The Thread for Migraineurs

In My Humble Opinion
1

I know that many folks here on the Dope have migraines. I’m starting this thread to allow us to share information on migraines, or just commiserate if needed.

I’ll start us off with this link for registering for the Migraine World Summit. This is an online summit, with solid participation with known experts in the field of migraine research. There’s usually some interesting info. You can also get access to the talks and papers after the conference, which is what I do.

Registration Link to the Conference

Another useful website and newsletter that I have found is Migraine Again.

I’m interested in hearing your stories. What works for you? Have you tried anything new lately? Any recommendations?

2

My doctor gave me a prescription for Relpax about a year ago. I don’t know if it would help everyone with migraines, but it’s been good for me; I take a pill when the first symptoms start, and skip the whole thing where I can’t stand bright lights, get nauseous, and have to go home and spend the rest of the day in bed.

3

Someone about a year ago posted about brain freeze. I want to say it was Ambivalid, but I can’t remember for sure, and I can’t find the thread.

Anyway, not always, but that often times works. I get a few different types of migraine, some of which are entirely my fault (letting my metabolism get screwed up by not eating right or exercising for a while), but many of them can be cleared up in minutes using the brain freeze technique.

4

I confess to trying the brain freeze thing too. Because it’s freaking brilliant! It’s not a long term solution for me, but it’s instant relief while the meds kick in.

My Dr had me try Rizatriptan last year but it really didn’t work for me. A lot of things conflict with my BP meds. So I’m strictly extra strength Tylenol (can’t do T3), and when things are very bad I use Statex morphine, 2-5 mg. I can go a long time using only Tylenol. But then, BAM! I also get a four day, unrelenting, headache at the onset of spring and autumn every year. When younger, I spent that time in a darkened room, with an ice pack! The right meds have significantly changed that.

As I aged I grew better able to handle the pain, I thought. Then a BP episode that landed me in hospital saw me instructed to never EVER let my headache rage away again. I am now much better at migraine management. I see now I could have kept these headaches from impacting my life so negatively, for years, if I hadn’t been afraid of taking meds. I would wait till I was in terrible pain, in the optimistic hope it would go away on its own, just to avoid taking any pills.

Just another joy of maturing is realizing what an idiot you were about some things.

5

I started getting migraines at age 22. Sometimes I get the railroad-spike-in-my-head pain, and sometimes I just get the aura and don’t get the pain. The aura consists of flashing lights that fill my visual field, rendering me unable to drive, read, watch TV, or anything else.

I take gabapentin as a preventative, and it’s helped.

I really worry about my son, though. He gets daily migraines. With Imitrex, he’s able to work through the (reduced) pain. He’s tried every migraine prevention Rx out there, and none have worked. He’s been getting botox injections in his scalp every 3 months for well over a year. They reduce the frequency of the migraines to every other day, but even that seems to wear off after awhile.

I read about a surgery that lasers the nerve responsible for migraines. Does anyone know more about this? It really upsets me that my son is plagued so badly by them. Nobody should have to live that way.

6

I take a prescription pill at the first sign, which is visual auras. I forget the name of the medicine, but it’s not Relpax; my wife uses it though. Next, I turn off the lights, and climb under the covers. When I wake up, my head will still hurt, but not as bad as before and my vision is no longer blurry. I’ll take a couple of Excedrine Migraines (my go to for all headaches, not just migraines), and drink lots of caffeine.

My migraines last three days. Day one, death would feel better. Day two my head still aches and feels fuzzy, for lack of a better word. Day 3 my head aches a lot less, and feels like an airy balloon. Excedrine and caffeine all three days.

Sent from my HTC U11 using Tapatalk

7

My migraines may not be classic migraine, but they present like them. They are likely either as a result of also having multiple sclerosis and systemic peripheral neuropathy, or one of those conditions that often occurs in people who have one or both of those. Granted, few people seem to have both of the aforementioned, so I guess I am triple lucky?

Anywho, I’ve just (2 weeks ago) started on low dose Topamax as a preventative. Adding this to my drug cocktail has been a challenge of itself, the side effects are fairly crappy - however still better than daily migraine pain. I was going through my entire 9 doses of 100mg Imitrex within a week, and that was just not going to work long term.

