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Chemo headache

32 REPLIES 32

Re: Chemo headache

Hi Sue,

like you I have only just joined the forum and noticed your title, I am a cycle behind you having had cycle 2 of FecT on 9th Feb. Like you have bad headaches this time have discovered migraine/koolin pads available from and Boots or supermarket. I get them for the first 3/4 days and these are really helping this time.( have one on as I type🎀

 

My friend also had the same treatment and has told me to try essential oils on my forehead during the actual treatment which I am going to try on cycle 3 .

 

hope this helps  and thinking of you.

 

Sally x

 

 

Re: Chemo headache

Hi guys , I'm new to this forum and like you I am getting headaches a lot. Not to painful, but annoying nevertheless. I had my first Chemo on 22nd of this month and apart from the headaches and weak legs I have nothing to complain about . Just good to read about others just like yourselves. You are very chirpy and very brave and im full of admiration for you all you. Hope you all had a lovely Christmas and my hopes for a Healthy and happy New year for.you all. Sue. Xxx

Re: Chemo headache

Hi Richard, Thanks for posting this - as I thought I was the only one to get a bad headache during chemo. Mine only happened the first time I had chemo, but it was so bad they sent me for a CT scan, as they were worried that I had an inter-cranial bleed (because I have skull metastasis). Fortunately I didn't, but the only thing that touched it was ora-morph.

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Re: Chemo headache

Gday Rich, I suffer pretty bad headaches after chemo too. I have only had 2 chemo sessions so far and both times had really bad headaches for a week afterwards. I was grateful to see your posts and the advice given to you. I may ask for something stronger next time.

I wasn't asking for help with the side effects, because I didn't want to complain and I just thought that was a part of the 'journey'. I knew the side effects may be tough and I was just going to just take it. But this week I ended up in hospital with 2 blood clots in my arm that have been there since my last chemo session on the 9/11 and I think I have learnt my lesson to speak up for myself now.

Thank you for your posts and I wish you all the best with the rest of your treatment. I hope you have cracked it for your next chemo session.

Re: Chemo headache

Thanks richard

I've just invested in a wii fit plus as they say a bit of exercise helps with everything inc headaches so hoping that will help
Loved the hula hoop anyway
XjoX

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Re: Chemo headache

You're following a very similar path to me, I also had a lumpectomy followed by a mastectomy, I started chemo nearly 2 months after my lumpectomy. It worked out well, it gave me a chance to go on holiday and get to the bank (if you know what I mean!)

I feel for you, the waiting gets hard after a while, at least when you get a date for it to start to can begin planning, and you've certainly got the right attitude, by the time the first session came along I was almost excited. Although that very quickly passed, it made the time leading up to it much more manageable, even though most people thought I was just keeping my head in the sand for as long as possible!

I really hope you get what you want and need soon, let me know how you get on and if I can help at all, please let me know.

Richard

Re: Chemo headache

am waiting for 1st ONC meeting should be hopefully next week. Unfortunately I had to have 2 ops - lumpectomy then mastectomy as margins weren't clear so I am a month later with treatment than I would have been which has been very difficult & frustrating as well as of course upsetting. Though in some ways I now feel much better prepared as I have had plenty of time to do more research & get support & advice so in some ways I feel less scared about treatment. But I am now kind of "bring it on" and just want to get going but have to wait til I am fully recovered first - Plus I have a rotten cold at the mo so no way could do chemo yet!!!

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Re: Chemo headache

Hi Milly,

I wish I had known about it before I started, but I'm glad I got it sorted. The combination is really good and would definitely recommend you mention it to the onc, don't take no for an answer because there's nothing you can do if it starts in the middle of the night, as mine did.

I also get sick with migraines, but that was one side effect I didn't get, although i felt sick, the meds did their job and stopped anything happening, I hope you find the same.

When do you start?

Richard

Re: Chemo headache

HI there

Just to say I had pharmacy strength co-codamol (30/500)& ibuprofen post surgery with tramadol "on the side" so to speak if the others didn't work. you can actually take all 3 together but yes you do need plenty of de-bunging up stuff as well - I use senna & it works a treat. Also plenty of water as they dehydrate you which I think is what causes the constipation as well.

I haven't started chemo yet so read this to get an idea of possible SEs as I do suffer from headaches & migraine generally so now I will also flag that up when I have my ONC meeting so thanks I may not have thought to before. I am usually sick with my migraine so now methinks I may be in for a grottier time post chemo - YUK!!!!

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Re: Chemo headache

No Elinda, I don't mind you asking at all, I would have done!

Re: Chemo headache

That's good, hope you didn't mind me checking. So pleased it's providing relief. Elinda

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Re: Chemo headache

Yes, both have been prescribed. I was a little unsure initially because the onc had said I could take both, but the pharmacist told me to take one or the other. I spoke to a doctor relative of mine who also told me taking both at the same time was ok. I would recommend it to anyone who is suffering from bad chemo headaches.

