Why am I so tired all the time?

[KazBlue]

I have a nerve sheath tumour behind my left eye. No diagnosis but the tumour had a bleed and a grow so they put me on a load of meds. Now I sleep half the day away. Can anyone help? I eat healthy , am sleeping 10 hours a night like the dead. But I am still tired. Meds are Oxycodone, Duloxetine and Propranalol plus a few others was on before

[Wolfie04]

I don’t know what the connection is between brain issues and fatigue. I’ve had two brain surgeries and it’s 3 years since the last. I’ve also been on the meds you mentioned and have just had an increase in daily dose of oxycodone along with the others Meds. I have been told by my consultant that the medication that “we” have to take to help relieve the ongoing problems, can in fact have a much worse side issue. It’s the drugs themselves that are having a negative impact on us even though they do have some positive impact on us. I’ve not been able to sleep properly since before October’15. I’ve tried all sorts of things. A few years back had to take zopliclone (sleeping pill) but it is a drug that is not supposed to be used routinely. I always need an afternoon snooze. It’s not the best and I’ve talked at length to my doctor about sleep hygiene and sleeping in the afternoon does not help the issue. So I try to remain awake all day but all it does is mean I’m actually too tired to sleep. I cannot recall the last time I slept for ten hours! I’ve thought of coming off ALL meds. They cause so many other issues. I’ve never been keen on medication of any type and here I am on 12 meds at night alone. Oh and back on zopliclone! Has anyone else ever thought of ditching our drugs? I know it’s frightening and they have become our crutch but they come with side issues!

[KazBlue in reply to Wolfie04]

I am on Zopiclone have been on it for years and for me with my spinal issues as well it helps and now with oxycodone and duloxetine ontop I sleep like the dead at night. I hit the pillow and need 2 alarms and my partner to wake up 6.30 am for next dose meds. Im not depressed I know Im not. So its the meds. The shakes are another matter entirely

[Wolfie04 in reply to KazBlue]

It’s got to be a good thing sleeping so well. My doctor says not to rely on the zopliclone but reality is I’ve already self medicated and have doubled the dose. I’m on antidepressants. Not of my liking! I was put on antidepressants before tumour diagnosis and I’m not all together sure that my brain was just having issues and was easy to just give me them. The doctor has changed increased my dosage of anti’ds so they work as a sedative too! Am not convinced. I don’t think I’m depressed! Sad, angry, upset, troubled are probably more the issue. I’m sure I’d feel better if I slept better! Doesn’t seem to happen. How many zopliclone is unhealthy? With brain damage is it best avoided? Tricky past five years!

[KazBlue in reply to Wolfie04]

Before my tumour I had been on anti d's for years and feeling worse. One day I had just had enough and ended up watching a series online called the sacred science. All about holistic and other types of natural medicine.

1 of the series they were talking about anti depression and the myths etc it was very interesting and made me decide with my GP knowing about it I tried the nutmeg idea. Using a pinch of nutmeg on my breakfast each morning in days I was feeling so good my GP agreed to let me slowly withdraw off m meds and in all its been 3 years since I took and anti d until now. I am very careful with the nutmeg as it can make you crazy so just a tiny pinch and sprinkle like you see on a custard tart. I have felt fantastic and whats more in control of my life.

Now with the tumour and all the meds my life isnt mine anymore its the doctors and I dont like it I want it back.

[Wolfie04 in reply to KazBlue]

I’m hearing you! This crazy journey is not the most pleasant. Some mornings I only open one eye just to look out at where I am and then I start to think what the hell happened! I will try the nutmeg! I don’t know why I took them to start with! What with this brain nonsense going on it would be a couple of tablets less in my day! 😐

[Tumo Pioneer]

Reading the replies here is very interesting for me, my 1st craniotomy December 2016 no medication and my 2nd craniotomy March 2020 I’m just on Levetiracetam 500mg twice a day (I’ve never had a seizure) hoping to come off them soon. I won’t take medication, I battle on, but I understand the lack of sleep. I never sleep in the day, I rest sometimes just to recharge myself but I work 3 full days so have a day off in between. The tiredness/fatigue has got worse since my 2nd operation, managing it is a no go, it’s always with me and when it’s really bad I shake and sometimes cry because I’m so tired. We all have different tumours (I’ve had 3 meningiomas) and I’m waiting on my MRI scan results from 3 weeks ago 🤞, I think everyone has to be guided by the true professionals but don’t be afraid to ask for explanations as why you need medication and how long you will need to take them, if they don’t help then speak to your consultant or team and ask if there is something else you could try, not every medication suits the same person. I eat well, I’ve put a bit of weight on but that’s because I can’t exercise, I try but it makes me worse with aches I cannot tolerate, and I m trying to live. Do what is best for yourself but nothing happens overnight, and we are all dealing with the physical and mental sides of brain tumours. Good luck everyone, stay safe , positive, and please keep fighting for yourselves and all of us. ❤️

[SJa2020 in reply to Tumo]

Great words very helpful. Keep going.

[Shannon_TBTC Partner]

Hi KazBlue, you may be interested in reading our web page on Fatigue here- thebraintumourcharity.org/l...

The symptoms and severity of fatigue and tiredness can differ from person to person, so you may not have the same problems as someone with a similar diagnosis and treatment plan.

In addition, we have a webpage on coping with fatigue here- thebraintumourcharity.org/l...

If fatigue is affecting your quality of life, speaking to your healthcare team can result in treatment for some of the factors that contribute to fatigue.

Do let us know if you have any questions. You can speak to a member of our support team by contacting 0808 800 0004 (Monday-Friday, 9-5pm) or email us on [e-mail]

With best wishes, Shannon.