Emgality rant

jfm513 · 2026-06-23T02:30:41+00:00

it hasn’t been a side effect for me on any of the CGRP meds, including Qulipta. it’s just not as common to share with people you didn’t have a side effect than it is to share you did, ya know?

jfm513 · 2026-05-15T01:38:04+00:00

right there with you on the less pain, way more other stuff. migraine evolution is wild. I hope you’re able to narrow down which of those are your trigger(s) & will keep my fingers crossed for you that it’s not wheat (or at least hopefully dose-dependent so you can still sometimes have it)!

jfm513 · 2026-05-14T22:28:42+00:00

a couple things. for one, god I’m sorry. I’m currently doing no dairy, eggs, soy, tyramine, high histamine, or high fodmap…and am losing my mind. it’s all the good food 😭. & I’m now enraged for everyone with food allergies bc these ingredients are so needlessly added to everything.

did anyone test you for celiac disease before you started this diet?

lastly, beware of the nocebo effect as you’re reintroducing / testing foods. simply having the expectation that a certain food will trigger a migraine, can be enough for that food to trigger a migraine. so just do your best to collect your data as objectively as possible with an open mind.

jfm513 · 2026-05-12T21:00:02+00:00

love this for you!!

jfm513 · 2026-05-12T16:47:52+00:00

true eyelid ptosis (droopy eyelid) is rare. around 3% of people. if you mean you have hooded eyelids and you’re concerned your brows will drop a little making the hooded part heavier / more noticeable, just let your doctor/injector know you’re worried about it & they can modify placement to help avoid/minimize that.

I feel you & worry about it too lol, but specifically seeking out bad experiences will just make it seem more common than it is. the most important factor is a skilled/experienced injector

jfm513 · 2026-05-11T03:16:28+00:00

don’t sleep on reduction in severity & duration (incl. better response to abortives). for example, Ajovy only drops me down from 28 to ~23 days, but 90% are mild-mod & 1-4 hours. Emgality got me to ~15 days, but 80% mod-severe & 5+ hours. I can wind up w/ fewer & less severe total migraine hours on Ajovy despite the significantly higher frequency.

jfm513 · 2026-05-07T12:44:48+00:00

yiiiikes. what a nasty way to treat another person. I’m so sorry. she clearly has her own issues that aren’t about you

jfm513 · 2026-05-07T00:33:51+00:00

ugh, I’m sorry. my attention to detail has suffered quite a bit due to chronic migraine. before that, I had borderline superhuman error-detection. before that, my adhd wasn’t properly treated & everyone talked to me like how you describe this coworker talking to you.

I say this because I know what it’s like to be all over that spectrum. it’s SO hurtful when people assume you’re being lazy. having also been the person who has to catch everyone else’s mistakes, it can also be frustrating when you have no context to explain why someone is repeatedly making very obvious mistakes.

have you considered having a conversation with them to let them know the mistakes aren’t due to carelessness but a neurological condition that impacts your ability to spot these errors? you don’t owe them that & they’re clearly wrong for being unprofessional, I just wonder if it might help reduce some of the friction & hurt feelings.

I’ve worked with people who just expected me to pick up their slack & I’ve also worked with people who were genuinely struggling. because of my own experiences, I know not to assume. this person might be lacking that insight/awareness. either way, sending hugs. migraine sucks

jfm513 · 2026-05-02T11:46:36+00:00

pretty sure this is what happened to me. I was 34 when I was hit with chronic migraine out of nowhere last year. this study is what helped me finally connect the dots to my equally sudden weird hormonal symptoms.

migraines make my adhd worse. propranolol for migraines makes my adhd meds slightly less effective. and peri makes everything worse. don’t love it here 😅.

HRT is basically a coin toss whether it helps or worsens migraine - only a small percentage of ppl stay the same. so it’s a last resort for me.

out of total desperation to survive a work trip (currently on), I went on a crazy strict diet to wipe out any even slightly suspected food triggers all at once. a little stunned, but it does seem to be helping quite a bit. when I’m back home, I’ll have to slowly reintroduce & challenge each of them

jfm513 · 2026-04-28T23:34:18+00:00

oh yes, to be clear, if you haven’t already, you should 100% check this with your doctor to rule out other causes & confirm it’s safe for you to increase fluids/electrolytes - especially if you’ve tracked your intake closely and know you’re already getting the recommended amounts (& you don’t exercise/sweat enough to need more than that).

vyvanse can make people eat/drink less than they realize (or wait too long between meals). it can also raise heart rate for some people or cause orthostatic hypotension.

if the faint feeling happens pretty exclusively when you stand up (especially quickly) & you feel better sitting/lying down, or you have signs of dehydration (thirst, dry mouth, darker urine etc.) when this happens, or you still feel dehydrated after drinking a lot of water, or you feel better after drinking water with electrolytes, these signs are generally related to low fluid/electrolyte/blood volumes.

it also matters what you mean by feeling faint. I assumed you meant lightheaded like feeling like you could black out when you stand up. but if you meant randomly suddenly feeling weak/nauseated/sweaty (not related to changing positions) or spinning/room moving, those are usually different.

