Migraine info needed

[juligrl]

I started getting miagraines monthly right between my periods (oh joy!) at about 17. Fortunately, mine are generally 12 hour events, unlike my mother's whose were 3 day events.

Mine always start with auras of 3 ovular shaped dots (one pinkish, one greenish and one blueish all outlined in yellow) that go floating across my field of vision. Within two hours I will have a raging miagraine. My miagraines always creep up the right side of my neck. Sometimes I can slow the progression of the headache by freezing it and taking Excederine early & as often as is safe to do so. Once the headache starts though, I'm pretty much useless for the next several hours until I puke and see all the floaty auras go racing away. Then sleep, dark and more ice seem to do the trick. I usually spend the next day feeling like I just spent the previous night wrestling with a Mac truck.

Chocolate, cheese and red wine are my lethal foods and I have to avoid them at times when I'm prone to get a miagraine anyhow.

In my case, they're hereditary. My grandpa routinely got them until he had his thyroid removed due to thyroid cancer. He's been miagraine free now for 40 years! My mom started getting them monthly in her late teens and still does, but has Immitrex, which has been wonderful for her. I get them. My younger sister gets them bi-monthly. My cousin (through my mom's side) also gets them bi-monthly. Neither of them has really predictible cycles either so I wonder if that's why they're more bi-monthly than monthly (lucky me). I did only get them bi-monthly while pregnant, both pregnancies, and still now while breastfeeding, but it's just as bad because I can't really take anything for them now.

 

[Barb D]

I haven't read the rest of the responses, but I'll type one up quick...

Both of my DDs (13 and 6) have been diagnosed with migraines. It's definitely hereditary; I get them, my mom does, etc. Both of my girls just take Ibuprofen.

With me it was linked to my cycle and certain other triggers until last year. Then I started getting migraines and/or tension headaches almost constantly. I started Depakote as a migraine preventer in July, and it's been WONDERFUL. I'm not migraine free, but at least I've only gotten them when I've actually had triggers for them instead of constantly.

 

[Tigger&Belle]

um..... Maryland....

(ducks and runs from the room!)

You are so up crap creek without a paddle!!!!

 

[BeckWhy]

I started getting my migraines either when I was a senior in high school (towards graduation) or a freshman in college (towards fall registration). I had them everyday, at first I saw a GP or PCP and they put me on some meds which I later found out were to prevent period headaches (which mine weren't, and the med didn't help at all). I started taking vicodins which helped (I'm not really sure if they got ride of the migraine themselves, but they knocked me out for like 12 hours, so when I woke up the migrane was gone). Then my dad's insurance said I could go straight to a neurologist without a referral, so I did. He ran a few tests on me (EEG, MRI) to make sure I had no brain damage. He put me on an anti-depressant and a beta blocker (or if you are in the UK an anti-anxiety). He put me on the anti-depressant to "help me sleep." And boy did I... these helped, I still get migraines when I'm around smells (see below), but my doctor says he doesn't know why... he tried to phase me off both meds (at two different times) and both times the migraines came back. He also put me on an actual migraine medicine (Imitrex maybe) and it didn't work... then he gave me Zomig (Which I do take if I get a bad migraine), but Zomigs make me feel like I have the flu (I get hot flashes, I can't breath, my throat gets sore and I feel like I can't swallow, I get extremely lethargic (sp) and sleepy)... He says that it's not a side effect and I shouldn't be feeling that way... I don't think my neurologist is the brightest bulb in the box... but where I live there isn't many options.

I do not get auras. I have nothing to "alert" me that a migraine is coming. They usually just happen. The only thing that triggers migraines for me are smells. And so far nothing has been able to stop that trigger. Not all smells trigger them either, like I drove past a grape jelly/juice factory, that triggered my migraines, colognes (sp) and perfumes trigger them, diesel from a dump truck or a car (VW TDIs) but no other diesels set it off.

 

[bavaria]

You are so up crap creek without a paddle!!!!

Shhh, it's ok, don't stress or you'll get a migraine..... Seriously, I had no advance warning, it was a 72 hour trip, and it was no fun (especially not without you!)

 

[Magickndm]

I started getting them when I was around 12, always with the auras, I've kept journals, but no real stand out triggers other than stress or lack of sleep.
I tried Imitrex, was maxed out on the doseage I could take, didn't put a dent in them.
The best thing that works for me is 2 extra strength Excedrin (it really is the same as their migraine formula) and phenigrin as soon as I get the auras.
I get very ill without the phenigrin and will end up in the ER dehydrated if I don't take it. Needless to say, I take it every where I go.

