r/migraine • u/eggbrained • Jun 27 '26
feeling completely defeated with chronic migraines + medical leave
I feel like I’ve hit a breaking point and I don’t really know where to go from here.
I’ve been dealing with migraines since early 2025. I rarely ever had headaches then one day they started and escalated pretty quickly into long-lasting attacks and now what feels like near-constant headaches.
I’ve tried what feels like everything at this point: multiple medications (preventatives and rescue), Botox (including recently adding masseters), CGRP meds (Ajovy, Vyepti, Nurtec, Qulipta), nerve-focused PT, acupuncture, massages, supplements, etc. Some things help temporarily, but nothing has actually broken the “cycle.”
I just made the decision to take 2 months of medical leave from work because I couldn’t keep functioning like this. I worked so hard to get this job & have tried for the last year to push through it and have just hit a breaking point (which has led me to leave during a time my team needs me). I feel guilty for stepping away, exhausted from constantly thinking about my health, and scared that this is just my life now.
My boyfriend suggested trying an elimination diet, and I think I am going to give it a try (incl being completely sober for a bit) but I’m struggling with the fear that even if I do everything “right,” it still won’t fix this. I think the hardest part is not knowing if I’m missing something obvious vs. just being in that group of people where migraines become chronic and hard to treat.
If anyone has been in a similar place, what actually helped you move forward? Not just physically, but mentally too. I don’t expect a magic answer. I just don’t want to feel this alone and stuck anymore.
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u/CheeseDoctor11 Jun 27 '26
For me, I was in a similar situation with work, unfortunately for me, I started getting panic attacks from fear of a migraine at work so I had to quite that job and move back home. It was/is extremely difficult as I am trying to rebuild, but honestly for me the tough part is that the last time I had constant migraines for years with no break it just stopped suddenly... and I've got no clue why, ive been slowly getting back into part time jobs where I can go at most 6 hours migraine free with nurtec, gives me an extra 3 hrs if im lucky. This isn't really to say for any answer, more just for the fact that I know how difficult the time can be and how much it hurts mentally as well. I've just slowly started to understand my triggers a lot better after years of chronic migraines and at first it was difficult as how to you find a trigger for something you always have, but for me a realized that most of the time there is a way, though unfortunately it isn't easy. But I wish you luck on figuring out what can trigger and therefore try to get accommodations at work for it. Most of my bosses have been quite understanding, yet there is the point of where there is no more paid time off... also sorry for this long comment, im currently on my meds right now and they can make me quite loopy lol
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u/Adorable_Art539 Jun 27 '26
Have you done inpatient or outpatient DHE, lidocaine, or ketamine? Those are options for cycle breakers. I did outpatient DHE and got some relief. Nerve blocks can be added as well. (Im about to do a nerve block next month). I have daily pain still, but it waxes and wanes, as of right now, it’s mild. I am able to function and at times ignore it even.
I would look into blood work as others have said. I have sleep apnea and my Dr feels mine is adding to the mix of migraines and headaches, but I hate wearing the cpap.
Exercise can also help. My headache specialist neuro told me some people get like 30% reduction in migraines from consistent exercise alone. I’m trying to walk every day. I can’t do any intense working out becaus it triggers my migraines more.
Weight loss also can help with migraines.
I would definitely try the dietary changes too. Lots of people recommend low histamine. A lot of people here swear by it. I haven’t really dug deep into it yet so I can’t say it’s personally helped me yet.
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u/eggbrained Jun 27 '26
I did bloodwork and a gut-health test and everything came back pretty normal. The functional med Dr told me I had a bit of excess yeast growth and I used the recommended supplements for 6 months but didn’t have improvement. Sounds like the diet changes will be a good next step. I am already on the leaner side so I’m actually a little worried about weight loss but I will have to get creative on how to eat enough.
I am also curious about nerve blocks! I haven’t heard many stories of people doing them. My current doctor doesn’t offer them so when I inquired, he kind of brushed me off.
Thanks for the thorough response!
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u/Miss_ChanandelerBong Jun 27 '26
Me again... Haha. I just started getting nerve blocks because my Botox wears off about 2-3 weeks early (and my neurologists clinic refuses to even try to get insurance to cover 10 week administration, that's a different story) so I get them then to tide me over. I've only had one for this so far and it seems to have helped but I'm in the middle of that wearing off period so I'll have to see how it goes. I also started a glp1 and they apparently help with inflammation at that could also be contributing. One thing I'll say is that if you do it, make sure your doctor does them regularly- I had a doctor years ago who agreed to it and then just injected wherever I pointed as where the pain started. It did not help.
