What is Dex? Dex is dexamethasone, a steroid drug that is used to reduce internal swelling and a lot of other things I imagine…. Remember, I’m NOT a Dr so what do I know? I have been prescribed it on a number of occasions to help control the swelling around Albie, my Grade 4 Glioblastoma Multiforme Brain Tumour enemy! The tablets I have always been given are the 2mg ones and then the number of tablets I am told to take varies depending how much I need.
I’m always impressed with how quickly the Dex steroid kicks in and seems to control all the Brain Tumour symptoms. The problem with it is it brings its own side effects, who’d of thunk it right!! Obviously, like anything these will vary depending on the dose taken.
So…… What is the Dex Effect I’m talking about? Basically, it’s the side effects I get from taking the Dex, as if you hadn’t already worked that out!!
I’ve found that if I have too much… What is too much?? Well, I can’t answer that for you (I’m NOT a Dr!), it seems to be a bit of trial and error but I certainly notice the difference if I have a strong dose, for example when first put back on it in the hospital I was on four 2mg tablets in the morning followed by four 2mg tablets at lunchtime. After trying out different doses, I seem to find that one 2mg tablet in the morning followed by one 2mg tablet at lunchtime does the job for me and has limited, manageable side effects.
If I start with saying what happens when I’m on a high dose and then I’ll try and explain the what happens when I lower the dose.
Sleep, who needs sleep?? The main problem with Dex is the obsessive mind racing that has a serious impact on being able to sleep. Basically, as soon as an idea or thought comes into my head I just can’t shift it until I have thought every last detail of it through. This could be something like thinking of an idea for a blog post (I do try and think of new and interesting content, honest!). As soon as that idea is there, the Dex effect kicks in…… My mind goes into writing mode, even though this is usually at the most inconvenient times like when I’m sleeping or at least trying to sleep, a very detailed blog post is then written in my head. Some of you may be thinking this is great…. This is what I need to create new content!! Well yes, sometimes I do think that but there’s a major flaw to that argument…… As I said, this only ever happens at the most inconvenient times, so when I’m awake and in a suitable position to transfer this amazing new blog post from my head to the site, my brain says NO!!!
The Dex effect has already used all of my brain’s limited power and now it is well and truly in shutdown mode!! I feel completely drained, The Dex has managed to turn my brain power up to 11 and used every available resource! Now I’m awake and wanting to do things for myself there is not any charge left to do anything!! I try and rest and then think about the new post but those ideas have gone, I no longer have a writing mode, I have just gone back to usual state of blankness desperately trying to remember all of the brilliant things that I wanted to share with everyone!!
This also happens a lot when I am trying to get to sleep….. I can already hear you saying well if you’re not asleep why not write it at the time!!!! YES, I suppose you’re right and that could work BUT generally I’m trying to get to sleep because I am tired… NOT because I want to be sitting in bed writing blog posts!!! The rest of my body needs time to recharge too!
Instead the way I found to combat it and just sleep is with the help of mediation. This isn’t something I’ve ever been in to before but it has really worked for me. These days it’s easy to get into, simply by downloading apps onto your phone to listen to. I tried a few, only the free ones…. I’m CHEAP!!!
I was really surprised at how effective they were, I was often fast asleep before the end of the session… Or so I’m told, how would I know what’s happening, I’m asleep remember!! The techniques helped me to clear my mind and not hold on to the thoughts racing through my head….. At last I could SLEEP!!!!
Another part of the obsessive Dex effect is the need to be organised….. I suddenly became addicted to ‘To Do Lists’, I needed to keep records of all the things I needed to do and took great pleasure in ticking them off one by one.
As well as the mind effects, I also noticed other changes. My body temperature seemed to increase and I would be so warm that I would sweat a lot. I then came up in a number of spots all over my back, chest and face…. I think this was linked to the excessive sweating and did clear up after lowering the dose and using spot cleanser (witch hazel) products daily.
I should add an obvious warning here… Excessive sweating is linked to unpleasant smelling!! This can sometimes be embarrassing when people want to give you a reassuring, good luck, get well soon hug but are essentially rubbing up against a fat, sweaty, smelly man!!
I’ve been worried for a while that my eyesight was getting worse and my eyes felt dry and itchy so I have been meaning to get my eyes tested. I have to wear classes for distance and only ever wore them to drive. Since I haven’t been driving I hardly wear my glasses now, this could well explain the problem!
I also find that I spend more and more time staring at screens whether that be phones, computers or the TV and am convinced that’s not doing my eyesight any good. Then in a routine appointment with the Oncologist I just happen to mention about my eyesight and got the response… “That’ll be the Dex!”. Yet another wonderful side effect that I’ll have to deal with. I still think I should stop being lazy and go and get my eyes tested, it just might make more sense to wait until I’ve finished on the Dex.
I also found that I was hungry and wanted to eat all the time…. This isn’t really new to me, I don’t seem to have a full level and could always eat but I did seem to crave food more when on the Dex.
I gradually reduced the Dex dose I was taking until the point where I had stopped. You can’t just stop taking it and instead need to reduce the dose gradually, staying on the new dose for 5-7 days before reducing again until you’re off it. The problem then became Albie decided to take advantage of the situation and started to play me up. Some of the usual symptoms came back, mainly lack of co-ordination and speech slurring. Due to this it was advised I went back on the Dex and then moved back onto the one and one dosage.
I find on this dose the Dex keeps Albie at bay and I can manage the side effects. The things I still put up with…….
- the Dex needs to be taken with or just after food so my day revolves around eating times……….. Making sure I have food in the morning around 0600-0800 but more importantly no matter where I am around 1200. This lunchtime one is the most important as if I have the Dex in the afternoon, it’ll have a real impact on being able to sleep that night. Sounds easy doesn’t it but why don’t you try it for a week anmd see if you’re always somewhere at 12 o’clock where you can have food without a bit of forward planning!
- Indigestion. Even though I take stomach protection tablets (omeprazole) when taking Dex, indigestion is still a problem and sometimes to the point where it feels like sickness. It seems to start from my stomach and then moves up through my chest and then up through my nostrils, it’s a strange gassy feeling that moves up through my body. This can sometimes be brought on from eating different foods or sometimes from sitting / lying in different positions. I can occasionally walk it off or it just goes by moving but the more effective thing is taking a Rene tablet or having a swig from the peptak bottle.
- By far the most noticeable side effect though or at least the one I’m told about the most is the way I speak……. I can’t help it but once I start I’m going at 100 mph. It’s like there’s a race to get everything out of me as quickly as possible. To be honest it doesn’t bother me too much but other people notice it and it annoys the hell out of Gemma. People will say, slow down… we’re not going anywhere. Gemma just looks at me and tells me to slow down or shut up, she finds it draining as her brain is desperately trying to keep up and process all of the information I’m firing at her!!! I don’t let up, I’m relentless, it’ll either all come out or if I’m told bluntly enough I’ll give in and shut up, most likely walking off in a huff as I haven’t understood the problem!