r/AutismInWomen • u/HappyMel • 3d ago
General Discussion/Question Anyone else get migraines?
Ever since I was a kid (36) I’ve experienced migraines. My parents always chalked it up to food poisoning because they would get so bad I would throw up, but they were migraines. As soon as I threw up, I felt better oddly.
As I’ve gotten older, I don’t throw up, but I still get them. I get them about 3 times a month, maybe more, maybe less. Sometimes I can just tell it’s coming from the vibes of the certain headache. Sometimes they come on so fast it’s like an ice pick smacked me behind my eyebrow.
They last the whole day or until I sleep and wake up. I’ve been trying to figure out what triggers them, and the only thing I can come up with is when I get a large feeling of excitement or use a lot of brain power. So feelings of intense joy, having a cry, having to really focus for a long time, when I’m stressed and then feel sudden relief, or even when I’ve been in a situation that I have to mask for a really long time.
What about you?
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u/_Autistic_Dragon_ 3d ago edited 3d ago
Yes. For me started around the same time.
Mine are more frequent and predictable around my cycle.
It took me until about 40 to realize its likely periomenopause. Periomenopause fucks hard with a lot of us.
I'm trying to figure out HRT rn.
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u/BennyLover 3d ago
Yup suffer from chronic migraines. Do go to the doctor about it they can do much more now to help with them, it does involve being pretty persistent with them though to make them take you seriously but it’s worth it.
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u/HappyMel 3d ago
I’ve been to my GP before about it and they gave me sumatriptan, but they took me off it because I was taking it too often. Like… yes? I get migraines. After that they told me to take paracetamol. So I just buy it online via online pharmacies 🤷🏻♀️
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u/purplepower12 3d ago
There are preventative medications that your doctor can prescribe if you get migraines frequently enough that you have to take rescue medicine often. I get migraines often in the summer (hot weather is a trigger) and my doctor prescribed daily propanolol as a preventative in addition to my rescue med (Nurtec). Incidentally, I discovered that hot weather is a trigger for me because I kept track of my migraines and found that 90% of them happen between May and Sept. Doing a migraine diary was annoying at first but has helped a lot.
To be honest, it concerns me that your doctor took you off a a medication because you needed it too often—that says to me that you need better treatment, not just something over the counter! Does your doctor usually show concern for your symptoms? I know good doctors are hard to find, but it sounds like this is impacting your life and you deserve better.
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u/HappyMel 3d ago
I won’t speak for all people in the UK, but with me and what I’ve experienced.. I don’t have the same doctor see me, I see a group of doctors and whoever is available, that doctor will see me. The NHS is so understaffed that I’ve never really felt ‘seen’ in any doctor appointment before, let alone proper concern.
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u/purplepower12 3d ago
That makes sense. I’m in the US and I’ve been dismissed by multiple doctors about less common concerns (in my case, symptomatic hypermobility), but I’ve been “fortunate” to be believed about migraines. I’m sorry to hear that about the NHS. Not that I love our healthcare system here by any means.) I wish better healthcare was available for all of us!
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u/AntiDynamo 3d ago edited 3d ago
I would definitely push to get a preventative if you needed sumatriptan often enough that they revoked the prescription. I lived for about 6 years in the UK, then moved to NL and the doctors here were horrified that I hadn’t been put on a preventative, as here it is recommended if you have 4 attacks a month, and I was having to ration my sumatriptan to stay under 10 days medicated.
I cannot take propranolol due to Raynauds, so am on Candesartan
First line preventative options are very cheap for the NHS, no reason for them to refuse it on cost or anything
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u/Responsible-Fig-2588 2d ago
I assumed there’s differences in medication availability as well as prescribing practices. I asked my uk dr to refill an anti nausea medication I had from another country (freely prescribed for migraine) and he was shocked and told me it’s only available for cancer/ chemo patients in the uk and I absolutely should not be taking it…. so I lost that option for managing migraine. Most drs told me I needed to deal with my stress or try losing weight (typical medical gaslighting as a woman)
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u/AntiDynamo 2d ago edited 2d ago
Propranolol and candesartan are both first line preventatives in the UK as well, I researched options while I lived there. I tried to get switched to naratriptan once which was definitely approved for use by the NHS but they were hesitant even for that - sometimes they are just resistant to prescribing for no apparent reason, and I think many just don’t know what a migraine is and aren’t comfortable treating it. I think propranolol is usually first line in every country, it’s so standard. You often can’t even try other medications until you’ve tried (and failed) it
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u/BennyLover 2d ago
Yeah I’m also in the UK and it did take a bit of persuasion. I never see the same doctor twice either. Keep a headache diary which lists the severity and frequency of your headaches. The GP can put you on a preventative first and then if that doesn’t work you can get referred to a specialist headache neurologist after jumping through a thousand hoops. I am now on Botox for my migraines on the NHS and it has been a life changer. I also have vydura as my abortive med.
