Hi I'm Hannah and I'm 24 years old. I was diagnosed 15th Feb last year and have since been on glivic. In august last year my consultant changed me to nilatonib as the glivic wasn't working.
Since December time I've been experiencing very bad headaches. Me and my partner rate them on a scale of 1-10 every day and I'm very lucky and it's usually a one off if if they go below 7/8. They are there from the moment I wake up to the moment I go to sleep. I can't remember the last time I was without it.
I have tried everything my consultant has suggested in the last 7 months from taking regular paracetamol/co codomol/ codine to drinking more to adding coffe into my diet etc (I drink around 2-3 litres of water a day anyway) . Around 3 months ago my dosage was reduced to 300 twice a day. My consultant has ran out of options to give me and I have no idea how to help myself. I am working part time due to my head and extreme tiredness and It's got to the point where I work and just collapse in a dark room when I get home. On the weekends or when I'm not working I struggle to get on with everyday things like going into town or going for a walk.. just really small everyday things. I have no energy.. my hands tingle a lot.. my bones are very sore even walking up the stairs hurts.. but the worst of it is the headaches.. I feel sick with the headaches especially in the morning and they are very painful at times! The pain reduces me to tears at times. When they are bad I usually get a metallic kind of taste in my mouth.. my consultant said this is just due to my tablets but I didn't use to have this at the start of my headaches.
To top top this off I usually have a migraine around once every other week. The headaches don't die down after having a migraine.. it just means I can get out of bed without being sick. Last time I had a migraine I was sick around 9 times with nothing but acid coming up every time. (Sorry if that's too much info!) it just seems they are getting worse over time instead of better. I fast right and avoid all foods I should.. this has been 7 months now and I just don't know how much longer I can deal with them. I'm only 24 and I can't do anything a normal 24 year old would be doing. I remember when I was diagnosed my consultant told me that in a month I would be feeling like a new person but instead I can just feel myself going downhill. I honestly feel like I've been run over by a bus and I'm just left to lay there deteriorating.
any help at at all would be really appreciated as this really gets me down! I feel so worthless and pointless all the time.
Thank you,
hannah