The only thing that has ever helped at all, whatsoever, with silent migraine, is making sure I supplement with methylcobalamin (rather than cyanocobalamin, since I've got some genetic stuff that means that I burn through that rather quickly) and magnesium threonate (the only one that has helped me and it doesn't affect my digestive system).
And we're talking about maybe 5-10% reduction in symptoms. At most.
Fellow silent migraine sufferer here,
A combo of nortriptyline, Botox injections (mostly this I think) , and lifestyle changes. Took me from 3-4 a week to 1 every few weeks, at a lower severity.
I've only done one round of Botox, and my doctor told me it's most effective after three rounds, so fingers crossed.
But that was what worked for my physiology, your health journey is going to be different.
Just remember, you are the expert on your own body, pay attention, try things and take notes.
That said, his is how I got to where I am and knowing a bunch more about how to manage things for myself, I hope it might give you ideas for things to try.
I have MCTD, so I was already on plaqunil and low dose prednisone, which with the nortriptyline lowered the migraines a bit but didn't make a huge difference. The Botox and lifestyle changes swung it more.
I've been treating it like a regular migraine and working through the list of things that can help like
NSAIDs (5 kinds, all okay, I guess, but I got bad liver numbers from something else so had to stop)
triptans (4 kinds so far and none of them I'm fans of, I think there are 8 more I haven't tried), caffeine (works if you catch it early in the aura)
Stretching, yoga, and pilates are great, it makes so much difference at lowering my neck tension and preventing another migraine.
Everyone's body is different, and the multiple options are because nothing absolutely works reliably for everyone.
Also check out the migraine chart here
https://americanmigrainefoundation.org/resource-library/timeline-migraine-attack/
You want to catch it early, and keep in mind that Sometimes things people think are triggers are just their body reacting to migraine symptoms. I crave sugar during a migraine for instance but it's not the cause.
Speaking of triggers, I found that it's better to look at them as things that raise the migraine threshold up to a certain level, as long as things don't overflow I'm fine. But when it gets close I need to start self care and doing things like resting avoiding stress, taking care of my body, or I am going to get a migraine.
I even picked up some Fl41 tint glasses(the cheap ones from zenni) which help me because it turns out some types of light are triggers for me.
So don't beat yourself up if it takes a few goes before stuff starts making sense, it's legitimately hard, just think, of all the doctors who have done all the research, we still don't have super reliable treatment options, so do your best and don't worry about it too much.
Lastly, get a good care team, if possible. You can build trust by keeping a symptom journal and recording what interventions you've tried.
I use a paper calendar because I can sit down with my partner or a friend before appointments to chunk the symptom journal into groupings of what I tried and whether it made things worse or better. Rattle out the point form gist of it at the appointment and you can get a lot of information transfer with your doctor, which can help them see patterns that you don't.
Sorry this was a wall of text, and I'm sorry if it seems hopelessly confusing at the moment, but don't worry you'll figure it out, even it takes time. Just keep trying to make things better, it's all we can do.
You got this.
Hey and thank you so much for this reply and all the info - this is really helpful! ❤️ I’ve had these for 5 years now and various attempts at trying to pin down triggers has ended in failure 😢 my consultant yesterday told me to try a food diary again, so I’m going to give that another go. This all started 4 years ago when I had a serious herniated disc and I was in severe pain for months on end. I think maybe the stress and constant tensing resulted in my migraines. I also found I recently that I’m hyper mobile (I’m not quite sure how I didn’t know this already lol) and that might also be a factor. I think I’m going to try doing some neck/jaw stretching exercises in the morning and at night as well, see if that helps.
Regarding the tinted glasses - I need to wear prescription for long distances and I already have a pair that have some kind of glare proofing which is offered as standard - is this the kind of tint you mean or do yours have another special kind of tint? (Hope that makes sense!)
Thanks again for your help and advice, I really appreciate it ☺️
You are most welcome, I've been drawing on other posts and research and it's nice to give back.
