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Migraine And Crohn's Disease Support Group

Interesting connections:
Prevalence of migraine in patients with celiac disease and inflammatory bowel disease.
http://www.ncbi.nlm.nih.gov/pubmed/23126519
CONCLUSIONS:Migraine was more prevalent in celiac disease and IBD subjects than in controls

Mucosal histamine content and histamine secretion in Crohn's disease, ulcerative colitis and allergic enteropathy.
http://www.ncbi.nlm.nih.gov/pubmed/7549499
In inflammatory bowel disease histamine content and secretion were found to be significantly increased particularly in affected mucosa of Crohn's disease and ulcerative colitis than in unaffected tissue or in healthy controls.

Histamine in migraine and brain.
http://www.ncbi.nlm.nih.gov/pubmed/24433203

Migraine Attacks Shortened by Diamine Oxidase Supplements.
http://www.medscape.com/viewarticle/811920
 
Since my GP put up my dose of amitryptline to 100mg, my migraines have been so much better. Although for some reason I have been smelling gasoline for a few days so think one is brewing. Now when my head starts throbbing I immediately take 50 mg of amitryptline and it staves it off.
 
I've suffered from migraines for years. Ironically, it was drug-induced lupus from Humira that triggered my migraines to start up. Fun stuff. I am now on 20mg Amitryptiline and 50mg Zonisamide daily; that helps a lot, but I do still get migraines quit frequently.
 
Subscribing. They've come back on almost on a daily basis. Guts are still behaving themselves though. The headache is mild compared to the ones I've had in the past, I just feel a bit nauseous with them. I guess I should get my eyes tested - it's been a while. And I'm on holiday from Friday so will see what happens. Work has been really intense and stressful and I'm feeling pretty burnt out, so I guess it might be that triggering them.
 
Hi,
I was diagnosed with Crohns on 1993, had bowel resection same year.Since 2009 suffered with migraine. Have to take Topirimate. The pain is always in the same place, over right eye and back of head. Most days I feel in a fog. Does this happen to anyone else?

Thanks
 
Hi Scooby

They tried me on topirimate when I was diagnosed. I was on a really low dose, but had the fogginess. I was not interested in food, lost a heap of weight, and lost my mojo - and personality - it was like no-one was home. It was a bit scary! - You know something is wrong when I son't want chocolate! Thankfully the neurologist listened to me, and changed me to sandomigrin. I fully reccomend it, though I understand that the next normal thing they try is beta blockers, but this would have lowered my blood pressure too much.

The sandomigrin helped, but I was also told to take magnesium. The magnesium has helped the most, which is interesting, and I have also found that one of my triggers is gluten (leaning over is another one, so I use that as an excuse not to do housework sometimes!), also cold breezes or drafts indoors or out! - ! have you figured out what your triggers are? Some people find that artificial sweetners, sugar, chocolate, cocoa, coffee (and many other things) can cause them.

I would head back to the person that prescribed the topirimate to you. I think that there are other options you can try, and if they don't work you can always come back to it. I think from memory that it is noted as a side effect - some anti depressants can cause the same effect, and it is the same approach, you just try a different one ( though you might have to taper the topirimate)

Grumbletum - I have found that when my neck muscles are really tight I get migraines. I go to the chiropractor and for massages occasionally to get straightened out:) I think that this is part of why I get them when stressed, also I find that I need more magnesium when I am stressed for some reason! Best of luck with
 
Hi,
Since starting on Topirimate, my memory has been terrible. I used to be so good remembering dates, names, faces. One time it took me half an hour to remember my Doctors name. I thought something was wrong until she explained it was the cocktail of tablets I am taking for my various problems. I think thats why I feel in a fog
 
Oh, hey, this is a recent addition that applies to me. I had a history of bad sinus headaches, but after the Crohn's started, I got headaches from dehydration and then migraines, particularly after starting Humira it seems. But, the Humira has been doing a lot to control the Crohn's symptoms, and I'm not sure it's causing the migraines in the first place.