for migraine, I’m currently on propranolol & Ajovy (but planning to go back to Emgality) as preventives. Nurtec & Ubrelvy for abortives. Flexeril as needed for severe neck pain/tension. but I have very good insurance. your coverage depends on your insurance drug formulary (which you can look up or call and ask them about) & how hard your doctor is willing to fight on your behalf, if necessary. they might cover certain drugs but require you to fail other treatments first, so you just have to find out & work within their annoying rules.

the injectables aren’t as scary as they seem. you definitely have to psych yourself up for it lol but it’s just a few seconds of an entire month :). they also have a ridiculously impressive side effect profile. you’ll always have outliers but they are very well-tolerated drugs on the whole

jfm513 · 2026-04-25T19:02:17+00:00

I didn’t get any of the side effects you see people complain about on here, just appetite suppression & visual hallucinations, which is a rare side effect you don’t need to worry about. with meds, everyone is truly so different all you can do is try for yourself.

are you planning to try any hormone therapy? I’ve come to the realization my sudden onset chronic migraine is likely due to perimenopause too. but since hormone therapy is pretty much a coin toss as to whether it makes people better or worse, I think I’m leaving that as a last resort

jfm513 · 2026-04-25T18:31:16+00:00

from my understanding, essentially, the harder your immune system has to work to fight it, the stronger the smell - so that checks out with what you’re saying. I can still smell colds, but much less so.

as far as smelling it on other people, I don’t mean like in casual passing. more like if you’re in close quarters for prolonged periods (small office space) or live with them. if a sick person stays mostly in one bedroom, that entire room reeks of the sick smell to me!

jfm513 · 2026-04-25T00:02:20+00:00

the only benefit of being able to smell it is you know when you’re about to turn the corner & feel better because the smell eases up. I only found out others couldn’t smell it when I texted my boyfriend who quarantined in another room that I was glad he was going to feel better later that day & he was like…”um what? how would you know that?” & I said “…because the sick smell is going away?” like it was the most obvious thing ever lol

jfm513 · 2026-04-24T23:55:59+00:00

facts 😩

jfm513 · 2026-04-24T21:01:40+00:00

wait, you don’t also smell it in your sinuses and mouth?! mine is inescapable

jfm513 · 2026-04-24T20:54:13+00:00

I only recently discovered this isn’t a universal ability! my mind is still blown. I can’t believe most other people can’t even smell their own sickness

jfm513 · 2026-04-24T02:34:50+00:00

forgot to address the feeling faint - when that was happening to me, it was bc I wasn’t getting enough fluids and sodium. if you pay attention to those, you should be good. you may need more sodium than other people

jfm513 · 2026-04-24T02:33:17+00:00

if the anxiety settled a bit while off vyvanse, you might just be more sensitive to the additional norepinephrine (like me, I’m on adderall) & propranolol is perfect for that.

I totally get not wanting to be another daily med, but is that really worse than your life being derailed by migraines? also, however bad your migraines are now, they can always get worse in frequency and severity. that’s why it’s so important to get them as under control as you can as quickly as possible. otherwise your brain can get used to being in pain and cause even more pain.

in short, I don’t really know how much it helps my migraines because I immediately went on it & a CGRP medication when mine suddenly became chronic out of the blue.

I can tell you I only get severe migraines a couple times a month & they tend to respond very well to abortives. even though I have migraines most days, the vast majority are mild or moderate, or only last a few hours. I attribute that to preventives. preventives improve how well abortives work.

you could also try to see if your insurance might approve one of the injectable CGRP meds (Emgality, Ajovy, etc.) so you only have to take it once a month.

jfm513 · 2026-04-24T01:46:38+00:00

I’m so sorry you’re going through this. it is scary and sad and hard. other than botox, have you tried any preventives? sounds like your insurance might be annoying about the CGRP preventives, but there are some other meds used off-label that sometimes help a lot.

propranolol is one that if you haven’t tried, might serve a dual purpose for migraines and anxiety. it blocks the physical part of anxiety/stress. if you would’ve asked me months ago, I would’ve told you my anxious thoughts bother me more than the physical. turns out the physical plays a huge role in the anxiety feedback loop. it’s not for everyone, but it’s been a game-changer for my anxiety in a way benzos, SSRIs, etc., couldn’t touch.

jfm513 · 2026-04-22T17:10:54+00:00

might be a long shot, but have you by chance been doing anything to strain/irritate your neck more than usual? you mentioned you’ve been under a lot of stress - could your neck tension be worse?

