• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Abdominal Migraines???

Location
Canada
ARGH!!!!!!!!!!!!!! The start of school has NOT been smooth. My son has been having more of his bouts of feeling terrible (tired, slightly queasy, pale, dark circles under eyes, sometimes sweating but no fever, occasional flushing of cheeks, low appetite, abdominal pain of varying degrees, and sometimes a headache). When he feels like this he looks terrible and he is unable to do anything except veg out in front of the TV. He has bouts of these symptoms every week lasting anywhere from 1 - 3 days, this past week he had 2 bouts back to back and was basically not able to function the whole week.

Docs say his Crohn's is under control. His CRP and ESR keep coming back normal. He had a fecal calprotectin done in April that was normal and we just did another one and are waiting to find out the results. His BMs are formed. He has no blood in his BMs. His perianal abscess healed a long time ago. He is gaining weight and is now above his pre Crohn's weight.

I got super frustrated this week as our GI keeps saying it is IBS in addition to Crohn's and there is nothing that we can do, well there is no way I can just accept that he will be lying on the couch for the rest of his life. So this week our lovely GI nurse (and she really is lovely) got the full brunt of my frustration with a very tearful phone call. I really had begun to feel like we had been given no hope of any of this getting better. My tearful phone call resulted in an appointment the next day with a different GI (ours was not available at the time). New GI and GI resident were a fantastic change. They finally listened to us! They still think it is functional abdominal pain but they are now starting to lean towards abdominal migraines. Once I got home and googled abdominal migraines I couldn't believe how well his symptoms match those of abdominal migraines.

I am a little disappointed that the first line of treatment they have given us is for IBS and not abdominal migraines. They want us to try a specific probiotic for about 4 weeks and see if that helps. I told them I wasn't willing to wait 4 weeks if it wasn't working and they said to call in 2 weeks if we see no improvement. The more I read about abdominal migraines the more I think that treating the actual migraine is the way to go but maybe I'm wrong and the probiotic will work and he can avoid more medication so I will give it a try.

I finally feel like we might be starting on a path to solve/manage all this!
 

my little penguin

Moderator
Staff member
DS had that dx once upon a time prior to crohn's dx.
Hugs we are still fighting the stomach pain here as well.

I wouldnt buy the ibs dx/ functional pain thing.
One thing our Gi finally is looking into for us Mast Cells.
Kids with Ibd have lots of them they inflame degranulate and the nerve cells near by send up pain signals up to the brain. Folks with ibs also have the same problem.
We are looking at h1 & h2 blOckers to block some of the effects.
We are also having his bioPsy slides from June stained specifically for mast cells .
Treatment in all cases is h1/h2 blockers + mast cell stabilizer regardless of the actual disease including ibs.
The drugs for abdominal migraines you may have already tried elavil and periactin.
They did nothing for us.
Another route would be Neuro since they can treat abdominal migraines as well.
 
I hope your son feels better soon :( I have heard of but never googled abdominal migraines. They sound a lot like some of the stomache aches my daughter has. There are times she says the pain is right around her belly button. She also gets migraine headaches (family history).
 
My son suffers from Abdominal Migraines. The trick is to catch them just as they start - my son used to get this glassy look in his eyes and sure enough in a half an hour he'd be in agony - throwing up for hours. So if you can monitor what his initial symptom is and get some tylenol into him it will head them off at the pass. He even stopped having them for a couple of years as we removed all the trigger foods - nitrates, caffeine, citrus,dairy, strobe lights(he hates school dances as being in a dark room with flashing lights is a trigger) etc. They came back during puberty somewhat and again once his diet was monitored they reduced. He hasn't had to take anything other than tylenol yet for them. He is at risk to develop headache centered migraines later in life so I am holding off as long as possible in moving to migraine medications.
 
Thanks all for the posting about these migraines and about the mast cells. I am going to ask our new doctor about both of these as Caitlyn continues to have pain even though the labs all show her crohns is under control. The prednisone is not helping this time so maybe it is something else going on such as one of these things.
 

DustyKat

Super Moderator
I'm so sorry to hear that your boy is having these problems Twiggy, bless him...:hug:

Sarah was diagnosed with Abdominal Migraine prior to her Crohn's diagnosis and from reading on this forum it isn't a rare occurrence that this happens. With you coming from the angle of already being diagnosed and thus far tests showing that his Crohn's under control then migraine may well be a possibility.

Sarah was prescribed Periactin and although it did nothing for her, since she didn't have abdominal migraine, it didn't cause any additional problems or side effects.

I hope you find solid answers soon hun and your boy has lasting relief! Good luck!

Dusty. xxx
 
Ellie received the diagnosis of abdominal migraine as well before her dx of IBD. I would proceed with caution as sometimes I feel this is an 'easy way out' for doctors to escape finding the real source of pain. Good luck!
 
True, that it in some instances abdominal migraines could be another misdiagnosis of IBD or IBS, except that removing the trigger foods and getting the tylenol into my son at the right time completely solved the problem.

I am keeping a close eye on both my kids as not only do I have Crohn's but so does my sister, making the kids have 2 1st degree relatives with it. Of the 4 kids between us, I am sure at least one of them, my neice, is already showing signs. I have tried to get my son seen by a pediatric gastroenterologist but he is living with his father who doesn't seem to think it is as good an idea as I do. He is also 14 so doing any sort of fecal testing is so abhorent to him, I can't get him to do some of the testing to eliminate any other sort of problem (parasites, stool culture).
 
Frustrating! My non-Crohn's son gets migraines. When he was younger, they presented as vomiting, not headache. He was on periactin to minimize their frequency from allergy triggers. He still uses Imitrix to abort it quickly.