Richard

Re: Chemo headache

Glad you managed to relieve the pain a bit. I was told I could have tramadol or co-codamol, was never offered them as a combination. Presume they have both been prescribed?

Glad you find the notebook idea helpful. Especially good when you take tablets in the early hours as it's hard to remember the time when you fall asleep.

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Re: Chemo headache

Good you are managing to get some sleep! Tramadol also worked post op for me. Can't sleep much either. Must be a side effect of having/living with BC. Hopefully, you are getting enough to get through Chemo which is tiring by itself, you need your strengths during treatment. Take care. Tina.

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Re: Chemo headache

Hi,

The combination of co-codamol and tramadol seems to be working, I take them both before i go to bed and have slept through to about 4 am each day so far, but then they wear off and the headache wakes me up so have to wait for the next lot to start working, but it's much better than it was.

I've got some sennakot tablets for the constipation, although, so far it hasn't been a problem.

You're right about keeping a note of what you've taken, it's difficult to keep track, I've got a note book, thanks for the advice.

Sleep well.

X

Re: Chemo headache

Emma - I think they prefer movical to lactulose these days. Don't forget you can get as a free prescription rather than buying over the counter.

Re: Chemo headache

The other option if the codeine doesn't help is tramadol which I think is a tiny bit stronger. Talk to your Onc to see what s/he advises. I found tramadol made me more nauseous but I was suffering badly with nausea anyway.

One thing I did think of is that when your head is bad and you feel groggy and your sleeping alot it's quite hard to keep track of tablets. I kept a notebook and jotted the time I took my tablets so I could be sure I didn't overdose.

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Re: Chemo headache

ah yes movicol! thanks Elinda!
xx

Re: Chemo headache

Richard, I took full strength, maximum dose of co-codamol (codeine and paracetamol) for over 6 months. I had no trouble coming off it either. I did reduce the dose down over about a month to be on the safe side. Haven't needed it since and then was about 11 months ago.

As Emma says it is constipating so movicol is good.

I was worried about all the drugs too but the doctors didn't seem to be. All my liver and kidney function tests remained fine and remember they are doing bloods before each chemo. I did stay clear of alcohol.

take care, Elinda

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Re: Chemo headache

Hey Richard moan away, I used to! I think we're entitled!
The best thing about chemo is being able to sleep a lot. I used to get annoyed at how much I slept, felt like I was missing out on things, but the longer you sleep the faster the 'good' days come around.
I had no problems coming off codeine at all, they do 'bung you up' a heck of a lot though so gulp down plenty of lactalose, and again plenty of water.
I wouldn't worry about taking the tablets though, its only for a short amount of time. I didn't suffer with heartburn, but once after taking 4 lots of ibuprofen in one day I got it really bad so tried not to take too many after that.
Does your chemo nurse call you a few days before your next chemo is due? mine did and I used to tell her just how bad my headaches were, that used to give her chance to change my meds around. Maybe you could tell your nurse what worked for me? give her some notice to get things in place though.
This worked for me... 2 codeine half hour before getting there, piriton, 'E' part of the chemo, steroids, then finally the 'C' part but very very slowly. I did still feel the 'swimmer nose' as she was doing it but it was short lived and I was pleased that we finally got the order right, (even if it was my last one!).
I hope your good days come around quickly Richard, can you get yourself a box set of dvd's and stay in bed, I used to wear an eye mask and listen to my dvds as I couldn't face watching them with my poorly head!
Good luck! Emma x

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Re: Chemo headache

Hi Emma,

That's really interesting, I'll speak to them next and see what they can do. I'm concerned about all the extra drugs I'm forcing on my body, especially my liver and kidneys, I'm sure it'll be ok, and i doubt there's a choice, either spend the next 6 months having a horrendous headache every third week, or risk doing some damage.

It sounds like we have the same symptoms, lucky you being away from it now, how did you manage stopping the codeine, I would have thought you had built up a slight dependency after that long? That's something else that worries me, but again i can't see there's a choice if what you've suggested doesn't work.

I'm having a really bad day today, so I probably sound a bit moany, thanks for the advice.

