4 ms·

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 l

by zaroth 6y ago

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.

proverbialbunny 6y ago
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 https://en.wikipedia.org/wiki/Moclobemide
- aSockPuppeteer 6y ago
  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.
  - proverbialbunny 6y ago
    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.
- mordymoop 6y ago
  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.
orthecreedence 6y ago
> 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???"
- giantg2 6y ago
  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).
  - orthecreedence 6y ago
    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!
    - forgotmypw17 6y ago
      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".
sibeliuss 6y ago
> 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.
flubert 6y ago
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 https://duckduckgo.com/?q=cgrp+migraine
- mordymoop 6y ago
  The CGRP drugs were also life changing for me.
treeman79 6y ago
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.
BatteryMountain 6y ago
How much caffeine does your wife consume (if so)?
- proverbialbunny 6y ago
  While migraines can be caused by anything, usually from allergic reactions, caffeine tends to exasperate or alleviate tension headaches. They rarely influence migraines.
dd36 6y ago
Green light therapy?
hailwren 6y ago
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.

by zaroth 6y ago

proverbialbunny 6y ago

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 https://en.wikipedia.org/wiki/Moclobemide

aSockPuppeteer 6y ago
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.
- proverbialbunny 6y ago
  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.
mordymoop 6y ago
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.

orthecreedence 6y ago

> 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???"

giantg2 6y ago
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).
- orthecreedence 6y ago
  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!
  - forgotmypw17 6y ago
    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".

sibeliuss 6y ago

> 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.

flubert 6y ago

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

mordymoop 6y ago
The CGRP drugs were also life changing for me.

treeman79 6y ago

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.

BatteryMountain 6y ago

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

proverbialbunny 6y ago
While migraines can be caused by anything, usually from allergic reactions, caffeine tends to exasperate or alleviate tension headaches. They rarely influence migraines.

dd36 6y ago

Green light therapy?

hailwren 6y ago

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.