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Crohn's Disease Forum » Treatment » Remicade/Infliximab » Anyone else start getting migraines since Remicade?


06-03-2017, 09:25 PM   #1
Melissadempsey728
 
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Anyone else start getting migraines since Remicade?

Most of my life I have been fortunate enough to say that I would rarely get headaches, and never had experienced a true migraine until last year.

I've been on remicade for 3 years now, and it seems that once a month or so I get an almost debilitating migraine. I'm not sure if it's related to the remicade or just stress, I'm going to bring it up to my GI at my next appt.

Also, I had a weird experience last summer, where I started to have spotty vision from my left eye, that then turned into not being able to see anything from my left peripheral vision whatsoever, but only lasted about 30 mins and was gone. No headache, no dizziness, no other side effects. It happened again a couple weeks ago, same exact thing. My friend who's a nurse says it sounds like an ocular migraine, and upon researching remicade says there can be some neurological side effects from the drug.

Does anyone have any insight on these topics? Thank you!
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06-03-2017, 10:28 PM   #2
ronroush7
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I don't know what causes them but I occasionally get the ocular migraines.

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06-04-2017, 04:55 AM   #3
Sophabulous
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Migraines are so tricky. I've had them since I was about 13 and they always seem so random. I can go years without having one and then get 3 in a month.

I think mine are at least partly hormonal but there must be more to it than that . I think on a least a couple of occasions they've been brought on by very bright light reflecting off something. I can totally relate to the vision loss, although whenever I've had it the headache always follows but I've heard of ocular migraines with no pain.

I hope your doctor will be able to give you some answers and suggestions. Maybe keep a general diary and see if there are any patterns that emerge before your next appointment.
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06-04-2017, 09:54 AM   #4
Melissadempsey728
 
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I don't know what causes them but I occasionally get the ocular migraines.
Have you been getting them for a long time, or did you notice they started after a certain drug? I see you are allergic to remicade and you aren't on it of course, but you still receive the migraines. How often do you get them?
06-04-2017, 09:56 AM   #5
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Migraines are so tricky. I've had them since I was about 13 and they always seem so random. I can go years without having one and then get 3 in a month.

I think mine are at least partly hormonal but there must be more to it than that . I think on a least a couple of occasions they've been brought on by very bright light reflecting off something. I can totally relate to the vision loss, although whenever I've had it the headache always follows but I've heard of ocular migraines with no pain.

I hope your doctor will be able to give you some answers and suggestions. Maybe keep a general diary and see if there are any patterns that emerge before your next appointment.
Hmm, that is a strange pattern. I can't say that mine were brought on by anything in particular, except maybe stress. As far as the painful headache migraines. The ocular migraines I've only had twice so I haven't been able to see a pattern yet, but I do stress a lot at my job.

That's a good idea about the diary, I'll do that. Thank you!
06-04-2017, 10:57 AM   #6
ronroush7
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Have you been getting them for a long time, or did you notice they started after a certain drug? I see you are allergic to remicade and you aren't on it of course, but you still receive the migraines. How often do you get them?
Probably once or twice a year

06-04-2017, 11:29 AM   #7
crohns4ever
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I know how you kinda feel, I have been on remicade for along time. But just this year shortly after my treatment I have come home with a darn right head ache. Just pull down my blind and keep it dark and try to sleep it off. But when I wake up its still the same, last about three days. My nurse told me at the beginning of this year that the manufacturer had changed some compounds, but it's still had the same active ingredient.
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06-04-2017, 06:42 PM   #8
Lisa
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I had one migrane that occurred a couple of days after an infusion. I could not 100% attribute it to remicade, haven't had one since.....

I've been on Remicade for over 10 years.....
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While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
06-04-2017, 07:28 PM   #9
crohns4ever
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Yeah my nurse told me the same that it wasn't from remicade. But strange..
06-05-2017, 08:32 AM   #10
Jabee
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I'm not on remicade so I can offer no insight on whether or not migraines can be a side effect. I do, though, know too much about migraines. I had my first one at 13, (I'm 56 now) and almost twenty years ago after I had my third child they became daily. The aura you are describing sounds exactly like an ocular migraine. My Mother used to get those (she doesn't have crohn's) and they were alleviated by regular B-12 shots, now capsules. I don't know where your crohn's is located, but I think B-12 is absorbed at the end of the ileum, so you might try taking more B-12 than you usually do. If you are getting "regular" migraines with the intense pain, your doctor might prescribe a triptan (imitrex, maxalt, zomig, axert, amerge, frova) which are migraine abortives and work very well. If you continue to get them I would definitely ask about them. The more migraines you have, the more you will get in the future.

Last edited by Jabee; 06-05-2017 at 09:25 AM.
06-05-2017, 08:40 AM   #11
Sophabulous
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I'm not on re I case so I can offer no insight on whether or not migraines can be a side effect. I do, though, know too much about migraines. I had my first one at 13, (I'm 56 now) and almost twenty years ago after I had my third child they became daily. The aura you are describing sounds exactly like an ocular migraine. My Mother used to get those (she doesn't have crohn's) and they were alleviated by regular B-12 shots, now capsules. I don't know where your crohn's is located, but I think B-12 is absorbed at the end of the ileum, so you might try taking more B-12 than you usually do. If you are getting "regular" migraines with the intense pain, your doctor might prescribe a triptan (imitrex, maxalt, zomig, axert, amerge, frova) which are migraine abortives and work very well. If you continue to get them I would definitely ask about them. The more migraines you have, the more you will get in the future.


