Thursday, February 21, 2008

Darkened Room Anyone?

Ten points if you guessed today's topic.... yes.... migraines!
This is something I've been thinking a lot about this week. I don't personally suffer from migraines but I know a lot of women who do. I think this is one of those things that is a very misunderstood and underestimated (if not under diagnosed and treated) problem. As someone who has only ever had a mild headache I can't even imagine what it must be like to literally have blinding pain. My best friend suffers from fairly frequent and debilitating migraines and I can't imagine how I would parent, or how anyone can, when they are going through one. I don't know how many of you are affected by this, either directly or through a loved one, but I imagine that the ramifications of having a seemingly invisible ailment (and I can relate to that) is stressful and frustrating.

I was listening to an NPR story the other day where people were describing their experiences and I thought that maybe this would be a useful and interesting topic. You can find the NPR story HERE. I have no idea what type of treatments are out there, or what you all may have tried, but maybe some of you could benefit from another's experience.... if not a little validation never hurt anyone. So what do you do when one hits? Has anything helped? Have you figured out your triggers? You never know what might help someone else so please do share your story in the comments.

28 comments:

Anonymous said...

How freakishly topical you are... always at the top of your game! An interesting/informative read on the subject.

http://migraine.blogs.nytimes.com/2008/02/19/leaving-the-rabbit-hole/?em&ex=1203742800&en=4bcf20121e36249f&ei=5087%0A

marie said...

I'm one of the migraine freaks. I actually take medication daily to prevent them (topamax) and another medication when I get one (relpax). I've been a guinea pig for several medications as I've been struggling with migraines since I was about six years old.

I've tried natural routes (chiropractors, accupuncture, herbal remedies) with little to no help. These medications finally help me function on a daily basis and I only get about two a month now.

I know some of my triggers are:
aged cheeses, citrus fruits, peanuts and peanut butter, processed meats, soy products, and wine. Weather, exercise and water intake also affect my headaches.

Anonymous said...

yes it is hellish. thanks for doing this post. i've been dealing with one lately that seems to come and go every other day. thanks for the article link and have a great day. i have the flu but am forcing myself to leave for work right now. blah.

Nutmeg said...

I began getting migraines when I was in 2nd grade. I would be crying go to the nurse complaining that my stomach hurt and I had a headache and she would take my temperature and send me back to class. At the time, no one knew kids could get migraines.

From then on I had migraines several times a week. My mom told me she could tell when I was getting one because I would turn all gray and stop talking. By college, it was a 5/7 day a week thing and I started taking several prophylactic medications which did not work. I kept diaries looking for triggers. I couldn't take the typical abortive medicines because you simply can't take them every day. Coping mechanisms included lying in a dark room with a pillow providing gentle pressure to my face and showers, where I would alternate hot and cold water on my head for 30 seconds at a time (I found this on a headache foundation website and it definitely helped for the time I was in the shower, though the effects were not lasting.) Getting overheated is the only thing I can say that was a trigger of any kind.

The problem with chronic migraines is that you can't just stay home and not do anything because you have to work and you have to go grocery shopping (if you live by yourself) etc. So you have to figure out how LONG you can function in agony before you absolutely must stop and just push through for as long as possible. In the early stages I find I can postpone/slow down the progression if I don't wear my glasses (which is only really an option if I'm listening, as they are required for reading and walking etc.

Then, I graduated from college, went to grad school and before the end of the year I was there, they disappeared.

I still get several migraines a month, but now I can take the abortive medicines and function.

Every once in a while I'll have a series of days where I'll have them and I start to panic, though I know now there are much better treatments available.

For anyone who gets chronic migraines, I urge you to see a headache specialist, because I was poorly treated for years and really feel like I lost so many years of my life.

justme said...

i have had migraines in the past, i would get maybe once a year. I did not get the pain, but I got the swiss cheese, and literally felt as if i was going blind. it was the strangest feeling. i also got numb on my lips, and sometimes was so out of it i felt drunk. the only thing that helped was going to sleep and time. i really did not get them often enough that it was bad. however i have several friends who get them All the time. god bless them, i would not survive living with that pain. it does seem to be a problem that is not given the proper respect.

michelline said...

I get them occasionally, but not all that often, thank goodness. I think mine are more likely to be triggered by stress and the only thing that really seems to work is sleeping in a very dark, quiet room. Pain medicines don't work. I usually take sleeping pills so I can go to sleep.

