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I’m so glad you found something that works.

My wife is perhaps in the early stages of this journey. What started as “bad headaches” once a week has, over the last six months, graduated into serious migraines where she can’t leave a pitch black room for most of the day. They seem to cycle intensity where they are much worse 2 weeks out of 4.

She’s on nortriptyline daily with sumatriptan taken during episodes, but which is only partially effective after the 2nd or 3rd dose and about 5 days a month basically totally ineffective.

It’s fucked up that the human body is capable of causing itself so much pain over an ailment we can’t even identify in any test or scan. It’s completely debilitating.

If it was for myself I would absolutely experiment with psilocybin or mushrooms in search of a treatment, but her personal history just isn’t conducive to anything remotely hallucinogenic without a very highly experienced guide in the best of circumstances.

Some things that helped me massively: Despite having 20-20, I would get eye strain and I could not differentiate it between a migraine and eye strain. Worse yet, eye strain lasts for days just like a migraine. Switching from a 1080p monitor to a 4k monitor with a reasonably low dot pitch, minimizing video game playing, and hunching (looking at a laptop screen, looking at a cell phone), helped me massively. Oh and blackout curtains are a godsend if the sun rises or sets in the general direction of the room you're staying in.

I went to a chronic pain clinic, and I was glad I did. When you lay in bed too long (especially when females do) the muscles deteriorate and this in itself causes chronic pain that can at times be difficult to distinguish from a migraine. I had to go to a physical therapist and it helped tons.

A pain clinic will prescribe antidepressants, because they often will work for all kinds of chronic pain, including migraines, but sadly for me they only worked about the first month and then became ineffective. However, I did learn from that the best anti-depressants and anti-anxietiants in the first world outside of the US (because pharmaceutical companies can't make a profit off of it) are RIMAs [1] and are absolutely worth perusing if you have depression. Out of pocket they're about $20 a month, and they can help with pain too.

And on top of all of that, turns out I get migraines from allergies. I'm unfortunately highly allergic to every grass and tree allergy allergists test and a few of them cause migraines for me. Second, I'm allergic to soy which causes a severe migraine response, so I'm constantly cautious. It was an allergist of all people who helped me get on the right migraine medicine. The allergist I went to dubs himself an allergist when other allergists fail, and does food allergies too. Unfortunately, my allergies haven't gone away, but at least I know a cause for my migraines.

[1] https://en.wikipedia.org/wiki/Moclobemide

I know you mention anti-anxiety, I had some prescribed, propranolol. 10-20-40-60. 60mg was the magic number. I also have Botox for migraines done every 3 months.

I almost went the Botox route. I'm glad I found an alternative. Botox is dangerous because if you have a real issue, you can't tell, so pain related issues can compound on themselves.

A lot of drugs worked for me for “about a month” and then completely stopped working. I’m fascinated by the phenomenon. It’s like the body REALLY wants to have that migraine, and will figure out workarounds, no matter where you intervene medically.

> It’s fucked up that the human body is capable of causing itself so much pain over an ailment we can’t even identify in any test or scan.

This is the thing that really irks me about migraines: there's no fucking purpose. If my arm is over a fire, the pain is for a reason ("hey uhhhh you might want to move your arm") but migraines are senseless and debilitating pain for no conceivable reason. Even things like "oops, I forgot to drink enough water six hours ago" isn't particularly useful to me: I'm well-hydrated now but hve a migraine anyway. Thanks, body.

Lukcily for me, daily feverfew cuts back my migraines about 70-80%, and sumatriptan covers another 50% of the migraines I do get. That's still not 100% coverage though, and every time I'm sitting in a pitch black bathroom with cold sweats and vomiting into the toilet I have to ask myself "what is the point of this???"

It's possible we just don't know the purpose. There's a lot to life (and the human body) that we still don't know. I hope that one day we get more answers. Maybe even finding these new management drugs will help us eventually identify a root cause (assuming the drugs have a common effect/mechanism).

Yeah this is true. I wonder if it has something to do with the second brain we have in our stomach. Maybe in the next few decades we'll figure it out. Until then, I guess there's a consensus in the medical and scientific communities that I should take shrooms every morning. Radical!

I think of migraines as a signal that says, "you're doing something seriously wrong, on the regular, and I need you to stop".