 

[lowie]

wow, i learn so much here! i had no idea that your digestive system shuts down with migraines, but boy does that ever make sense! and vomiting usually does 'help' me even though it hurts so much!
anyway, to the OP... i've had migraines since my early teens, i get a small dot in the center of my vision that seems to open into a sparkling semi-circle that gets bigger and bigger until it disappears out of my range of vision. i also get eye boogers (tmi, i know). if i take advil right when the dot appears i'm usually ok, but if i don't i'm in trouble and can go on for hours, even into the next day.
my poor dd also has had a few migraines, i can tell from the look she gets, i feel her pain totally.

 

[piratesmate]

This is an interesting thread. I had no idea that your digestive system shuts downs, although my sister swears that by drinking a strong cup of coffee & a certain kind of hard pretzel as soon as her aura starts she can ward off most of hers recently.

I started getting migraines at puberty, always with an aura. I got migraines at least once a week, and they usually lasted 3 days. We never figured out all the triggers, although I knew chocolate & peanuts were NOT triggers, but many smells were - such as broiled chicken with the skin on & many chemicals, perfumes... This was back before there was any migraine drug on the market, so it was dark room, cool compress & sleep it off.

I saw a neurologist at 16 and they ran a bunch of EEGs (again, before the advent of MRIs, CAT scans, etc) and determined that I had either severe migraines or mild epilepsy. They put me on Phenobarbitol, but after several years they determined I was allergic to it (it destroyed the platelets in my blood) and took me off of it....didn't replace it & just left me suffer with them again. After the birth of my DD (I was 40) they stopped.

Both of my kids get them. DS started at around 12, but he doesn't get them too often & then don't last too long. He has the same "zongy eyes" aura that I do and generally sleeps them off. Mainly stress and a few smells seem to be his triggers. DD is a different story.

DD started getting them at 6. We still have no idea what her triggers are. It doesn't appear to be foods, and isn't related to her cycle. Stress could easily be a trigger for her. She does not get auras. This year she started with a migraine the last day in February and it lasted until the middle of June. She was incapacitated & ended up on homebound instruction. They'd put her on 2 preventatives...an anti-depressant & an anti-seizure med hoping to stop the migraine. It wasn't until we got her into Children's Hospital in Philly that we were told that wouldn't work. They admitted her & did an IV with DHE.

The DHE didn't work immediately as expected, but after 2 weeks she finally was headache free. Now, excessive physical activity will trigger it as will loud noises & bright lights. The Elavil & Topomax seem to be working since she's forgotten to take them when she first wakes up & she'll get a migraine.

Oh - and none of the migraine meds like Imatrix and Maxtol helped...of course they didn't try them until she'd already been in the throes of this monster for a couple months.

She's had a series of MRIs done and the only thing they found was a pineal cyst, but they keep telling us it isn't the cause of the migraines. They've also stopped trying to find her triggers. We kept the food diaries - nothing there. We tracked her cycle - not related. At this point they just want to find a way to control them. They feel the migraines are hereditary since all the women in my family get them, her brother does and her father's sister & neice do also.

 

[Tigger&Belle]

Shhh, it's ok, don't stress or you'll get a migraine..... Seriously, I had no advance warning, it was a 72 hour trip, and it was no fun (especially not without you!)

OK, you're forgiven this time, just don't let it happen again!

piratesmate, your poor daughter! I can't even imagine.

 

[Magickndm]

Your poor daughter piratesmate. It's so hard watching your child go through that, especially since you know their pain.
I had forgotten my Dr. had me on Elevil for a period of time too with no real results.

 

[piratesmate]

She held up pretty well....Mom was the basket case! I couldn't stand seeing her in pain & having the doctors repeatedly telling me to "wait for the preventatives to kick in". I wanted to go smack a few people once CHOP told us that those meds would never have gotten rid of the migraine. We were all at a loss when the DHE didn't work right away.

She's back in school as of yesterday & so far so good. I feel so sorry for all the children mentioned here with migraines. They're the pits!

 

[bavaria]

piratesmate, best thougths to your daughter, and good for you for fightng for help for her. I went a few years before anyone would really take a 6 yo's pain seriously and figure out what was wrong; even then there wasn't much treatment.

Does anyone else get Alice in Wonderland syndrome? (nice Disney name!) I never had a name for it until I saw a Dr Sanjay Gupta piece on CNN. It used to come with my migraines in childhood - a distorted view of size. For me it's mostly tactile - the thickness of my nightgown fabric felt about 6 cm thick. Others see things as teeny or giant. I also would hear my blood going KA CHUGGA KA CHUGGA as loud as a truck.

