Migraines: how much do they suck?

If you’re going to use a Neti pot, you really want to use distilled or purified water.

http://www.npr.org/blogs/health/2011/12/19/143960631/second-neti-pot-death-from-amoeba-prompts-tap-water-warning

More people have died by jumping into the water than by that. I get the concern factor, but I’m not sure it’s that big of a deal. (I have trouble understanding how a single-celled organism is likely to survive the hot water heater, chlorination, and an isotonic salt solution as well, though I suppose it’s possible.)

My main problem with using distilled water would be that it’d be stuck at room temperature (~65 F or so for my house during winter, at best). That may not sound too bad, but it’s friggin’ cold when you pour it through your head cavities which are all at a toasty 96.8F or so.

I’d like to amend my previous post in this thread by saying that, after living with chronic nightly cluster headaches for a year and a half, I’d take 24/7 migraines in an instant if I could choose between the two.

My personal pain scale has also undergone a radical shift.

So I have a new thing going on at the moment. My blood pressure has suddenly spiked to 170/120 for no reason that anyone can determine and I have a loss of sensation down my left arm. For the last five days I’ve had constant pins and needles in my arm and I don’t have much feeling in it. It’s apparently the symptoms of a migraine but without the crippling headaches and tunnel vision that usually accompany them.

I started getting occular migraines but without the pain right after having my heart surgery a year ago. Supposedly they’re not related to my heart issues. Had a thorough checkup then and again a few months ago to get a pace maker so that should rule out any other issues.

Also went to the opthalmalogist for a full exam thinking perhaps it was retinal detachment (from Marfan’s syndrome, the reason for my heart problems). But everything was fine. Get them about once or twice a month. Again, no pain, but pretty annoying anyway.

I get them a couple times a year.

They start with a visual distortion in my eyesight. No pain. Just the visual anomaly that looks a little like there’s a cloaked ship or something in my vision. :)

About half an hour later, the pain starts and it usually takes me down for hours. Luckily it’s infrequent but it sucks.

I don’t know what triggers it. It’s not stress or food as far as I can tell. It’s more likely to occur if I’m in a dark room looking at a bright computer monitor but that’s not saying much because that is my default state of being. :)

Mine sound a little like Brad’s. I get them a few times a year as well. They pretty much always follow the same progression:

  1. I lose a bit of peripheral vision in one eye (side varies). I don’t usually catch on right away, but suddenly I’ll just notice something off…something I could normally see but can’t.

  2. A short while later (15-30 minutes), I get the feeling like my arm and/or leg has fallen asleep on the same side I lose the peripheral vision. I can still move normally, but I get the pins and needles feeling.

  3. If untreated (which almost never happens any more), the headache hits me full bore, usually accompanied by nausea, and I’m down for a few hours.

  4. For the next several days I’ll have what I call an after-headache. Basically a dull headache that isn’t really painful unless I lean over, sneeze, cough, etc.

I’ve had these headaches since I was a teenager, and definitely had good and bad years. In the old days, when I noticed a symptom I’d hit the Tylenol, go lay down and pray I fell asleep. 10 years or so ago I finally talked to my doctor about trying a prescription med, and we went through a few with varying success.

He finally put me on Treximet a few years back until my insurance company stopped covering it, and he put me on Sumatriptan and Naproxen. That combo has worked really well for me. Now when I start getting early symptoms, I take my meds and lie down until they pass (about an hour). After that all I have to contend with is the after-headache, which is cake compared to the rest.

I’ve spent a lot of time trying to figure out triggers for me and never really had any success until my wife noticed I got them several times after eating spaghetti (which was wonderful fun with the nausea component). She switched sauces and I’ve had a noticeable decrease in frequency. There’s no evidence that I know of to support red/tomato sauce being a trigger, and certainly in my teenage years and twenties it’s extremely unlikely I was eating that particular sauce, but it’s too much of a coincidence for me to just dismiss.