Topamax is an anti-convulsant, and in higher doses can help people with certain types of seizures. Among other things, it’s caused me to have a soft tingling sensation in my hands, feet, and face. All carbonated beverages taste flat and food tastes a bit bland. The first week as I started ramping up the dosage, it GAVE me headaches. But it’s leveling out now and it seems to be helping. It’s much cheaper than Imitrex, so I’ll give it a good try.

8

Today was a sneak attack, I woke up with nausea and a pounding headache. My migraines are usually very predictable and manageable these days. Today, pfft, I dunno. The nausea strikes only a couple of times a year. All I had on me was ibuprofen and diet coke which did the job eventually.

This is the weirdest type of headache in the repertoire, because other people can tell something is wrong with me before I know it myself. Last night I was just tired. “Why don’t you take some Advil and get some sleep.” OK. I go to bed, forget the Advil, and pay for it the next day. Every time.

9

That one has always been hit or miss for me. I keep it around because it comes as a meltaway (Maxalt-MLT). This way, if a headache wakes me up in the middle of the night, instead of convincing myself I’ll be find by morning because I don’t want to get up, turn on lights, find my Imitrex, trying to rip open the blister pack or look for a scissors to cut it open, get water etc…I can keep those in my night stand. If I have a headache I cap pop one in my mouth and go back to bed.

It also gives me a second option since I keep both Maxalt and Imitrex in the house.
Here’s a question I’ve been meaning to ask. Does anyone else have migraines screw with their digestion? One of the ways I know I have one coming on is that even if I haven’t eaten for hours, I’m still really, really full. For example, I can have lunch at noon but at 7pm I can still hear the food sloshing around in my stomach. I always have to remind myself that when I have that feeling and even the slightest headache, I need to get some meds in me, it’s only going to get worse.

I assume everyone (or many of you) get the “OMG I’m having a heart attack” feeling from triptans. The first time I took a migraine med (Imitrex injectable), about 10 minutes later I felt everything from my chest up (mainly my shoulders and jaw) get very tight. It concerned me at first, but I checked the prescribing information and it’s specifically listed as a side effect.

How about the ‘skin crawling’ sensation. I’m not sure how to explain that one, but a few hours after I’ve taken my meds, my skin gets really, really sensitive. Often times I’ll hop in the shower and wonder why it feels like scalding nails being shot at me, only to remember that I had a migraine and took meds before I went to bed last night.

Another side effect I get is that if I have to take my meds more than two or three days in a row I really start to feel crappy. It makes me kinda run down, but even more so, my joints get really stiff. One Imitrex and I can crack my knuckles every 5 minutes. Twice a day for a few days and I feel like I’m 80 years old.

What I really wish, is that I could get my hands on vials of imitrex. Back when I first started using it, it was something like $200 a dose (mid 90’s). Eventually it went generic and the prices came down and now I pay a buck or two a pill, but the vials are 20 or 30 dollars each (and I never liked the statdose system). Even though it works better, it’s just too expensive.
Coupla things everyone should know. Don’t hesitate, take your meds. Typically I’ll take a normal OTC med (tylenol/advil etc) and check the time. If the headache isn’t showing any signs of letting up (or it seems to be angry that I tried to get rid of it), it’s time for the real meds.

Learn how long it takes meds to work. I’ll redose at 2-3 hours for Imitrex, but Maxalt can take 4 or 5 hours (sometimes) to work so I’ll push off taking it again. Both these meds have a 2/24 hour limit so I hate redosing if I don’t have to and then not being able to take it again the next day.

If you aren’t getting anywhere after a few days, call your doc. They can prescribe steroids. My doc will actually put refills on my steroids so I can keep them on hand. If that doesn’t work, at least for my doc, I can go in and they’ll run an IV with steroids, Torodol and depakote.

And speaking of Depakote, I just switched from Topamax to Depakote. This ‘I was gonna say something but I don’t remember what it was’ shit was getting old.

I’m sure there’s more. I’ve been having debilitating migraines since first grade. Many of them are more painful than my kidney stones were. Sometimes I wonder if they’re cluster headaches, but I don’t know enough about those.