Mine always start on one side of my head toward the front, usually in the temple, and then spread to the other side. Sometimes it'll last as both sides for a long time, sometimes it will fade from the starting side. Occasionally it seems like it's my entire head, my neck gets sore. Over the first year, they got progressively worse and more frequent. Prescribed sumatriptan tablets to take in response, eventually had one that didn't respond to it and went to the ER about it. Got butabitol-caffeine-acetaminophen-codeine caps for what I call the "super migraines" and the overall frequency (normal and super) got to once a week, some migraines would also linger on for 3 days. GP put me on increasing doses of propranolol with only minor improvement, but I was feeling sluggish and vague. I went to see a neurologist, he switched me to topamax and got me sumatriptan injections, also recommended a better magnesium supplement as well. The topamax has reduced my frequency and some of the intensity. I'm not as sensitive to my triggers anymore, but I've still had a couple of super migraines in the 3 months since starting topamax, and one that didn't quite clear up for over 3 days.

Ok at the moment. I'm on a fairly low dose of the topamax still, so the side effects haven't been bad for me. Neuro is also working with me on weight loss (I'm one of the exceptions with Crohn's, I'm overweight) because fat cells produce estrogen and that in turn can increase the chance of migraines.
 
I'm just going through the diagnosis process -- I've had the colonoscopy and blood work, and I'm waiting for a CT scan. Still have to do stool collection to rule out parasites and bacteria. I've had digestive issues forever but never saw a doc until I started bleeding in February. I've also had migraines forever. Most of my triggers have been smells, especially things that have petroleum-based products. I'm also sensitive to weather changes, and after my kids were born, I'd get pre-menstrual migraines. Fortunately, my GP sent me to a nuerologist about 10 years ago and he put me on naratryptan. Instead of taking enough decongestants and Tylenol/Motrin to choke a horse, I now just take 1 naratryptan and the skullcramp is usually gone within an hour.

Reading that there may be a connection between Crohn's and migraine is very interesting to me, so I will be watching this forum closely for any new information!
 
I recall reading somewhere that there may be an inflammatory component or cause to migraines.

I sometimes had what I considered really bad sinus headaches, years before the migraines started, which would lead to me taking multiple decongestants and allergy medications, and a couple different pain relievers, sometimes just with the result of taking the edge off so I could get through what I needed to do or go take a nap. I don't think those were actually migraines, but they were approaching it in pain level.
 
Are you getting enough fluids? Also, when the barometric pressure changes drastically for some it can cause migraines.
 
I recall reading somewhere that there may be an inflammatory component or cause to migraines.

I sometimes had what I considered really bad sinus headaches, years before the migraines started, which would lead to me taking multiple decongestants and allergy medications, and a couple different pain relievers, sometimes just with the result of taking the edge off so I could get through what I needed to do or go take a nap. I don't think those were actually migraines, but they were approaching it in pain level.
My migraines often start with my head feeling all stuffed up, especially if I've been around trigger smells. Decongestants were part of my self-prescribed treatment for years but, like you said, got to the point of only taking the edge off. I still use decongestants on occasion if I've not caight it it early enough with the naratryptan. I've also started using the decongestants with antihistamines since most of my headaches seem to be related to an allergic reaction.

I know many people also use cold packs because one of the goals of migraine therapy is to constrict the blood vessels in the head to reduce the throbbing. However, because my sinuses are usually involved, I find heat works better for me. It's like the heat helps loosen things up to help relieve the pressure.

I've read that NSAIDs are not good for IBD, so I don't know if I should be using Advil or Tylenol Cold & Sinus, because acetaminophen isn't all that wonderful either. More research required...
 
I can't take Advil (ibuprofen) because when it wears off it will cause pain in my guts. Tylenol doesn't cause me any problems. It may depend on the individual, though.
 

theOcean

Moderator
I get chronic migraines and get them at least 3/4 days a week minimum and advil is the only thing that works... most of the time, at least. I take it maximum two days a week because, well, Crohn's. I'm allergic to triptans so I have to be careful about trying preventative medication, but I'm considering looking into it again soon. My neurologist is too daunted by my multiple conditions to really try and help me anymore, though...
 
Hey The ocean - have you had your magnesium checked? I was getting migraines most days, but the magnesium has sorted it - I was really happy as it was an 'easy' fix!
 

theOcean

Moderator
Yep! I get blood tests every month and my magnesium gets checked too -- it's totally normal. I've had migraines for as long as I can remember, even as a little kid.

Has anyone taken pregabalin for migraines? That's what my neurologist and sleep specialist were considering.
 
I get these suckers, but also get tension headaches which also suck, I'm sure there's a link because I never used to get them as frequently as since the cd dx
 
I know that if I have too much sugar - especially before bed I get a migraine. Unfortunatley when I am unwell or stressed I tent toward sugar anyway, and sometimes I get into a permanant migraine when I am not eating right - not cool. Actually am in that situation at the mo- am trying to wean myself off the sugar again - can't do it cold turkey!
 
