Migraines!

[Cat-a-Tonic]

Anybody else get them? I never ever got them up until this IBD hit me, so I'm assuming they are probably related somehow. Then for awhile I was getting migraines pretty frequently. I've been on Amitriptyline and hadn't had a migraine while on 25 mg of Amitrip... until just now! The aura just hit me a few minutes ago, I can barely see out of my right eye (it's really hard to type this actually). I'm stuck at work and can't leave as we're short-staffed on Wednesdays so I just have to soldier through this. The sensitivity to light is going to hit me any minute. The next couple hours are going to suck.

Anybody else start getting migraines around the time that your IBD hit? Anybody else get the freaky visual auras? Or awful sensitivity to light with migraines? I have no meds for this besides the preventative Amitriptyline so I'll be taking Tylenol and hoping it isn't a bad one. I'm just now getting the sensitivity to light so I'll be squinting and possibly crying at my desk for a bit. Ugh! I've been under a lot of stress lately so I'll blame that since my IBD is in remission. I cannot see what I'm typing anymore so sorry if there are typos!

 

[tiloah]

I have the worst migraines, and yes they started around the same time my IBD "hit."

All I can say is I am so, so sorry. I know how absolutely awful it is. Have you seen a neurologist? I could not live without my triptans.

 

[Cat-a-Tonic]

Thanks Nic. I have not seen a neurologist. I am due for my yearly physical with my GP next month so I'm going to ask him about my migraines then. Maybe he can prescribe Imitrex or something like that because Tylenol does diddly squat. Amitriptyline prevents them for the most part but obviously not 100%. Fortunately today's wasn't too bad. I'm past the aura, over the worst of the pain, didn't get nausea this time, and now am just feeling weak and drained. I'll probably take a long nap as soon as I get home.

 

[tiloah]

Well I'm glad you're over the "hump" and that Amitriptyline has mostly been a good preventive for you. I hope you feel better soon. *gentle hug*

The first time I saw my neurologist he asked me, "How have you been living like this?" Now that I have discovered the wonder of Maxalt/Imitrex I wonder that myself.

The thing about migraines is that they are not headaches, they are a neurological disorder. OTC drugs like "Excedrin Migraine" claim they are for migraines, but they are not, they are for headaches. They can't do anything for actual migraines, at least not in my experience.

 

[Cat-a-Tonic]

I don't take Excedrin anyway as I try to avoid caffeine (now that I think about it... I had caffeinated green tea this morning and I haven't had caffeine in forever, I wonder if that contributed to triggering this migraine?). That's interesting that they're not actually headaches and that makes total sense. I seem to get as much eye pain as I do head pain with my migraines - they only ever happen in the right eye. I get auras every time but only in the right side of my vision, and the pain happens throughout my head and in the right eye. Never the left eye. I think I will ask my GP about a referral to a neurologist. I've had IBD (or whatever this is, I'm still not officially diagnosed but GI and GP have both unofficially said that it's IBD) for over 2 years now and I've had the migraines for just as long. And I've just been suffering through them. I think it's time I learn about the wonders of Imitrex (is Maxalt the generic version?) too.

 

[tiloah]

I was on Maxalt before the generic form of Imitrex came out, which my insurance made me switch to. They are different drugs but they act the same way (are both triptans). I think seeing a neurologist is a good idea.

Yes, the caffeine definitely could have triggered it!

I hope whatever treatment plan you end up on it works wonders for you. You deserve to not feel so awful!

I read a while back that on imaging, what happens to the brain is very similar to what happens during a seizure. I wonder if that might be why seizure meds are sometimes effective as preventives.

 

[Cat-a-Tonic]

Similar to a seizure, very interesting! My aunt has Crohn's and gets migraines as well and she has compared her migraines and the auras to feeling like mini-strokes. I'll have to tell her it's seizures, not strokes. I never felt like mine were strokes - I always heard that you can smell something (cookies?) when you're about to have a stroke, and I never smell anything odd when the aura hits. I just see weird stuff or can see hardly at all. Sometimes my auras are like, somebody just turned on or off the lights - but only on the right side of my vision. Once it was like somebody turned up the clarity and I could see really crisply and more detail than usual, again just on the right side. Today's aura was a "classic" one where it started as this swirly lights thing in my peripheral vision and it grew until it took up the entire right side of my field of vision. It is freaky! Even if I could have left work, I couldn't have driven myself as I could barely see.