HC said...

Hey guys,

I told my sad little story to Mrs. F yesterday but here it is...

I've been having them since the fourth grade when one day during a grammar lesson I just suddenly couldn't see the letters on the page because of flashing light in my eyes.

Feener -- it IS like swiss cheese -- I hadn't really thought about that before...


Anyways, this was, of course, the day the school nurse was out sick so my teacher figured I was going blind or something (not terribly reassuring to a child). And since the nurse's room was locked, I got to lay on a blanket on the floor at the FRONT of the classroom, while I waited for my mom. My friends figured I was dying so they were pretty nice to me.

It's definitely caused quite a bit of anxiety in my life, never knowing when I will suddenly not be able to see (long car trips are especially nerve racking since I had to make an unplanned two hour pit-stop in a church parking lot in the middle of Connecticut).

What really bothers me is that I feel like most people don't recognize how debilitating they can be and think you just have a bad headache. And it REALLY drives me nuts when people call bad regular headaches migraines, when there is such a significant difference in pain level and accompanying symptons.

I feel very lucky that I don't get them very often, and I have tons of sympathy for those of you who do.

Nutmeg - what you said about forcing yourself to go about your daily activities for as long as possible really struck me. Even though I've been getting migraines for so long, and know what they are and that they won't kill me, when I feel one coming on I always have this underlying feeling of fear.

It's rooted in feeling like I will very soon not be able to care for myself for a few hours and that always makes me unnerved. The fear is less when I'm not by myself, but I worry about the day when I have children who will depend on me and I will simply have to muscle through somehow.

This fear is also lurking in my head when I've had to make certain professional decisions in the past, like whether to take a job teaching or being a dorm mom. My first thought is always, "What would be the worst case scenario if I got a migraine?"

I have a variety of medicines that my neurologist gave me to try out -- the nose spray one (I forget the name) definitely worked the fastest for me, but I also had more of that hungover feeling afterwards. My go-to medicine though is imitrex, taken with 4 regular advil, and if necessary metoclopram for the nausea. Quite the coctail.

I watch what I eat carefully (no red wine, chocolate, aged cheese, all the classic culprits) but what really kills me is stress, or rather the lifting of stress. My migraines occur AFTER a very stressful period once I begin to relax, so sadly, I'm always a bit on edge on vacations. The worst one I ever got was following my grad school exams, and came on while I was babysitting (see where that fear comes from?) and it mimicked a stroke. I ended up in the emergency room and began a long stream of cat scans and neurologist visits until they confirmed that, yep, it was just a nasty migraine.

Unknown said...

I have never had one personally, but my brother gets one almost once a month. I have heard that food allergies often can trigger them. So if you get them often I suggest getting allergy tested. A lot of you already know this though.

Deb said...

Triggers:

- Not drinking enough water
- Not eating frequently enough
- Red wine
- Hormones (I get them around my period and when I'm pregnant)

They're a joy. Everyone has listed the usual treatments I deploy, so I won't bore anyone with more. When I'm pregnant, drugs go out the window, with the exception of T3, which just makes me sleep.

((HUGS)) for Haley -- that story put tears in my eyes.

HC said...

Thanks Deb -- I love hugs, both real and virtual. :)

Mrs Furious said...

Haley,
"My migraines occur AFTER a very stressful period once I begin to relax"
A lot of people were echoing that during the NPR segment.





For Everyone,
I'm just curious (and obviously you can probably see where this is going for me in my mind...)

How many of you wear glasses?

Is there any type of genetic predisposition that you have noticed?

HC said...

I wear glasses.

But the genetic predisposition in my case is passed down through the paternal line. My father got them, and my father's father got them, so fingers crossed that my kids do NOT get them. Oh, and no glasses in their case until much later in life...

I'm not sure if glasses tie into it, but what happens in the brain before a migraine (as I understand it) is that your serotonin suddenly drops, so some think it's related to the same brain chemistry issues that cause depression.

Mrs Furious said...

Haley,
Interesting I was just coming down from upstairs when I thought "hmm.... is depression related? and if so is it a comorbidity issue or does the stress & pain of living with migraines in face lead to situational depression?"

Sounds like you are saying it may very well be a comorbidity issue.


So how many of you also suffer from depression and/or anxiety?

HC said...

Looks like there's a link..

http://pn.psychiatryonline.org/cgi/content/full/41/1/32

HC said...

