Did Migranes act at the trigger?

[deedee]

When I was 17/18 I suffered the most horrific migranes. I hear other people chatting about them and wonder if this was the trigger? I was not diagnosed until the age of 33 but was obviously still unwell. Just a thought, Racking my own brains for the trigger! Other than childbirth that it.

[JerseyChris]

Sorry but I didn't have any migraines until after I was diagnosed. There have been so many speculations as to the triggers but still a puzzle methinks.

[deedee]

You are right Chris but I just wondered, there are quite a few who have mentioned migraines.xx

[janethomas Moderator]

I only got a migraine from time to time, My Mother use to suffer really bad with them when I was younger and they never left her till she went through her menopause. I suffer from PBC but my Mother doesnt.

[zipitydoo]

Sorry but I don't suffer with migraines.

[cowren]

I don't have migraines but did have horrific headaches due to degenerative disc disease in my neck had first pain block injections 2months which have reduced the headaches which is due to muscle tension in neck and shoulders

[cee_cee]

Have suffered with migraines since I was a teenager and still do, but not so intense or so frequently now. Have PBC with possible overlap syndrome, but really don't think the migraine has anything to do with it.

[Jtxx in reply to cee_cee]

What is your possible overpal symdrome with? I have been diagnosed with AIH/PBC crossover syndrome a couple of weeks ago.

[cee_cee in reply to Jtxx]

Yes, PBC with overlap tends to be, AIH. My consultant thinks this is probable due to AMA and ANA positive results. Blood work is good at present and doing well on URSO, so under care of GP for now. But suffering with stomach a lot and lethargy. Do you have stomach problems??

[Jtxx in reply to cee_cee]

I have dreadful indigestion with reflux but that only started when I was put on Aziathioprine a couple of weeks ago. I have now been put on Omeprazole to counteract it. I also suffer from migraines but have done so for nearly 20 years. Another point is that I do not have the AMA antibody (to do with PBC) but I do have the SMA (to do with AIH). What is the ANA to do with? Why are we all so different but all have the same condition? That's what I find frustrating about the whole thing at times.

[Jtxx in reply to Jtxx]

Another point is that my liver biopsy came back with PBC but not AIH but that might have just been at that part of the liver? Go figure????

[cee_cee in reply to Jtxx]

ANA - Antinuclear antibodies.

This is interesting...

Overlap syndromes between different autoimmune liver diseases are frequent. They are difficult to diagnose, poorly defined, and not only pose a diagnostic problem but also lead to confusion regarding the appropriate treatment strategy. Overlapping autoimmune diseases of the liver are present in about 18% of patients. In about 5% of patients with a primary diagnosis of AIH, signs and symptoms of PBC (bilirubin and alkaline phosphatase elevation, liver biopsy) exist. On the other hand, 19% of patients with a primary diagnosis of PBC also have signs of AIH

[hopesprings]

Hi Deedee,

I've had migraines since I was 16 but only one or two a month. In the last two years they increased in frequency and severity to the point where I now have 13 consecutive migraine days out of every 25 days. They are linked to my period and begin 5 days before day 1 every month. I was diagnosed earlier this year and asked the Consultant if the migraines were linked to the PBC and he said absolutely not. So I am trying everything from HRT to craniosacral therapy and supplements to try and get them under control.

I too was curious about what triggered my PBC, I am very sensitive to pollens & have food allergies & eczema etc and wondered if a toxin from food or nail varnish, that I used to wear very occasionally, were the cause. I don't beat myself up about it though, just try and gather info and eat and live as healthily as possible to give my liver the best chance.

[Cristina_Romania]

As an (almost, not entirely) ex-member of the Migraine Club, I strongly suggest to use, just as the first signs of ti appear, some peppermint oil on the forehead and a drop on the tongue too. It sometimes may help even to avoid the need to take a painkiller.

Also, breathing exercises - deep breaths in and out, each of up to 10 seconds, with a pause between the two (of also up to 10 seconds). Might sound too simple, but as a member of the club I know that oxigenating properly and slowly the brain can be helpful too.

Accupuncture has helped tremendously in my case, but again, this option needs to be assesed together with your doctor and then an accupuncture specialist, considering your PBC and any other personal circumstances.

Good luck and a merry day to all

[hopesprings]

Hi Cristina, I will definitely try peppermint oil. I'm also using feverfew, butterbur & vit b2...anything to avoid drugs like Topiramate which was vile! I'm also using HRT patches for 10 days a month. I'll try your tips and let you know how I get on. Thank you.

[Totally_Tracy]

I too get migraines, and have had them since teenager, but these have increased in frequency and severity over recent years, so that I'm getting at least one a week, as opposed to a few a year, I put this down to the fatigue of pbc, rather than the other way round. Interesting to know many of you get them too.

[MarilynC]

I don't get full blown migraine, but always have a really bad headache after lunchtime each day (and it is not down to what I eat..I have been down that line of self investigation).

So is this another "side" symptom of PBC ?......any physicians out there to answer ?

[Jtxx]

Have relpied to DeeDee's specific question to me but on a general note I have suffered from migraines for nearly 20years. I tend to get them when I am tired, stressed or my eyes are strained. i have special coloured lenses in my glasses which I wear at work although I don't have a prescription! Never really thought about it too much although I have been getting headaches in the last couple of weeks but have put it down to the side effects of the drugs I am on.

[Val02]

Im not a long term migraine sufferer, but I have been getting them for the last couple of years since my diagnosis of PBC. Strangest thing, they only come at night while I am asleep and I wake in the middle of the night with them.

The docs are confused as to why?

[Cristina_Romania]

From my migraines experience and what others taught me:

- it is important to differentiate between "normal headaches" and migraines.

- if migraines, it's very important to stop fearing them - I was so scared when I felt it started, because it knocked me down, that I immediatelly took 2 strong pain killers (which had a perverse effect and sustained the pain, that s why other 1-2 pills a day where sometimes needed).

- evaluate your pain on a scale from 1 to 10 (the strongest). Have taken this tip from more experienced migriane people. It helps you have a clue on how strong it is, evaluate if various things you've done have helped or not.

- start thinking you Can live with migraine, you Can manage them (medicines, natural remedies, breathing, meditation, etc). For those for which migrianes are like a terrorist you dread, life is really hard when the terrorist shows up, I know that.

- make sure migraines are not "nurtured" by some undiscovered tooth infection. This is very often the case.

May At Least migraines stop being an issues for PBC patients

All the best.

[louise38]

hi i suffer with hemopoligic mirgarines im waiting on botox treatment for them im in and out of hospital and have had strokes due to them i see a neuro nurse for days im stuck in bed and carnt move ive had them as long as i can remember i have a diary of foods i eat and drink nothing triggers them as far as they can see ive had tests after tests dne meditation the works i no how you feel and i hope that you get sorted out soon