On a possibly related note, I also get a lot of ‘bad headaches’ that I wouldn’t classify as migraines. They’re headaches that I think ‘normal’ people would call ‘really bad’ but my pain tolerance is screwed up from these. When I get a normal headache or even a really bad one, I can typically still stay at work, drive, watch TV, eat where I think other people wouldn’t be able to. Once I get a migraine, even a non-debilitating one, all bets are off.

PS Imitrex will knock out a hangover.
PPS Adderall has increased the amount of migraines I get.
[Hits preview to see how much I just rambled on. Have fun with that post]

10

Yes, the pins and needles feeling is really strange. It lasted about a month or so when I first started Topamax and would start up again any time the dosage was adjusted. In all the years I used Topamax it never went away 100%, but it backed way off, plus I got used to it.

That’s something I do all the time. Tell myself I’ll be fine later or in the morning. I have to very deliberately tell myself to just take some Imitrex before I go to bed (especially if I tried Tylenol/Advil earlier). It’s either the crappy Imitrex side effects in the morning or the crappy imitrex side effects AND a migraine in the morning.
Also, FWIW, I don’t get auras. Never had one, only read about them.

11

Sorry, as I just ordered more Maxalt, it reminded me of another suggestion. Stock pile those meds. My insurance company only lets me get a certain amount per month. I’ve found that if I don’t stock pile them (I probably have 50-100 on hand) I can run my supply down to nothing and get myself into trouble if I have a bout of migraines.

12

It sounds like you have fairly frequent migraines despite being on a preventative regime, right? Now you’re the last person who needs advice on how to handle your migraines, given the decades you’ve had 'em. But you and I share a lot of the same issues with our headaches, even tho overall we’re quite different.

Your preventative regimen of the Topamax (anything else?) seems like it’s been a clear failure. Having to rely on abortives (don’t act like that’s not the first word that comes to your mind either. We’re pros! ;)) isn’t an ideal, reliable longterm solution. How much focus have you put into figuring out an effective combo of meds to function as preventives? In addition to Topamax, I’m also on Pamelor (nortriptyline, a tricyclic antidepressant) and Corgard, which is a beta-blocker and is known generically as nadolol. All of these meds are prescribed ‘off-label’ as the three meds are approved to treat eplilepsy, high blood pressure and depression. And my trial-and-error process of figuring out what I needed in order to keep the migraines at bay had to be whittled down as specifically as the freakin’ mgs of each dose.

Anyway, if you’ve already gone thru the entire (often frustrating) process of determining what works for you, just disregard all this. I certainly don’t mean to point out the obvious or anything. :slight_smile: I just know how much this shit sucks.

13

Sorry, do you mean you’ll take another Imitrex after a few hours? I thought it was common knowledge that you risk bounce back migraines by taking prescription meds more than one.

14

https://boards.straightdope.com/sdmb/showthread.php?t=831065

15

I dunno. That’s a fine balancing act for some of us. I spent so many years completely uninsured and with zero medical supervision, self-medicating full blown migraines with OTC pain relievers and caffeine and anything else legal I could get my hands on - never realizing I was only compounding the issue by giving myself rebound headaches (not to mention liver damage).
On the other hand, the dosage instructions on sumatriptan say right there on my Rx to take another 100mg in 2 hours if the first one didn’t do the job. Plus, to my understanding, triptan drugs don’t really work UNLESS it’s a migraine?
So if it’s a question of taking two prescription pills to 95% certainly kill a migraine, or one prescription pill then needing to supplement with a handful of Advil to probably not kill it, I know what I choose.

16

Mine started early too, at age six. It’s probably why I’m such a casual about them, I don’t know any other way to be. But I didn’t get visual auras until I was 17. It was 1987, not all doctors believed in them, and one recommended around that time that I should probably see a psychiatrist. Nowadays people re-create their auras on Youtube, a sign that times have changed, but I don’t remember ever bringing up migraines to my doctor and I’ve seen him for seven years. It’s all DIY here.

So the last script I had was for injectable Imitrex in 1990-something. I’m a big fan of Imitrex, I like knowing it’s there at the ER if I ever need it. Unfortunately that’s about all I know, and I consider myself among the lucky ones.

17

This failed to post earlier, so I’m trying again.