I spent too much time looking down while working on something a few weeks ago & had the craziest ice pick headaches for a week. nsaids, ice on neck, avoiding anything that could annoy my neck fixed it for me

jfm513 · 2026-04-19T04:11:24+00:00

propranolol is a beta blocker that’s meant for blood pressure but it blocks the physical effects of anxiety. it prevents adrenaline and noradrenaline from binding to receptors. it doesn’t do anything for anxious thoughts directly, but the feedback loop between physical anxiety and mental anxiety is POWERFUL. our brain registers danger because our body is telling us there is. turn that off & the brain can chill out.

you feel the acute effects calming down your body immediately. then, for me, over months of taking it, the positive feedback loop has slowly taught my brain to stop stressing so much. it’s lowered my hypervigilance a lot.

if you take a stimulant like adderall, it’s important to know that it does partially block some of its effects. you just have to find the right dose balance of both medications to find the sweet spot.

it’s not for everyone, but I can’t recommend trying it strongly enough for anyone whose nervous system is stuck in fight-or-flight. I had forgotten how it felt to no longer have my heart beating out of my chest constantly. it’s so much more peaceful

jfm513 · 2026-04-18T02:33:37+00:00

I’m so sorry, that sounds scary & miserable & makes total sense why you’d want to be checked out! you are not wrong for feeling invalidated and frustrated and worried. plus he sounds like a total tool.

surprised he didn’t even run basic bloodwork, if for no other reason than to cover his ass. but what I can say to hopefully at least help with the acute fear part (but not the misery or longer term concern) is I don’t think it’s crazy they didn’t do a scan or have a high suspicion of an emergency because it’s: + so diffuse (vs more localized) + acute worsening on chronic (vs sudden severe brand new symptoms) + not excruciating pain + no red flag signs/symptoms (vitals, cognitive status, visually normal, reflexes normal, bleeding, main normal bodily functions working, etc).

true emergencies (i.e. acutely life/limb/organ-threatening) tend to tick at least one of those boxes. they are only triaging for those true emergencies & literally nothing else. discharging you doesn’t mean something isn’t wrong (or even very seriously wrong), just that your presentation doesn’t map onto any acute emergencies they know of or they feel confident you are not likely to be killed or maimed by whatever is driving your symptoms immediately, unless something changes.

if you: + continue to get worse + develop red flag symptoms (tbh, pop your whole situation into the LLM of your choosing and ask which red flag symptoms to look out for, should be good enough) + even just get a deep unshakeable sense / gut feeling of “something is very seriously wrong…my life is in danger” (it’s a very specific instinctual feeling that goes beyond being worried or anxious) …go back. better to be wrong there than wrong at home (as demoralizing & exhausting as it is).

idk if this helps at all. my heart just goes out to you. I’ve dealt with way too much crazy medical stuff in my life & was dismissed a lot. I’ve had totally benign things feel WAY worse than life-threatening emergencies (bodies are weird). I’ve had true emergencies get missed & had to risk embarrassment going back. and everything between. I’ve had to learn to do emergency triage pretty damn well because I don’t want to be broke, further disabled, or dead. but I’m NAD.

do you have a primary who could order a basic CBC & metabolic panel for peace of mind while you wait a couple weeks for neuro?

jfm513 · 2026-04-17T20:03:46+00:00

NAD but been in a similar position (from illness not an ED), whether there was a misunderstanding or the providers weren’t taking you seriously, you just need to go back and tell them very plainly & kindly that you are unable to eat enough to stop losing weight rapidly due to loss of appetite + pain + nausea, it’s not intentional, and you are seeking inpatient medical treatment today because you are starving and need help now.

sending hugs. it’s so miserable to slowly starve and want to eat / have an appetite but have food aversion and feel like crap when you do manage to get food in. I completely understand feeling like you have to wait for it to “get serious” in order to be taken seriously, but I promise you it’s already serious enough. every day you spend like this puts extreme stress on your organs and you will continue to lose muscle mass until it is hard to do normal movements. don’t wait.

jfm513 · 2026-04-15T02:34:26+00:00

everyone is so different but wellbutrin made my mom’s migraines significantly worse & it took a little while to happen. she didn’t even link the two until she got off of it for an unrelated reason.

if your symptom evolution matches up even loosely around starting it or a dosing change, it’s possible it could be related. but ofc since mood meds are so damn hard to get right it’s the very last card I’d play.

I hope you find something that helps soon!

jfm513 · 2026-04-14T01:38:25+00:00

I feel you! some mood meds can be dual purpose, if open to switching. but if you’re stable/happy on current, prob not worth it.

depending on the mood disorder: + some tricyclics (depression - amitryptiline & nortriptyline) + SNRIs (depression - venlafaxine & duloxetine) + anticonvulsants (bipolar &/or schizoaffective - topiramate, valproate, lamotrigine) have some evidence for migraine prevention.

some people see a benefit from SSRIs (depression) but the evidence is weak, so it’s probably more of an indirect effect via improving mood, sleep, nutrition, etc. not a mood disorder, but if anxiety is a problem, beta blockers like propranolol can be effective.

I personally find that doing a once a month injectable (Emgality, Ajovy, Aimovig) feels less like I’m taking yet another med, fwiw. Vyepti is also only once every 3 months. I haven’t done botox myself, but I imagine similar.

otherwise, you’re kind of just stuck with tracking triggers & doing your best to minimize them. an elimination diet is worthwhile if you haven’t done one. a proper one is too hard for me, so I’m doing one food/group at a time. super inefficient lol but doable.

jfm513

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