That's interesting regarding the B12. I'll have to see if that has any impact on me getting them now I have the injections. Can I ask why the more migraines you have the more you will get in the future?
06-05-2017, 09:42 AM   #12
Jabee
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Sophabulous, the best way I can describe it is it's like an injury that then becomes a place that hurts in bad weather, when you're tired, etc. In addition, things that might not trigger a migraine (red wine, chocolate, bright light, extremes of temperature) start to. So your threshold for getting one is lowered. Treatments are aimed at both aborting a migraine quickly (the triptans or sometimes an ergot based medication) and preventing them from occurring (medications like SSRIs, anti-seizure drugs, and beta blockers). For chronic migraines botox injections in the neck, head, and jaw can help. A new group of drugs (calcitonin gene-related peptide--CGRP) is in the works and I'm looking forward to seeing if they'll work for me. Mine go away only when I take prednisone (ugh), so my doctors know there is an inflammatory aspect but we're still working on controlling them. I've taken every drug on the market for prevention and have made my way through many of the triptans (some have stopped working for me) and still get them nearly every day. Lowering stress (three children, my Mother, an ex-husband) supposedly helps, as does being consistent in foods you eat, getting the same amount of sleep per night, etc. Sometimes I think I'll have to join a convent to decrease the number of variables so that the headaches will go away!
06-05-2017, 04:28 PM   #13
Sophabulous
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Really interesting, thank you for expanding on that. I hope you get some relief with the new treatment, they really are hellish and I wouldn't wish them on anybody.

Take care x
06-05-2017, 04:40 PM   #14
Sophabulous
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Hmm, that is a strange pattern. I can't say that mine were brought on by anything in particular, except maybe stress. As far as the painful headache migraines. The ocular migraines I've only had twice so I haven't been able to see a pattern yet, but I do stress a lot at my job.



That's a good idea about the diary, I'll do that. Thank you!


I had a bad month with them in 2015 getting a couple a week, and whilst I couldn't pinpoint the exact trigger, I found by writing things down I wasn't fuzzy on the details.

That year for the first time I experienced a postdrome after each one, where I felt utterly disconnected and like I was in a echo chamber for 24 hours after the pain subsided. I was also craving chocolate which was odd as It usually turns my stomach. Every other migraine I'd had previously I slept/vomited it off and felt fine the next day.

Those migraines were distinctly different to any others I'd experienced and they stopped as abruptly as they started. Writing it all down was really helpful after the fact. I know it's awful when you're suffering, but it should really help your doctor to see if they are escalating or changing in any way.

I was also told to come off the pill, I suppose this was because of the heightened risk of stroke, but apparently oestrogen can also cause migraines. Unfortunately the progesterone only pill really didn't suit me so I've recently opted for a non hormonal method. It will be interesting to see if there are any changes going forward! As I mentioned above, I'm sure there's a hormonal like with mine and my mum was the same as me when she started getting them.

Bloody difficult things to pin down aren't they?!

All the best x
06-06-2017, 11:24 PM   #15
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I've suffered from migraines all of my adult life. I am a human barometer in that my head will act up 24 hours in advance of a weather change. I often get olfactory hallucinations with them. Typically I think I smell natural gas. That's another key to me that a migraine is coming. Once every couple years I will get a visual aura.

The day after my first infusion of Remicade I woke up with a brutal migraine. I hadn't one that bad in several years. I use NSAIDS for my migraines. If I think I smell natural gas or get an aura often just Excedrin Migraine will ward it off. For the really bad migraines I take Toradol. Now that I can't take any NSAIDS it's rougher. I took a Zofran for nausea, a vicoden for pain and tried to sleep it off as best I could.

I have my second infusion in a week. It will be telling if I wake up the next day with the same monster migraine.
10-05-2017, 02:50 PM   #16
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So im on Remicade, for about 6-8 months now. Last injection about 2 weeks ago, and i started getting shivers/cold and felt like i had a temperature (2 weeks after infusion). Since then i have had really bad headaches. I have never had migraines so I do not know the difference between migraines and headaches.

What i did feel was nausea, and sensitivity to light. I did not vomit but was bad. Its been about a week now and every day i have a headache, mild but its there.

I got a doctors appointment Monday and I want to take a hammer to my head. Any help?
10-05-2017, 05:57 PM   #17
Sophabulous
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So im on Remicade, for about 6-8 months now. Last injection about 2 weeks ago, and i started getting shivers/cold and felt like i had a temperature (2 weeks after infusion). Since then i have had really bad headaches. I have never had migraines so I do not know the difference between migraines and headaches.



What i did feel was nausea, and sensitivity to light. I did not vomit but was bad. Its been about a week now and every day i have a headache, mild but its there.



I got a doctors appointment Monday and I want to take a hammer to my head. Any help?


All I can say is that migraines for me are the worst headache imaginable and its impossible to function like that. Iím either vomiting or sleeping with no in-between. However sensitivity to light and nausea are both symptoms so it sounds like thatís what is going on. Do you suffer any visual disturbances with these episodes?
10-05-2017, 07:39 PM   #18
Jabee
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I agree it sounds like migraines. Generally headaches respond to ibuprofen, acetaminophen, or aspirin. Caffeine can also help. Migraines last for days if they arenít treated properly. I recommend talking with your doctors about the headaches. Migraines also cause confusion and difficulty focusing.
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