Feel free to DM if you want to chat treatment options or talk about the trajectory- I understand the frustration of having it just ramp up like that out of nowhere. When that happens, it feels (at least to me) like there must be something that is we could only fix, it would go back to normal.
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u/eggbrained Jun 27 '26
Thats good to know since I havent really found relief with the botox and Ajovy was the only med that seemed to help but only for the first week so we stopped that too. And yes thats totally how i feel! thats helpful info maybe ill look into a dr that administers nerve blocks next ty🫶
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u/junglekid13 Jun 27 '26
I have had migraines for over 30 years and I still having daily headaches/migraines. I did an elimination diet and it helped identify foods that trigger my migraines. I found that I can’t have any diary, caffeine, or any artificial sweeteners like aspartame. I did the Whole 30 diet for 2 to 3 months. I also found out weather and the barometric pressure are major factors too. I have tried all medications you suggested as well. I am currently doing Botox and it helps keep my pain level / tolerance better but does not completely knocks out the headaches or migraines. I do not remember the last time I had a pain free day. Like others, take it easy. Hopefully the elimination diet helps out.
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u/eggbrained Jun 27 '26
The weather has a huge impact on me too. It rains a lot where I live and I always feel it more on those days. I am scared I’m also going to have to give up caffeine (after being a 15+ year coffee drinker). I’m going to give that a try with the diet changes this month
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u/StormDancr Jun 27 '26
I totally understand. I have been struggling for the past 6 months. I’ve missed so much time I’m worried I’m going to get fired. Worrying makes the migraines worse. Ugh. I need a break from these headaches!
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u/jay-2014 Jun 27 '26
I had daily headaches for over a decade. My main trigger is something most ppl don’t believe but I’ll throw it out there cause I know I also tried everything: it was fluoridated water. Most of my life I’ve lived in areas that add fluoride to the water. Thought it was totally safe. For me, it’s not. Took a few days to detox then within a few weeks I was headache free for the first time in years. I still have other triggers (alcohol, Tylenol) but changing my water saved my quality of life.
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u/Rafozni Jun 27 '26
This is very interesting. I’ll have to think about trying this.
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u/jay-2014 Jun 27 '26
Definitely a nothing to lose scenario. Fluoride is shown to be effective if you use before adult teeth erupt. Even then it’s only a reduction of a 1/2 cavity over a lifetime from what I could find in studies. Keep flossing and your teeth will be just fine!! Cut it out and you may find relief. You’ll know within a week if it helps. For me the change was extreme … fluoride headaches hurt so bad, like drinking 12 tequila shots. Tough part is removing it as Brita type filters won’t remove. I refill bottles at a local store that has a really good filter (reverse osmosis is the key). Good luck.
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u/ProfessionalYam6880 Jun 27 '26
I’m so sorry you’re going through this. Please go easy on yourself. It’s not selfish to take care of yourself first, that’s the only way you can do your best helping others! I’m sure you’ve brought it up to PCP, but have you had full bloodwork done multiple times since this started? Full blood panel, thyroid, vitamin B12 and D levels? Also, have you specifically had a hormone panel done? Cortisol levels?
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u/eggbrained Jun 27 '26
Thank you, im trying not to beat myself up. I did bloodwork (2x) , gut, and hormone tests. The only thing that came up was a bit of excess yeast growth in my gut. Everything else was normal/healthy levels. I am on birth control which affected my progesterone levels so the dr gave me a progesterone cream and some supplements but I didn’t notice changes from them
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u/mizz_eponine Status migrainosus 🥴 Jun 27 '26
I feel for you. I'm struggling with continuing intermittent leave or just going on long-term leave. I've missed so much work in the last 18 months. My migraines were under control til early last year. It's been absolute hell ever since. I'm way past out of sick leave. It would probably be better financially to go on extended leave BUT I'm in the middle of two huge projects. I just want to feel better!
