So as to not bury the lede: I'm not giving medical advice, but I wonder how many people's migraines are worsened by the Valsalva maneuver? How many would be prevented with a daily low-dose aspirin?
I had my first migraine (with aura) as a teenager. What a scary thing for you to lose proper vision, get a truly nightmarish headache, then feel nauseous and throw up! On average I'd say I got 1-5 a year for many years. I managed them with Migranal. Triptans didn't help. Migranal was an expensive pain to get, and is a poster child for our crazy pharmaceutical situation, but I digress.
I had a concussion a few years ago after which I could hardly go two weeks without getting at least one scotoma. In contrast to before, sometimes it would be just the aura without headache. For insurance reasons I moved over to Nurtec which wasn't bad, and a lot less unpleasant a taste. But 30+ incidents a year was crippling.
My neurologist was convinced my troubles were due to a PFO (patent foramen ovale): in the womb, we obviously do not breathe. A hole between the left and right sides of the heart allows blood to flow through from the mother. At birth a flap is supposed to cover this hole, but in many people it doesn't close all the way and there's a residual "shunt" which allows the "dirty" blood to flow straight through without going through the lungs (which also filter out junk, like microclots for example). When you strain, such as when bearing down/lifting something heavy/Valsalva maneuver, it really pushes this stuff through. Indeed I seemed to notice migraines came more frequently when I was better about exercising.
I had some other sporadic things over the years. My neurologist said "the brain is a big network. Throw a bunch of crap in there, and you get nonlinear outcomes." He was convinced the PFO was to blame for all of this.
I was referred to an interventional cardiologist, whose research had concluded, basically: "not all migraines are resolved by closing the PFO. But, if blood thinners make the migraines go away, in those cases closure does make them go away." Bayes at work. I was put on blood thinners and indeed they virtually stopped. (Sure enough, one of the two I did have in the year I was on Plavix--again, down from 20-30--was when I was doing the Valsava to pop my ears while a flight was landing).
After a year I did have the PFO closed. I am still on low-dose Aspirin (baby/EC). The neurologist had prescribed it years earlier when he first tested me for the PFO, but I resisted having to take medication daily. My original cardiologist who examined me further for the PFO said it was tiny and thought it was clinically insignificant, and didn't think I needed the aspirin. I've had the PFO closed for a year. I had one migraine during the procedure itself (not unexpected), and one more after about six months when I went off the aspirin. So I went back on the aspirin, and will presumably continue to be on it for life.
There are still unanswered questions: none of this explains the concussion, does it? The theory I've pieced together is that migraine is a probabilistic phenomenon. Things can make it more or less likely, presumably by putting the brain in a more or less resilient state. Bad sleeping habits? Inconsistent timing of food (low blood sugar)? Dehydrated? This is playing with dry kindling, waiting for the spark: perhaps a microembolism crossing through the PFO, or some other vasoactive compound (I've had them from the sun reflecting off of something and catching my eye). It was around puberty time when it all began, so a lot of stuff is going on. My thought is that perhaps the concussion "permanently" lowered my threshold.
My mother had always suffered from migraines. For other reasons (old with heart issues), she went on blood thinners temporarily. Then was off the blood thinners. Then she was back on blood thinners. Sure enough, after my experience we looked at her migraine log, and can you guess what pattern we found?
At present, closure is only indicated after you've had a stroke (I had at least one event that adequately qualified). I'm lucky: a few years before my adventure, my coworker had a stroke (while lifting weights) with permanent consequences, after which his PFO was closed. We already know that migraineurs are frequently at higher risk of stroke. I would bet that PFO closure will become a more routine procedure in the coming decades.
If it's not too much to ask, how did you find that procedure and its recovery? I have a moderate PFO and have occasional migraines with aura as well, though in my case the pain component is minimal. My vascular specialist has suggested I consider having the PFO closed, but I have not looked into what is involved. I had a procedure to "deal with" a dural AVF a few years ago, and for some reason I have more anxiety about the PFO...but maybe that's just because I haven't read up on it yet...
Not at all. Honestly the procedure was fairly trivial, as surgeries go. The procedure itself took about 15 minutes; I was awake and even watched the progress. They go in through a catheter in the thigh/groin area, snake up and deploy the device, which is roughly a double-sided umbrella/clamshell, one half on each side of the hole. Mine was a GORE Cardioform. It's safe for MRI within some parameters: I have a card I have to show the technologist.
