Migraine people, talk to me

In My Humble Opinion
1

If you or someone you know well gets migraines, aura or not, frequent or rare, whatever, let’s talk about migraine stuff here please.

Lately I have had a normal-for-me frequency of real migraines (a few a month), but a big increase in “not-quite-migraines” – like zits that never come to a head, they linger for freakin’ days, never bad enough to break out the Imitrex, but bad enough to make me want to lie down a lot, and wince when the toddler gets percussiony with the tupperware, and the good pressure points on my face are almost bruised from me leaning on them.

Have you ever been to a “headache center”? My husband wants me to try one. There are a few in Boston, which is a do-able distance.

I’ve done headache diaries and stuff in the past and I think I know my triggers pretty well – lack of good sleep is #1; others include low blood sugar, dehydration, strong smells, noisy noises especially if repetitive, stress especially if involving Excel spreadsheets, and allergies. Fast big changes in barometric pressure are suspect but hard to prove or disprove. I have not ID’ed any specific food triggers and actually read something somewhere recently that the science is not good on those being for certain anyway, but at this point I’m willing to give up, yes, bacon, because it’s on That List They Always Give You. Or anything else for that matter. Except maybe I could go home and finish the bacon we already have first? I really like bacon.

Do you get prodrome symptoms? I think I do, sometimes, but it’s rarely very dramatic. I don’t get aura or any visual symptoms, but there’s this feeling of a ghost tight hatband that should tip me off. Somehow I usually don’t seem to notice until after the fact. Maybe cluelessness is a prodrome thing?

I take a beta-blocker, magnesium, riboflavin, and D3 prophylactically every day. Fioricet for maybe-I’m-getting-one and Imitrex for oh-yeah-I’m-getting-one. Also, cold packs are my friends. I like the smaller gel ones as they’re better for targeting precisely than are big chunks of ice.

2

FWIW, my dad goes through periods of intense migranes every few years. They wake him up and sometimes make him puke. And scream. I don’t know that they’ve lingered for days but they happen for days at a time then stop happening.

Anyway someone on this board one time mentioned using a Neti Pot during a migrane and it stopped the migrane. I mentioned this to my dad and gave him my Neti Pot and it worked for him. Instead of 20-30 mins of intense pain it would go away in 5 or so.

Not saying this is a cure-all but we are so grateful to be able to manage his migranes with this “simple” solution that any time I hear someone has migranes I always bring this up just in case it works for them.

3

You know, I love sinus saline – I use a squeezy bottle instead of a neti pot because I get better control that way – but due to a wacky rare condition I have that doesn’t often bother me, I probably can’t use it during most migraines. I have “intermittently patulous Eustachian tubes.” They get sort of stuck open sometimes, that is, and I actually breathe through them when it’s bad. I get saline solution in my ears if I irrigate my sinuses at that stage…

It is just now occurring to me that some of my main migraine triggers are also Eustachian-tube-sticker-openers, and isn’t that interesting? Bad sleep, dehydration, low blood sugar. Hmmn. The 'tubes seem like just one more thing during a migraine, you know? Along with the smell of soap being suddenly intolerable and crap like that.

I am definitely going to look into that some more. I think I’ve about decided to try the Beth Israel headache center, and maybe they’ll have something to say about it. Thanks, ZipperJJ.

4

We’re a migraine family. When my two kids were younger, I got all the Imitrex prescriptions filled every month. I’d take the pills out of that GAWD-AWFUL blister pack, and put them in a bowl for ease of use. Who wants to fight with the blister pack when in PAIN?

Hubster has the classic migraines with a multi-symptom aura that is frightening at times–he can have huge chunks of his vision missing, and lose the feeling in his arms or legs. My migraines are the “common” variety. It’s a mixed headache with tension headaches a major contributing factor. Son doesn’t get headaches much any more, but Daughter gets a lovely blend from both parents.

Here’s the scary stuff. Hubster now had seizure disorder and Parkinson’s. And the symptoms of both the seizure disorder and the Parkinson’s contain many elements of his headache pattern. He gets monster migraines to accompany either a seizure or a breakthrough of the Parkinson’s tremors. He’s got a fantastic neurologist who is working with him to find the right combination of medication to control ALL the nasty effects. I do worry about the Daughter’s future.

By all means, see a headache specialist. The Daughter sees a specialist, but I am rather disenheartened to realize that she isn’t getting much more help than what I got when I was under siege for so many years. I’d think modern medicine would have improved SOMEWHAT since then.