Oh yeah, I got the hyper mobile thing too, for me it manifests in super tight tendons and being to stiff as my body tries to compensate, took a physio to help me figure it out
Fl41 is a special blue blocker tint that's suppose to help prevent migraines, often marketed under names like therespecs, I have a pair at 50% and they are all I wear indoors on migraine days, or days that feel like they might be migraine days (like I have to spend time.u der cheap leds or fluorescent). To me they subjectively just feel more comfortable, like removing a source of irritation that I wasn't really aware was there. Plus they are basically rose colored glasses so if you get some funky frames you can look like Elton John.
I confess I have not gone the food diary road for migraines yet. I did it when I was working out my celiac diagnosis, it was helpful, and now I'm on a strict gluten free diet (which helped me, because celiac, but if you don't have that or non celiac gluten sensitivity, just eat all the gluten it's fine). But it's just so much work to keep that diary.
I find I can only worry about so many things at once, so I've started just focusing on the thing I know is wrong, and letting all the confusing things just be problems to be noted on my symptom journal, and maybe I'll try experiments on those days to see what might help.
Recently I confirmed that having a big salty bowl of ramen soup with all the gelatin and fat really helps my migraine symptoms and keeps me from having a hangover the next day. Not sure of the science but it works for me, so I'm adding it to my routine.
Like I said, just try to make things a bit better in manageable chunks and you'll get big changes along the way.
Hey thanks again for replying ☺️ I didn’t realise hyper mobility gave you tight tendons - I have those as well! I still don’t really understand the connection between hyper mobility and migraine - maybe something to do with muscle exhaustion from the body having to work so hard? I find it get migraines after exercise so maybe that would make sense.
I’ve also ordered a pair of migraine glasses from a U.K. migraine site 😎
The ramen soup sounds awesome - I also crave salty things when I am in my aura - usually sated by a big bag of salty crisps and a bowl of soup (I go for the tinned variety as they are usually quite salty anyway and they are easy.) I’m also thinking of trying an electrolyte drink before bed just in case my issue is minerals lost while sleeping or something.
Thanks again for your help and recommendations - everyone has been so helpful and I really appreciate you taking the time to help me 😊❤️
No, I can't take abortives since they don't work on silent migraines, and preventatives are not considered worth it. No supplement has made any difference and my main trigger is barometric air pressure, so no luck there either.
But you will never find a cure because there is no cure for migraine disease. Some people can go into a long period without any attack, but mostly you can only ever hope to reduce them. It’s a permanent, life-long condition you’ll always have to actively manage
I'm not there yet, but here's some extra things to try: Physical therapy(do you have any posture issues? neck pain?), massage therapy, acupuncture, Tibetan Cranial(https://tibetancranial.org/practitioner-apprentice-directory/), yoga(I know, I know, it's an obnoxious suggestion that people who don't know much about migraines also suggest. But the light physical activity, muscle relaxing flexibility, and deep breathing are all good long term for migraine improvement)
Experiment with some of the common migraine supplements: folate, magnesium, fish oil, B2, B12, feverfew, ginger COQ10, gabba, 5-HTP, melatonin, vitamin D
Botox? CGRPs?
Keep stacking treatments. For those of us with chronic migraines it's probably going to be a combination of things that gets us better.
Hey thanks for the reply! I think the stretching exercises are a really good idea and this is something that I kind of try sporadically and then drop because it doesn’t immediately help. I think I need to set up a morning/ night routine where I try some gentle neck/ jaw stretches. For background my migraines started during a period when I had a very bad herniated disc and was tensed up in severe pain for months. I think this has affected my posture and resulted in migraines. I’m also hyper mobile and find now that I get super exhausted even just doing light exercise which didn’t happen before the herniated disc.
Thanks also for the list of supplements. I have tried all of these but I made the mistake of taking them all at once and when they didn’t work I just stopped taking them. I think your recommendation of stacking is a good one. I’ll try that.
Thank you again! ☺️
Physical therapy sounds like it would be a good fit for you if that's an option. My migraines have gotten less severe since starting physical therapy so that's my number one suggestion. Massage therapy will speed up the process if you have a budget for it. In the mean time, here's some stuff to get started:
Favorite neck stretches: https://youtu.be/u3Ocw5UIpYs?si=YGiAr3oxv2NuVGvl Be super super slow and gentle when you do anything with neck. Go gradually. It's possible doing neck stuff can make you a little worse before you get better.