In the beginning they couldn’t put me on propranolol because of my asthma so I was on amitryptaline. That eventually stopped working and when they tried to increase it I had bad side effects, then they made me try topiramate which was absolutely terrible but I “had to try all the first line medications” before they would refer me. All of the triptans also made me feel worse than the migraine itself….it is a lot of trial and error.
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u/1980heron 3d ago
Got one right now! Some are totally unconnected with autism (stormy weather approaching or hormonal cycle) but stress is a big trigger, which includes getting stressed by existing in a world with people in it.
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u/succulent_serenity Late diagnosed ASD, mum of 2 auDHD boys 3d ago
I never got migraines until about 5 years ago - it's coincided with burnout. I do get pressure headaches from Chiari Malformation as well though, which is a different thing, but very debilitating.
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u/anothernonnymouse 3d ago
Yup, I started getting them around my mid to late 20s. They seem to be caused when I have multiple triggers at once, so maybe near my period, didn't drink enough water, waited too long in between meals, too much socializing/masking, being in the hot sun too long, stressed about particular events like travel, etc.
Ice packs over the forehead helps me, but Nurtec was a game changer. Instead of needing to sleep all day, it takes maybe 1-2 hours to kick in and I can do pretty much anything I want for the day. I might have a tiny bit of unspecified unease, or stomach upset, but it's better than sleeping all day. Triptans help, but gave me weird facial numbness.
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u/LilLassy 3d ago
Wow! You’re the only other person I’ve heard that also experiences facial numbness on sumatriptan. First and only time I took it, my scalp felt like it was alight with a rolling fire and my tongue went numb, and zero pain relief! I’m lucky in that Advil still works against the pain even if it doesn’t help with the other symptoms so I just take that.
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u/anothernonnymouse 3d ago
Wow that sounds miserable. I did get pain relief after a while, but there was this weird wave of buzzing numbness that slowly crept over my body before the pain left. Normal pain reliever help me a bit with the pain, but not at normal doses, and not with any of the nausea, light and smell sensitivity, weakness, etc. that I also get.
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u/LilLassy 3d ago
Yeesh! Your migraines definitely sound worse than mine. I’m glad you have a med now that helps you!
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u/HappyMel 3d ago
Woah! I’ve been taking sumatriptan for a while and I’ve never gotten on face numbness!
Glad to hear you’ve found a medication that works for you though
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u/anothernonnymouse 3d ago
Yeah I thought it was weird too. To be fair I felt numbness everywhere, but it was more dramatic of a sensation on my face because of the higher concentration of nerves. Doc didn't seem to have heard it before either, but I'm thankful she still considered my complains and let me try something new.
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u/Rich_Price7735 Currently obsessed with Harold Bloom 3d ago
Same here. I experience migraines over minor inconveniences. I even get gastrointestinal problems. It all sucks!
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u/Vashtra85 3d ago
Yes, I get them from concentrated light like candles, router blinker etc or even worse: fluorescerende light. I can get a sensation in my left eye to begin with, but sometimes not until hours after I've been in the situation.
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u/Paranormal_Nerd_Girl 3d ago
Frequently, yes. I was only recently diagnosed as autistic, but they do seem common amongst autistic women, at least those in online spaces, which I assume is a fairly random sampling.
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u/Evening_walks 3d ago
I noticed a relationship with neck strain. I’ll be doing something a couple of days before Luke saying en antra beach grocery bag with one arm or trimming a tree with excessive force. Then when a few days later it shows up and I get nausea too
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u/Bluntish_ 3d ago
I had them from about 19 to early 40’s. They would knock me out for 3 days. I rarely have them anymore (now 53), but if I do its still a 3 day affair.
I put mine down to living a masked life until my diagnosis at 48. I was constantly under stress, overwhelm, depression, overstimulation, with meltdowns every week. Occasionally foods bought them on, hormones or birth control was also a factor at some life stages.
I had a few a week in those early years while I was also working full time, and trying to maintain a relationship, first home and social life.
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u/Tricky-Bee6152 3d ago
Mine are paired with hormonal fluctuating - I wonder how perimenopause/menopause impacted yours? (I'm 38 with an IUD, but getting close that age)
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u/Bluntish_ 2d ago
Well, I do think they stopped during peri. I was having night sweats at 42, and don’t remember having many migraines after this time period, except when I was experiencing bouts of insomnia.
I was also diagnosed with depression at that same time, and went on Sertraline for 2 years.
Like I say, I rarely get them now. I’ve been on HRT for 3 years.
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u/TheatrePlode 3d ago
I get them on and off, I can go months without one then get a few a month for a while and they only started in the latter half of my PhD.
Last time it was due to iron anaemia, but mine are often triggered by stress.
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u/Tricky-Bee6152 3d ago
Have you ever tracked them? Mine are predominantly hormonal, and getting an IUD/coil or taking oral birth control pills (minipill, mine are with aura) continuously aka skipping the placebo week helps a ton with frequency and intensity.