Migraines are the drizzling shitz. They steal time away from your family, from your job, and from life itself. Do whatever you can to take control!
~VOW

5

Word. Teh suxx0rz. My husband’s realizing all over again how much they steal from us as a family – with a toddler, you really notice when one parent is less available. He is adamant that we DO SOMETHING – not that we haven’t been, of course, just not something that makes them stop altogether, which is what he wants and believes is possible, if only we figure out what we need to do. :frowning: He is unwilling to entertain the possibility that they might not go away, and we might just have to cope. (That would be giving up!) Part of “coping” is “continuing to seek and try new solutions” in my head, but I guess not in his.

I actually have a neurologist but I think he’s useless. He is one of the few doctors I’ve been faced with in my busy patient career who doesn’t really listen. (I’ve been damn lucky most of the time, I’m aware.) He’s satisfied that my frequency and duration and severity are diminished since he put me on a beta-blocker… and yes, “diminished” is great. But this business of *almost *having a migraine more and more often is also a problem, and it perplexes me that he brushes it off. I’m getting excited about going to a “center” where they don’t focus *just *on neurology and are clearly not dismissive of all the other crap that goes with a migraine besides pain and auras – the mood shifts, the way smells hurt, etc. – but are also not into woo.

Very glad to hear your husband has a good neurologist, especially with it all ratcheted up to 11. Scary indeed.

I had the worst migraine I’ve had so far during labor (and oh my god what fun that was, lemme tell ya). Runners-up include after tongue surgery. That and other experiences make me think that when you have migraines, when you’re a migraineur, migraines start to happen whenever anything overtaxes your system. Are they connected? I think yes. Are they caused by the same thing – that is, for instance, were your husband’s earlier migraines caused by pre-Parkinson’s, or whatever causes Parkinson’s, or some overarching neurological fillip that causes both? I think it’s too soon to say, and hope the researchers get busy on it. Not explaining this thought very well.

Also, I agree that blister packs are the work of Satan. I used to use the melt-in-your-mouth Zomig and tried to keep a couple naked ones on my keychain in one of those little metal vials like they use for nitroglycerin, until I discovered that they were corroding the vial. Oops.

6

Oh wow, that part on spreadsheets really hit home. I’m the local Excel guru and I get whopping, whopping headaches a lot. In fact I have one right now…I’m kind of looking at the screen sideways as I type this. I also have strange joint aches and warm patches on my body, which is really fun, as well as nausea and other stomach issues.

I’ve talked about my migraines more in this recent thread in MPSIMS. Basically I’m getting them about four times a week right now, down from six a week early this summer but not so good after having a three-month break. It’s been hard to identify a trigger because I have them so often and it seems like there are a bunch of different triggers. Change in weather, stress or anger, strong smells, food issues, and uh, sometimes orgasm lead to them.

I’ve been on Depakote and that seems to have worked up until recently. I’m going back to the neurologist on Friday to get loads of meds. Right now I’m just squinting at the keyboard (thank goodness I’m a good typist) and hoping the day will end without having to vomit into the trashcan, which has happened before.

7

Find a plastic or glass vial. I LOVE how the instructions with Imitrex say, “Do NOT open packages until you need the medication.” Yeah, RIGHT. Once I bring the stuff into the house, it is MINE, and I’ll do whatever I damn well please. :stuck_out_tongue:

Try EVERYTHING. Ask about acupuncture, biofeedback, Hell, even volunteer for any studies, and throw in some counseling as well. Have you ever had a therapeutic massage? I had one once, and OH MY GOD! Since my headaches have a huge tension factor (plus I have “computer neck”) the massage was like I’d died and gone to Heaven. The head-neck-shoulder-back part was actually painful at times, but honestly, when the masseuse did my upper back, it felt like popping bubble wrap! I was sore for DAYS afterwards, but I could MOVE my head and neck freely and the muscle soreness was nowhere near the intensity of an actual headache. A fitness center might be able to fix you up with a therapeutic massage. Listen, did you know HAIRDRESSERS are trained to do scalp and neck massages? ASK the next time you have your hair done! I used to get my hair cut at a cosemetology college, and first learned about that skill. Since it is 100% stylist effort, there’s no charge for it, so I’d tip the kid REALLY well.

Keep fighting!
~VOW

8

I used to have migraines so bad that I would pass out-- literally just bam! Splayed out on the floor. I would get several a week-- it was literally the most painful, awful time of my life. I tried a bunch of different medicines that didn’t really help and made me a zombie/miserable in other ways: Imitrex, a blood pressure med, etc. The only medicine that helped was . . . fuck, I now can’t remember it’s name. I believe they were nitrogycerin tablets-- I’d melt them on the roof of my mouth, feel tingly bubbles fly up my head, and be better in less than 30 seconds. Of course, I’d then be a bit of a zombie for a while, but a zombie with no pain.