It is a signal beyond the normal subtle communication we get from our bodies that must be listened for to be heard, the stuff yogis talk about.

For people in my family, including myself, it means avoiding certain contaminated food products, such as processed food including white flour.

For me personally, it is also avoidance of synthetic products such as VOCs, which cause me much suffering when I'm exposed to them. For example, furniture will off-gas that stuff for months and years after manufacture.

Another common source of pollutants is regular household "cleaning" products -- look up "indoor air pollution".

This stuff is rarely acknowledged in mainstream information sources, and it is certainly not easy to get away from. It requires a conscious effort, basically becoming your own EPA and FDA, and being much more strict than them.

I think it is worth considering for anyone suffering from migraines to try eliminating all this stuff from their life and seeing if it helps before trying to suppress the signal with drugs.

An easy way to try is to camp out in a clean outdoors area, bringing only clean food with you, while also avoiding new camping products, and any "sprays".

I've done a lot of eliminations like this over the years and still get migraines. To me they are seemingly random, but I'm willing to admit/accept that perhaps I haven't been strict enough. I'll keep your advice in mind. Thank you!

I get migraines from allergies (both food and environmental), so can confirm.

For me its overstimulation. This modern world is too stimulating for our minds and eventually, for me, it causes a migraine. Its especially triggered by large amounts of visual information. So programming. Reading news. Browsing reddit etc. There are plenty of theories about how migraines work, but a good number orbit around the idea that the migraine brain is hyper excitable and during the run up to a migraine it loses control over its inputs.

So by this reasoning, a migraine is designed to stop you from consuming more information than your mind can handle. The pain of bright light is designed to keep you away from the stimulation of bright light. And the pain of noise to keep you away from stimulating noise.

It could be eye strain. I suffered from that and migraines and couldn't tell the difference between them. They felt the same, had the same duration, everything about them felt identical.

Then how do you know one is not the other? Also mine can be triggered by load noises. It was always a mystery to me how I could get hang overs without drinking! Its because overstimulation symptoms and a migraine are what I always thought a hangover was! Turns out a hangover isn't as bad as I thought. Simply drinking at home, the next day I don't get a horrendous headache and feel like every noise is sending shards into my soul.

>Then how do you know one is not the other?

I upgraded to a 4k monitor from 1080p in 2005 and suddenly half of my headaches went away. When the season changed and the sun started coming into my room, those headaches came back. Blackout curtains stopped them.

It was a pretty big ah ha! moment, because before that medicine didn't work on my "migraines" because I was suffering from multiple kinds of chronic pain at once.

> but her personal history just isn’t conducive to anything remotely hallucinogenic without a very highly experienced guide in the best of circumstances

Perhaps, given her suffering, it's time to find that guide.

If you haven't started investigating the "new" CGRP medications, you need to. There are several on the market now, and it is a once-a-month injection. These have been a real life-saver for me. Going from 15 headache days per month to 3. And the attacks are also less sever.

https://duckduckgo.com/?q=cgrp+migraine

The CGRP drugs were also life changing for me.

The most random things can help.

Was in your wife’s shoes. Locked in a dark room most of the week.

Most medications not working. Supplements helping, but not enough.

Someone suggested TMJ. Looked up video on TMJ massage. 3 days later I was nearly normal. Been mostly fine since.

Green light therapy?

How much caffeine does your wife consume (if so)?

While migraines can be caused by anything, usually from allergic reactions, caffeine tends to exasperate or alleviate tension headaches. They rarely influence migraines.

All the replies are offering advice, but the one piece of advice I wish someone had told me at the beginning of my migraine journey was to not stop trying to fix them. There is an insanely long list of drugs that "work" but will probably have middling effects for her (triptans, tryptalines -- yes they're all different, sertraline, hydroxyzine, meloxicam, the newer CGRP injections, RF ablation, nerve blocks, massage, chiropracty, acupuncture, MRIs, botox injections, spinal taps, these have all been prescribed to me by various Neurologists).

The only real solution is to keep moving forward and keep hounding your doctor to keep you moving.