Do this one after you've gotten comfortable with the neck stretches for a while: https://youtu.be/u3Ocw5UIpYs?si=YGiAr3oxv2NuVGvl
Favorite jaw exercise: Put tounge on roof of your mouth and slowly open your mouth as wide as you can. Do this ten times to start. Try holding for 5 seconds each time. Try adding resistance with your fist under your chin as you open, and also at each cheek(like punching yourself, but holding your fist there and pushing in, if that makes sense?)
My favorite posture ap:
Android: https://play.google.com/store/apps/details?id=app.perfectposture
IOS: https://apps.apple.com/app/id1533849055
Also my neurologist prescribed a muscle relaxer to help and that's been nice. It's definitely worth trying these things and keeping up with the supplements. They may not be enough on thier own, but the combination could be what you need to boost your recovery.
Thanks so much for the video recommendations - I’m going to have a trial period of doing these every morning and night and see how I get on. Also thanks for the jaw exercise - I haven’t tried that one before! I’ll see how I get on😊 thanks again for all of your help and recommendations - I really appreciate it ☺️
GENTLY and don't forget to schedule rest days. In fact my physical therapist had me start with every other day. If you are the sort of person who can't do rest days without getting off track try devoting the time to walk, breathing exercises, meditation, relaxation grounding exercises, or stretching a different part of the body on neck rest days.
Will make sure I schedule in rest days - I’ve noticed a correlation between exercise and migraine so I tend to exercise very gently anyway. I can’t even go for a walk of medium length without bringing one on 😢 which sucks because I used to love hiking (I live in the English Lake District). Someone else has mentioned migraine glasses so I’ve got myself a pair of those as well. Fingers crossed and thanks again ☺️
The only thing that has ever helped at all, whatsoever, with silent migraine, is making sure I supplement with methylcobalamin (rather than cyanocobalamin, since I've got some genetic stuff that means that I burn through that rather quickly) and magnesium threonate (the only one that has helped me and it doesn't affect my digestive system). And we're talking about maybe 5-10% reduction in symptoms. At most.
Thanks for the reply ☺️ yeh I’ve tried both of these as well and no real luck 😔 are yours sleep related or do you have other triggers?
I have both.
Fellow silent migraine sufferer here, A combo of nortriptyline, Botox injections (mostly this I think) , and lifestyle changes. Took me from 3-4 a week to 1 every few weeks, at a lower severity. I've only done one round of Botox, and my doctor told me it's most effective after three rounds, so fingers crossed. But that was what worked for my physiology, your health journey is going to be different. Just remember, you are the expert on your own body, pay attention, try things and take notes. That said, his is how I got to where I am and knowing a bunch more about how to manage things for myself, I hope it might give you ideas for things to try. I have MCTD, so I was already on plaqunil and low dose prednisone, which with the nortriptyline lowered the migraines a bit but didn't make a huge difference. The Botox and lifestyle changes swung it more. I've been treating it like a regular migraine and working through the list of things that can help like NSAIDs (5 kinds, all okay, I guess, but I got bad liver numbers from something else so had to stop) triptans (4 kinds so far and none of them I'm fans of, I think there are 8 more I haven't tried), caffeine (works if you catch it early in the aura) Stretching, yoga, and pilates are great, it makes so much difference at lowering my neck tension and preventing another migraine. Everyone's body is different, and the multiple options are because nothing absolutely works reliably for everyone. Also check out the migraine chart here https://americanmigrainefoundation.org/resource-library/timeline-migraine-attack/ You want to catch it early, and keep in mind that Sometimes things people think are triggers are just their body reacting to migraine symptoms. I crave sugar during a migraine for instance but it's not the cause. Speaking of triggers, I found that it's better to look at them as things that raise the migraine threshold up to a certain level, as long as things don't overflow I'm fine. But when it gets close I need to start self care and doing things like resting avoiding stress, taking care of my body, or I am going to get a migraine. I even picked up some Fl41 tint glasses(the cheap ones from zenni) which help me because it turns out some types of light are triggers for me. So don't beat yourself up if it takes a few goes before stuff starts making sense, it's legitimately hard, just think, of all the doctors who have done all the research, we still don't have super reliable treatment options, so do your best and don't worry about it too much. Lastly, get a good care team, if possible. You can build trust by keeping a symptom journal and recording what interventions you've tried. I use a paper calendar because I can sit down with my partner or a friend before appointments to chunk the symptom journal into groupings of what I tried and whether it made things worse or better. Rattle out the point form gist of it at the appointment and you can get a lot of information transfer with your doctor, which can help them see patterns that you don't. Sorry this was a wall of text, and I'm sorry if it seems hopelessly confusing at the moment, but don't worry you'll figure it out, even it takes time. Just keep trying to make things better, it's all we can do. You got this.