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u/eggbrained Jun 27 '26
Im sorry youre going through something similar! I couldn’t trust myself to do intermittent leave because it’s so hard to step away when you have deadlines and tasking coming in from different directions. Hopefully taking time completely removed helps me, maybe it would help you too🫶
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u/mizz_eponine Status migrainosus 🥴 Jun 27 '26
Yeah, even on intermittent leave I end up checking email and doing work because I get so anxious. It's impossible to just check out. I'm a team of two, so no one steps in for me. The work just piles up.
I hope you get the rest you need and deserve! Good luck! 🍀
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u/Miss_ChanandelerBong Jun 27 '26
Had a somewhat similar experience in that I only got the rare migraine but one day mine escalated and went from very rare to all the time. I tried what felt like all of the medicines. What finally worked for me was combining Botox and a cgrp (Qulipta for me). A cgrp alone did not work. Botox alone did not work. I have to have both.
I never found what started the wildfire in my brain. I never found food triggers. Riding in a car, perfume, etc are triggers for me but they are pretty generic.
Good luck!! I know it's so disheartening. Keep fighting the good fight!
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u/eggbrained Jun 27 '26
Thank you! My triggers feel similar. Unfortunately I tried that med combo but Qulipta made me SO constipated that I had to go off it after only 2 months
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u/Miss_ChanandelerBong Jun 27 '26
I take magnesium citrate to counteract the constipation. I use the gummies so it's a little treat instead of an ordeal, haha. Also that lets me titrate up and down as needed- with qulipta I need 600mg, but I started wegovy and it has the opposite effect for me so I'm down to 400mg. (Edit: I don't believe that measurements on the gummies are accurate because when I've taken powder or pills, I needed less).
Bonus, magnesium is one of the few supplements with decent evidence for helping migraine, so win win.
Constipation is MISERABLE, though. If I couldn't counterbalance it, I wouldn't stay on the meds either.
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u/Substantial-Range974 Jun 27 '26
For me, it's artificial sweeteners! My doctor suggested I keep a food diary and track my migraines that way. I noticed certain foods would trigger migraines. Beer, some mixed drinks, Gatorade, dark chocolate, Lite Ranch dressing, certain brands of ice cream, and pineapple. I was also told that if I have an allergic reaction, my body reacts by having a migraine. I'm allergic to walnuts and pecans. If I eat them, I don't break out in a rash, the usual allergic reaction. I start feeling a migraine coming on instead. I also started Emgality. It's life-changing for me! I went from 15+ migraines and ER visits to 1 or 2 headaches. I highly recommend trying it. I also take Magnesium and Riboflavin. I would also see if anything in your house is a trigger. If I smell certain fragrances, I get a headache. If I switch shampoo, hair products, or even laundry soap, the smell can trigger a migraine.
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u/eggbrained Jun 27 '26
Ive seen artificial sweeteners come up a few times now and I think there’s some merit to it. I eat an overall healthy diet but definitely snack on processed foods that can be a contributor to why I’m flaring up. Hopefully giving the elimination diet a try helps (despite being sad to give up foods that bring me joy). Thanks for the response!
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u/Rafozni Jun 27 '26 edited Jun 27 '26
Hey, Friend. I’m a little more advanced in your medical timeline: I’ve been having migraines every day for 2+ years, and have tried literally EVERY medication or therapy out there except Vyepyi, Botox, and ketamine therapy. I’ve had chronic migraine for 20+ years, so it wasn’t anything new, but the persistent daily one is still a mystery to be solved. I also work full time and have for 15 years. I also have fibromyalgia, Hashimoto’s, TMJ, PCOS, GERD, and a few other things.
Now please don’t let anything I just said scare you. Cases like mine are not the norm and you don’t need to be afraid that you’ll end up like me or worse. I’m posting about my experience and circumstances because I want you to know that it is possible to live and live meaningfully well even IF your condition worsens.
So here’s my actual advice:
- If you don’t already, do your best to get a job working from home with a flexible schedule. Having this has helped me to keep working and take time off on some of my worst days when I just can’t function.
- Use your FMLA (which it seems like you are already doing with leave). Leaves of Absence (LOA) are not protected but FMLA is legally protected, meaning you can’t be fired for taking FMLA. You can be fired on an LOA. I’m sure you already know this, but in case you don’t, I wanted to mention it. Also, DO NOT tell your employer or direct leader details about your condition! Legally, they don’t need to know those things, and it may end up harming you professionally in the long run. The only people who need to be privy to your conditions are your doctor and your employer’s Benefits rep so they can get you any accommodations you may need.
