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Headaches - Please help!

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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 

Hi Hannah,

That sounds hard to deal with. I'm sorry to hear you've been having such trouble - persistent headache sounds dreadful.

One thing that jumped out to me was when you said "around 3 months ago my dosage was reduced to 300 twice a day" ... so you are now taking 600mg of imatinib / Glivec a day? How much were you taking before? The standard dose is 400mg once a day - high doses can certainly explain stronger side effects.

Regular paracetamol isn't a fantastic idea either, as it's quite hard on your liver - as is imatinib.

May I ask where you are being treated? Also, have you discussed with your consultant abbot the possibility of switching to different medication? Serious side effects warrant that discussion. 

David.

Hannah, this sounds awful! You did say you suffer migraines abut once a month- from what you have described your 'new' headache sound very similar to a migraine..... apart from vomiting. I would say that you either find an alternative practitioner: either a homeopath, a cranial osteopath or a herbalist/acupuncturist. As you say all other attempts by your haematologist to deal with this have failed. If you do not want to try alternative therapy then I suggest that you ask to change your TKI to either dasatinib, bosutinib or ponatinib - depending on your individual requirements. You say that imatinib did not work for you.... can you let us know what your response is/has been to either TKI. There is no reason why you should put up with this kind of debilitating side effect from nilotinib - given you already suffer from migraines. Personally, I suffered a lot when I was younger and found the only remedy for me was acupuncture. A short course with a TCM practitioner (traditional Chinese medicine) proved to be very quickly effective and I have not suffered since. David's advice about using painkillers is right- not good for the liver given it also metabolises TKI therapies. I think your doctor should be able to explain/support a change of TKI.

I hope this is helpful.

sandy

Hi David,

 

Thank you for your reply, it is hard, especially at certain times.

 

I take Nilotanib now. When I was diagnosed last February I was put straight onto Imatinib which although worked for me in terms of side effects it wasn't working for my Leukaemia and I wasn't getting the results my consultant wanted so in august time last year I was switched over to Nilotnib which is when my side effects started and have been getting worse ever since. I currently take 300mg of Nilotanib twice a day, so in total 600mg a day. I used to take a higher dose but the consultants are happy with the results im getting so reduced my dosage at the start of the year to try to help my side effects.

 

I completely agree with you in regards to the paracetamol, I don't like taking any tablets I don't absolutely have to due to that fact. When my consultant suggested that I take them I did mention to her that I would then be just covering up the problems and my liver would be taking a kicking for that privilege.

 

Im being treated at Gloucester Hospital in Gloucestershire. I have asked to be switched to another tablet a few times but they are very reluctant to do that because the Nilotanib is working for them. They are also reluctant because if I switch then it is another treatment that hasn't worked so in effect shrinks my options in the long run.

 

I have thought about asking for another opinion from a different hospital as I tent to see a different consultant every time I go in and I don't feel like im listened to.

 

Thank you again for your reply,

 

Hannah

 

Hi Sandy,

 

Thank you for your reply.

My headaches are very similar to Migraines. When I say I have a migraine often I class that as me being bed bound, unable to move without being sick usually for the whole day. The pain is always there and almost everyday I feel like im going to be sick especially in the mornings although this lasts a lot of the day and sometimes I have to try my hardest not to be.

I have thought about finding an alternative consultant, as my appointments are now quite far apart I wouldn't have a problem travelling to a hospital that would listen to me and help.

I have been reading up on Bosutinib for a while but my consultant is very reluctant to change my medication as Nilotanib is working in terms of my Leukaemia. Although maybe with a change of practitioner this may help with a change of treatment!

Acupuncture is defiantly something I would be up for trying.. do you know how I would go about that or any of the others you have suggested.. could I get it done through the NHS? Are the TCM acupuncturists hard to come by?

My consultant did mention that he thought my Leukaemia may have gone into my brain which is what is causing my headaches and would explain a metallic taste I get with my headaches but I thought it would be throughout my body anyway as its a blood cancer.

My response in regards to Imatonib was okay.. im not very good with the technical terms so you'll have to bear with me but my results came down a little but no where near what they wanted, so they switched me to nilotinib and there pleased with my response although im still not getting a deep response.. its still just okay but working more than inatonib.

 

Thank you for being so helpful,

 

Hannah

Hello Hannah,

 

I'm sorry to hear you're having a bad time on nilotinib. When I first started taking nilotinib I had the same symptoms you describe but they settled relatively quickly. You're already drinking water which is very important. Do you know what your PCR results are? These are usually expressed as a percentage and indicate the level of leukaemia cells in your body.

Did I read it correctly, that you were initially put on 800mg of Tasigna per day and now reduced to 600mg? If so, I'm surprised as I believe 600mg is the normal dose.

if you are able to share your PCR results it would be useful so we can understand your progress.

also, if you want to change doctors, Lisa Lowry in Bristol is superb.

 

best wishes

 

chris 

Hannah,

I think if you feel you are not being listened to then you should follow your instinct and ask for a referral... maybe to Bristol and the clinician that Chris has recommended. As there are 5 TKIs including imatinib and nilotinib then I don't see why you should suffer such debilitating side effects.  As for trying an alternative therapist for your migraine headaches then take a look at the following link for info about a therapist in your area. 

Acupinture: http://www.therapy-directory.org.uk/search.php?search=Gloucestershire

Homeopathy: http://www.therapy-directory.org.uk/search.php?search=Gloucestershire&se...

I am afraid that you may well have to pay as the NHS does not really support alternative forms of medicine. There are a couple of homeopathic hospitals in the UK but they are constantly under threat of losing NHS funding. 

If you scroll down on the site I link to above then you may find therapists who have a sliding scale of fees depending on what you can afford. Personally I only needed 4 sessions of Acupuncture to sort our my migraine problem so as that was many years ago I reckon I got my moneys worth! But seriously, do ask for a referral to a CML specialist centre  - I am not sure Gloucester is on that list - and you really could do with seeing someone who is used to treating CML. 

Hope this is helpful, you should not be suffering such side effects just to please your doctors. You really need to ask for your PCR test results - 

Sandy

Meditation really helped with my migraines and mine were mostly stress triggered. i suspect the TKI headaches are triggering stress migraines. Check out Dhamma Dipa in UK for introductory 10 day courses which are donation based.