Migraines in UC / PSC

I've never posted a question myself and having had a bit of a rough time recently I thought who better to ask than you learned folk!

This one is possibly primarily for those who suffer from UC / PSC... although PSC suffers alone may be able to relate.

Has anyone suffered migraine pain and if so do you think it gets worse when approaching a 'flare-up'?

I've suffered migraines on and off for a number of years, generally a good number of months apart and very rarely to the point of nausea and sickness. Except this time last year I suffered from a string of 'proper' attacks and then again early this year before getting hospitalised with a UC flare-up. After that things went reasonably quiet until recently. In the last fortnight I've had at least six 'proper' attacks resulting in me to either being off work or returning from work... Not fun!

I've had medication from my GP but these don't seem to be working very well. I still find I'm having to ride it out.

Can anyone shed any light as to why I'm getting these? Has anyone else had a similar experience?

Note: Blood count is fine and I've checked my BP twice during attacks and that too has been well within the normal range.

I’ve had migraines for 16 years and I’ve found that my biggest flare ups are with hormones, diet, stress, caffeine, or dehydration. All PSC aside, take a look at these things first. Food journaling and self reflection help keep them under control

My experience agrees with Emily. I have PSC and had UC (removed my colon last Feb so technically I don't have UC anymore). My headaches seemed to be more about stress, hydration, seasonal changes related to sinus pressure, diet and sleep. Hope you get it sorted out though. Good luck.

Emily said:

I've had migraines for 16 years and I've found that my biggest flare ups are with hormones, diet, stress, caffeine, or dehydration. All PSC aside, take a look at these things first. Food journaling and self reflection help keep them under control

My 9 yr old daughter also suffers with migraines and daily headaches that came on only after PSC and UC flared up and was diagnosed. She is not on medication for any condition, and is doing well managing through diet, probiotics, supplements. Her neurologist said the pain medication for migraines would not be appropriate for her, since all cause diarrhea and/or liver problems. Her headaches seem to be worse when symptoms are worse, and also when she is fighting any virus/getting sick. Her gastro and hepatologist don't believe the headaches are related to the autoimmune conditions, but I disagree and think that it would be a very strong coincidence that they happened to come on at the same time especially considering her age. I would be very interested in hearing how others deal with headaches. I wish you the best, Priya, in figuring this all out!

Sorry for the late reply all... been a roller coaster couple of weeks. The high being my much needed birthday break! :-)

I saw my gastro doc last week who confirmed that the UC is flaring up again and that the LFT's are slightly elevated again as well, as I suspected (weird how well we end up 'knowing' our body eh!)

Emily, Achtun3945 - thank you for your reply. I am trying to keep an eye on my diet and stress level at the moment. Hopefully that will help. I've managed not to come down with another migraine in two weeks now. Fingers crossed that the last of this cluster for a while!

Stephen - I don't take B12 shots at the moment. Although, I do want to get that checked next time I get my blood tested.

Cookie - I did ask the question about the migraine link to flare ups and, as suggested by the others, I was basically told that whilst there is no proven direct link there could be indirect links to both, like for example stress. I'm just keeping an eye on things for the moment to see if there are any emerging patterns.

I was also told by my gastro doc that one of the medications that I was prescribed for migraine pain management by my GP could aggravate the liver hence not to take it too often... I've not touched it since.

In my line of work, I come across many people and of these I've met at least two who have suffered severe migraines in the past themselves. One advice I got, apart from all the sensible things already mentioned, was hot towel presses (and by that I mean really hot). The chap felt that this increases blood flow to the brain and somehow helps ease the headache eventually. I've not tried this myself yet.

Another bit of advice I've had is if you suffer from headaches due to dehydration / low blood pressure, then drink a glass of water mixed with a little bit of salt. You'd have to be sure this was the cause though as introducing more salt to the body than needed is not recommended!

Anyway, thank you all for your responses. Much appreciate the support :-)