wonderful steroid is controlling the inflammation of my brain and tempering the symptoms of nausea and vomiting. I have managed to control some of the side effects by ensuring I take my first dose early at 7am with a bowl of instant oats and a glass of milk to coat the stomach lining. In fact milk, yoghurt and custard top my list of desirable food at present. I also make sure to have my second dose no later than 2pm, although that does not happen in hospital as the doctors like it to be spaced out evenly and insist it be given at 8 pm! Sayonara sleep! Yay, they are reducing my Dex dose from 16mg daily down now to just 4mg daily. For 3 weeks now I have had very little sleep, but tonight for the first time I have managed to catch a few zzzzz's in my butterfly net! I am in heaven!

Hi Sonia ... just read your blog and remembered the side effects of Dex - including the lovely facial puffiness that made me look like a tomato-head. Looking at your pic - you don't look anything like that - great profile photo. Just wanted to drop you a line to wish you all the best for your treatment and some peaceful Dex-reduced sleep! :)

Glad to hear from you after your surgery - sorry to hear about the Dex - sounds like you have a plan to control it though. Thinking of you. Ax

That sucks Sonya, we always used give our BD dex at 8 and 12. Are you on a reflux drug to help the gastric stuff? I have just discovered lorazepam and have had awesome nights sleeps the last couple of nights. Haven't had the dex pleasure yet....

Dexamethasone | BCNA Online Network

15 Replies

SoniaWhite48
Member
14 years ago
I remember now, the reflux drug they gave me was called Nexium.
SoniaWhite48
Member
14 years ago
I remember now, the reflux drug they gave me was called Nexium.
SoniaWhite48
Member
14 years ago
Hi Hilary, Sorry to hear Herceptin giving you grief. My Herceptin has been stopped and will start something else soon. I can relate to your fridge escapades! LOL I was discharged from Hobart hospital yesterday, and my kind brother drove me the 2.5 hour journey home to Launceston. I had the best nights sleep last night in my own bed. (5 hours in total in 2 sessions) Hope you get some sleep soon too. Cheers Sonia :-)
SoniaWhite48
Member
14 years ago
Thanks Tonya, Home yesterday and had 5 wonderful hours of zzzzzzz! Cheers Sonia
SoniaWhite48
Member
14 years ago
Hi Danielle, Yes, hospital did give me reflux drug. Can't remember it's name off the top of my head, but it acted as a protein pump. Did not know about it for the 3 weeks before admission, so was very uncomfortable and resorted to Rennie's myself. Was discharged yesterday and had first night of good sleep (5hours) in my own bed last night! Heaven! Good luck with your journey. Cheers Sonia. :-)
SoniaWhite48
Member
14 years ago
Thanks Amanda, It's good to be home now. Had good sleep in my own bed last night. 5 hours. Bliss! Cheers Sonia
SoniaWhite48
Member
14 years ago
Thanks Kym, Yes my face is now round like a puffy tomato-head, as you say. The profile pic was taken last January, a few months after radiation had finished. I was much thinner then, and feeling somewhat healthier! Cheers Sonia
hilsandglen
Member
14 years ago
Hi sonia, so gad to hear that the op is over ....although sleep diprived :( I have just had some more herceptin today and as I had a nasty reaction afew cycles ago I get all the pre meds from the chemo, so I am also having a sleepless few night ! coping with the side effects from treatment is tough and I am so glad to have my breast buddies ! who understand. I stand in front of the fridge and hust inhail LOL the kids think its funny . Sending you my best hugs and wishes Hilary xx
hilsandglen
Member
14 years ago
Hi sonia, so gad to hear that the op is over ....although sleep diprived :( I have just had some more herceptin today and as I had a nasty reaction afew cycles ago I get all the pre meds from the chemo, so I am also having a sleepless few night ! coping with the side effects from treatment is tough and I am so glad to have my breast buddies ! who understand. I stand in front of the fridge and hust inhail LOL the kids think its funny . Sending you my best hugs and wishes Hilary xx
TonyaM
Member
14 years ago
So glad surgery is over for you.Hope you make a quick recovery and be able to get off the dex.And yes,lorazepan and temazepan are great when you are desperate for a night's sleep.Probably couldn't have it so soon after brain surgery though.Hope there are more zzzzzz coming your way.

Tonya xx