Anyway, I'm rambling. Thank so much for the info! I will ask my GP all about this stuff at my appointment in a few weeks. And until then I will make sure to avoid caffeine!

 

[Trysha]

Migraines are also the bane of my life and have had them forever,lke the GI issues.
The aura can start as a result of sunlight, certain foods and red wine.,and no reason.
Once I had pears in red wine (famous British chain store) and as soon as the juice hit my tongue the migraine started! Fastest onset ever, there's allergy for you.
Been through all the usual drugs not very useful, some made the headache worse. Used to take anacin+caffeine at the first sign of the aura and it would abort the headache or make it less painful.Then could not take it (NSAID) and have to use tylenol, not so good.
I put a cold cloth on my forehead and a heating pad or hot water bottle behind my neck take 2 regular strength tylenol and rest in a darkened room till the worst of it goes.It takes at least forty minutes to lose the aura, some of which are spectacular like fireworks exploding.The headache can take a day or two.
At the moment I am getting 2-3 a week but I am into a crohn's flare since colonoscopy a few weeks ago.Happy days!
You have my sympathy Cat
Feel better soon
Hugs and best wishes
Trysha

 

[tiloah]

You're not actually seizuring, it's just that the activity in the brain looks similar on imaging. I know when I have a migraine my judgment becomes compromised. I become impulsive and am more likely to make poor choices.

Trysha - Alcohol is a total trigger for me. I am guaranteed a migraine if I drink. The other day I tried a cigarette for the third time in my life and the onset of migraine was nearly instantaneous. Crazy!

I have (thankfully, knock wood) never really experienced auras. They sound terrifying. I have heard that people who experience migraines with auras have a slightly increased risk of stroke (people who experience migraine without aura apparently do not). But the good news is people who experience migraines also have a decreased risk of breast cancer. Hooray?

 

[Trysha]

I can resonat with what you are saying.
I don't smoke or drink , nothing against it just don't like the taste.
The wine in the pears was quite weak but enough to do damage.
Occasionally I have the aura and no headache, bit strange but there it is.
Just as mysterious as crohn's I guess!
Trysha

 

[DustyKat]

Sarah had migraine type headaches pre diagnosis and at one point was diagnosed with abdominal migraine due to the persistent gastro issues associated with them. She experienced the aura much as I do, zig zag flashing lights, plus the headache and vomiting. They have stopped though now that she is in remission.

Hope you are feeling better Cat! :hug:...migraines suck...:voodoo:

Dusty. :heart:

 

[littlemissh]

I get migraines though probably only 4-5 per year. The strange thing is that I get the aura where my vision just goes and the sparkly lines, then mild nausea and a mild headache only. Only once I have had a bad headache.

The worst time I had one was when helping my husband chop a large tree down. I was on the end of the rope to pull it in the right direction when it fell, I started with the visual aura and couldn't see properly just as the tree cutting got to the critical point....so just had to hang on and pull the rope as best I could in the right direction!!
I didn't fall on me thankfully!

 

[Astra]

Hiya Cat!

Yeah me too! But I'm feeling really good Crohn's wise, so not had an attack for ages.
Remember what my neurologist said, she told me to go cold turkey on caffeine and painkillers?
I don't vomit with migraines, mine are in my left eye, auras like zig zag lines, then blind!
I feel your pain! Hope you feel better soon xxxxxxxxx

 

[Cat-a-Tonic]

Joan, your migraines sound almost exactly like mine although mine are right eye instead of left. I don't vomit with them either although sometimes I do get mild nausea with my migraines. I was bad yesterday, had caffeine for the first time in ages and I'm guessing that's what triggered the migraine. No more caffeine for me! I have a cold right now so I have been taking cold medications (Dayquil, which contains acetaminophen) so that could have contributed too. I'll stop the cold meds and of course no more caffeine.

I'm feeling mostly better today although still having some pesky pain in my right eye. I went to bed early last night and slept really well so that seemed to help a lot. Usually it takes me about 24 hours to recover from a migraine so hopefully I'll be completely over it shortly.

Little Miss H, that's frightening about you chopping down a tree during an aura! I once tried to drive myself home during an aura, that was really scary. The aura had just started so I only had a little "blind spot" in my vision and wasn't yet totally blind on the right side. So I drove really fast to try to get home before I was blind! Scary, I know! I won't do that again, I'll either stay put until the aura is over or have someone drive me. Luckily my auras don't last too long, usually anywhere from 15 to 30 mins. The actual migraine usually starts immediately after the aura (although once it didn't, I had the aura and then about 5 hours later I had the actual migraine! That was a weird one!).

