Migraine Advice

[Hemerocallis]

I would recommend magnesium supplements alongside the prescribed preventative meds. Since I started the supplements last Oct I’ve had far fewer migraines. It might be a placebo but it’s working for me!

For me too, fewer migraines and/or milder ones.

Migraines may vary over the years. I've had a phase with auras (30 min. flickering like old TV and leaving only a small hole in the middle of my field of vision), a time with "just" headaches but no to little nauseas, then strong headaches with nausea and vomiting. Once my husband had to drive me to the emergency. They thought I had a stroke, I told them that it was a migraine.
For the last years, in addition my nose is running, sometimes swollen shut like having a violent cold for ca. 30 min.

Zomig and Zofran didn't work for me. Fortunately Paracetamol does.
Triggers I identified are dehydration and skipping breakfast.

Also had migraines during pregnancies, didn't stop them at all as is always claimed.

Slowly the perception of (people suffering from) migraine is changing, I think.

 

[StrawberryAscot]

Hormonal migraine:

Aside from the pill (there are certain types you can't take if you have migraine) and the injection, does anyone else know what's ok to take? I've been pestering my GP about this for the last month and they've not even discussed it with me.

Struggling so much at the moment. Wasn't too impressed that I've had to beg to come off Pregabalin (it doesn't work and I've needed to come off it for the last 2 months - it was just increased instead) and had to beg to change what I take when I do have migraine. Can't have nasal sprays as I just end up with sinus problems and Sumitriptan just causes Raynaurds. I ahd to do my own research as to what else was out there.

Nothing has been put in place now that I've come off Pregabalin. I was told I should be seen by neurology soon. Unlikely. Still waiting for unrelated referrals that were made in February.

We have a lot in common! I would definitely get an answer from your doctor, but my doctor told me that progesterone-only contraceptives could be used. I tried Pegabalin at one point too, and the side effects were terrible for me. I had no idea it caused Reynauds though. My sinuses won't tolerate nasal sprays either and oral sumitriptan doesn't work on me, so I use the sumatriptan auto-injectors and oral zolmitriptan.

When I could still afford healthcare, they wanted me to try one of those new preventative monthly injections, like Emgality. Never did, but it works for some people.

I don't miss the days of begging for specialty referrals. Don't be afraid to advocate for yourself. I'd be dead if I hadn't done the same. You know more about your health than any one of your doctors. Good luck!

I would recommend magnesium supplements alongside the prescribed preventative meds. Since I started the supplements last Oct I’ve had far fewer migraines. It might be a placebo but it’s working for me!

I highly recommend magnesium too, supplements have helped me with several issues. I also take Epsom salt baths, which help control my muscle pains, and it is the only thing I have found to help restless legs at night.

 

[knivesnflowers]

Hormonal migraine:

Aside from the pill (there are certain types you can't take if you have migraine) and the injection, does anyone else know what's ok to take? I've been pestering my GP about this for the last month and they've not even discussed it with me.

Struggling so much at the moment. Wasn't too impressed that I've had to beg to come off Pregabalin (it doesn't work and I've needed to come off it for the last 2 months - it was just increased instead) and had to beg to change what I take when I do have migraine. Can't have nasal sprays as I just end up with sinus problems and Sumitriptan just causes Raynaurds. I ahd to do my own research as to what else was out there.

Nothing has been put in place now that I've come off Pregabalin. I was told I should be seen by neurology soon. Unlikely. Still waiting for unrelated referrals that were made in February.

your situation sounds kinda similar to me! i have pcos and found my migraines got more severe at certain points in my cycle and were triggered by estrogen. now on desogestrel and was on provera for a bit to help manage period symptoms mainly - they're both progesterone only so fine for me.

i'm on amitriptyline and pregabalin for chronic pain. i haven't found them to have an impact on migraines but was on them before mine started so i dont actually know what i'd be like without them

also started off on sumatriptan and it worked ... but then kinda didn't. i also had sinus issues seperate but the nasal spray antibiotic (?) made my nose so much more sensitive when i did get an attack (have wrote on earlier pages what a typical migraine is like for me - lots of nose burning). i'm now taking naratriptan and it's so much better for me but it doesn't immediately reduce the pain but rather stops it from getting worse and then it'll gradually wear off. i'm still at a fairly early / manageable stage with my pain but hope this helps anyway! i also got a neurology referral a year ago and had a nightmare with them changing pain meds and then not wanting to help with migraines why is why i was sent!

 

[bcfc999]

Was fine going to work yesterday, but once I got there I had aura without migraine which I didn't know was even a thing? That lasted about an hour as I took sumatriptan straight away. I then had an awful headache all day, felt achey all over and really nauseous. Still haven't recovered I'm now out of sumatriptan but apparently I picked some up from the pharmacy last month as my prescription was collected... God knows where they are but I could do with having them to hand.