As I child I could never describe it accurately, but when I saw the piece on CNN I felt like hugging Dr Gupta for describing it so accurately. You may want to ask your kids if they experience it - it's quite disturbing when you are in the peak of a migraine.

 

[Tigger&Belle]

Bavaria, I've gotten what you're describing lots of times when I'm sick. Not necessarily with a migraine, but I know just what you are talking about. I thought it was only me. How strange!

 

[HugsForEeyore]

wow, i learn so much here! i had no idea that your digestive system shuts down with migraines, but boy does that ever make sense! and vomiting usually does 'help' me even though it hurts so much!
anyway, to the OP... i've had migraines since my early teens, i get a small dot in the center of my vision that seems to open into a sparkling semi-circle that gets bigger and bigger until it disappears out of my range of vision. i also get eye boogers (tmi, i know). if i take advil right when the dot appears i'm usually ok, but if i don't i'm in trouble and can go on for hours, even into the next day.

WOW! I think we get the same kind of auras! Your description sounds very close to what I get - the dot opens up and spreads and "sparkles" and slowly floats off the range of vision. This is a very interesting thread, as all the auras can be so different!

 

[Chris2597]

I got my first migraine when I was 17. I thought I was dying. The aura really scared me and then the killer headache. All three of my children inherited the migraines. I have learned there are different types of migraine headaches. My youngest dd and I get common migraines. My oldest dd and ds get complex migraines. A complex migraine starts with an aura that causes severe confusion, inability to put thought and words together, severe numbing on one side of the body, blurred vision, then the killer headache, which is much more intense than a common migraine pain. The nuerologist told us that complex migraines can cause strokes if left untreated. My son is on the Imitrex injection, when needed and Elavil as a preventive. The Elavil has been very effective. I have had to take DS to the ER a couple of times. It is so frustrating as the specialist has told us to get immediate medical treatment if the headache continues to cycle, but we have waited and waited in the ER waiting room (last time for 3 hrs before he was treated), with ds writhing in pain...It was terrible!! I think we need to get a letter from the neuro dr stating that immediatate medical help is required. The last time the triage nurse told me that he gets "migraines" and knows how my ds feels, but he just has to continue working with one.....I didnt say anything , but felt like saying....Ahhhhhhh, no you have a bad headache, if you had a real migraine you would be out for the count.

 

[TruBlu]

My DS 9 has been complaining about bad headaches quite a bit here lately. He describes them as being one sided. Usually a motrin will knock his.

I have this too! It is very different from my migranes. I've been diagnosed with a disorder called "proximal hemicrania" (hope I spelled it right...). Anyway the doc. said that the name pretty much means "one sided headache". He gave me some medication that really helped. He said that it was something that would come and go, but it's been a year since my last one. The headaches can last for long periods of time too. My last one lasted 6 weeks. It was really bad.

 

[TruBlu]

My auras usually start as a "wrinkle" in my vision then start to look like I'm looking thru a very thick sheet of ice. It is very strange. I can't really focus on anything, but there is usually one spot that is clear. If I'm lucky that spot is in the front, but most of the time it is off to one side. I've completely lost vision once. That was REALLY scary! I had a CT scan after that one, but all was well.

 

[TruBlu]

The last time the triage nurse told me that he gets "migraines" and knows how my ds feels, but he just has to continue working with one.....I didnt say anything , but felt like saying....Ahhhhhhh, no you have a bad headache, if you had a real migraine you would be out for the count.

It drives me crazy when people think they have migranes!!! There is NO WAY you can continue to do anything when you have one - unless your job is laying in a dark, quiet room with ice on your head vomiting.....
Now I'm depressed.... this sounds like a better job than mine....

 

[RadioNate]

Mine started around puberty. I generally get one a few days before and a few days after my period.

I have different auras and sometimes none. The most common for me are black dots, like a swarm of little bugs in my left eye.

I have lots of triggers
perfume, msg, changes in weather, hormones

I nearly always have to sleep. I've taken OTC and prescription meds. I currently have vicodin because I'm allergic to NSAIDs and Salicylates.

 

[bavaria]

A complex migraine starts with an aura that causes severe confusion, inability to put thought and words together, severe numbing on one side of the body, blurred vision, then the killer headache, which is much more intense than a common migraine pain.

That's me to a T - the confusion and numbness can be really distressing if one doesn't know what it is....