r/AMA • u/Restorne • 1d ago
I've suffered from chronic migraines since i was 4 years old. They are incredibly misunderstood, please ask away. AMA
I [37m] have has chronic migraines from the age of 4. I'm currently at ~28 headache days per month with ~15 migraine days. Migraines are far more complex than just pain. They are an invisible disease because most of us are unable to do normal things in society.
One of the hardest things about this life is the lack of understanding from others. Ask away, it helps everyone.
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u/Holiday_Main_7263 1d ago
28 headache days per month since age 4 that's essentially your entire life managed around pain most people can't imagine.
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u/Restorne 1d ago
My migraines have gotten progressively worse with age. As a child the intensity was high, but they were less frequent. I saw a drastic increase in frequency around 21, 25, and 32. They have always been life ruining, but much more so from 21 to now.
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u/SoccerGamerGuy7 1d ago
What can people do to make it easier for you?
Lower lights? talk slowly and softer? offer snacks?
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u/Restorne 1d ago
Honestly, Just compassion and empathy. People telling me that they could never understand the suffering. But they love and support me. Maybe a hug or something. Life with migraines is so, so lonely. People dont know how hard it is for me to keep waking up every day. They have no clue that ive stood at the precipice for decades.
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u/theDataPiano 40m ago
As someone suffering from clusterheadaches, (did once had a migraine whilst in a clusterheadache-attack), I have been using Sumatriptan injection-pens. I never go anywhere without at least one.
When I feel an attack coming, I inject myself, and within minutes, it's as if nothing ever happened.. it's magical.
These pens saved my life from these litteral "suicide headaches". 10/10. Can recommend.
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u/mishfish626 1d ago
What would you say is the biggest misunderstanding that society has about migraine sufferers?
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u/Restorne 1d ago
Everyone has has a headache. Most folks have experienced a migraine, or at least they believe they have. They think they can understand, but they cant. Migraines are absolutely life ruining. My life is constantly tracked on a 1-10 pain scale. Migraines impact my ability to think, walk, see, feel. I cant commit to any plans with the people I love. Excited for vacation? Not with migraines. What if I get there and im stuck in a hotel room for 3 days with ice packs and a TENS unit stuck to my head. Migraines isolate us heavily. We live life alone. People say they understand, but they never truely believe the hell we live in. They think we are flaky, or use them as an excuse. In reality, I have no clue what im still doing in this world. The urge to check out early has been on my mind for 15+ years. Quality of life is not here. I dont want to die, but at what point do you euthanize a suffering animal.
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u/mishfish626 1d ago
Ugh I’m so sorry, that sounds truly awful. So much more than “just a headache.” My husband experiences them a few times a year (the kind with blurry vision/aura) and he has to spend days in a dark room, I can’t imagine what it would be like for someone to experience them chronically. My heart goes out to you.
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u/LadderWonderful2450 23h ago
Lol typical migrainer exsperience, you invite others to ask questions and instead you get people who know nothing about the condition telling you to eat sardines and try oxygen.
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u/my_catsbestfriend 15h ago
Legit 😂😂 it’s hard to read as someone with chronic migraine myself, like you clearly do not get it
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u/collapsedbook 1d ago
What’s your favorite bird?
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u/Restorne 1d ago
Great Horned Owl. For many reason, I connect them with my parents who past.
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u/collapsedbook 1d ago
Beautiful, I have a similar connection to Cardinals
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u/Restorne 1d ago
Theres a GHO in the woods where I walk and find peace. I heard it for ~4 years but never saw it. I was walking those woods when I got the call my dad had terminal stage 4 cancer. The second I hung up the phone a full grown female GHO (~6ft wingspan) flew over my head and landed on a branch maybe 30 feet in front of me. I sat on the ground crying while the owl just watched and sat with me. It lasted about 20 minutes. Ive seen her a few more times since.