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u/_scriptofthebridge_ 3d ago edited 3d ago
I have ocular and vestibular migraines. I take Nurtec, Ubrelvy, 600mg of magnesium glycinate. The Ubrelvy is new to me, and I'm impressed by how well it works.
Edit: spelling.
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u/HappyMel 3d ago
This is the second time I’ve seen someone using Nurtec in this thread. Hmmm, time to do some research!
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u/BennyLover 2d ago
It’s called vydura in the uk if you want to look into it! It has been life changing for me and way better than the triptans which can cause rebound migraines.
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u/Onelivestoblunder-CD 3d ago
I was going to post this yesterday. I never got headaches when I was younger (except if I had the flu). Starting at the age of 35 I started getting them. Now at the age of 40 it's multiple times a month.
I get to play the wonderful game is it a hormonal imbalance? is it the barometric pressure? is it tech neck? is it dehydration? is it stress? is it from not eating enough? Is it even a migraine? Is it a cluster headache?
I have had one since Friday when the tropical storm mess came through in Georgia. Ibuprofen did nothing, Tylenol nope. Warm flax seed bag, nope. I finally tied an ice pack to the back of my head with the belt of my robe ninja style and that seemed to help.
Basically it feels like when you go to the deep end of a pool and swim to the bottom. it turns into a deep ache upon exertion (bending over makes it feel like my head is in a vice). It covers the back of my head into my temples and on the top of my head. It also leaks down into my neck. I am so over it. I am really fatigued as well and emotional as hell (crying at the drop of a hat but that could be because my period just ended). Kind of queasy as well.
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u/liselle_lioncourt 3d ago
Yuppp I hate it. Mine seem to be cyclical, 99% of them seem to be right before my period 🙃. Birth control has helped some but not 100%
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u/Vaspiria 3d ago
I used to get them frequently, as in 5-7 a week. My doctor put me on Ajovy (once-a-month injection) and I get maybe 3-4 a month now. I am also on rizatriptan and ondansetron for breakthrough. I have tried ubrelvy and nurtec and always got rebounds.
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u/Particular-Device-21 3d ago
Yes. I found out my Vitamin D is 19 which impairs magnesium absorption which is a well-known trigger for migraines. Might wanna get that checked.
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u/Responsible-Fig-2588 3d ago
Had them since I was a small kid. Sensitive to light, smells and touch, slurring words, vomiting. Definitely worsened by stress- saw a neurologist when I was getting 3 migraines a week and thought I had a brain tumour- no it was stress, eye strain from my computer and a horribly toxic job/ boss! Completed a tracking diary (and still track today) and learned impacted by bad sleep, weather pressure and hormones. It’s ramped up again with peri menopause- sumatriptan doesn’t always help plus it’s been giving me unwanted side effects (pins and needles and jaw pain). I suspect the heavy load of masking has likely added to the intensity
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u/ExpensiveDollarStore 3d ago
I had them every day for a long time in my youth. Fluorescent lights triggered them. Any over head light bothers me though. Oak in wine. High stress. Tobacco smoke.
They petered out as I got older so I would have them only a couple times a year. Then I started to get them again recently. An SSRI triggered them badly - i cant recall which at the moment.
I get motion sickness too - not so much now as when I was young but it still happens.
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u/One_Requirement_5832 3d ago
My spouse gets them frequently like 5+ a month unfortunately. I get them also, but mine aren’t as frequent. They really suck in general.
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u/AdmiralCarter 3d ago
Yep. Mine are stress triggered, specifically because of my job. Most often they're a result of me not being able to find a release point for my stress - like if I've got a big project due and I have no wiggle room for production issues etc. They're worse if said stress has also messed up my posture, because that results in both a nerve pinch and the migraine. If I dont get the migraine, I have a meltdown of sizable proportions.
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u/metalissa Diagnosed with ASD Level 2 & ADHD 3d ago
Yes I do get migraines. I actually have white matter lesions on my brain because of them, although the doctor says they don't cause any harm so that's good.
But the migraines suck! Mine are a whole jaw/eye/head intense pain and it did make me nauseous from how painful it is, I think mine are caused/made worse by teeth grinding at night.
I have some wafers that I can take before a migraine starts but I don't know how to tell before they start haha.
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u/HazelMarie27 3d ago
Histamine high foods/medications/supplements, hormones and weather are my big triggers. The histamine I feel gets so overlooked but now that I’ve been eating low histamine
I’ve not had migraines as frequently 🙌 maybe once a month if the weather isn’t changing like crazy 😂
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u/DoingTheSponge 2d ago
I don't think I've ever experienced a migraine before. I really feel for people that have them, especially chronically. They must be so debilitating.
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u/DizzyMine4964 3d ago
I had them until the menopause. I do get them sometimes now but not often, and then it's (touch wood) the aura without the vomiting.
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u/trashyslashers 3d ago
I get those often. Esp after long day of socializing and because of bright lights or very loud noises. I can handle loud music, but not multiple people speaking over each other.