In total, of course, it was an all-day affair. For me the worst part was having to lie perfectly still for about 4 hours in recovery, to not pop a stitch. Even so, that night at home I did have some bleeding and ended up going to the hospital. They simply applied pressure and a stronger bandage. If I remember correctly, I basically had to avoid strenuous activity for a couple weeks, but aside from that initial bleeding recovery was not a big deal.
For me it seemed like a relatively low risk / low impact procedure (modulo the US healthcare cost lottery). I enjoy scuba diving as well, and I know that PFO also correlates with increased risk of decompression sickness. In addition to the migraine aura, I'd had, let's say a small handful of other minor visual glitches over the years (even predating the concussion), so from my perspective, my most valuable resource, my mind, was getting attacked by microemboli, and for me, correcting the issue mechanically was preferable to living on pharmaceuticals (especially since that only solves part of the equation anyway).
Thank you very much for your perspective. The recovery sounds very similar to that of a cerebral angiogram, of which I've had three.
I had a similar calculus when considering having my AVF corrected...like, deal with it now while I'm relatively young and can still heal fairly well, or deal with it later after the risk of complications has slowly and steadily increased with age. It's just a matter of getting over the anxiety hump I guess...
"I managed them with Migranal. Triptans didn't help."
Similarly, I found that triptans (sumatriptan) wasn't as good or as effective as ergotamine-based formulations.
Whilst sumatriptan worked it didn't suppress migraine pain as effectively as did ergotamine, nor was its effective duration anywhere near as long. A single 1mg dose of ergotamine would last 24 hours whereas 100mg (the stronger dose, 50mg being the other) of sumatriptan would last only 6 or so hours and its action not as effective.
The other problem is that until recently sumatriptan† was much more expensive than ergotamine. I say 'recently' because where I am in Australia the price of ergotamine has gone up eightfold in recent months. Now, it seems the only drugs availabe are the triptans—and that's not the only problem, here triptans are only available in packs of two (or four on script for half strength tablets), which is a ridiculously small quantity—one runs out of the drug when it's most needed. (Clearly, the bastards who set the regulations don't get migraines.)
On the other hand I could get 100 capsules of ergotamine on a single script. As far as I'm concerned, I'm back in the dark ages before my migraines were diagnosed.
No doubt, medicos and pharmacologists who read this will say that triptans are better drugs in that they are more selective, that is their vasoconstrictive effecs are more specific and thus less harmful than ergotamine and no doubt there's some truth to that.
That said, what they and drug manufacturers don't emphasize is that the triptans also have bad side effects such as serotonin syndrome which can be brought on by interactions with other drugs such as the TCAs/tricyclics, MAOIs/monoamine oxidase inhibitors just to mention a few (of the side effects). Also, they quickly become ineffective upon repeated dosing — hence the restricted quantities per script. Yes, ergotamine also has some nasty side effects but not those I've mentioned for the triptans. One of the greatest benefits of ergotamine is that it's just as effective after taking it for decades as when one first starts (I know from experience).
It seems to me the benefits of the triptans have been oversold and that medicos et al actually believe the mantra. It's great for Big Pharma to have everyone believe that given that ergotamine is a readily-available natural product (from ergot fungi), and that any competent lab could refine it for medical use. It's great for Pharma to have everyone believe ergotamine is obsolete.
In the meantime the switch from ergotamine to triptans has caused me nothing but trouble.
___
† Before the recent huge price hike a capsule of ergotamine was about $1 versus $8 for the half strength 50mg sumatriptan tablet (where I am in Australia sumatriptan is available OTC in packs of two for ~$16, the full strength 100mg being script only and even then only in packs of two).
Now do the sums: in my case full-strength (100mg) sumatriptan only lasts 6 hours versus 24 for the 1mg ergotamine. Thus the 24-hour cost for ergotamine is [was] $1 whereas sumatriptan is 24/6 x $8 which makes it 32 times as expensive as the ergotamine!
Moreover, in my case, I break open a capsule of ergotamine and take only half (0.5mg) as that's usually all I'll need. So that makes sumatriptan 64 times more expensive. Right, Big Pharma has ripped us off yet again, big-time!