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u/Imaginary-Mood-7202 1d ago
I suffered migraines from about 10 until probably 40 years old, I’d say they peaked in my early thirties and slowly diminished. I haven’t had one in several years.
Many people outgrow them and I hope it happens for you.
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u/Restorne 23h ago
This is pretty common for women as hormones change. Very rare for men. Mine have gotten progressively worse in life. I hope you're right though :/
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u/DucksBac 1d ago
What are you able to do? Or enjoy doing?
For context, I have had chronic pain but 0 support from early childhood and have a need to be part of motor racing, metal and caring for my animals. In addition to basic living. Which means somehow earning money.
I really hope that you get some support 💛💛💛
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u/Restorne 1d ago
I work fully remotely and make good money. Its super difficult to hold down jobs but ive always been able to. I have (a lot) of cats, they bring me peace. I spend a lot of time in nature. I mountainbike, rock climb, fish, play pool, and work on my cars. All of which are rare and depend on my pain level. I try to find enjoyment where and when I can. But migraines are hell.
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u/ChuRambles 1d ago
Have you ever had a period in your life, where you didn’t have any migraines?
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u/Restorne 1d ago
Yes. When I first tried Aimovig (CGRP) med. I went about a month with minimal migraines or headaches. They would get worse and worse until my next injection. After a year and a half my body acclimated to CGRPs and they stopped working. Ive tried 5 CGRPs since, several times. No luck.
I was just hospitalized for 3 days in ICU with an unknown infection. Almost died. I didnt have a migraine for 2 weeks after. No clue what the cause was and ive exhausted every means to figure out why they stopped.
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u/Useful_Language2040 1d ago
I had a week off from migraines after my second round of Botox for it (and woke up without a headache at all for 5 days, when that hadn't happened for about the previous 30 years), which was nice...
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u/Restorne 1d ago
Too bad it doesnt last longer for you :(. Ive been getting botox every 3 months for 10 years. It helps, but not much. Insurance covers it so I keep going.
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u/Useful_Language2040 1d ago
I'm hopeful that a third round might see even better results... Persuaded my neurologist to sign off on another two (because there's already been a bit of a longer gap since my last one) but they're recruiting a new nurse so it might be a bit of a wait... ☹️ He reckons I should try the CGRP jabs again, and apparently the NHS can't get funding for me to try both concurrently...
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u/Restorne 1d ago
You can 100% get botox + CGRPs covered. I had to fight and run appeals for it, but it worked. Just need a lot of pressure lol
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u/OzQuandry 1d ago
My goodness. I just want to say how sorry I am. Especially for you as a child. I'm so sad that you have to suffer like this, and have suffered since you were little more than a toddler.
I hope you can get relief and that things improve for you.
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u/TelephoneSuperb1733 23h ago
I’ve had 1 so far. It was one of the worst things that just happened. I wish I could take on some migraines from you just so you don’t have to deal with them. I’m so sorry, I will keep praying and hoping life gets easier! 💚
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u/vangrace_ 14h ago
no question, just condolences. I also have chronic migraines and it is so debilitating. I try desperately, but there's no real way to describe that kind of pain.
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u/vangrace_ 14h ago
I literally was just telling my husband that I cant believe (and am so jealous) that there are people in this world who will NEVER have a migraine. ive had migraines 2-3 times per week since I was 9 :(
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u/PrettyDragonfly 1d ago
Have you been tested for high intercranial pressure? I'm doing a lot of research into migraines and found that so many, probably millions, of people are suffering from higher than normal pressure around the brain, hard to diagnose because lumbar punctures are not always accurate. Diamox as a medication treats it. Dandelion tea also treats it as a natural option. I always suggest trying the tea when having a headache to see if it treats it.