You might talk to your doctor about trying either Frova or almotriptan (Axert) as your abortive medication. Rizatriptan didn’t work for me either, but there are a lot of triptans out there and another one might help you.

Yes, the surgery exists. There is a way to find out if your son is a good candidate. If your son is seeing a neurologist, he should speak to them about the procedure. The way it should work is that the doctor (or an anesthesiologist who works with them) will numb those nerves (there are a few different procedures for this). If the numbing works, then he is likely a good candidate for the more permanent surgical procedure.

Another thing to look into is DHE. There are various forms of treatment with this med, including nasal sprays and infusions. There is also a long term treatment that can last for 6 months or so that involves several days of treatment. If your son is not seeing a neurologist who specializes in migraines, let me know. I can post a national list of certified specialists.

Another thing I want to share, just in case anyone else is bothered by barometric pressure changes and weather, is this blog article with charts on global pressure patterns. Here’s a link to data on just the United States. I found this data because my sensitivity to weather means that I am looking for a new place to live that will (hopefully) be more comfortable.

18

I had an ocular migraine once, last year. I didn’t know what the fuck was going on so I googled “bright colored spot in vision” or some such combination of those keywords, and right away I found out it was an ocular migraine. It was an unpleasant feeling, but not as bad as a headache. It passed in about half an hour. The brightly-colored, prism-like spot of wavy, jagged lines gradually expanded and expanded until it was at the periphery of my vision, and then dissipated.

19

I think Topamax actually did an okay job, but after being on it for probably 15 years, I was getting tired of the side effects, namely the feeling that my IQ dropped about 20 points. My GP (not my migraine doc) also pushed for me to switch away from Topamax because I’ve had kidney stones. Even thought the exact composition of the stones isn’t known to be caused by Topamax, his thoughts are that I clearly have kidney issues, so why risk it. FTR, the second my migraine doc heard about the kidney stones, he swapped out my meds for something else until he could get the stone results back. When he saw them he was comfortable switching me back.

I’ve never done beta-blockers just because I did’t want to mess with my blood pressure. It’s always been good, so I want to stay with the anti-seizure meds for the moment. And for reasons that I can’t even understand, I’ve always wanted to stay away from anti-depressants.

It should be noted that before Topamax, I probably got at least twice as many migraines and/or ‘regular’ headaches as I do now.

I do, trust me, I’m more than aware, however, there’s not much of an alternative. Laying in bed knowing that even the vibration of a truck driving by makes my head explode…not thinking ‘OMG I’m going to die if this gets any worse’ but instead thinking ‘OMG, I might not die’, at best, the second dose will help. At worst, I’ll be back where I started.

I had a friend call me in a bit of a panic one day. She totally lost her vision, like, she went blind (and she was driving). It lasted for a half hour or so. The second time it happened, she went to an eye doctor (even though her words were ‘I thought I was having a stroke’). I said ‘migraine’ before she could finish the story. Of course, that’s why she called me, but still, they can actually manifest in painless ways.

Oh, another thing, for anyone that gets nauseated, ask your doc for Zofran. When the imitrex kicks in, the nausea is one of the first things to disappear, and it happens in about 10 minutes with the injections, but it’s nice to have some Zofran on hand.
I should also note that I have a great doc. It’s a neurology office and I see one of the PA’s. She’s always worked with me, allowed me to have refills on prednisolone, written me scripts for whatever (migraine meds) I want etc. For example, when I started Depakote, it came to $40 or $50 a month and I didn’t think twice about emailing her and asking her to call it in as different form (ER instead of IR maybe) because that only cost $5.

20

Not exactly. I get nauseous. Extremely nauseous. One annoying side effect I have is I need to urinate all the time.

I haven’t noticed this. It sounds unpleasant.

My infusion cocktail these days is Keppra and magnesium, with a side of Toradol, and 1-2 anti-nausea meds. Sometimes they’ll add in steroids.
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The triptans are generally labelled that you can/should take a second dose if the first one doesn’t work within a specified time.

I’d encourage you try some of these. If you think about it, you’re already using drugs that are normally prescribed for other purposes (epilepsy and bi-polar disorder, for example). There’s also Botox, and some new devices that all might help you with prevention.