Anywho, I’m really not big on drugging myself up unless it’s absolutely, positively necessary, so I did look to alternative migraine treamtnets. Don’t worry, no one shook crystals over me or anything :). I can tell you that I’m now almost 26 years old and I don’t think I’ve taken a prescription migraine medication since I was 19-- I also haven’t had a full blown migraine in the same period of time. Every once in a while (a few times a year), I’ll get the start of a migraine, but I can usually make it stop. What did I do?

Antioxidants are a huge part of it. I can tell if I haven’t been consuming enough antioxidant rich foods because I’ll start getting that achy, miserable feeling on the left side of my head which is the beginning of a migraine for me. Chugging a smoothie with lots of blueberries or eating a pomegranate will usually fix me up within an hour or so. I’ve read some studies about the link between antioxidants and migraines, but naturally, I can’t find anything that looks terribly legitimate now. Here’s one slightly less than academic looking reference :smiley:

Apples. I know it’s crazy, but I had a hippy-dippy chemistry teacher suggest it to me and- son of a gun- it works for me. When I still got migraines, I would cut open an apple and just smell it for a few minutes, which would immediately decrease the migraine a bit for me. Then, because my teeth hurt when I have migraines and I have the insatiable urge to chew on paper, I chew the apple slowly on the side where the migraine is. I’d say within 20 minutes, the migraine was usually gone completely.

Anywho, I’m not a doctor or a scientist, but these have worked for me. Might be worth a shot!

9

Has he been seen at Yale-New Haven yet? They have what is apparently the top Parkinson’s study group in the US there. [I was having issues with a tremor and my regular neuro sent me there for a consult because both Alzheimers and Parkinsons is present in my family, and I had been getting wicked bad migraines for the past 35 or so years]

I cant tolerate imitrex, but luckily frovatriptan works for me. I get visual or odor prodrome, luckily the odor is fruity or floral instead of something less pleasant, and checkerboard patterns narrowing my vision to a tunnel instead of it just going blurry/dark. My best cure is laying down in a dark quiet room, with a stick of incense masking anything that might bother me smellwise. I add a couple of wool blankets over top of the comforter as the pressure on my body helps. I like to turn on a fan or air conditioner for white noise to cover sounds.

We have positively determined that high fructose corn syrup is a firm trigger, though I can swill all the red wine and eat all the bacon and chocolate I want blargh, what a combination that would be … barometer swings if the are fast, and altitude much over 3000 feet for a prolonged time can trigger one. The usual dehydration and low blood sugar can as well. I had one of the wost migraines of the 35 years triggered by liquiprep prior to surgery, prolonged dehydration, lack of food or drink from midnight to almost noon [1 pm surgical tee off time] and the stress of getting ready for surgery, getting the innards cleaned out, and getting to the hospital for the operation. I got permission to actually get a 2 oz cup of to settle my stomach when I got there and got the IV set - which I promptly recycle into the emesis basin, all down my front and over the nurse standing next to me. I think I was hurking up my toenails before I was done. I swear my entire alimentary canal from mouth to anus was stripped squeeky clean, I have no idea where it all came from :eek:

10

I get a cluster every two to four months, and have been since I was five or six years old. I’m 33.

I’ve never quite narrowed down the triggers, but I’m pretty sure it has something to do with changes in barometric pressure. I’m pretty much guaranteed to get one on the first nice, warm, breezy day of spring, followed 36 hours to two days later by an aftershock that can be worse than the original. I get the works - major vision issues/scintillations, numbness, speech and language processing issues, nausea, etc - followed within an hour by eight to twelve hours of misery and sensitivity for 24 hours or so afterward.

I was on Imitrex awhile back, and it really didn’t do shit. If I can catch it in time, I get a bit of relief from heavy caffeine + ibuprofen, but about once per year, I get a total asskicker that leaves me completely helpless no matter what.

It’s really, really weird, but the mild-to-medium ones make me horny as hell. If I’m riding out the tail end of one in bed, I usually end up molesting my wife in my sleep.

11

I suffer from debilitating migraines (without aura) and have for about 5 years now. For about 3 years I have been a patient at a nationally-renowned head and neurological pain clinic which specializes in migraine. It has been a godsend.

Prior to the clinic, I suffered without ANY relief. Going to the ER even didn’t help; I’d get injected with morphine and get no relief. Finally, after finding the clinic and trying several combinations of preventative meds, I eventually found the right combo. The meds don’t cure the migraines, far from it. They keep the migraines at bay.

