AIH/headaches: Hi I was Diagnosed... - British Liver Trust

British Liver Trust

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chris2591 profile image

Hi I was Diagnosed 7 years ago with AIH, and have been on and off steroids since then. I have recently ben told my disease has progressed to Cirrhosis and have had a biopsy to establish how much. I have always suffered severe headaches, but they are getting more frequent and lasting longer. During these spells, I am disorientated, cannot communicate and am often nauseaus/sick. I am worried as together with my increased liver damage that things are not gong well. I have an appointment in Nov to see consultant and am currently on 20mgpred plus Azathioprine 100mg. I use pain relief, ice packs, tiger balm, to relieve th pain, but sleep is the only real solution and the last one yesterday meant I slept for 24 hours, in between trying to relieve the pain.

Does anyone else experience these regular headaches and have you got a better remedy for recovery please?

7 Replies

Have you tried acupuncture yet. It helps my headaches.

Hi Chris 2591,

Based on my own experience which has been similar to yours i.e. diagnosed with AIH circa 7 years ago and which quickly progressed to Cirrhosis and then became decompensated: I was put on Prednisolone and Azathioprine and went through a period of what you now seem to be experiencing viz; general malaise and lethargy headaches and sleeping for long spells. Eventually my specialist took me off the Azathioprine and put me on to the immuno suppressant Mycophenolate Mofetil and since then there has been no looking back. Within a few weeks the general malaise and lethargy headaches and long spells of sleeping disappeared and it became possible to live a near normal life once again. I now take 5mg prednisolone daily (maintenance doze) and 1 grm of Mycophenolate Mofetil twice daily and fortuitously my Liver function tests are now generally always in the normal ranges and recent MRI scans reveal the level of inflamation and fibrosis is contained and being controlled so it seems the medication is doing what it is meant to do.

Like all medications they effect people in different ways and while the change over from Azathioprine to Mycophenolate Mofetil worked for me it may not do so for you but it may be something you might want to consider discussing with your specialist when you next see him/her.

I am not sure if like you I would use the topical ointment 'tiger balm' which I am under the impression may contain camphor etc. I would rather follow the general medical advice that Paracetomol is OK to take for relief of pains provided of course the doze taken is within the recommended medical parameters. However we all make our choices based on differing considerations.

Not sure if my own experience outlined will asist you in any way but thought i would communicate it to you just in case it might.

Hope you feel better soon.


Thanks so much for your advice, these spells are getting more frequent and I'm fed up feeling like this. I have an appointment with my consultant in the next couple of weeks so will ask about the medication you mentioned. Hope at last......

Yes for yrs sent hospital headaches then comes the sickness and nausea. So as well as hepatic stenosis early cirrhosis gastric reflux is what I get the headaches but I also have other things wrong but always headache then sick and insomnia sorry but I'm also need help if u get any answers let me no please

chris2591 profile image
chris2591 in reply to Faithfull

I really sympathise with you, they are debilitating and I lose so much time suffering these headaches like you. I find that I have disturbed sleep prior to them coming and so.I'm really tired then I sleep for hours in between trying to relieve the pain. What medication do you take, are you on similar stuff to me?? Maybe worth looking at finasolution,s post to see if med change would help you. I try to get good sleep, eat well and avoid processed food and drinks. It doesn't always help. I do know that I feel better in the summer months as the cold weather means my body has to work harder to stay warm and uses more energy doing so. Does anyone else notice this?

Faithfull profile image
Faithfull in reply to chris2591

I got small meningoma in my brain as I had a hairline fracture the headaches and sick bad comes every few months .

I have had mastoid operations and puss from ear no pain many infections also Otis media and vertigo on off I also have spinal stenosis and few more things I'm scared that as of all these conditions what's doing whatjust had hip surgery I'm trying best to eat healthy keeping active is best for me brain but me daughter told me drink water when I get up and that helps a lot and it's may sound silly but I never drink water for 7years alchole but as soon as me head starts I drink loads water hope you understood all that ADHD but I trying ,thankyou for feply

I had headaches on azathioprine also and I was only on them for 2 weeks I rang hospital and informed them I couldn't tolerate them and I took myself off them (not advising you to do that it was because I had an appointment with consultant a week later) anyway when I seen consultant he told me he was going to try me on mychophenlate as azathioprine is the cheaper version of that. I haven't started it just yet though due to WBC being low . Hope you feel better soon 😀 xx

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