It's damned time governments did something about this.
This is very interesting for me to read -- my experience was the opposite: dihiydroergotamine was always preposterously expensive (hundreds of dollars for one dose); the history of it was like one of those fascinating novels with a disastrous chain of unintended consequences. It's basically a fungus, used forever, it should be trivial. It predated the FDA, and therein lay the bizarre economic and regulatory paradox: it was grandfathered in, in a way, but the delivery mechanism (a nasal spray) was a later invention that went through the full clinical research gamut. There's no money in the drug to do clinical trials, so it fell into this weird gray area. I wish I could find the article from when I looked into it, presumably some plaintive search at the time, "why is Migranal so expensive?"
I had my first migraine (with aura) as a teenager. What a scary thing for you to lose proper vision, get a truly nightmarish headache, then feel nauseous and throw up! On average I'd say I got 1-5 a year for many years. I managed them with Migranal. Triptans didn't help. Migranal was an expensive pain to get, and is a poster child for our crazy pharmaceutical situation, but I digress.
I had a concussion a few years ago after which I could hardly go two weeks without getting at least one scotoma. In contrast to before, sometimes it would be just the aura without headache. For insurance reasons I moved over to Nurtec which wasn't bad, and a lot less unpleasant a taste. But 30+ incidents a year was crippling.
My neurologist was convinced my troubles were due to a PFO (patent foramen ovale): in the womb, we obviously do not breathe. A hole between the left and right sides of the heart allows blood to flow through from the mother. At birth a flap is supposed to cover this hole, but in many people it doesn't close all the way and there's a residual "shunt" which allows the "dirty" blood to flow straight through without going through the lungs (which also filter out junk, like microclots for example). When you strain, such as when bearing down/lifting something heavy/Valsalva maneuver, it really pushes this stuff through. Indeed I seemed to notice migraines came more frequently when I was better about exercising.
I had some other sporadic things over the years. My neurologist said "the brain is a big network. Throw a bunch of crap in there, and you get nonlinear outcomes." He was convinced the PFO was to blame for all of this.
I was referred to an interventional cardiologist, whose research had concluded, basically: "not all migraines are resolved by closing the PFO. But, if blood thinners make the migraines go away, in those cases closure does make them go away." Bayes at work. I was put on blood thinners and indeed they virtually stopped. (Sure enough, one of the two I did have in the year I was on Plavix--again, down from 20-30--was when I was doing the Valsava to pop my ears while a flight was landing).
After a year I did have the PFO closed. I am still on low-dose Aspirin (baby/EC). The neurologist had prescribed it years earlier when he first tested me for the PFO, but I resisted having to take medication daily. My original cardiologist who examined me further for the PFO said it was tiny and thought it was clinically insignificant, and didn't think I needed the aspirin. I've had the PFO closed for a year. I had one migraine during the procedure itself (not unexpected), and one more after about six months when I went off the aspirin. So I went back on the aspirin, and will presumably continue to be on it for life.
There are still unanswered questions: none of this explains the concussion, does it? The theory I've pieced together is that migraine is a probabilistic phenomenon. Things can make it more or less likely, presumably by putting the brain in a more or less resilient state. Bad sleeping habits? Inconsistent timing of food (low blood sugar)? Dehydrated? This is playing with dry kindling, waiting for the spark: perhaps a microembolism crossing through the PFO, or some other vasoactive compound (I've had them from the sun reflecting off of something and catching my eye). It was around puberty time when it all began, so a lot of stuff is going on. My thought is that perhaps the concussion "permanently" lowered my threshold.
My mother had always suffered from migraines. For other reasons (old with heart issues), she went on blood thinners temporarily. Then was off the blood thinners. Then she was back on blood thinners. Sure enough, after my experience we looked at her migraine log, and can you guess what pattern we found?
At present, closure is only indicated after you've had a stroke (I had at least one event that adequately qualified). I'm lucky: a few years before my adventure, my coworker had a stroke (while lifting weights) with permanent consequences, after which his PFO was closed. We already know that migraineurs are frequently at higher risk of stroke. I would bet that PFO closure will become a more routine procedure in the coming decades.