I’m a doctor, but not that kind of doctor, and I don’t know why it’s being listed separately. shrug

My migraines have been getting more frequent and I finally got referred to a neurologist (by my gynecologist, weird). I’ve read a lot about migraines and their triggers over the years, but there were a couple things the neurologist said that were interesting and new to me.

First, she said the reason that you’re supposed to take meds at the first onset of migraine headaches is because about an hour into your migraine, your stomach stops churning. That’s why you feel nauseous. You can take meds, but your stomach can’t process them and they have a hard time entering your blood stream. There’s injectable drugs that you can take if this applies to you. Injectables bypass the stomach. An interesting side-note is that your stomach also stops churning in childbirth. That’s why a lot of women will throw up early in labor, and one reason that doctors might discourage women from eating in labor. The more you know!

Second, when you take a drug to relieve pain, that’s called a “rescue drug.” You’re only supposed to take one or two rounds of rescue drugs in a week. If you find you’re taking rescue drugs more often than that, you should see a doctor about a preventative plan. Rescue drugs can trigger rebound headaches and can saturate your blood stream, causing the medicine to be less effective and the pain to persist or worsen.

So now I’ve started on Inderal for migraine prevention, and sumatriptan or naratriptan (lady’s choice) for migraine onset. I’ll also chart my headaches because I’m pretty sure my memory of them is warped.

Migraines suck.

I’ve dealt with those awful things for decades. They do come in waves, I’ve found. I’ll have a higher incidence level for a month or two, and then I can go that long without a single occurrence. I used to be on a medication for a time which diminished the amount I got as a side effect (Depakote), and that was quite nice.

Been dealing with them for most of my life.
Sumatriptan has been a life saver for me, there is nothing that is as affective as an acute treatment, but yeah, if you take it more than a few times in a week it will actually cause more headaches. I also have a prescription for butalbital, which has a barbiturate in it and while thats fun, it is too sleep inducing for me. I tried topamax as a preventative, quite frankly it made me stupid. Cognitive decay is a side effect, I stopped that when I found myself drooling on myself on the desk at work. I have not tried any other preventatives.

My migraines usually present with extreme light sensitivity. Like, lock myself in the room, tape the doors and windows, pillow over my face sensitive. Even the slightest light is like a dagger to the temple.

Have you looked into botox injections? I go to a migraine specialist and shes told me its the latest in preventative treatments. I don’t get migraines quite often enough to qualify.

yes they suck :(

They suck indeed. I normally only have migraines a couple of times a year, usualy triggered by stress (positive or negative), so I never tried any medication, but over the last two months I’ve had 7 attacks, so if that frequency continues, I may have to reconsider… On the upside, the attacks I do have are a lot less severe, with a lot less pain, and I found out that ordinairy Sainsbury’s ‘Migraine relief’ (Ibuprofen + Lysine) works a charme for me. Too bad they don’t sell that in the Netherlands…

As for solutions: here’s one I recently heard about and haven’t tested yet. Apparantly the breathing technique to reduce stress (breath in, then breath out twice as long, repeat) also has the potential to stop migraine attacks. Sounds way too good to be true, I know, but it’s also very simple, so might aswell give it a try?

I would definitely recommend anyone with migraines log them. I started doing so in 2012, recording the date/time of onset, the symptoms, any unusual food or circumstances, etc. What I’ve come to learn is that my migraines appear to be somewhat seasonal. There’s a window from about mid-August through November that they seem to occur. I’ve got a few outliers (all within a month or so of that window), but most of the 12 migraines I’ve had since I started logging fall in there. My GP didn’t really have any input on why it my be happening during those months, and certainly no change in advice in terms of treating them (I’m still on sumatriptan/naproxen at onset), but if I ever go to a neurologist it’s good to know I’ve got it all recorded.