 

[imwood]

I get cluster migraines for a full week every month, around the week of my period. I was told for years, if you can "touch" the pain it's sinuses and I was refused a migraine med prescription bc I could press on the spots of pain around my orbital & sinuses where it was painful, also my eyes would water and nose run uncontrollably for a few hours before the attack.. bc it was around/in my eye, eye socket & sinus cavity. I was told, since it's around your period, it's only hormonally related and can't be a cluster headache. I was told, it can't be a migraine bc it switches sides bc many migraine sufferers only have the pain on one side, and many cluster migraine sufferers have the attack on one side at all times. (I get it on one side for 2-3 days, I get 12-24 hrs relief, then it shows up on the other side for 2-3 days. Every. Single. Month.).

Really, doctors know so little about these things, just like Crohns. There are generalized presentations and then there are the me's of the world.

And, it is similar to seizures in the way it shows up and the way it affects the brain. in fact, I take Topamax which is a seizure med, to help my cluster headaches. It doesn't eliminate them, sadly, and I technically overdose on Maxalt for a week each month, but it does make them "less worse" than before I had the Topamax.

Migraines and headaches ARE linked to B-vitamin deficiency, however. I found I had fewer in-between migraines when I started taking a B6 and B12 supplement. I used to have migraines almost weekly. Now, I'm down to the week-long attack once a month by figuring out my triggers (dehydration, vitamin deficiency, wine in even the smallest amounts...)

 

[Kelly2]

I suffer from severe migraines. I once had a migraine that lasted over 2 months, and they eventually had to hospitalize me to break the headache with iv meds. The last few years I normally would get about 3 migraines a week. 3 weeks ago, I saw a new neurologist, and he put me on a preventative medication called Pamelor (generic is called Nortriptolene). Just one 10mg pill every night before I go to bed, and I have not had one single migraine in over 3 weeks now!! How crazy is that!! So if anyone has them really bad like I do, please look into this med. The doctor said that I should start out at 10mg and slowly increase the dose - but I didnt as it was not needed. Do not start at a higher dose. This medication is also used as an antidepressent.

Imwood - those menstrual migraines that you get are very familiar to me. I used to get them really bad before my hysterectomy. One day, my gynecologist's wife shared with me that what she does is put an estrogen patch (like Vivelle) on her tummy a few days before her period. She said this stops you from having an estrogen drop which causes the menstual migraine. I would definately look into this if I were you.

 

[imwood]

Unfortunately, while they happen around my period bc the hypothalamus plays a role in cluster migraines & also in regulating the body, hormones are not what causes my cluster migraines per se. That's why I went unsuccessfully treated for so many years. I was given hormone treatment after hormone treatment, everyone thinking it was my hormones that were out of whack. Nope. While it may be the change in hormones that trigger the cluster attack in my case bc the hypothalamus is freaking out, it is not a drastic drop in hormones that is causing the migraine to occur bc I'm depleted or imbalanced. Cluster migraines are an angry, and evilly different beast than the terrible "regular" migraines. Once I got rid of my regular migraines I was left with just the awful clusters.

...Although, at this point, it's a wonder I don't grow a third boob or a testicle after all the hormones I was prescribed.....

 

[tiloah]

Woah imwood, your experience sounds almost EXACTLY like mine! Have you ever used triptans and if so, did they do anything for you? I believe that triptans being effective (which they are in my case) is indicative of it being a migraine as opposed to something else. I had never even considered cluster headaches, but now you're making me wonder!

I used to have migraines several times a week until I went off of birth control. They decreased significantly then. Now I get them several times around when I menstruate and when I ovulate.

"I get it on one side for 2-3 days, I get 12-24 hrs relief, then it shows up on the other side for 2-3 days. Every. Single. Month." I could have written that sentence myself!

 

[tiloah]

Kelly2 - I'm so glad you have found something that is effective for you. I can't even imagine surviving a migraine that lasted over two months.

 

[Hardeep]

I have also gotten severe migraines over the past few months. As of yet i'm undiagnosed so not sure if it's related to an IBD. It started around half a year after i started to lose blood so i assume that's the reason for me. I have begun to lose blood for a while now and had a low RBC count for a long time. Prob cause of that i get them, i doubt it's an IBD for me.