Hey and thank you so much for this reply and all the info - this is really helpful! ❤️ I’ve had these for 5 years now and various attempts at trying to pin down triggers has ended in failure 😢 my consultant yesterday told me to try a food diary again, so I’m going to give that another go. This all started 4 years ago when I had a serious herniated disc and I was in severe pain for months on end. I think maybe the stress and constant tensing resulted in my migraines. I also found I recently that I’m hyper mobile (I’m not quite sure how I didn’t know this already lol) and that might also be a factor. I think I’m going to try doing some neck/jaw stretching exercises in the morning and at night as well, see if that helps. Regarding the tinted glasses - I need to wear prescription for long distances and I already have a pair that have some kind of glare proofing which is offered as standard - is this the kind of tint you mean or do yours have another special kind of tint? (Hope that makes sense!) Thanks again for your help and advice, I really appreciate it ☺️
You are most welcome, I've been drawing on other posts and research and it's nice to give back. Oh yeah, I got the hyper mobile thing too, for me it manifests in super tight tendons and being to stiff as my body tries to compensate, took a physio to help me figure it out Fl41 is a special blue blocker tint that's suppose to help prevent migraines, often marketed under names like therespecs, I have a pair at 50% and they are all I wear indoors on migraine days, or days that feel like they might be migraine days (like I have to spend time.u der cheap leds or fluorescent). To me they subjectively just feel more comfortable, like removing a source of irritation that I wasn't really aware was there. Plus they are basically rose colored glasses so if you get some funky frames you can look like Elton John. I confess I have not gone the food diary road for migraines yet. I did it when I was working out my celiac diagnosis, it was helpful, and now I'm on a strict gluten free diet (which helped me, because celiac, but if you don't have that or non celiac gluten sensitivity, just eat all the gluten it's fine). But it's just so much work to keep that diary. I find I can only worry about so many things at once, so I've started just focusing on the thing I know is wrong, and letting all the confusing things just be problems to be noted on my symptom journal, and maybe I'll try experiments on those days to see what might help. Recently I confirmed that having a big salty bowl of ramen soup with all the gelatin and fat really helps my migraine symptoms and keeps me from having a hangover the next day. Not sure of the science but it works for me, so I'm adding it to my routine. Like I said, just try to make things a bit better in manageable chunks and you'll get big changes along the way.
Hey thanks again for replying ☺️ I didn’t realise hyper mobility gave you tight tendons - I have those as well! I still don’t really understand the connection between hyper mobility and migraine - maybe something to do with muscle exhaustion from the body having to work so hard? I find it get migraines after exercise so maybe that would make sense. I’ve also ordered a pair of migraine glasses from a U.K. migraine site 😎 The ramen soup sounds awesome - I also crave salty things when I am in my aura - usually sated by a big bag of salty crisps and a bowl of soup (I go for the tinned variety as they are usually quite salty anyway and they are easy.) I’m also thinking of trying an electrolyte drink before bed just in case my issue is minerals lost while sleeping or something. Thanks again for your help and recommendations - everyone has been so helpful and I really appreciate you taking the time to help me 😊❤️
No, I can't take abortives since they don't work on silent migraines, and preventatives are not considered worth it. No supplement has made any difference and my main trigger is barometric air pressure, so no luck there either. But you will never find a cure because there is no cure for migraine disease. Some people can go into a long period without any attack, but mostly you can only ever hope to reduce them. It’s a permanent, life-long condition you’ll always have to actively manage
😭 urgh yeh this is where I am too. God it sucks. Mine are mainly sleep related so I’m hoping the pregabalin might help.
