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Any migraneurs here? How are you doing?
One of the communities on reddit that I greatly benefited from was /r/migraine. It was helpful to have a space to talk about common symptoms, experiences, and the various treatment options out there. Wondering if anyone here also experiences migraines & might be interested in a support-ish type discussion thread? I'll post a bit about my personal experience in a separate comment.
(Also -- this is my first post here, so please feel free to let me know if I've tagged this incorrectly or made some other newbie mistake. Thanks!!)
Yep. I don't get them all that often, only once every few months, but I have regularly had them for 30+ years. They are completely debilitating, and I usually have to sit in total darkness, in complete silence, until they go away, which can take anywhere from a few hours to a full day. And even afterwards, I am usually completely wiped out, physically and emotionally.
However, I recently bought some "migraine" (FL-41 blue-light filtering) glasses and they genuinely seem to help, even after a migraine has already started to kick in. I also bought a silly looking gel headache/migraine mask/hat thing that I keep in the fridge, and put on whenever I have one. It completely blocks out all light, dampens sounds, and generally seems to speed up my recovery. So I highly recommend looking into both if you also suffer from migraines. They're not a silver bullet, but they have both helped me manage them slightly better.
Solid recommendations here. I have a pair of those type of glasses and they do seem to help! Agreed that they aren't magic or anything, but they've aborted a couple full-blown migraines for me which is pretty remarkable. Even when they don't get rid of the pain, they're also wonderful for light sensitivity.
Some info I can share about my experience -- I have had chronic migraine in the past, but some successful treatment has decreased the frequency to the point that I have edged just below the threshold and am now diagnosed as episodic again. Most of my attacks are migraine without aura, and I'm at about 1-2 attacks a week overall. I'm currently managing things with Ajovy, triptans, and cannabis. I'm also a fan of my Cefaly device as an additional tool in my toolbox, though I've noticed the battery life seems to be getting worse over time.
I didn’t know that sub existed. It sounds messed up to say, but reading about other people’s suffering in this thread makes me feel good. I guess just knowing that other people share in this experience is comforting.
I’m 34 and have gotten them since I was 16. If left untreated, they are completely debilitating, and cause excruciating pain and vomiting for 12-16 hours. Fortunately, as I’ve gotten older, I’ve gotten better about prevention by identifying triggers that often result in one coming on.
I still get around 7-10 per month but my medication setup is nearly 100% effective at eliminating them, or at least keeping them at bay, so long as I catch them early on.
The day after migraines suck too because my body is completely exhausted, even if the medication eliminated it. Kind of strange.
There’s lots of support groups/subs for different health conditions for that very reason. They range from the specific like r/migraines to the general like r/ChronicIllness.
Migraines are such a weird beast. There’s so many different kinds, they can be triggered almost like an allergic reaction but they’re not, and they affect so many people.
Did you know that some kids get abdominal migraines? Iirc it’s like they’re too young to properly process pain coming from their heads so it gets referred to their stomach, but instead of avoiding food they sometimes avoid bright lights and loud noises.
Does anyone get exercise-induced migraines? I have found that if I exercise to the point that I am breathing rapidly, especially in cooler weather conditions, I pretty consistently get a splitting migraine. Although I do enjoy being physically active, I probably have awful cardiovascular health because I stick to intensity levels that allow me to breathe normally.
This is definitely a thing for me. Not every time, but often enough for the correlation to be obvious. Sometimes I’ll feel the migraine starting before I even finish the run. I take my prescription right away though and it always works.
Ahh as someone coming off a 3 day migraine with what is functionally a migraine hangover I feel you. Don't have much constructive to add other than I hope the brain melting passes quickly and the auras stay at bay <3
Migraine hangovers are such a weird feeling. It sucks that you don’t feel like your normal self, but there’s also something nice about it because the bad pain has passed 😅
Thanks. Luckily, I don’t get auras. Unluckily, the pain never really goes away.
Oof I'm sorry, that sounds shitty <3
I am doing OK taking a daily preventative (nortriptyline) and just generally taking as good care of myself as I can (e.g., not eating foods I know cause migraines, such as beer and other "yeasty" foods). If it's one I think I can handle with just a little medicine, I take Tylenol and sleep for an hour or two when I can (most of my attacks occur during the workday, either when I wake up, or around 2 - 3 pm). If that doesn't break it and I really need to be focused, I take Ubrelvy, which is freaking amazing.
I used to take/try a lot of abortives to get the attacks to stop (e.g., pretty much all the triptans, ibuprofen, etc.) but most either didn't work or stopped working within a few months. I was previously on Zonegran as my daily driver, but after two kidney stones, I had to stop taking it. I'm glad nortriptyline works just as well.
I've heard really good things about Ubrelvy! Glad it's working well for you. Do you notice any side effects with it? I respond well to triptans but they do sometimes make me feel pretty weird right after I take them.
I tried nortriptyline a while back as I was working my way through the first line preventatives. I had one really good month at first and thought it was going to be the answer, and then things went right back to normal after that. I stuck it out for like six more months and never had another good month like that. So frustrating when things stop working! Luckily my current preventatives are decently effective.