I havent seen anyone mention it yet in the thread but if you can get your insurance to cover Emgality, give it a shot. Its a brand new peptide thats only been on the market for 2 years~. This is the first year I have been able to basically completely abate all pain derived from my cluster headaches (had them yearly at the same time for 5 years) by taking the injection (just) before onset of a cycle. Psilocybin never did much to effect cycle length or pain level for me, and the triptans have some of the worst side effects I have ever seen personally, in a drug. /anecdota

For anyone else who is interested: https://en.wikipedia.org/wiki/Galcanezumab

Thank you.

I used to take Sumatriptan, it was a life saver if you got onto it quickly.

As I've got older I've had them less and less so no longer need to take it - but I do recommend people having regular migraines to speak to their Doctor and mention it.

>I used to take Sumatriptan, it was a life saver if you got onto it quickly.

It's the opposite for me. If I take it too early into the migraine it sometimes doesn't work. I will intentionally sit with the migraine for around an hour, or until it gets bad enough, then take sumatriptan and wait the 1h30m to 2 hours for the pain to go away. 2-3 hours of a headache is far better than a day of a full on migraine. Once I take it and it doesn't work it builds up resistance for at least 12 hours, so I'm stuck. I'll take the headache.

Wow, amazing how varied people's responses to these things are! If I wait too long to take a triptan, its effectiveness reduces quite a bit. I generally try to arrest the migraine with ibuprofen but then take the triptan if it progresses.

Yep. At this point we shouldn't be thinking of a migraine as a singular thing. Sure, singular symptoms, but there are so many different varied causes and conditions that it can not be a single illness.

Sometimes when migraine medicine does not work for me, it's because it's a headache not a migraine. I have some over the counter "migraine strength pain killer" pills which are acetaminophen, asprin, and caffeine, which works most times the migraine medicine does nothing.

That sounds oddly curious to how psilocybin resistance works. With mushrooms, you have to take the entire dose at the outset. As soon as you can feel it, you now have a strong resistance and any further dose will have a greatly diminished effect.

I hear that's not the case for everyone ;)

Yep. It's a triptan, so closer to lsd, but same sort of premise.

I've heard this making people a lot slower in reaction times and just general reasoning.

I've definitely seen those side effects in my mom.

Time to switch her to a different drug. I haven't had slowed reaction times thankfully.

I take it and it’s actually available over the counter (which is odd given how most of the rest of Europe seem to have it only by prescription and Sweden where I am is usually really restrictive). I have tried to figure out why it’s a prescription drug in many countries (reasons could include it’s addictive, has bad side effects, could cause side effects with other drugs, etc), but I haven’t found the reason. Does anyone have any clues on this? I have taken it for a few years and not seen a doctor in that time who I could ask.

In the US they have to apply for it to be over the counter and pay a bunch of money in studies. It's a pretty expensive process.

So, in the US it's over the counter if people will seek it out. This way they can charge more. If it's not over the counter it's something generic that people will not go out of their way to a doctor for. In the last 10 years in the US I think the only prescription drugs moved to over the counter is allergy medicine, which seems to fit this pattern: People will not go to a doctor for seasonal allergies typically.

Any idea why you were getting them? I also had 2 months of migraines and headache issues recently and don't know why.

Sumatriptan saved my life.

Yah, I wrote about it here: https://news.ycombinator.com/item?id=25192775

I tried a sample of sumatriptan once and my head/mind felt so clear. I've been able to manage without prescription meds but have always wondered if normal people felt like that all the time.

Not for me. It's the opposite. The first two hours after I take it are a come up. My symptoms are different each time I take it: Sometimes I'm half cognizant at that time, sometimes normal. Sometimes I get very sleepy and want to take a nap. Sometimes it makes me feel like I have low blood sugar during the come up and I start mildly shaking needing to eat something. Sometimes an arm or my arms will go to sleep during the come up, which happens to me on lsd (but not mushrooms) as well. But once the come up is over, usually within an hour and a half, I feel completely normal like I took nothing.

I'm probably abnormal. I imagine if you take it while you do not have a migraine you'll get a mild heightened experience that may or may not be noticeable. It is, after all, a triptan.

Oddly, 4-aco always made my mind feel clear the way you're describing. A bit more awareness, a bit more clarity. On 4-aco I wouldn't notice much or any come up. It was just the effects from the drug getting stronger over the first hour.

Interesting. Sumatriptan makes me really loopy and slurs my speech. It can also make my jaw ache really bad, which is usually a sign it's working (it has about a 50% success rate for me). I often think that it works by moving the pain from my brain into my jaw.