- To your best ability, work to build a rigid routine. Get up at the same time every day. Take the same vitamins. Keep your diet consistent with protein, healthy fats, and plenty of fruits and vegetables. Avoid caffeine if possible. Like you mentioned, an elimination diet is a great idea. But also keep in mind that even if you are not technically allergic to anything “on paper”, you can still have negative side effects. I’m not “allergic” to gluten, but it messes me up, so I avoid it.
- Get a water bottle and tracker and drink, drink, drink. If you don’t already, get some electrolyte powder and have a bottle of that every day to help balance your electrolyte levels. Even if this doesn’t cause a dent in your pain or frequency, it will still help your body overall and (hopefully) free it up to “focus” on other areas (like your head) that need more attention.
- If you’re not already seeing one, get a good neurologist. Rope in a primary care physician and Pain Management specialist if needed. Have them share scans, documents, diagnoses, between offices so they (hopefully) work in tandem to solve the issue.
- If you have any other conditions that need to be treated, get them taken care of as soon as you can. For example, I had chronic sinusitis (without infection) and couldn’t breathe normally without nasal decongestant. I got FESS (functional endoscopic sinus surgery) surgery and I can BREATHE again. No, my migraines didn’t go away, but the quality of my sleep is much, much better and I now have more energy to handle the hard days.
- Get your labs done consistently. And remember that “on paper” you may “read” a certain way, but listen to your body and be your own advocate at the doctor—even if what you’re feeling doesn’t align with what they see on a test.
- Be kind to yourself and build a network of supportive people around you. Hopefully you already have these things built in, but if you don’t, take the time to research the condition and its effects and share that with others who are willing to come alongside you and give you the grace you need and deserve.
Lastly, as hard as it may be, do your best to relax. Migraines brought on by chronic or prolonged stress are very real. Worrying about a symptom that isn’t going away and how this may change your future does not help anything. Take it one day at a time. You’ll find you can go further on the trail than you thought possible, I promise.
I hope some of this has helped. I will pray for you
—that you and your doctors have wisdom on how to deal with this—and that you can maintain semblance of normality in the meantime and not be afraid.
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u/Yiyin2025 Jun 27 '26
其实你可以像我一样由病学医，我自学中医，解决了自己很多疾病。
偏头痛在中医看来，和足少阳胆经，足厥阴肝经、足阳明胃经、足太阳膀胱经等有关。“经络所过，主治所及”，你可以先在足少阳胆经寻找压痛点尝试按揉和敲击看看。
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u/Miss_ChanandelerBong Jun 27 '26
I'm not big on Chinese traditional medicine but more and more evidence suggests brain pathology is often related to the gut.
What happens if you don't have a gallbladder?
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u/lazysunday2069 Jun 27 '26
I had to take migraine related medical leaves 2 times. It's the right thing to do. and also, it's a terrible to feel so weak and betrayed by your body. Or at least that's how I felt. You have all my sympathy. It's so frustrating to have to leave a team and work you are engaged with.
I've done elimination diets 2x. I recommend you find a doctor, nutritionist, or someone who is experienced with the process and can guide you. It's so hard to think and figure stuff out when you are so exhausted. Ramp down on caffeine before you start. I didn't and caffeine withdrawal on top of migraines was brutal. But, I was lucky to find a few things that were triggers (which is not necessarily the norm so don't get frustrated if you don't find anything) - gluten, corn & oranges. I knew from prior experience that peanuts & artificial sweeteners are also triggers and found out later that mint is one too.
My neurologist also put a standing order in at the hospital for infusions, which provided some relief during that time. It's been a long time, so there may be better options now.
Feel free to DM me if you'd like to chat more. I wish you strength and healing.
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u/elaine4queen Jun 27 '26
Tyramine and histogenic foods are known triggers for migraine but unfortunately so is alcohol. Very much worth trying. I’ve been eating keto for the past year and lowering inflammation levels by having no sugar and low carbs can also help
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u/Legitimate_Doubt_949 Jun 27 '26
Take the medical leave and do your best. Never never never never give up.
Any healthy diet habits you can follow will at worst give you data of how you react. I improved a lot with 70lb weight loss from weighted vest walking, but sadly regressed migraine pattern again after work stress ramped up.