I’ve been taking twice-daily propranolol (that’s the Inderal) – side note: anything with “LOL” in the title has got to be good – and have noticed a marked improvement in the severity of the migraines I get, the frequency, and the duration. And the bonus is that propranolol is also an anti-anxiety medication, so my mild anxiety seems to be better as well. Because I don’t really like medicating, I experimented with stopping the propranolol: After about a week headache-free I tried to taper off, and immediately got a migraine. So, back to the happy pills.

JackBurton: You said the topamax made you stupid and I definitely see some cognitive performance issues with the propranolol as well. It’s very similar to “mommy brain,” a condition new parents get when they’re sleep deprived and stressed out. I’ll lose things in my house or forget doing (or having done) things. I’ll forget everything people have said to me. And I’m much more distracted, even when trying to be alert. A couple weeks ago I nearly ran over a pedestrian with my car, and I used to consider myself one of the most careful drivers I know. So it’s definitely taking some adjustment to compensate for the mental effects.

Thanks for the suggestion of looking at migraine patterns, Gedd. I’ve charged a few months which isn’t enough to see any yet, but I’ll keep at it.

mjgreeny75: Yes, stress is certainly a factor for me as well. My migraines are super slow to come on. I could imagine that doing some intensive destressing at onset might help… though I’m dubious… but let us know how that works for you!

Oh - and some other neat effects of the propranolol. I’ve started getting some mild synesthesia, in that I see loud noises as flashes of light. And sometimes I see dark blotches pass through my vision really fast. It’s weird and delightful.

Well, from my experience with the two migraines last week, the breathing technique doesn’t work. Problem is, I don’t know I have a migraine until I get the blind spots in my vision, at which point it’s probably simply too late. So this not working was to be expected, ofcourse, but I still hoped for a miracle :-).

As for the side effects of propranolol: sounds weird and kinda scary to me, not quite delightful…?

Last week I lost my credit card. I called the credit card company and reported it lost. Then went to make my bed and found it under my pillow. Propranolol is awesome.

I suspected I had started having migraines lately. Regular pain on the same side of the head.
Confirmation came yesterday when I woke, couldn’t read anything because of artefacts in my vision, and one hour later, came a crushing headache. It turns out that is pretty much textbook aura migraine.

But then I read this.

I had what was thought to be a chronic sinusitis since my childhood. I didn’t think to link it up with my occasional eye troubles, because usually, I could just skip by till the vision came back. Yesterday’s different part was mundane: my wife had this text she insisted I proofread for her, and for the life of me, I couldn’t.

My migraines last a whole day, sometimes a bit more, but they aren’t really debilitating (well, I can’t get work done, but I can fake it, so it’s all right), only painful.
I feel a pulsating pain that seems synchronous to my heartbeat, that starts behind the left eye and goes down, sometimes to the teeth, with a thumping echo at the top part of my skull on the left. I also feel weak overall, with dizziness and the feeling my legs can give up.
Reading all the pain reports here, I am glad with my mild form.

A good friend of mine, his wife had crippling migraines for over a decade… they tried for years to figure out what would help and botox injections in the scalp fixed her completely. Quite miraculous, and he said tons of other people found the same solution worked for them too.

Just FYI.

I had migraines for years, but following fires advice above, I documented them & strangely enough they were always on Sundays. Debilitating, knock me down, all I want to do is whimper & stay in a dark room for the day, drinking nothing but water.

I thought it was late night gaming, or late night drinking, or some thing, but it alluded me for years.

Then I was reading an article about Caffeine withdrawal and it totally clicked. I drink coffee every day Mon-Fri, but then I don’t drink on the weekends sometimes because I would sleep in and wouldn’t need it.

I decided that these were bad enough that I had two choices:

  1. Drink coffee all the time, and be essentially addicted to it.
  2. Switch to Decaf

i switched to Decaf & in rare instances (travelling to Costa Rica or India where Decaf isn’t in their vocabulary) where I have to drink normal coffee, I have to ween myself by going half-n-half for a few days to drop it again.

Hopefully this PSA helps someone else "click’ with a caffeine withdrawal and help them!