I never really feel great after taking it, but I'll happily deal with the effects over a migraine any day.

Have you been checked for TMJ / teeth grinding? It's a common cause of migraines.

I have an obnoxious clicking in my jaw whenever I chew, but other than that I don't have TMJ as far as I know. I do grind my teeth, but it's sporadic and stress-related rather than a constant thing.

I haven't been able to correlate actual jaw tension, teeth grinding, and migraines in any meaningful pattern. I'd say a good 60-70% of my migraines are due to some mix of brightness, hunger, thirst, exercise, sleep, and stress. Another 10% alcohol, and the rest is random: "Here's the migraine you ordered! Oh, you didn't order one? Well here it is anyway, enjoy!"

Thankfully there are specialists that can help with that.

That clarity is definitely a thing for me. It's useless because I get dizzy and nauseous once the migraine fizzles.

Don't get me wrong, I 110% prefer the dizzy over Satan piercing my brain with a trident.

I'm sorry to hear that. It could be an inner ear issue. Sinuses are I believe the most common cause for migraines.

Unfortunately, I don't know if there is a process to clean out the inner ear. I met someone once who would get dizzy from time to time from her inner ear and it was just a condition she lived with.

I have indeed suffered from sinuses. I'll mention it to my physician. Also thanks for your top comment about avoiding life-long resistance -- you've been super helpful all around!

Aww thanks. <3

If you can’t get 4-aco but have access to mushrooms, search around for “lemon tek”, or “blue juice” cold water extraction. It can get you the psilocybin/psilocin without the body effect of chewing on mushrooms. Still not as easy to dose precisely as pharma grade, but don’t discount the entourage effect which could be as rich an area of research over the next few years as cannabinoid research is now.

Unfortunately, it became illegal around a decade ago. However, the ability to precisely measure a dose is a huge benefit over traditional mushrooms.

Anecdotally, I have a friend who experiences chronic cluster headaches and low mushroom doses were the first thing in 20+ years which they said just worked, and well, without any negative side-effects.

It was a decade ago when I was using it, but still I wanted to verify so I looked it up: https://en.wikipedia.org/wiki/O-Acetylpsilocin

It says in the US it's still unscheduled. ^_^

Unfortunately not really, as 4-AcO-DMT would definitely fall under the Federal Analogue Act. And if you order it in the mail (as is common with "research chemicals") they'll tack on charges for mail fraud and trafficking across state lines.

That's what I meant by legal, unscheduled.

Technically they don't go after buyers for unscheduled drugs. If you buy in bulk large enough that they suspect you're a seller, but don't have any reports of you being a seller they'll give you a love letter which is, "We confiscated your package. Don't do it again." and that's the max penalty for buying 4-aco in the US. If a law is unenforced in the US, it is legal. To prove it is enforced if they ever want to go after sellers, they have to capture multiple sellers at once in bulk to prove there is no bias. The legal system is interesting in the US, isn't it?

Also, where I live (Oakland) it's totally outright legalized, so no problems.

Oakland is one thing, but unscheduled doesn't mean much. That's the point of the federal analogue act and I remember exactly when it started being applied to tryptamine-based research chemicals around 2010. There are too many subtle chemical variations to take the time to put them all on the books directly, they are covered with the act.

We can talk theory and everything, but I've seen people get arrested and charged for both possession and procurement, so.

Yeah, I've gotten love letters too. But that doesn't change the reality of what I said! It's not legal, if you order enough they will charge you under the Federal Analogue Act... or even on a small order they'll make up whatever story they want and raid you if they suspect you're up to something else more lucrative.

My wife and daughter both had the inner ear piercings have been migraine free. One for a year now and the other for 2 months. We will see how long it lasts. Daughter was a migraine every 1-2 weeks and wife was 2-3 a week.

Random question: did you or still do consume caffeine? If so, how much?

Migraines and caffeine are not correlated, with rare exception like a food allergy to caffeine, coffee, or milk. However, tension headaches and caffeine are strongly correlated.

I don't drink much in the way of caffeine. When I drink coffee I drink decaf. I also drink decaf tea sometimes. I also drink irregularly. I'll go a week or two without any decaf or anything and then another week drinking six cups a day.