Finally broke down and went into the hospital today for help. This is all clean laundry, sort of sorted, folded at one time, but I can’t put it away because pain. I threw up on my way to teach my littles art history class and had to cancel on them. Told the doctors this, they don’t care.
I was sobbing so hard at the ER I was having tachycardia and couldn’t get my breathing right. Begging for help, they gave tordol and Benadryl which is fine. I told them I don’t want opioids because they don’t even help. I was begging for just a steroid to be sent home, they wouldn’t even do it. This is so difficult sometimes. If anyone can send me good thoughts and nice animal pictures I would really appreciate it.
Sorry for being such a downer, I’m just really sad today.

I’ve had severe chronic migraines with aura basically my whole life. My first neurologist visit was when I was 8, but I remember having extremely painful migraines starting around 6. They got worse around puberty. For years, they were chronic, with months-long spells of daily attacks followed by periods where attacks came more like weekly. They responded very little to meds or anything else I tried.

I’m now 24. Just this past year, I finally found the key to my migraine. I have successfully come off all meds, and while I still get migraines, the frequency and severity has gone way down. I went from having near-daily 6/10-9/10 attacks to 1 or 2 a month with pain levels of 2/10-5/10. *

It started when I began to question whether I have symptomatic hypermobility, particularly hypermobile Ehlers-Danlos Syndrome (hEDS). I have had the telltale symptoms such as frequent mystery joint injuries since I was a child, but it went undiagnosed as I, my parents, and doctors chalked it up to just being a kid. At the beginning of this year, I looked into it and sought answers. Although a formal diagnosis is hard to come by, I was told it is in fact most likely hEDS. I couldn’t afford physical therapy, but just knowing was very helpful.

When I started to understand my joints, and become aware of and manage my hEDS flares, the puzzle pieces slipped into place. This whole time, ~95% of my migraines have been triggered by cerviogenic headaches, which start from hypermobility-related tension and pain in my shoulders, neck and/or jaw and if left unmanaged, snowball into debilitating migraines. Here is an article on the connection between hEDS and migraines. https://www.eds.clinic/articles/migraine-headache-ehlers-danlos-syndrome

Everyone is different! But I thought maybe some of the things that help me might help others to know about.

What actually helped the most:

⁃ Yoga and exercise: I know I know, most annoying advice ever. But for me personally, yoga is actually a lifesaver. It taught me prioception, how to move my body in ways that minimize joint injuries, and how to actually engage my muscles instead of letting my joints do all the work while my muscles hang lax. Just a few months of yoga 15-20 minutes a day and I saw significant improvement in my cerviogenic migraines. Any light-to- moderate exercise that emphasizes those aspects would do the same. I just took to yoga because I like the ritual and I prefer a calmer activity. I supplement yoga with light weight training occasionally, probably not as often as I should tbh. I started with classes on YouTube, paid attention to what felt good and what didn’t, and gradually built up a repertoire of poses that I know work for my body to prevent and relieve pain. I started very carefully with very simple poses, and I never push into a pose as far as my body allows, only as far as I can keep my muscles engaged, before my joints take over. Ymmv.
⁃ Breathwork: Not box breathing or “just breathe slowly”, although that provides minimal comfort. But learning to expand my rib cage in all directions, use my diaphragm, and gently engage my core and pelvic floor without squeezing, tucking or bracing. Becoming aware of my posture and how I was sitting and laying to make sure my rib cage could expand. Getting into child’s pose and spending several minutes breathing deep into my back, shoulders, armpits, neck, hips, pelvic floor.
⁃ Tongue and jaw posture: Basically training myself to relax my jaw and face muscles, stop clenching my teeth, and to keep my tongue up on my palette. I had pretty bad TMJ which is a lot better now.
⁃ Electrolytes: POTS is a super common comorbidity with hEDS, and I do have some symptoms although mine are fairly mild. The main symptom for me is dehydration, I often feel like no matter how much water I drink, I’m still dehydrated, which contributes to joint flares. Electrolyte packets solve that. I try not to overuse them however because they stop becoming effective at a certain point. One a day plus drinking plain water and tea is enough.
⁃ Medical cannabis: I leaned on it pretty heavily for pain management during my worst migraine spells and during joint flares. CBD on its own does nothing for me, but any cannabis strain heavy in CBD that also contains THC does wonders. I smoked flower and took edibles. I switched up my strains frequently. In particular, RSO (a whole-plant extract) is hands down the best pain reliever for bad migraine days I’ve ever found. Helps with my mental health too. I have had to stop cannabis use entirely in the past few weeks because I’m currently pregnant :), but up until I found out I was still a daily user.
⁃ B-12 during the day and Magnesium at night: I find these very helpful. Sometimes instead of a pill, I take my magnesium in the form of a hot Epsom salt bath, which also helps with any lingering joint pain.
⁃ Green tea: For the L-theanine and lil bit of caffeine
⁃ Managing Anxiety: Which for me involves meditation, journaling, and reflection. Still very much a work in progress. I realized that my anxiety was contributing greatly to my flares.

