06-13-2014, 08:06 AM
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#1
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Senior Member
Join Date: Aug 2013
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Migraine And Crohn's Disease Support Group
About this Support Group
Migraine And IBD Support Forum
Members
Agodbold,
Almondmilk,
apopolizio,
chuckmya,
Cosmojo,
Crohn2357,
Daisy123,
Elektrikhd,
Essieluv,
gotumtum,
Grumbletum,
HorseLover!!,
Jabee,
JackG,
jonique,
juggys69,
Karen M,
lccmorris,
Marie23,
Medwards30,
MelKat,
MissBG,
Moriati,
Peacelovelace,
polgara59,
POTTYTIME!,
rollinstone,
scooby2651,
Sophabulous,
Stardust_Fiddle,
Tamera,
theOcean,
whereisthenearestbathroom
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06-13-2014, 08:17 AM
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#3
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Senior Member
Join Date: Jun 2014
Location: West Coast, New Zealand
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Hey that Histamine link is really interesting. My preventative - Sandomigran / pizitofen is also an antihistamine...The plot thickens!
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07-15-2014, 05:01 PM
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#5
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Senior Member
Join Date: May 2014
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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.
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07-15-2014, 08:38 PM
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#6
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Senior Member
Join Date: Mar 2013
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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.
__________________
Meds that failed me: Remicade, Humira, Cimzia, Entocort.
Waiting for a cure!
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07-15-2014, 09:02 PM
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#7
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Senior Member
Join Date: Jun 2014
Location: West Coast, New Zealand
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I can't take amitryptyline as it is too close to nortryptyline which gave me tachycardia and poss periphal neuropathy after 7 years
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07-16-2014, 09:15 AM
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#8
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Senior Member
Join Date: Dec 2010
Location: Western Isles, United Kingdom
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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.
__________________
Dx Crohn's terminal ileum April 2011
Ileocaecal resection & partial cystectomy Sept 2012
3.5 years happy remission, in mild flare since Feb 2016 with related Portal Vein Thrombosis
Previous: Prednisolone, Mesren, Omeprazole, Infliximab, Azathioprine
Current: Pentasa, Librax, Warfarin
Helen x
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07-16-2014, 10:39 AM
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#9
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Join Date: Jul 2014
Location: Lancashire, United Kingdom
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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
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07-16-2014, 09:19 PM
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#10
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Senior Member
Join Date: Jun 2014
Location: West Coast, New Zealand
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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
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07-17-2014, 01:51 PM
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#11
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Senior Member
Join Date: Dec 2010
Location: Western Isles, United Kingdom
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Thanks, Gotumtum. I will definitely try the magnesium and find the time to get yoga back into my daily routine.
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07-18-2014, 04:49 PM
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#12
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Join Date: Jul 2014
Location: Lancashire, United Kingdom
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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
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07-21-2014, 01:08 PM
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#13
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Senior Member
Join Date: Nov 2012
Location: Washington, New Jersey
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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.
__________________
Crohn's dx in 2012, 19 days hospital
Winter 2015 Flare, 5 days hospital March, meds adjusted
(unDx flare 2009 caused by Zyrtec; suspect mild disease in 1990, age 6, followed by remission)
depression 2000, migraines 2012, glaucoma 2014
Humira (40mg/week)
Asacol (800mg 3x/day)
Prednisone when flaring
assorted supplements
Topamax (migraine)
Sumatriptan/Sumaval (as needed, migraine)
Latanaprost (glaucoma)
Viibryd (depression)
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08-01-2014, 06:00 AM
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#14
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Join Date: Jul 2014
Location: Red Deer, Alberta
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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!
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08-01-2014, 03:48 PM
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#15
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Senior Member
Join Date: Nov 2012
Location: Washington, New Jersey
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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.
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08-01-2014, 07:25 PM
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#16
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Senior Member
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Are you getting enough fluids? Also, when the barometric pressure changes drastically for some it can cause migraines.
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08-02-2014, 08:17 PM
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#17
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Join Date: Jul 2014
Location: Red Deer, Alberta
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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.
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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...
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08-02-2014, 09:01 PM
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#18
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Senior Member
Join Date: Nov 2012
Location: Washington, New Jersey
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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.
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08-02-2014, 11:42 PM
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#19
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Moderator
Join Date: Jan 2014
Location: Toronto, ON, Canada
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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...
__________________
Diagnosis: Fistulizing Crohn's, 2011 (originally Dx as Ulcerative Pancolitis)
Past Medication: Pentasa, Remicade, Prednisone, Imuran
Current Medication: Humira (biweekly), 100mg 6mp
Unrelated Medication: 36mg Concerta, 75mg Pregabalin
Currently: In remission!
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08-03-2014, 04:55 AM
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#20
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Senior Member
Join Date: Jun 2014
Location: West Coast, New Zealand
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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!
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08-03-2014, 11:18 AM
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#21
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Moderator
Join Date: Jan 2014
Location: Toronto, ON, Canada
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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.
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08-10-2014, 02:28 PM
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#22
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Senior Member
Join Date: Aug 2013
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08-10-2014, 10:40 PM
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#23
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Senior Member
Join Date: Nov 2012
Location: Washington, New Jersey
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I'll have MRI results on Wednesday...
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08-11-2014, 12:03 AM
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#24
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Senior Member
Join Date: Dec 2012
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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
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08-22-2014, 09:08 PM
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#25
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Senior Member
Join Date: Jun 2014
Location: West Coast, New Zealand
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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!
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08-23-2014, 01:52 AM
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#26
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Senior Member
Join Date: Dec 2012
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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
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08-30-2014, 03:33 PM
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#27
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Senior Member
Join Date: Aug 2013
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08-30-2014, 03:57 PM
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#28
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Senior Member
Join Date: Feb 2014
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How much magnesium do you take to help with migraines??
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08-30-2014, 04:18 PM
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#29
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Senior Member
Join Date: Aug 2013
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200mg magnesium citrate.
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09-25-2014, 01:07 AM
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#30
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Senior Member
Join Date: Aug 2013
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