I don't recall your whole history. If you haven't, I would have the docs rule out ulcer/stomach acid, celiac, med side effects. Seems the probiotic is a good idea.
 
I remember before Andrew was diagnosed they thought he was having abdominal migraines because my husbands side of the family do get migraines. However since he had the Modulen, he hasn't had one since, so I assume it was the Crohns' that caused his. Trying to remember what med they had him on but it's gone out my head!
 

Catherine

Moderator
My middle daughter had them with vomiting of bile. usually cause in her case by heat and not enough water but hasn't one in 7 years.
 
My son also had abdominal migraines. He would take Imitrex when the came on. The reason for his abdominal migraines were because of really poor eye sight and an allergy to almonds. Once we got his eyes checked and prescription glasses, the migraines all but went away. They only came back when his eye prescription didn't work anymore or he when he would take them off to swim, etc.
 
Location
Canada
Update on the abdominal migraines.

We have had some success (I think) at heading the abdominal migraines off by using tylenol (acetaminophen) as they start. In the past we didn't try the tylenol until the pain was pronounced and at this point it never did anything. On the advice of our pediatrician, he is also taking a higher than normal dose of the tylenol (800mg) at the outset of the symptoms starting.

I've got my fingers crossed that this will continue to work. He had a bad day yesterday but he claimed it did not feel the same as the usual symptoms and I think it was likely due to a reduction in his dose of prednisone. This week he had 3 full days at school and my happy son was back for awhile. Yippee!!! :dance:

I expect that he will not be able to continue taking the tylenol as regularly as he gets the migraines (possibly everyday) and they are going to want to move him to a different, more prophylactic, medication. We will see how next week goes...

We have also started supplementing with a high dose of riboflavin (vitamin B2) as there has been some research suggesting that it can reduce the frequency of migraines.

http://www.ncbi.nlm.nih.gov/pubmed/15257686

So far I don't think the probiotic is doing anything. We are also trying the FODMAP diet and I don't think that is doing anything other making it hard for me to think of what the heck I'm going to feed him everyday.:hallo3::hallo3::hallo3:
 
How long has he been on a probiotic?
It can take up to a month to work.
I'm glad for now he's found something to help.:thumleft:
 
No your right it won't do it on it's own but.....
Grace's fancy stool test showed her good bacteria in her gut we're at good levels which will help her fight what's going on in the gut.
So the least it can do is help support her body.
BTW, it took three different kinds of probiotic till we found one that helped the most.
 

Tesscorm

Moderator
Staff member
I'm happy you're seeing some of your happy boy! I hope either or both the B2 and probiotic start to make a difference!!! :)
 

DustyKat

Super Moderator
Thanks for the update Twiggy. :)

I suffer with regular migraines and also use a higher than normal dose of Panadol at the first sign of one coming on. I get visual aura's so they are easy to pick. It doesn't always work but I would say most of the time it does greatly reduce my symptoms and I manage to sleep them off without too much bother.
I hope the prophylactic medication works hun and your boy has one less thing he has to deal with, bless him. :hug:

Has he had Iron Studies done lately?

Dusty. xxx
 
That's good that he managed all that time at school. Hope the Tylenol does the trick for now so he doesn't have to suffer!
 
Hi

I read the posts thinking how much it was like what my son 14 is going through now. he goes from one bout to the next and has not been to school more then a few days this year so far. we are pulling our hair out thinking what to do next.

we started with sandomigran but the side effects are very bad
then periactin it seemed to work but after 5 days he has a reaction and could not breath and had to go to hospital

now on endep that did not work at all

we are now going to a naturopath and trying probiotic as well

witch doctor might be next!

Rod
 

my little penguin

Moderator
Staff member
Has your child seen a pediatric Gi or pediatric neurologist ?
They can do testing and prescribe things to help with abdominal migraines .
 
Hi, am new on here but my daughter is having her 2nd ever Abdominal Migraine and has been throwing up about 5 times a day for 3 months now. Usually Laroxyl (amitriptylline) works, but as soon as we are told to start reducing her dose, the symptoms usually restart, and this time it hasn't worked... yet ... anyway, for those who haven't tried it yet maybe it would work for you? It was like magic when it worked in the past. The key seems to be finding the right dose, sometimes higher than Drs are comfortable with ... and then getting them to agree to keep the dose stable for 3-6 months ... well we'll see anyway, if it starts working again soon
 

CarolinAlaska

Holding It Together
Tinkermax, I'm sorry your daughter is suffering so much from that. Does antinausea medication help? Sounds horrible.
 

my little penguin

Moderator
Staff member
Is she seeing a pediatric Neuro who specializes in migraines?
They tend to be a lot more aggressive with meds .
DS has chronic migraines and at one point prior to crohns dx had cyclic vomiting and abdominal migraines as a dx .

Good luck
 
Hi Carolin - yes she has tried 3 different anti nausea meds but none made any difference so she doesn't bother any more, and she has an appointment with a Neurologist in January so we'll see what that brings, IF the meds haven't started working by then ... please god they kick in soon though. Before xmas would be nice! :)
 
Thank you so much - it worked! The meds seem to have kicked in on 23rd Dec, so I got the only xmas present I wanted :) She will stay on this awful high dose of amitriptylline for another 6 months to ensure she is stabilised, then we'll try reducing them again and pray it doesn't all kick off again...
 

CarolinAlaska

Holding It Together
Tinkermax, I'm glad to hear it. I am saying another prayer that she will stay well throughout this whole process!
 
Top