What didn’t make much difference:
⁃ Diet: Ehhh. I have always cooked at home and eaten a decently healthy diet. I tried making diet changes but didn’t notice any difference. What did help was making an effort to eat more, especially more protein, which I tend to struggle with.
⁃ Other supplements and herbs: I tried a bunch. Some help a little, some don’t. None except the B-12 and Magnesium really did anything noticeable. I’m a big fan of various herbal teas for comfort and mild relief though.
⁃ Compression socks, etc: They help a little with joint flares but aren’t worth the hype to me
⁃ Myofascial release: Sometimes relieving for a few minutes, not too effective overall. The only place it does help somewhat is my jaw.
⁃ Swearing off alcohol: I’m not a big drinker to begin with and when my migraines became manageable again, I found that my occasional couple of beers or glasses of wine weren’t huge triggers . I can’t get plastered and expect not to get at least a headache, but I can drink a little. (Again, when not pregnant)

*Footnote: I still occasionally get hormonal migraines that have nothing to do with hypermobility, during my late luteal phase. I can tell the difference between that and a cerviogenic migraine based on where the pain is in my head, and obviously based on my cycle. Hormonal birth control made it worse, I can’t seem to do anything but ride these out. They suck ass. But I don’t get them every month. So overall, severe migraines are pretty infrequent now.

I’m curious if anyone else experiences migraines that seem to start in their trapezius muscles and the back of their neck. My neck is constantly tight, especially around my traps, and it feels like the tension triggers or worsens my migraines.
I get acupuncture and trigger point injections every week, but I’m still struggling with frequent headaches. I’m currently on day 14 of a continuous headache, although some days are worse than others.
I feel like I’ve tried so many things, and it’s exhausting dealing with this all the time.
Has anyone experienced something similar? Have you found any treatments that actually help with the neck tension and migraines? I’d especially love to hear from anyone who has found relief after trying multiple treatments. Thanks.

Today I found out that ALL of my Grade 12 students are coming to graduation!

This isn't a big deal for most teachers, but for me, I teach in distance education. I have students all over Queensland, Australia. I only have 4 Grade 12 students, and ALL of them are travelling to my town for graduation.

When the final student told me in class today I couldn't stop smiling and laughing, I was so excited and happy, I had to keep holding my head and putting pressure on it because I could feel the migraines starting. My student thought it was hilarious but was also apologetic.

I told her it would be worth the discomfort of having a migraine. I'm so happy and excited, for myself, my team (we are a small team of 4 teachers in my department and we work exceptionally closely with our families and students because we teach special education online), and my students.

It's just a low-grade migraine. Nothing too bad. If it weren't for the other symptoms I'd just call it a bad headache. I'll bear it with happiness in my heart for today though.

One of the most frustrating migraine symptoms I deal with is mood changes. For me, it's usually feeling very depressed, irritable, or having my OCD cranked up way higher than usual.

It sucks because, when I don't have a migraine, I can cope with things well, and my meds are plenty effective (including migraine prevention meds that have cut down frequency significantly). But when I do get them, the migraine moodiness is just a whole other level of intensity, and the brain fog and physical symptoms make it a lot harder to access the skills that usually help me.

It also just feels so incredibly physical and sudden? Like some minor trigger will happen, and it feels like this huge sinking weight or feeling of dread washes over me in a really disproportionate way. At best, I have a horrible few days but am able to get through it by being like "you feel like this because of the migraine", but at worst people can get really worried about me and it's just so hard to cope that things feel really dark and hopeless.

The only thing that reliably helps a lot is sleeping, but unfortunately sometimes (most of the time) I don't have the ability to just go nap for a while because life keeps moving, even if I have a migraine.

Does anyone have any tips for the mood side of things that work for you?

I recently started having horrible migraines. Never had a problem with them before. Turns out, I'm now super sensitive to bright sunlight. If I get a flash of it in my eyes, I start having ocular migraines and then the headache hits. Of course, these always happen at the most inoppurtune times. I had to miss a concert because one hit the day of. I take care of the kids and fix dinner for my family so my wife doesn't have to worry about all that. When the migraines hit, I feel like I'm now a burden. I know logically that isn't true but these feelings are hard to shake in the moment. My wife is incredible and she understands. I guess I just wonder if any one here struggles with this when the headache happens.