Hrmmm...that link might not work...but this is what the article says re the chicken-egg/egg-chicken question...heh, sorry, you've tapped into my librarian side right now...

"Although it is not clear whether migraines lead to depression or depression to migraines, the two illnesses may share certain biological causes, the researchers observed. There is evidence that both involve serotonin receptors and transporters, dopamine receptors, and adrenaline. Some studies also suggest that antidepressants can combat migraine and that the mainstream treatment of migraine—serotonin agonists—can decrease depression."

michelline said...

I wear glasses.

HC said...

I'm listening to the NPR show right now, and the writer is talking about her bursts of creativity following migraines which I think is fascinating.

I actually have overwhelming feelings of warmth, affection and lovey-doveyness right after mine. Whether it's the drugs or the emotional relief of the pain going away, or something related to the migraine itself, I don't know, but it's pretty damned funny -- I go from hating life to purring like a kitten and hugging everything that moves.

Mrs Furious said...

Okay also to the mothers out there my best friend is concerned about how she would handle having a migraine while parenting.

How do you all handle that?

Torey said...

UGH, I hate migraines. I get the typical "my head is going to fall off while I throw up" migraines as well as what I'm told are called "visual migraines."

My typical migraines have the pain, the nausea, and the tunnel vision. I literally cannot function. My triggers are hormones and stress and sometimes dehydration. Because of the hormonal aspect, I can't take any of the preventative meds, nor can I take birth control pills. Being pregnant had some great times, and some low times with migraines.

I tried taking Immitrex which is an UNGODLY (not covered by insurance) med that you take at the onset of a migraine. It damn near killed me as one of the "common" side effects is depressing your immune system. I think I'll pass on trying that again, thankyouverymuch.

The visual migraines are when I just get the blinkie eyes and nothing else. I thought I was dying the first time because with no pain, I suddenly couldn't see. It seems to have to do with the amount of strain I put on my eyes. Kid may have this problem since she and I have had similar eye surgeries. One way I deal with this (preventatively) is to sit back from the computer (or the TV) and when I'm not actually reading something on the computer, I look away. Maybe that will help her!

As a parent, it's hard. I can't drive. I want to die/think I'm dying and have no desire to play. Those are the days that the object of the game is to keep the kid alive until someone else gets home. Sometimes all you can do is the bare minimum.

Also, my mom wanted me to tell your friend that her migraines went AWAY after my older sis was born!

Heather said...

I haven't had a full on migraine, but when I was taking the birth control pill, I felt like an ax had actually split my head in half. From the part in my hair to the roof of my mouth, I could feel a very distinct pain, like my head was literally going to split into two. My doc took me off pills after that. I've had a few days of it since becoming pregnant, and thankfully, it's gone now. Trying to get through to Kaiser's Advice Nurse to find out what, if anything I could take, was a freaking nightmare.

HC said...

Speaking of birth control pills, doctors are not terribly consistent about whether these will help or hurt migraine sufferers. My neurologist told me that they could be keeping my hormones stable and they were good, and then my next doctor told me it was a miracle I hadn't had a stroke yet and took me off again!

Mrs Furious said...

Oh my God ladies! Symptoms that mimic strokes? blindness?! I can't even begin to imagine that! And to have those on a regular basis!

Preppy Mama said...

Sorry to join this late, I have only had one true whopper of a migrane when I was pregnant and it lasted for two days. I had to go to the ER and they gave me a Percocet and told me to sleep it off.
My baby sister, on the other hand has suffered her entire life with migranes. She was on Topomax and a slew of other drugs that did nothing for her. She went as far as to go to a Nuerologist in a "Headache Clinic" and pay out of pocket for two years for extensive tests and new drugs all for nothing. It wasn't until recently that she went to a Neurologist in NYC who did complete MRIs and CAT Scans only to detect that she has what is called Chiari Malformation I. Its where the brain presses on the spinal chord. (Its something that happens during development inutero--its not genetic) She is having surgery some time next month. The Nuero Surgeon says she may have a migraine from time to time, but not every other day.

Elizabeth said...

I have never been diagnosed with migraines but I used to get these head splitting pains that would cause me to quit working and go lay down because there was no focusing. I went off the Pill and never noticed anything. Then about a month or six weeks later, I felt the beginning of a headache and thought to myself "Wow, that's odd - I have not had one of these in ages."