I feel ya, I try eat scd paleo but sometimes I just can't help but make some toast w something sweet on it ha. It lifts the mood. Has anyone tried digesic for headaches? I find paracetamol to not do the job, and yeah Advil and codeine bad for the cd :(
 
There are a lot of meds out there for neuropathic pain, just ask your primary to cycle through them until you get one that is right for you, there are a lot and it can get frustrating, but sooner or later you will land on one that works for you.

ATM I am on Gabapentin, it works for migraines and it even killed my RLS to boot. Unfortunately it does nothing for my CPPS, "Unknown digestive issues" or sciatica, but since it works on the other two things and seems to have no side effects I am going to ask my doctor to keep it as well.
 
Hey that Histamine link is really interesting. My preventative - Sandomigran / pizitofen is also an antihistamine...The plot thickens!
Hi gotumtum,
I have never heard of Sandomigran until I read your post. Has it been working for you? I googled it and it is available in Canada.

I am at my wits end trying to deal with the migraines. Mine are mostly related to hormones and have worsened the closer I get to menopause. The Crohns is pretty good right now but the headaches are really getting to be annoying!

Joanne
 
jonique

I am soooo sorry I didn't reply earlier!

Yup - The sandomigrin has been a life saver - I was actually getting migraines daily - and the sandomigrin was the only thing that worked! I still get them ocassionally - especially if I eat too much sugar... I now also take magnesium which helps too:)

FYI my mum has probs with migraine and hormones as she is getting older - she takes amytryptyline, and has a merina and patches - and that has made a big difference for her. - I suppose everyone has different triggers! Best of luck:)

Oh also - I am on quite a small dose - and we built it up slowly as I am a bit sensitive in general with meds. aparantly it is a newer option than some of the others, and less people are on it as it is a bit further down the list of things to try, but I am very grateful for it. !! It was prescribed to my by a neurologist so maybe the GP's don't know about it?
 
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emmaaaargh

Moderator
Staff member
Didn't even realise there was a support group for this! I'm glad it's here, though. I started getting migraines in August - and what a doozy. My introduction to migraines was a 10-day streak of multiple migraines a day. By the time I'd gotten an appointment with my GP, finally seen her, and she prescribed me some sumatriptan, they vanished as quickly as they came. Everything was fine for just over a month, then in mid-October they started again. No chains of migraines this time, thankfully, but I'm getting one at an average of about every 10 days - some closer to weekly, some fortnightly or further apart. Using an app to track them and there's no apparent food or environmental trigger so I'm pretty much at a loss. Have only tried sumatriptan twice and both times it had zero effect although it's possible that I'm leaving it too long once a migraine begins to take them (since mine ramp up very slowly and remain pretty much until the next day at least). For now they're merely irritating - and a massive drain on my productivity - but I've been to the GP so frequently for so many different issues over the last few months that I really don't want to go any more unless I'm forced to. So I'll just keep tracking them and see if a pattern emerges.
 
Didn't even realise there was a support group for this! I'm glad it's here, though. I started getting migraines in August - and what a doozy. My introduction to migraines was a 10-day streak of multiple migraines a day. By the time I'd gotten an appointment with my GP, finally seen her, and she prescribed me some sumatriptan, they vanished as quickly as they came. Everything was fine for just over a month, then in mid-October they started again. No chains of migraines this time, thankfully, but I'm getting one at an average of about every 10 days - some closer to weekly, some fortnightly or further apart. Using an app to track them and there's no apparent food or environmental trigger so I'm pretty much at a loss. Have only tried sumatriptan twice and both times it had zero effect although it's possible that I'm leaving it too long once a migraine begins to take them (since mine ramp up very slowly and remain pretty much until the next day at least). For now they're merely irritating - and a massive drain on my productivity - but I've been to the GP so frequently for so many different issues over the last few months that I really don't want to go any more unless I'm forced to. So I'll just keep tracking them and see if a pattern emerges.
Hi Emma, have you thought about the timing of the Humira injections? i've tried 5 biologics and all of them made my migraines worse, almost continuous.

I'm off all biologics now but still getting the migraines as part of my monthly cycle.
 