 

[MendyVarner]

I just asked my GI doctor about this on Monday. He said headaches are another lovely part of having Crohn's. I get them in the back of my head shooting through to my left eye...had them for a week straight recently. NO fun!!! I do see a neurologist and have had an MRI because one migraine caused me to lose vision for about 15 minutes in my right eye. Everything was ok, and I didn't even know migraines can make you lose vision, but they sure can. Hope you get some relief, as I know headaches are miserable

 

[Cat-a-Tonic]

Hey all, just wanted to post an update about my migraines. Fortunately I haven't had another once since I started this thead (knock on wood). I saw my GP today for my yearly physical exam, and I mentioned the migraines to him. I didn't even have to ask for Imitrex - as soon as I mentioned migraines, he asked if I had ever tried Imitrex and he said it would be a good idea for me to have some on hand. He wrote me a prescription and one refill (apparently even the generic Imitrex only comes 9 to a prescription?) and said he'd be happy to write more refills as needed. He said for my next migraine, I should just try one half of an Imitrex and see if it helps, and if it doesn't then I can take a full pill or even 2 pills (the max dose) if I need to. Yay, I'm excited! No more just Tylenol and wishful thinking for my migraines.

 

[Crohn's Mom]

Cat Imitrex works great for Migraines ! The trick is to take it as soon as you think you have one coming on...they don't work as well if you wait a while.

Glad you have them on hand now, and I hope you never have to use them!

 

[Cat-a-Tonic]

Thanks T! Yes, my GP said as soon as the aura hits I should take the Imitrex right away. I usually get the aura about 15 mins or so before the migraine itself hits so hopefully taking the Imitrex at the onset of aura will stop the migraine from even happening. My GP also recommended I keep a headache journal so that I can learn what triggers my migraines. Other than caffeine, I really don't know my migraine triggers, so it will be a good thing to keep track of what might be causing my migraines.

 

[tiloah]

Well I hope you don't need it for a long time, but when you do need it that it works well for you.

 

[Cat-a-Tonic]

Thanks Nic! I hope I don't have to use them anytime soon either, but it is a big weight off my shoulders to have the Imitrex on hand. It was always such a sinking feeling in the past when the aura set in, and knowing what was coming and that there wasn't a thing I could do about it. The next time an aura hits, well I won't be happy, but I will at least have meds and hope!

On the subject of migraines, does anyone know for sure if there's a genetic component? When I first started getting migraines, my mom said she used to get migraines fairly regularly when she was in her 30s but the frequency waned in her 40s and now she rarely if ever gets a migraine. She gets the pain but not always the aura I believe. My grandpa (dad's dad) told me a little while ago that he gets "eye migraines" where he gets the aura but not the headache, and my dad just told me the other day that he gets the same thing. So did I get the auras from my dad's side and the migraine itself from my mom's side? And how weird that the migraines started happening when I first got this IBD, but neither my mom nor dad nor grandpa have IBD. I guess I'm just trying to figure out what's connected and what's coincidence!

 

[tiloah]

Wow that's pretty prevalent in your family! My sister used to get migraines when we were younger. I would imagine there's at least some genetics involved.

 

[DustyKat]

Oh wow, it is so good to know that you have something to stave off these horrid things! YAY! I hope they work wonderfully well for you Cat. :hug:

I have read figures that suggest that if you have one parent with migraine you have a 50% of developing them yourself. If both parent's suffer with them then it is a 75% chance. I think most research now points to the fact that migraine is genetic, they don't really know why or how this works but there are some studies that suggest they are also linked to asthma and allergies. That being the case I often wonder if IBD isn't also linked to these other faulty immune response disorders.

Dusty. xxx

 

[Irene3]

So glad you guys posted all this info on headaches. Iv been researching everything from candida, Pred, blood sugar, and noticed the sub forum on eyes, then this. I never knew crohns can cause headache/ migraine, or that estrogen can be related, as I don't get periods, but little period pains, diff more mild to crohns. I also began a food/symptom diary, but not just for crohns, but all the above listed, and to work out what is causing which- wether candida for eyes... So many things with crohns.
Thanks for all the insight on specifically headaches/ migraine. hope all of your migraines stop occurring, I'm trying to find diets etc good for crohns and other symptoms/manifestations of it, as a preventative for them. Rather then more meds, as I think blood glucose fluctuation is part of mine also, with the candida there from Pred, there from crohns.

All the best xo