Comment by smeej

Comment by smeej 2 days ago

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I just had an "on this day" reminder pop up that told me I've been searching for the answers to two relatively common problems for twelve years with no progress, unless you count ruling out the same damn primary suspects over and over and over. I get migraines at the same time of month every month, and I have chronic pain in my heel and 2nd metatarsal--and no, it's not plantar fasciitis.

Every couple of years, I get renewed energy to try the search again. It lasts for a year or two before I run out of steam, give up, and decide to live with it, because I'm easily 6 figures into trying to be able to walk without pain and not be laid out with a headache every month.

100% of doctors started with telling me the problem was my weight. I lost 50 lbs and all my symptoms got worse, so they pivoted to telling me it's psychogenic. All of them. But I've been through all the recommended types of psych treatment too, and a few experimental ones besides.

In point of fact, I cannot convince anybody who might know to care enough to find out, and it seems unlikely I ever will. There doesn't seem to be any good reason I should be stuck with these pains, but there are only so many times I'm willing to try the same things, expecting different results, because this doctor thinks all the other ones must have been too stupid to rule out the obvious causes.

itronitron 2 days ago

I recommend taking probiotic Bacilis Subtilis gummies if you feel a migraine starting, I don't know why it works but it does (and I first heard about Bacilis Subtilis hear on HN.)

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dapper_bison17 2 days ago

That really sucks. It sucks even more that your situation is common to many many women.

One of my best friends faced a similar struggle and took things into her own hands.

Through a lot of trial and error and a lot of studying, she's been able to overcome most endo symptoms and has started her own program where she teaches other women how to do the same.

I'd love to connect you to her if you want!

She's already helped around 30 women with similar struggles. Some have managed to get rid of bloating in a matter of weeks, one even has Crohn's disease and for the first time in 14 years woke up without any stomach pain.

My friend's program isn't a "magic pill" obviously but it sounds like it's worth a shot.

Let me know :)

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  • smeej 18 hours ago

    Does her program have a website or something where I could learn about it and find her contact info?

    I've dealt with a handful of such specialists before, each of which thought they had discovered something everyone else was missing, so before I consider shelling out another five figures on hopeium, I'd love to read/listen to anything she's said publicly about what she's doing.

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BobaFloutist 2 days ago

Are you a woman? Do you take homona birth control other than the "Mini pill"? My wife read online that it's not safe to take typical hormonal birth control on the standard pill if you get migraines with auras, because it increases your risk of stroke and mentioned her migraines to her gyno, who was like "Oh shit yeah we have to put you on the mini pill then." Which was crazy, because aura migraines wasn't on the laundry list of possible conditions on the intake form. Anyway, she got fewer migraines after changing birth control, so...maybe relevant?

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  • smeej 18 hours ago

    I am a woman. I have never used birth control of any kind. (I know, I know. Unicorn. But I'm long-term celibate for personal reasons, so unexpected pregnancy is not a concern.)

    It is a bone of contention with my gynecologist that I am not willing to suppress my (screened and confirmed to be) perfectly healthy "ovulation axis" on the off chance it might decrease my headaches.

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  • spondylosaurus 2 days ago

    IIRC the birth control and migraine relationship is twofold: (1) unlike traditional BC pills, mini-pills don't contain estrogen, which is beneficial because of the link between estrogen and migraine frequency; and (2) unlike most traditional BC pills, most mini-pills are "monophasic," which means you have less dramatic hormonal fluctuations throughout each cycle.

    I do know some people see an improvement on migraines even on traditional BC, but the hierarchy is pretty much: nothing < traditional BC < mini-pills.

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    • smeej 18 hours ago

      I can definitely say that the couple cycles where a NaPro doctor had me supplementing both estradiol and progesterone at different points of the cycle led to the most incredible pain I've ever experienced. I fired the guy rather shortly thereafter when he ignored my existing meds list and wrote me a prescription for the headache that would have landed me in the hospital were I not a careful reader, so I don't know if it might have gotten better if it were tuned in better.

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wbl 2 days ago

Migraine drugs have improved incredibly in the last few years. As a fellow sufferer I recommend you ask about them: given the same time of month you can likely preempt them entirely. I hope you get some answers!

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Asooka 2 days ago

It is possible you have an undiagnosed latent infection, I spent nearly a decade with one trying this and that until I hit a winning combination. If you go looking for this protocol you'll find the absolute worst schizo rants online, but the actual ingredients have solid science behind them (you can literally look them up on google scholar):

The N-Acetyl Cysteine Protocol Morning and Evening: 600mg NAC Oregano Oil (min. 40mg Carvacrol) Black Seed Oil (1 teaspoon)

For the natural oils, my strategy is to mix 235ml Nature's Way Black Seed Oil with 30ml Natural Factors Oil of Oregano, take one teaspoon morning and evening. This mix delivers the prescribed amount of carvacrol per teaspoon. Most of my problems were with the upper respiratory tract and taking it orally this way coats the throat well.

The other intervention that had big effect on my health in the last few years was adding a daily mineral supplement. I'm an avid tea drinker and it turns out that can interfere with your absorption of minerals, plus with the nutrition crisis it is not clear if our produce even has enough for optimal health. I simply take the maximum recommended supplementary dose of Mg, Ca and Zn.

Also, check your Vitamin D levels if you haven't. If you have been dealing with this for 12 years, I assume you have already ruled that out, but I'm mentioning it for completeness. Good luck.

P.S. One last thing to mention - try the carnivore diet for a bit (if you haven't, of course). I know people who have found it a big help, but then again for some it didn't do anything. Give it a month, see how it goes, obviously stop immediately if you get serious symptoms.

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  • smeej 18 hours ago

    Thanks for the suggestions. I've done extensive trials with the minerals and vitamin D, and both hair and serum tests keep saying that's not the problem.

    I'm on NAC too, but oregano oil gave me the worst heartburn I've ever had in my life. Do you think the black seed oil might neutralize it on that front?

    I did carnivore for about three weeks before my body was absolutely shutting down. It was catastrophic for me. I did spend 20 months on an elimination diet of slow-cooked meat and boiled vegetables (exclusively, without a single cheat, which was pretty brutal), which helped clear up some intestinal issues that were misdiagnosed as ulcerative colitis, but it didn't do a thing for the headaches.

    It's somewhat reassuring that most of the out-of-the-box suggestions people have are things I've already tried, because at least it does confirm for me that I've done a decent job of covering my bases, but alas, the pain persists.

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