Oh no, I'm sorry to hear that about your experience with nortriptyline! I'm glad to hear that your current preventatives are working, though.
I don't really notice any side effects specifically from taking the Ubrelvy (that I can recall, anyway). It can work ridiculously fast if I haven't entered the "migraine is so painful I'm gonna puke" phase; if I'm in that phase then it will definitely lessen the pain but not take it away completely at that point. Since it is a newer drug though, I won't be able to take it once my spouse and I conceive but I can continue the nortriptyline if I need/want to. I have some anxieties surrounding that, but no use getting too terribly worked up over something that isn't happening in the present day.
I know what you mean about the weirdness after triptans, though -- I used to experience that with them, too. Kind of like a groggy, semi-out-of-body/reality kind of feeling (for me at least). I hated it. I don't experience that with the Ubrelvy thankfully.
I'm lucky in that caffeine can usually hold mine at bay, and if I do get one coming on, I can often sleep it off if I can manage an hour long nap. The throbbing is incapacitating. I can't do much but lie down and hyperventilate to take the edge off. Thoughts are impossible in the middle of an attack. I'd get them roughly once a week when I was younger. Now I generally get them once a month.
I get ocular migraines that make me sick to my stomach occasionally. I haven't had one in a while thankfully, but they're terrible when they come on. Feels like I'm going blind rapidly and out of nowhere. I usually have to try and just take a nap and hope it's gone when I wake up.
I used to get the more general types of migraines when I was younger. I found that if I felt one coming on and took a (probably too big) dose of ibuprofen and went to sleep in a dark room immediately I could stave off feeling most/all of the pain.
Funny that I happened upon this post, my mom's having an ocular migraine right now... It's always scary for her. Her vision is impeded, she has trouble finding her words and ends up very tired afterwards. The annoying part is that all it takes to trigger one is a sun beam hitting her eye the wrong way.
I dont know if its the same thing, but I used to get those when I moved from one province to another. Huge pain right behind my eyes, so strong I couldnt think straight or see any kind of light or it would hurt like mad - my guess was that the difference in elevation caused them. But yeah, I had to go to bed in a dark room, and pinch the top of my nose fairly hard, the area right between my eyes - that seemed to alleviate the pain just enough that if I was lucky I could fall asleep. If not it was several hours of just lying still and pinching.
And for some reason, maybe just getting used to living at this elevation, maybe it was just age, they just quit happening. Havent had one in several years and it wasnt til I read this that I recalled how debilitating they used to be.
For me, ocular migraines aren't actually painful like a regular migraine. Instead, it's like.. there are some pictures online from artists that depict it well. Here is the closest to what I experience. I'm looking at whatever is in front of me but this mass of zigzag patterned.. stuff that I can't actually focus on starts to appear and slowly grow, blocking most of my vision. Mine's usually pretty centered so I have to make my way around using my peripheral vision, which makes things even more disorienting. And closing my eyes does nothing. The blob is still there behind my eyelids.
I started getting the occular/retinal migraines around 5 yrs ago. No pain and they would pass pretty quickly. Lately I have been getting nausea too, sometimes with the start of a headache. I stopped consuming anything with caffeine because that appeared to be a trigger along with stress. It's been better lately.
I was thinking that establishing an alternative to r/chronicpain might be a good idea myself, not knowing how bad spam and other malefactors are going to get over there.
I’ve been dealing with Chronic (constant) Migraines for over 10 years. I’ve tried just about everything. I’m currently doing Botox injections, LDN, Amitriptyline, topamax, and medical marijuana.
So sorry to hear you're dealing with that, truly. A friend of mine has intractable migraine and it's been awful for her. Regarding medical marijuana -- is there any particular form/strain that you've found beneficial? I am lucky enough to live in a legal state & have been trialing out a tiny dose of a 1:1 edible. For some reason, it seems like I get more preventative benefit when I smoke, but I'd prefer not to smoke super often and it's harder to dose anyway. Anything in particular you would recommend?
I personally don’t smoke, and vape very little. My favorite vape is a strain called Blue Dream. I think it’s a hybrid strain. It works on pain, relieves a bit of fatigue, and has a touch of the euphoria and creativity. Daily I use a combination of edibles and tinctures. Tinctures come in a variety of ratios and they take affect faster than edibles because they are absorbed through the skin of the mouth, instead of having to go through the digestive system.
It’s also possible that you’re not taking a large enough dose of the edibles. I’ve found their effectiveness can depend on how full or empty or stomach is, kind of like alcohol.
ETA: Tinctures are super easy to dose accurately because you use a pipette to pick it up out of a bottle, and the pipette has mL markings on it. Tinctures are usually MTC oil that’s been imbued with cannabidinoids. You can get them flavored or not.
I used to get migraines once or twice a week in college and it would make me so depressed. The pain absolutely sucks, but I also get visual auras that cause me to go partially blind for 1-2 hours. Thankful I get them far less now (every two months or so).