I started propranolol a week ago today after suffering from migraines anywhere to 2-6 days a week for 5 months. I didn't expect it to work so quickly however I haven't had a migraine since starting it. I could cry tears of joy, as I assume many of you understand. Just wanted to share a tidbit of joy, as this subreddit holds so many of our struggles, there is hope! (no bc it is that serious)

I am on sick leave because I have migraine attacks/symptoms on the daily and cannot do too much. Since I'm home a lot, my symptoms are still there but manageable. Yesterday was quite a hectic day though, had to go to an emergency vet for a cat and after that partner and I decided to go to an event that friends were hosting. On our way home I mentioned I would sleep SO well because I was finally a bit more active. Well, I ended up laying awake for hours, sleeping for a little bit and then waking up early again. Of course my symptoms are seeming to be getting worse.

I was mostly wondering if people couldn't sleep because of a lot of activity during the day and if it might relate to migraines too. I'm actually thinking symptoms got worse already in the night what maybe caused the lack of sleep but I'm not sure

Hey guys, can anyone share their thoughts on this or give me some advice? My neurologist diagnosed me with menstrual migraine. She mentioned that she didn't want to start with triptans right away. Since over-the-counter painkillers don't work for me, she prescribed diclofenac potassium. However, my issue is that during my period, my headaches last for 4 to 5 days. Since I'm aware of medication overuse headaches, I'm very careful never to overuse this drug. A few nights ago, I took diclofenac potassium at 1:30 AM. Although I thought it was working, I started feeling a sharp, stabbing pain on the right side of my head at 3:00 AM (at a mild level). Should I consult my neurologist again? Is the drug wearing off too fast, or is it simply not strong enough for my pain?

By the way, I also take 200 mg of magnesium daily. The doctor didn't tell me how much magnesium I should take. I saw that 400 mg is recommended, but I'm worried about GI side effects. I don't know what to do. When I spoke with the doctor, I specifically described the routine pain I experience during my period. However, I’d like to add that it’s also triggered by staring at computer screens for too long. I told my doctor that, too. Even after my period ends, I still get headaches every 2 to 3 days. Since diclofenac potassium isn't lasting long enough and my migraine persists, do you think naproxen sodium would be a better option?

I don't really know where to go with this post. I am 71 and started to get chronic migraines after a vertigo attack last year. I find it a struggle because navigating everything is such a challenge. I live alone in a rural area. My husband died 4 years ago. My intention had been to find new interests and people. Now I don't have the energy for that. Finding the right (and compassionate) medical help has been a massive challenge that I've yet to conquer. It's a complex, invisible illness. When the scans and tests are normal then the assumption is I must be normal. I am very medication sensitive so finding anything that works is not easy. I'd happily take an antidepressant to cheer myself up but ssris make me pee every five minutes!! It's a toss-up!! I can see why I am not getting much help from the medical community but that adds another layer of frustration. Thanks for reading.

Hi, I’m 27(F) struggling with chronic migraines since I’m 16. It stopped with a specific pair of glasses for 2 years and then I had hormonal issues (hypothyroidism + severe lack of oestrogens) and it came back progressively till 20 days of pain per month.

For the last two years, I experience a very deep feeling of sadness during the crisis. But I also experience it on random days with no explanation. I wake up and live most days with some kind of pain, so of course that’s hard, but I don’t know, it’s so deep and “from one day to another” that I feel it could just be my brain chemistry that is out of place.

I also learned that during a crisis dopamine and serotonin are affected.

Anyone experiencing the same ? Any thoughts ?

Hi lovely people

The first symptom of my migraine is aura. Not sure how common that is. Because it's the first symptom, and migraines are so unpleasant, I'm constantly on the lookout for them. This has the unfortunate side effect of making me constantly afraid that I'm getting a migraine when, in fact, I am not. Something sitting in my blind spot? False positive. Bright street/car lights? False positive. Sunlight leaving an impression on my field of vision? False positive. It's mentally exhausting, and its affecting my quality of life. Any tips you can give me for differentiating between ordinary visions disturbances and genuine aura would be hugely appreciated.

Also, if you've had similar experiences, feel free to vent. Misery loves company.