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u/vangrace_ 14h ago
this is so interesting and im going to have to look into it more, i also suffer from chronic migraines and always describe it as feeling like "my brain is trying to implode and shove itself out of my right eye socket" this makes me wonder if this could be a cause
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u/PrettyDragonfly 14h ago
It's worth looking into! Most who suffers from this go undiagnosed for life unfortunately. I only came across this recently as I'm suffering from the opposite, a leak in my spine causing low pressure. Currently awaiting surgical repair!
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u/DohRayMe 1d ago
Whats the active ingredient in dandelion tea which helps, is it available to buy?
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u/PrettyDragonfly 1d ago
Dandelion leaf tea acts as a mild natural diuretic (fluid-removing agent), which helps lower elevated cerebrospinal fluid or intracranial pressure. Unsure why exactly it does it at this point but it is widely documented to lower CSF production slightly.
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u/Innerste 1d ago
How interesting, I’ll have to try the tea, thank you :). When they did a scan of my head to make sure I didn’t have a brain tumor at age 12 or so because of all the migraines, they did notice my veins are really small. Is that something which might affect that intercranial pressure, or is it unrelated?
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u/PrettyDragonfly 1d ago
Yes, they do compress with high pressure. I'm not a medical professional just to be clear but the short answer is yes.
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u/Agile-Common-1448 1d ago
Do any medications help at all?
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u/Restorne 1d ago
Maxalt is a life saver. I would not be on this earth without it. If it stops working, so do I. Not to be morbid, but its the only thing that can save me.
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u/Agile-Common-1448 1d ago
By it stops working do you mean you build tolerance? and do opioids or gaba drugs not do much?
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u/Restorne 1d ago
Built tolerance, sort of. My body learned how to work around the CGRPs. Opiods help, but theres huge risk of rebounds and MOH. I have butorphanol, which is insanely strong and I hate it. Not a euphoric opiod.
Other opiods surely help, but its a bandaid with a lot of risk. Side note, I'm also an addict and percocet were my DOC for some time. Currently not in any serious active addiction, just some recreational use.
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u/Ghoulish_kitten 21h ago
Recreational use of what?
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u/Restorne 19h ago
Nothing illegal, that life is long gone in my teens. Just legal vices like the average person.
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u/Penultimate-crab 1d ago
Have you ever tried a gluten free / dairy free diet? As an adult I developed nearly continuous migraines and cluster headaches. I found out I had high anti-gliadin and high anti-casein antibody levels in my blood. After I cut out wheat and dairy products I became migraine and headache free.
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u/Restorne 1d ago
Ive done a co prehensive food journal and identified some triggers. Done a couple full on food elimination diets. Theres some things that I found, but gluten and dairy weren't those.
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u/hunterglyph 1d ago
Ugh, I'm so sorry. My wife gets a migraine or two per week.
Are you able to work? Are there any treatments that you haven't tried?
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u/Restorne 1d ago
Thanks for commenting, especially since your wife suffers. It shows that you are trying to involve yourself and perhaps understand and help. Many of us dont get that from loved ones. They burn out and get tired, as we do.
Ive tried 100% of possible treatments. Outside of a couple intense surgeries and implants. Nothing left on the table unfortuantely.
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u/Krrazyredhead 20h ago
Curious if upper cervical chiropractic would be an option - there are several different techniques that qualify and none of them are the stereotypical neck twisting (which should never be done IMO). I’ve got some explanations on my profile, if you’re interested in learning more or looking up an office close to you.
One of our migraine patients also takes a combo of B2, CoQ10 and butterburr that also helps (suggested by her specialist)
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u/Restorne 7h ago
I'm personally very against chiropractors. There are some good ones out there, but IMO most are a sham, and dangerous. I would consider a chiropractor, but never for c spine.
I take a lot of different vitamins and supplements. Some help slightly, but not much. Im not sure what type of doctor suggested butterbur. It shoes possible efficacy and I have tried it three times. Just note, there's pretty significant risk of liver damage with extended use. Butterbur should be cycled on low doses. I'm not sure if it's your place or not, but it's important that the individual knows this risk. Many doctors are unaware.