Richard x

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Re: Chemo headache

Hi Richard I finished chemo on the 8th Sept, and suffered after each one for up to 10 days with a horrible headache!
I had EC chemo, and it was everytime she gave me the 'C' part my nose went all fuzzy like when you get water up it, is that the same for you? Anyway, throughout the following days I had a headache like I've never had before, I've had migraines so I know it wasn't that, I ended up in hospital and they told me to take 2 paracetamols and 30mg codeine every four hours, AND ibuprofen if needed, they didn't shift it!
I also ended up having a brain scan after clling NHS direct to see what extra meds I could take ontop of the ones I was taking!.
My 6th chemo went great! No headache! The nurse gave me some piriton before she started and this helped with the 'tingly' part of the headache, she then put the saline on the 'faster' drip, and she injected the 'C' chemo so so so slowly. I took 2 codeine before I got to the hospital, and 2 paracetamols as I left, but honestly the final chemo's headache didn't appear at all!
I hope I have helped you a bit? Good luck with the rest of them! drink plenty of water too!
Emma xxx

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Re: Chemo headache

My appointment went well, the onc has given me tramadol and co-codamol, which having tried last night, have pretty much done the trick. Although I didn't sleep very well (i had my second session yesterday as well), being awake with just nausea was much more bearable than also having a migraine.

I've read that tramadol doesn't suit everybody, but I think for a night time headache they do suit me, I'll keep you posted.

Thanks

Richard

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Re: Chemo headache

Richard, sounds like you need a good talk with your onc re your SE's, no one can be expected to cope with migraine and Chemo every cycle. It's awful having migraines as it is. I am sure they will look into giving you medication to settle the headaches! Good luck!

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Re: Chemo headache

Hi Richard

I can't make any comment on chemo headache because I didn't have chemo but I notice you mention sumatriptan. I have very severe migraines ( which are worse with the medication I'm taking at the moment)

The sumatriptan stopped working for me a good number of years ago when my migraine pattern changed and it got much worse.

The doctor put me on rizatriptan which I take in the form of a 'melt' which is like a foam tablet which just melts on your tongue. I know it also comes in a nasal spray. The 'melt' type has been very successful for me. I just thought it might be worth a try while you're having such a bad time.

The best of luck. Migraine is an awful thing which is so debilitating I do hope you get some relief, you've enough to cope with already.

Do take care

Jan

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Re: Chemo headache

Hi Tina,

Sumatriptan's great isn't it, normally anyway. They've not made any difference with the post chemo migraines, i took as many as I could and they just made me feel more sick. It sounds like I'm moaning, sorry, I don't mean to, I had meningitis when I was younger which left me very sensitive to headaches.

I hope the team are sympathetic, I don't want the same to happen again.

Richard

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Re: Chemo headache

Hi there, your bloodcount can effect headaches, I think if you are prone to headaches/migraines chemo can make them worse, I had a few bad migraines on tax and took sumatripan. But checked with onc nurses first that it was ok. Best contacting your team to get the right treatment. Totally sympathise with you. Having a migraine on top of chemo is rubbish. Good luck.

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Re: Chemo headache

Thanks for the advice.

I'll phone the hospital tomorrow and see what they say.

I hope one day i'll be able to give advice out instead of always asking for it.

Richard

Re: Chemo headache

Hi Richard, I'm 36 too and was dx in march with ductal cancer. I have finished a rive treTment, save for tamoxifen now. I didn't suffer headaches and feel really sorry for you that you are. Just wanted to mention that co codamol bunged me up and added to bad constipation and pains in my tummy, so if you are slso differing any of these side effects maybe think carefully about it! Why not phone your oncs secretary or bcn or Chemo unit and tell them how bad thd headaches have been so they are ready and prepared to help, plus takes the pressure off you when you get there.

Stick in there, it will pass.

Vickie

Re: Chemo headache

Dear Richard

sorry to hear you're going through this. Ibuprofen is probably not a good idea, i was told not to take it all during chemo. It's very harsh on the stomach as is the chemo. It sounds like you need something stronger such as co-codamol. You can buy a lower dose of this over the counter but if your headaches are severe you may need the higher dose (I think it is 30 mg) - anyway this would need to be prescribed. Another option is tramadol but that's very strong.

Dehydration definitely can make headaches worse so as Ali suggests, make sure you keep fluids up. If you are struggling with fluid intake immediately after chemo as I did due to vomiting, then it is worth asking the chemo nurse to give you an additional bag of fluid.

Nothing I did eliminated the headache but the co-codamol definitely took the edge of.

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Re: Chemo headache

Thanks Ali.

I'm prone to headaches and suffer from migraines which haven't help. I've been taking paracetamol and ibuprofen, but they didn't scratch the surface.

I think I'll have to ask the onc when I go back on Thursday.

Richard

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Re: Chemo headache

Hi Richard
We call it chemo hangover. I found it got worse if I was tired and had not drunk the required 2+ litres of water. Have found with FEC4 this only lasted a few days and was not as severe as before. I found for me a combination of ibuprofen and paracetamol kept it at a cope-able level.
Hope this helps,
Ali.

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Chemo headache

Hi,

I'm a 36 year old man who is having epirubicin for BC diagnosed a couple of months ago.

I had my first session just over 2 weeks ago and got a really bad headache for about 7 days. I wanted to find out if anyone had experienced this and what they did so I can prepare myself for the next session this week.

Thanks for your advice.

Richard