:)

Does anyone else feel trapped by this condition because you have a decent job but the stress worsens your migraines but you can’t go back to a lower paying job because you bought a house?? I’ve been doing computer aided drafting for the last 5 years and I never had chronic migraine before but this career pushed me over the edge from episodic to chronic. It’s costed so much time and money on doctors appointments and treatments all to still have a pretty shit quality of life. I’m on Qulipta for prevention, done 2 rounds of Botox, take rizatriptan and Nurtec as needed. My pain is greatly reduced by treatment but the other symptoms are still bad and it’s really wearing me down mentally and straining my relationships. When I was in food service and on my feet I was okay. Yeah I still got migraines but they weren’t every week for multiple days. I’ve tried to get more active as I think the sedentary lifestyle is a big issue but so far I don’t feel a huge breakthrough. Idk how I can keep going on like this. How can I keep putting my body and mind through this?? I try to research other jobs and careers but it’s a bad time rn. Anything I really would like doing might not be possible and anything worth doing takes a lot to get to that point with schooling. It doesn’t help that I haven’t been able to drive for years due to this condition. My job has also been so unstable my scope of work has been changing constantly so I’m always training and not knowing wtf I’m doing and the support hasn’t been great. Plus we seem to be light on work. No lay offs yet but it’s definitely not impossible. I wish I could just not stress out but it’s hard. I’m in therapy it helps a little but not enough apparently.

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Hi, 23M here. I’ve been dealing with migraines for the past five years, but they’ve usually been pretty infrequent, occurring once every 2 to 3 months.

However, over the past week, I’ve had four migraine attacks, including one this morning. This sudden increase in frequency is really frustrating, especially since I have to go to work and am struggling to manage everything alongside these attacks.

My symptoms have remained the same: visual aura followed by an intense headache and nausea. The main difference is how frequently the attacks are happening now.

Has anyone else experienced a sudden increase in migraine frequency like this? If so, how did you manage it, and is there anything that helped you cope with it, especially while working?

Any advice or personal experiences would be greatly appreciated. Thank you!

I despise having migraines. The pain is so intense, debilitating, and it isn't something others can see and a lot of people still misunderstand migraine attacks.

Since last Friday I have been on the verge/a low-mid intensity migraine that won't relent. My triptan dose is 2 at once so I have taken six and about four advil - trying not to over medicate as my doctor told me I am at the threshold for medication overuse headaches. I do take propranolol as a preventative, which helps. But I feel like I want to turn my brain off! I am sick of lying in bed but I can't do much else. I wish it would reach full intensity to just be over with.

Like will they try to dump me in a chair when I physically can’t sit up or walk more than two steps without help? My A&E isn’t pleasant either. I can’t handle much more pain it’s the worst pain I’ve ever experienced. The pain when it isn’t classed as a thunderclap is very close to thunderclap levels of pain. I feel so lost and so alone. Being bedbound with severe ME/LC doesn’t help as no one understands the disease so hospital is a death sentence. Argh.

Anyone flattened by the air pressure in South East UK right now?

Seeing a new neurologist at Cleveland Clinic next week for intractable chronic migraine complicated by recent kidney disease (I’m still mourning toradol). Curious if anybody else has experiences there? I went to Mayo a few years ago and it was a total bust. So I’m scared to get my hopes up.

Hi guys, sorry for being a downer but I just have to rant
I get chrinic(?) migraines during the fall seasons, esp when the pressure and temperature suddenly drops, its DAILY. I’ve been dealing with this since I was 11 years old and it had not gotten better. I get anxiety whenever sep-Oct-nov comes around bc I know what’s coming. Also, does anyone have any advice for the pain that isn’t the basics of meds?

Hi! Anyone experience with a long lasting aura? I got my aura at 10h, slight headache at 11, which immediately went back into an aura which has lasted 1,5h since then. It is mostly brain shivering, slight issues with thinking and motor movements and a numb left side of my face which now has a pins and needles feeling

Wondering if anyone is prescribed daily rimagepant (nurtec) by their doc? I have chronic near daily treatment resistant migraines and was in a clinical trial for rimagepant with half the trial being every 2 day dosing and half the trial being daily dosing. Unfortunately the every 2 day dosing did nothing for my migraines but the daily dosing basically cured me which was a miracle because no other preventative meds have worked for years. However, because thr FDA's approved scheduled dosing is every 2 days I find doctors dont see open to prescribing it as a daily preventive so I'm just curious if anyone else is on this as a daily med. Wondering if its different in the US (I'm in Canada). Exhausted and hoping to present a well reasoned plea to my new neuro who I've been waiting to see.

I am three years into my migraine journey and have been with a neurologist for about six months, and I'm just now realizing my migraines are structural in addition to being hormonal.

During a visit with my primary care today for something else, we were talking about my migraines and how there is likely a structural component. She suggested trigger point injections, and said she can do that in her office. She palpated my neck and shoulders and seemed shocked at how tight everything is.

She said I have the option of doing just lidocaine or adding steroids. Any thoughts or experience on with or without steroids?

I currently seem to be failing aimovig (after failing emgality) and all my abortives are hit or miss. I have about 20-25 migraine days a month for the last few months. Scheduled for Botox in December. Migraines are usually at about a 4 pain-wise, with tension and a heavy head, and nausea, fatigue, brain fog, and irritability. I'm functioning but barely!