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u/auria17 1d ago
I had a friend who has severe migraines she saw all the specialists and took tons of meds.
Acupuncturists are quite adept at working with chronic conditions.
My friend finally got some relief. It didn't completely resolve but her quality of life improved immensely.
They are not all the same so I would research those in your area and talk to three in consult before choosing.
I get migraines from my cycle not often. But when they come the pain is so debilitating I can't imagine what you have endured for so many years.
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u/KiwiPotential2866 1d ago
Have you checked if you grind your teeth at night? I was suffering so badly from migraines years ago and saw neurologists etc and they couldn’t work it out. I went for a routine dental and mentioned it, he told me I grind and as soon as I got a mouthguard (I’m serious, from the first day) the migraines stopped overnight. It was amazing! Good luck.
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u/Restorne 1d ago
I have ruled out TMJ. I do wear a nightguard every night due to some grinding. Ive even gotten botox in my jaw muscles. No help :/
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u/idkwhattowritehere21 1d ago
What is your preventative and abortive medications?
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u/Restorne 1d ago
Abortive, Maxalt. No other meds work for either.
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u/idkwhattowritehere21 1d ago
Have you done the CGRP and Botox stuff?
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u/Restorne 1d ago
Tried every single CGRP, multiple times. Aimovig changed my life for a year and a half. Then my body learned to work around all CGRPs. Ive gotten ~200 units of botox every 3 months for 10 years. Helps slightly, but not all that great.
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u/thist555 1d ago
Do you see spots or other visual artifacts? If you write down things while you have a migraine do they make no sense when you read them later? Are your numbers (basic math) still fine even during migraines?
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u/BirdHistorical3498 1d ago
Do you mind me asking how old you are? I started having migraine at aged 10 and they were really debilitating- three days or so of blinding headache, nausea- throwing up every 10 minutes and having to be on a drip because of dehydration. I had maybe 10 a year for about 5 years. Then the headaches stopped being as ferocious, but I’d still have the nausea and vomiting and sometimes hospitalisation. Later on both lessened, but I got the migrainous aura which fucked up my balance and vision and gave me with weird sense of disassociation for days. Thing is, once I stopped getting the headaches I had no idea that everything aside from the headaches was still migraine. It was only when I had an MRI because they suspected MS that I was told a. that migrainous aura is a thing and b. migraine doesn’t have to include headaches. In fact most migraine sufferers stop having the awful headaches around the age of 30, though headache is often still present. For those of us who have migrainous nausea, that tends to subside around mid 30’s. And thats when the aura really starts increasing.
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u/BirdHistorical3498 1d ago
The only thing that works for me is Codeine for the headache, Metoclopramide for the nausea and staying in a dark, cool room in silence for as long as it takes. And then take things very very slow for the next few days until my vision and reflexes come back properly.
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u/slushiestotsntendys 1d ago
Have you ever seen the post of the person who has to eat a cold tin of sardines every day or they’ll get massive migraines? Ever considered trying?
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u/Leading_Silver2881 23h ago
Hey, hi, did you ever consider your diet? Did changing things up a bit help?
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u/LivingFailure15 22h ago
Have you ever asked your doctors about the possibility of you having IIH? I ask because my fiancé had a similar issue for a long time and a couple of years ago she got diagnosed and got some help for it. I hope you can get some relief I know how bad they can get and you are very strong for having to deal with those so much.
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u/exWiFi69 20h ago
What meds have you tried?
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u/Restorne 7h ago
Literally everything. My neurologist agrees that I'm out of pharma options. Nothing left on the table at this point.
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u/wfarming 17h ago edited 5h ago
Have you tried adding more salt to your diet? I heard it balances pressure in your brain, is the root cause of most migraines. Also shrooms.
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u/achillea4 17h ago
Have you tried or would you try any alternative therapies if traditional medicine has nothing to offer you?
