Anyone know about abdominal migraines? - National Migraine...

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Anyone know about abdominal migraines?

Blackedout profile image
13 Replies

Hey, so a little back story . I've always had tummy issues growing up and headaches that grew into migraines the older I got. I've gone through different drugs before finding one that actually works. However, my mom has the same issues as me , literally every symptom is the same. Recently her doctor said based on her episodes that she may have something called abdominal migraines and that it is hereditary so they are in the process of getting her tested. If she has it then I need to get tested.

Just wondering if anyone has any experience with this, I know it's not as common since it's usually hereditary but thought I would ask on here first. They said stomach issues and migraines go hand in hand somehow and that treating the migraine usually helps the other symptoms but that all I know really lol

Any tips or advice helps :)

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Cat00 profile image
Cat00

Abdominal migraines are usually seen as migraine in children, I was once told by a doctor I couldn't have them as I was an adult. But what really interests me about your post is you say you guys are getting tests, what kind of tests? I've never heard of any tests for any kind of migraine?

Blackedout profile image
Blackedout in reply toCat00

So I know there is no actual test to diagnose it.the doctor just tells you their best guess as to what they think your diagnosis is 😒 that being said they test to rule out other things and go based off your symptoms. So far she has had a few ultrasounds, colonoscopy, scoped down into her stomach to look around, blood tests to make sure she isn't lacking in things and to make sure her blood count isn't out of sorts( it was a bit). They have her booked for x-rays as well. She is being referred to a specialist and we will go from there.

My only thing is I've been scoped both ends, ultrasounds and blood work. The doctor said he thinks I have ibs but once again there is no actual test for that either. So once my mom gets diagnosed I have to get reassessed... it's a super long annoying process to find out what they "think" may be wrong

Cat00 profile image
Cat00 in reply toBlackedout

Oh god that's sounds awful. There is a history of migraine in my family so they didn't bother looking any further. I have IBS too which they did precisely no tests for either but bc I had anxiety and depression they generally put everything down to that.

But I don't think I could of coped with all the tests you guys have gone through anyway. Plus I was quite young when diagnosed with a lot of my conditions so they just assumed it wasn't cancer etc. I had quite a few doctors tell me I'd be dead by now if I had anything progressive. As far as I know there were about 30 different syndromes covered under the blanket term IBS anyway so it kind of covers a lot of horrible things.

Blackedout profile image
Blackedout in reply toCat00

My family has said the same to me that if I was really sick I wouldn't still be here lol

I find it odd that they didn't do tests since you have anxiety and depression...I have both and they did blood tests before getting me on meds for them. Made sure I was actually depressed and not just lacking certain vitamins that sort of thing.

When I was younger I know I felt like the doctors didn't believe me when I told them what was wrong but having found a new doctor as an adult I've found they take you a lot more seriously. Any time I tell the doctors of symptoms that I would usually require tests to determinewhat's wrong, I make sure they know if I want them done and if they refuse I ask them to write in my file that the doctor refused to do it. I've had no problems getting testing since

Cat00 profile image
Cat00 in reply toBlackedout

Well I think this was 25 years ago there wasn't much knowledge of the sort of chronic conditions I had. I was at boarding school so they didn't send me to any doctors anyway and I lived in Saudi Arabia so there wasn't much there in the way of doctors. By the time I was really struggling through university I'd had so many bad experiences with doctors I wouldn't go to them for help. Things were very bad for a long time to be honest, it was quite a break through when I got to a neurologist that could treat chronic migraine and like you say to be believed.

Blackedout profile image
Blackedout in reply toCat00

I avoided doctors and suffered with it when it got really bad for the past 5 years. I hated doctors because all they seemed to do was waste my time and have no answers. It wasn't until my migraines started happening 10 plus times a month and my stomach issues got worse around this time as well. I was missing so much work I had to seek help and I'm thankful when I did I was directed to a doctor that actually listened :)

Cat00 profile image
Cat00 in reply toBlackedout

Aggh doctors aye? Even when I got to five and half stone the doctors didn't seem unwilling or unable to help. When I had a migraine that went on for 6 weeks I just collapsed, not for the first time but much worse this time I had to move back to my parents (with my husband). I basically lost it had a full nervous breakdown eek I d8dnt sleep for 4 nights at a time, then gradually after a year I gradually managed a couple of hours a night and descramble my brain. I was having 20 days a month of migraine, after 6 years of arguing I was finally given Botox which halved my migraines, it was a wonderful moment! I've never been able to work unfortunately.

Blackedout profile image
Blackedout in reply toCat00

I'm glad you found something that worked! I started on topiramate for my head but that only made things worse so now I'm on aimovig auto injectors that a take two of a month. I've always wanted to try botox though out of curiosity if it would work

Cat00 profile image
Cat00 in reply toBlackedout

I had Botox for a few years but had to come off it twice to have my 2 kids. I'm on Ajovy CGRP self injector now too, similar to what you are on. I think it works better than botox. I tried about 13 different drugs before botox, had to campaign to get NICE to sanction Botox, it took a few years.

Gambit62 profile image
Gambit62

there is a podcast on migraine in children and that talks about abdominal migraine. nationalmigrainecentre.org....

It's something that I had as a child and I think the legacy for me is that the gut is severely affected during a bad migraine with extremely violent gut spasms.

It makes sense as part of migraine seems to be about signalling mechanisms in nerves, including nerves that run across the face and nerves that run down to the gut.

This BBC podcast is really interesting - you may need to restart it from the beginning

bbc.co.uk/sounds/play/m000vp2z

Blackedout profile image
Blackedout in reply toGambit62

Thank you! I will have to listen to it :)

Onthemove1971 profile image
Onthemove1971

YES!! my son has abdominal migraines ( Or cyclical vomiting syndrome). He is 14 years old and it took us 7 years to diagnosis him. We are going to change him to a new medication.

Here is information:

rarediseases.org/rare-disea...

The difference is CVS is they happen at the same time with no reason.

I have migraines and my mother has migraines.

Here are a few things that helps us: When symptoms come on take all medication at one time ( anti-vomiting med, OTC migraine medication and Migraine medication). We avoid anything fried or spicy. We make him stay hydrated all day long and follow the migraine life.

Also please listen to the Podcast- Heads up, there is an episode on Abdominal Migraines.

Let me know if you have any more questions.

Blackedout profile image
Blackedout in reply toOnthemove1971

Thank you I will :)

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