I added it all up and sure enough, in the year or so that I have been off, I have had MAYBE one headache a month as opposed to 3-4 per week.

It's a blessing right now but once we have a kid or two or twelve, I am going to need to find another birth control method.

Sherry said...

The VA (Veteran's Affairs) considers migraines to be disabling and they pay disability for it. I am a migraine sufferer and have not found any specific triggers. Wait. Vanilla lotions/sprays/certain can trigger a migraine for me. That's the only thing I have been able to pinpoint. Some migraine medicines help. Some just make it worse by taking away the headache but making me sick to my stomach.

Nutmeg said...

As I type this I have a whopper of a headache.

Let's see:

I wear glasses, I'm both pretty badly near sighted (20/700) and I have an astigmatism (which is why I need my glasses to read, even up close). With my migraines, they generally start with a headache which progresses to visual disturbances (vertigo) and is followed by nausea, severe bilateral pain and MAJOR photophobia. This fall I had viral meningitis and it was worse than the migraines (mostly because I was also a little encephalitic, so I was seriously confused), but not a LOT worse, the photophobia was about equal. If I take my glasses off during the vertigo stage, I can prolong it. The vertigo is the thing that interferes most with daily life. Pain is HORRIBLE and sometimes unbearable, but a person can live through a lot of pain and do a miraculous number of things. But if I was at work and started to get a migraine, I needed to drive home before the vertigo set in. Additionally, migraines cause me to really lose the ability to put sentences together (outside of simple noun verb configurations). I really can't speak. It's startling.

My father also suffered from migraines, though not as chronically as me.

I think the depression is comorbid, but certainly a major depressive disorder can be exacerbated by chronic pain. My father also had major depressive disorder.

How do I care for my kid? Well, honestly I cared for him with meningitis for like... 5 days before I finally got so confused I called someone and went to he hospital. Mrs. F, I'm sure you can appreciate that you can deal with a lot of pain if you don't have much choice. I think it totally sucks, but it's totally not scary. I say that, but before my labs came back my dr. was convinced my meningitis was a return of my chronic migraines, and I about threw up from the fear of that possibility because I don't know what I'd do if I had to do it every day.

I do want to remind everyone that kids can get migraines. I spent so many years with the other kids in school calling me a cry baby (it was seriously my nickname) because I would sit and cry in pain and anguish at my desk after getting sent back from the nurse's office for the 5th time in a week.

Also, I have to agree the side effects of taking immitrex are so unpleasant as to make me almost NEVER choose to take it unless everything is dire.

Mrs Furious said...

Nutmeg,
I can certainly testify that while constant chronic pain is indeed painful you can continue on with life... it is just more annoying. Pain definitely eats at you even when you can push through it and it can be depressing. I was missed diagnosed as a long time which was also depressing... it seems if you are a social worker in your 20s your symptoms are merely "stress related" or at least that is what the first 100 doctors said without ever running appropriate tests. This week I'm actually having my first real bout of pain since having Baby.... pregnancy can cause RA to go into remission... which is why I really haven't been able to workout this week. BUT my pain isn't in my head and doesn't interfere with my vision or speech or cause nausea.... that is unbearable stuff.

Danielle said...

Interesting topic. I suffer from migraines, about once every 10 days or so; sometimes once a week. I have abdominal migraines combined with classic migraine in that I am horrendously nauseated and usually vomit combined with light/sound sensitivity. I don't do well with migraine medications, but a pot of espresso, 2 Excedrin Migraine, and 2 darvocet usually dull the pain enough to sleep.

I've had extensive allergy testing, but my allergies aren't the trigger. I do not suffer from depression/anxiety, nor do I wear corrective lenses (or need to.) I've also done acupuncture, herbs, and whatnot. The only thing I found that does help in that matter is bilberry, which has actually decreased the light sensitivity at night.

Mine are triggered by bright light, which is something that I'm surprised no one else has mentioned. I wear sunglasses whenever I'm outside (really, really, really dark-lens Chanel ones... because they were the only ones dark enough.) If the sun is really bright and I'm sleeping in a position that my face is in the sun, I will actually wake up with a migraine. Nighttime isn't a guarantee against them, either, for oncoming headlights while driving, especially if it's raining or wet out, will trigger them.

I would rather honestly go through 48 hours of labor, followed by a Cesarian section AND it's consequential recovery rather than have a migraine. That's how painful they are (for those of you who don't have them and have had kids and/or major abdominal surgery.)

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