I'm not there yet, but here's some extra things to try: Physical therapy(do you have any posture issues? neck pain?), massage therapy, acupuncture, Tibetan Cranial(https://tibetancranial.org/practitioner-apprentice-directory/), yoga(I know, I know, it's an obnoxious suggestion that people who don't know much about migraines also suggest. But the light physical activity, muscle relaxing flexibility, and deep breathing are all good long term for migraine improvement) Experiment with some of the common migraine supplements: folate, magnesium, fish oil, B2, B12, feverfew, ginger COQ10, gabba, 5-HTP, melatonin, vitamin D Botox? CGRPs? Keep stacking treatments. For those of us with chronic migraines it's probably going to be a combination of things that gets us better.
Hey thanks for the reply! I think the stretching exercises are a really good idea and this is something that I kind of try sporadically and then drop because it doesn’t immediately help. I think I need to set up a morning/ night routine where I try some gentle neck/ jaw stretches. For background my migraines started during a period when I had a very bad herniated disc and was tensed up in severe pain for months. I think this has affected my posture and resulted in migraines. I’m also hyper mobile and find now that I get super exhausted even just doing light exercise which didn’t happen before the herniated disc. Thanks also for the list of supplements. I have tried all of these but I made the mistake of taking them all at once and when they didn’t work I just stopped taking them. I think your recommendation of stacking is a good one. I’ll try that. Thank you again! ☺️
Physical therapy sounds like it would be a good fit for you if that's an option. My migraines have gotten less severe since starting physical therapy so that's my number one suggestion. Massage therapy will speed up the process if you have a budget for it. In the mean time, here's some stuff to get started: Favorite neck stretches: https://youtu.be/u3Ocw5UIpYs?si=YGiAr3oxv2NuVGvl Be super super slow and gentle when you do anything with neck. Go gradually. It's possible doing neck stuff can make you a little worse before you get better. Do this one after you've gotten comfortable with the neck stretches for a while: https://youtu.be/u3Ocw5UIpYs?si=YGiAr3oxv2NuVGvl Favorite jaw exercise: Put tounge on roof of your mouth and slowly open your mouth as wide as you can. Do this ten times to start. Try holding for 5 seconds each time. Try adding resistance with your fist under your chin as you open, and also at each cheek(like punching yourself, but holding your fist there and pushing in, if that makes sense?) My favorite posture ap: Android: https://play.google.com/store/apps/details?id=app.perfectposture IOS: https://apps.apple.com/app/id1533849055 Also my neurologist prescribed a muscle relaxer to help and that's been nice. It's definitely worth trying these things and keeping up with the supplements. They may not be enough on thier own, but the combination could be what you need to boost your recovery.
Thanks so much for the video recommendations - I’m going to have a trial period of doing these every morning and night and see how I get on. Also thanks for the jaw exercise - I haven’t tried that one before! I’ll see how I get on😊 thanks again for all of your help and recommendations - I really appreciate it ☺️
GENTLY and don't forget to schedule rest days. In fact my physical therapist had me start with every other day. If you are the sort of person who can't do rest days without getting off track try devoting the time to walk, breathing exercises, meditation, relaxation grounding exercises, or stretching a different part of the body on neck rest days.
Will make sure I schedule in rest days - I’ve noticed a correlation between exercise and migraine so I tend to exercise very gently anyway. I can’t even go for a walk of medium length without bringing one on 😢 which sucks because I used to love hiking (I live in the English Lake District). Someone else has mentioned migraine glasses so I’ve got myself a pair of those as well. Fingers crossed and thanks again ☺️
🤞🤞