I hate being on the meds: a blood pressure med, two different forms of anti-depressants and a anti-seizure med. However, I hate the migraines even more.
I wouldn’t wish bad migraines on my worst enemy.

12

SWMBO gets them constantly. She has problems with a pretty much destroyed TMJ from grinding her teeth at night. She takes Elavil at night to relax her muscles and if she forgets to take it for a day or so, she’ll get nailed. The docs have prescribed some super-duty migraine medicine for her. I forget the name, but it’s a pill that she puts under her tongue and lets dissolve.

If she feels one coming on, she’ll take Advil Migraine and sometimes be successful at heading it off at the pass, but if she has to take one of those prescription bombers, she’s out for several hours.

13

FWIW: I also have TMJ and literally the only thing that lessens the pain from it is an antioxidant rich diet (without antioxidants, I start to get migraines and a sore TMJ jaw).

14

To aruvqan:

We’re on the West Coast, so Yale-New Haven is sorta out of the way for us.

I’m sure any researcher who desperately needs a grant would drool over Hubster’s ailments plus his family history. Our daughter is besieged with headaches now, and I’ve begged her to tell the docs at the headache clinic where she goes about her Daddy’s history. She says she’s tried, but nobody seems to care. I guess she’ll have to wait until she’s 55 and winds up with seizures, with Parkinson’s two years later.

I’ve talked extensively with Hubster’s neuro about the connection I see with all his brain chemistry business. The doctor cannot commit himself to saying, “Yes, you’re right, there’s a link between the migraines/seizures/Parkinson’s.” BUT he listens to all I have to report at each visit, and I know the stuff is being detailed in Hubster’s chart.

Twenty years from now, some talking head will appear on TV and say, “Migraines have definitely been linked to Seizures, blahblahblah…”
~VOW

15

Oh-I forgot to add-as far as emergency abortives Imitrex only works for me in injection form. The pills and nasal spray, while each worked effectively the first one or two times then rapidly became ineffective, are worthless to me. The injections, which come in easy to use, tiny little snap syringes, work however.

16

The worst I ever had was up North on a military exercise. I had to fly on a Twin Otter that day, two blizzards were moving in and I was on ration packs with high MSG. It was horrible.

I have Botox ever four months or so, take magnesium and riboflavin. When I am getting one it’s either a cocktail of Advil, T3 and Gravol or, if I am lucky, the Maxalt will work.

They suck. The Botox helps make them more responsive to treatment, but it doesn’t prevent them.

17

Maxalt! That’s what I used to take that worked amazingly, but would turn me into a zombie.

18

Depends on what’s causing yours, but for me, getting a Mirena (hormonal) IUD has knocked out my migraines for over a year (knocking wood) barring a couple ocular-only migraines.

Before then I was up to a migraine every single day of my period, and anywhere from a migraine a month to 3-4 per week outside of that time. I tried all kinds of vitamins, supplements, nothing helped much or for long. Even did a preventative (either nortriptyline or amitriptyline, can’t remember which), which only worked for a while. I had Imitrex but unless I had an ocular migraine (aura, aka scintillating scotoma), it was too hard for me to figure out the early warning signs soon enough to head off the migraine.

19

That’s pretty much my experience. I switched from Imitrex pills to Maxalt, but those too have stopped working. I also have tried the Zomig nasal spray twice with no results, but I’m hopeful it will still work so I keep one in my purse. The Imitrex injection remains the only reliable method.

When I have a migraine that won’t go away for days, I go to the neurologist for a shot of Toradol. Awesome stuff. Non-narcotic, non-steroidal, and you can get right up and go back to work or drive home.
Also, I keep a course of Medrol, aka methylprednisolone, on the shelf; it’s a steroid that you take for five days to get rid of the recurring migraines. Avoids the bounce-back that you get with analgesics – you know, you think it’s all gone, but the next day it’s back, kind of low-grade, so you want to take something, but you don’t want to, because it’s a vicious cycle and it just keeps feeding on itself. I’ve done the Medrol I think three times in three years. But it is good to have.

One thing to ask about is a magnesium infusion. Poysyn and emmaliminal mention magnesium supplements; this is an IV in which they give you a magnesium solution. I was going to do it once if the Toradol didn’t work, but fortunately it did.

Next time I see my neurologist I am going to ask about the Botox, but I don’t know what my insurance will cover. I had a very bad time for about two weeks after Thanksgiving, but a shot of Toradol and a dose of Medrol helped.

My big triggers are drops in barometric pressure, any kind of fragrance, smoke, and certain botanicals (lavender, eucalyptus, rosemary). Heat helps me, instead of cold; a very hot shower or heat pack will work in the very early stages. Ice does nothing.