Didn't even realise there was a support group for this! I'm glad it's here, though. I started getting migraines in August - and what a doozy. My introduction to migraines was a 10-day streak of multiple migraines a day. By the time I'd gotten an appointment with my GP, finally seen her, and she prescribed me some sumatriptan, they vanished as quickly as they came. Everything was fine for just over a month, then in mid-October they started again. No chains of migraines this time, thankfully, but I'm getting one at an average of about every 10 days - some closer to weekly, some fortnightly or further apart. Using an app to track them and there's no apparent food or environmental trigger so I'm pretty much at a loss. Have only tried sumatriptan twice and both times it had zero effect although it's possible that I'm leaving it too long once a migraine begins to take them (since mine ramp up very slowly and remain pretty much until the next day at least). For now they're merely irritating - and a massive drain on my productivity - but I've been to the GP so frequently for so many different issues over the last few months that I really don't want to go any more unless I'm forced to. So I'll just keep tracking them and see if a pattern emerges.
Emma, you can try vitamin B2 (riboflavin) 400 mg/day, and/or magnesium supplements. These are shown to be effective at preventing migraine, and I think they are pretty safe to take - though magnesium supplementation can cause diarrhea at high doses.
There are other supplements too, like Coenzyme Q10, feverfew, butterbur.
 
There are other medications like Sumatriptan that might work: almotriptan (Axert), Naratriptan (Amerge) Rizatriptan (Maxalt), and Frovatriptan (Frova). They are all the same class of medicines (Triptans). Neurologists also use a number of different medications to help prevent migraines, often combining several at the same time. They are truly awful things. I’ve taken every Triptan and Axert helps the most. I’ve also been on most of the preventive medications at one time or another. I hope you can get them under control soon.
 

emmaaaargh

Moderator
Staff member
Thank you all so much for the suggestions! I think I'll be heading back to the GP soon if these don't improve soon. Jonique, I thought about that too, but I started getting them before I started on Humira and it doesn't *seem* to be triggering them.

I had one that was almost definitely triggered by stress yesterday, and I experienced my first aura beforehand too. Of course, I didn't realise what it was until it was too late! I got some dark spots in the bottom right corner of my vision (like partial tunnel vision, I guess?) and irritability along with a swaying feeling. The migraine that followed was probably my worst yet - I'd say a 9/10 pain-wise, and I actually cried on the walk home because I was in so much pain and also afraid of a) vomiting in the street or b) soiling myself, because the stress and nausea was playing havoc with my guts. I made it back to my dorm without incident, though, and had a nap, and when I woke up it was down to a 3/10 and I could make some food and take it easy. Phew! Lesson learned: no lab is worth that level of pain.
 
Can your GP send you to a neurologist for a consult? What you had sounds like a classic migraine with aura. We’re the spots at all geometrical? Auras often appear as spiraling square or triangular spots. You also listed symptoms that can come with an aura. I’ve had migraines since I was 13, and right around the time my digestive stuff started they became daily. They are definitely inflammatory since they disappear when I am on high doses of steroids. Generally neurologists combine a beta blocker (like propranolol), an anti-convulsant (like topomax), and an SSRI (like amitriptyline, prozac, etc.). Since you aren’t getting them that often, you could start with finding a triptan that works. Alternatively there is fioricet, which combines acetaminophen, a barbiturate, and caffeine. The most important thing is to find a medication that will stop the migraine; the more full blown migraines you get the more you will get. The brain can get trained to produce a migraine. A warm bath (if it’s available at university) and a good cup of tea can help, but without an abortive (like a triptan) to stop the migraine, the headache can linger for days. It might also be a good idea to keep track of what you are eating. Aged foods (wine, blue cheese, vinegar) and chocolate are well known to be trigger foods. Please don’t hesitate to pm me if you have any questions you think I might be able to help with. I wouldn’t wish a migraine on my worst enemy. They’re horrid things. Hopefully your GP will be able to send you on to a neurologist and help in the mean time. I would also check your inflammation levels just in case. Pleas let us know how you are.
 
With migraine it helps with kratom. This is not advertising, ahah, but simply the experience of using this substance. I was always categorically against drugs and alcohol, and when I found out that Kratom is not considered a drug and that it helps migraines very well, I decided to use it right away. I also had health problems since childhood and for a start I carefully read everything Kratom reviews and was very surprised. The experience of using different people was very positive and I ordered Best kratom strains. I ordered from one of the best suppliers and it turned out that this is really an amazing substance and it helped me to forget about migraines. So I advise you to try and I'm sure that you will not regret it.
 
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