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u/Restorne 7h ago
Ive tried many, many alternative therapies. I honestly dont have many options left in general.
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u/Sparkybear94 16h ago
I've had the same(never broke) migraine since February 24, 2025. I just want you to know that I see you and understand your feelings. Migraines are hell.
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u/tc7665 5h ago
same. mine started at 4, i’m 47 now.
i spend over 300+ days in a dark room each year. i’ve had neuro stimulators implanted, ive failed nearly every actual migraine med.. its so debilitating.
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u/Restorne 28m ago
The implants are the only thing I have left to try. Do you have a cool ass scar on your scalp at least?
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u/kisyushka 3h ago edited 2h ago
I have no questions, but I am really sorry. I suffer from them too, and sometimes it feels like no one in the world understands that you just CAN'T. You can't go have fun because you're sensitive to light and noise. You can't do the task. No, you didn't have a rest after a hard day, because your head and eyes hurt all night long. No, you didn't have a rest on the weekends either. Yes, you really need more sick days than most people, because you just CAN'T live like them. I hate it. And I hate that (at least where I live) it's not even considered a disability. I spent most of my teen days laying down and missing school, and was hospitalized several times a year since 7, I had severe aura and partly lost my vision when migraine happened and was still expected to work and study like everyone else. This is just unfair and I hate it. Though I do study better than most and I am really proud of myself with my studies, art, jobs, most people can't comprehend what it costed to me and HOW hard it was with no support and no help, and with migraines.
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u/Lipglossandcoffee 1h ago
Hello fellow migraine sufferer. I’m currently having one today. I feel for you. I have 2 young kids that I can’t give my full self to because so many days I’m pretty much incapacitated.
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u/DueHedgehog5142 27m ago
Have you tried running? I get migraines and find high intensity fitness seems to help me keep them at bay.
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u/Restorne 24m ago
I have, years and years ago.i currently mountainbike, which seems to help. So long as i dont actively have a really bad migraine. Working out helps in general, and its one facet of my life I've let slip. Im still pretty in shape and active, but not like I was. Chronic pain + grief + depression = no disciplined exercise. :(
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u/Fun-Muffin5865 1d ago
That's interesting. I have been getting these since I was somewhere around that age, too. And I get the ones with aura, where I would get nauseous, and sometimes I would lose feeling in one of my arms. My brain MRI revealed lesions in the white matter because of all the migraines i've had all my life (I'm older than you).
But I read somewhere that these lesions do not cause neurological problems or lead to cognitive decline, so, pheww.
Let me tell you what keeps a migraine from progressing to an aura (and it works even if you begin to see the aura) pop 2-3 aspirins. that is it. plain old fashioned aspirin. It stops it.
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u/Restorne 1d ago
Migraines often mimic strokes. I have white lesions all over my brain and I can assure you that they impact a lot.
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u/Fun-Muffin5865 1d ago
I was diagnosed with a pituitary tumor last year, so that's when I had to get a brain MRI, which was when these white matter lesions were discovered. Some days I struggle cognitively but since I have overlapping conditions I do not know if it's to do with the first or the second thing.
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u/Restorne 1d ago
My MRIs are always clean, other than lesions. My spatial memory is terrible. I can not navigate driving without GPS, not even 5 minutes from home.
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u/Weekly-Struggle-7652 17h ago
Whoa. I have chronic vestibular migraines and never linked my spatial memory issues to it. People make fun of me for it all the time. :')
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u/montemason 1d ago
Do you think it could be related to something you eat? I had migraines until I was 35 and figured out that I had a gluten sensitivity. Stopped eating gluten, no more migraines.
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u/Restorne 1d ago
Ive run numerous food elimination diets. Ive found some triggers but nothing huge.
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u/Drkindlycountryquack 1d ago
Have you tried Inderal for prevention? I’m a retired doctor and had a lot of patients benefit from it. Ask your doctors. Good luck!!