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09-25-2014, 01:25 AM   #31
juggys69
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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.
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10-09-2014, 03:53 AM   #32
Crohn2357
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Eliminating known migraine trigger foods for some time and then reintroducing them one by one to observe the reactions helped me with migraines. I modified paleo diet with my elimination diet results. The diet also helped my ibd.
http://www.ncbi.nlm.nih.gov/pubmed/20647174
http://www.ncbi.nlm.nih.gov/pubmed/8681169
http://www.ncbi.nlm.nih.gov/pubmed/87628
Elimination diet is a trustable way to understand the problematic foods; not only for migraine but also for gut health- general health.
10-27-2014, 04:43 AM   #33
jonique
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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
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Dx:
Crohn's Disease
IBD associated Spondyloarthropathy
Migraines
Moderate Fatty Liver

Meds:
5-ASA (Salofalk)
Celebrex
Omeprazole


Previous meds:
Stelara, Cimzia, Simponi, Remade, Humira, Methotrexate, Entocort, Sulfasalazine

Surgery:
1. laparotomy 1986 - Dx Crohn's Disease
2. small bowel resection 1995
3. small bowel resection 2016
10-30-2014, 06:04 PM   #34
Elektrikhd
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I recently increased my magnesium supplement and that has made a big difference.
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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)
11-01-2014, 06:17 PM   #35
gotumtum
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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?

Last edited by gotumtum; 11-01-2014 at 06:21 PM. Reason: addition
12-19-2014, 02:57 AM   #36
Crohn2357
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Do you get abdominal cramps as an adverse effect of ergotamine usage?
http://www.crohnsforum.com/showthread.php?t=69157
05-14-2015, 12:26 AM   #37
POTTYTIME!
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The day after I take my Humira Injections, I get a massive migraine. Last a day or so. Does anyone else get this?
05-14-2015, 05:14 AM   #38
Crohn2357
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You can try an antihistamine after the injection. Look: http://www.healingwell.com/community...895&g=3401268#

Guess that's why taking an antihistamine for my Humira headaches works so well, I take it at night before I go to bed on the day I give myself a shot of Humira...before that I would suffer with agonizing headaches for 2-3 days from Humira.
11-20-2017, 01:38 PM   #39
Crohn2357
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Paracetamol (acetaminophen) with or without an antiemetic for acute migraine in adults (Cochrane review)
http://www.cochrane.org/CD008040/SYM...igraine-adults

I've found paracetamol 1000 mg to be effective for my migraine attacks. It's also safe to use for Crohn's patients.
11-20-2017, 03:27 PM   #40
emmaaaargh
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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.
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Hi, I'm Emma!
19 years old.
Diagnosed: Crohn's disease, August 2007
Currently on: Humira 40mg fortnightly
11-20-2017, 04:35 PM   #42
jonique
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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.
11-20-2017, 05:44 PM   #43
Crohn2357
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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.
11-21-2017, 07:53 PM   #44
Jabee
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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. Iíve taken every Triptan and Axert helps the most. Iíve also been on most of the preventive medications at one time or another. I hope you can get them under control soon.
Yesterday, 07:57 AM   #45
emmaaaargh
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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.
Yesterday, 10:12 AM   #46
Jabee
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Can your GP send you to a neurologist for a consult? What you had sounds like a classic migraine with aura. Weíre the spots at all geometrical? Auras often appear as spiraling square or triangular spots. You also listed symptoms that can come with an aura. Iíve 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 arenít 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 itís 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 donít hesitate to pm me if you have any questions you think I might be able to help with. I wouldnít wish a migraine on my worst enemy. Theyíre 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.
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