 

[knivesnflowers]

Was fine going to work yesterday, but once I got there I had aura without migraine which I didn't know was even a thing? That lasted about an hour as I took sumatriptan straight away. I then had an awful headache all day, felt achey all over and really nauseous. Still haven't recovered I'm now out of sumatriptan but apparently I picked some up from the pharmacy last month as my prescription was collected... God knows where they are but I could do with having them to hand.

(still not got my head around what is / isn't an aura tbh) but this is what was happening to me with sumatriptan! sometimes it didn't work at all for migraines but if it did then i'd usually be left with a lingering headache for a few days which would make another migraine a lot easier to trigger as i was already feeling sensitive. i was probably over cautious with the no more than two in 24hrs but that and nothing else working (except now naratriptan) made them really hard to shift

 

[uncleted]

(still not got my head around what is / isn't an aura tbh) but this is what was happening to me with sumatriptan! sometimes it didn't work at all for migraines but if it did then i'd usually be left with a lingering headache for a few days which would make another migraine a lot easier to trigger as i was already feeling sensitive. i was probably over cautious with the no more than two in 24hrs but that and nothing else working (except now naratriptan) made them really hard to shift

I didn’t respond well to any triptans. Sumatriptan sometimes works but not well enough to depend on for me. I’d often get rebound headaches and status migraines (irretractible) when using those. Chest pains as well and just generally a little loopy, the next day I feel stupid almost, I will click around on my computer at work all day without actually doing anything, if makes sense. I have chronic migraine and rarely get auras except when I take a triptan, little dots going around the room like floaters but larger, and some zigzaggy looking sparkles.

 

[bcfc999]

Yes my auras are like @uncleted has described! I've always had them whenever I've had a migraine but usually the headache comes first, then weird hyperawareness of my arms (don't know if this is a common thing cos I know it sounds mad), then fizzy vision that's kind of hard to describe. I've felt a bit stupid all day too, not really able to concentrate.

 

[uncleted]

Yes my auras are like @uncleted has described! I've always had them whenever I've had a migraine but usually the headache comes first, then weird hyperawareness of my arms (don't know if this is a common thing cos I know it sounds mad), then fizzy vision that's kind of hard to describe. I've felt a bit stupid all day too, not really able to concentrate.

Your brain also needs rest and recovery after a migraine, your serotonin and dopamine receptors are going haywire. I get very weird symptoms during prodrome like yawning and stuttering or slurring speech, feeling irritated, sad and anxious. Then the confusion sets in and I’m almost relieved when I get the migraine because I feel like I’m literally going crazy. Sumatriptan made my arms and chest heavy, with tingly fingers and toes. It’s a strange condition for sure

here’s my treatment plan/timeline if anyone’s interested or helps:

2019: start getting what I think are sinus headaches around my eyes and head. Go to an otolaryngologist for possible sinus surgery. I’m also dizzy. She finds no blockages and refers me to a neurologist.
Start triptans and amitryptline. Amitrypline gives me horrible dreams and nightsweats, no relief.

late 2019: move onto topomax (topiramate)my headache days increase from episodic migraine to chronic- 15-20a days per month. Topomax decreases my migraine days but the side effects were too much to tolerate.
move onto 120mg of Propranolol, this works for me but not completely.

2020: finally approved for Botox. Some improvement with propranolol but not enough. While waiting for insurance, I do an elimination diet. In reintroducing gluten, I find that it increases my migraines and the pain severity. I’ve cut this permanently.

2020-21: go through 3 rounds of Botox every 3 months, get my life back. Almost migraine free. Cut the propranolol.

2022: relapse due to insurance and missing 3 Botox treatments. 2 hospital visits due tostatus migraneous. I am admitted to a top headache center now if I need infusions so don’t need to go to ER. And back on track for Botox, back on propranolol and trying monthly injection (Ajovy) to bring me back to baseline.

what works for me:
Botox, Midol (US) and pamprin (US) these are period OTC meds but they work better than NSAIDs for me.
Also when bad vomiting spells occur, I find relief from epsom salt baths and alternating hot and cold water for relief.
I take 500mg of Magnesium Citrate per day. CBD and CBN gummies, some THC edibles help my anxiety during an attack. I also do therapy to manage during the pain; I had a tendency to want to fight it and it made it worse.
I am having a bad cycle right now of status migranous (irretractible migraine) and my neuro gave me olanzepine, an antipsychotic used to slow brain activity in those experiencing mania. It worked! Usually I need a steroid pack and multiple IV treatments to kill an attack this long.

hope this helps x i know this is long but wanted to share what’s worked for me. This disease is truly debilitating and under-researched

 

[knivesnflowers]

definitely get symptoms but it's mainly a lot of pressure in my head i guess? generally feeling tit and then an extension of any of my usual chronic pain / chronic fatigue symptoms. basically an okay day becomes a bad one in the space of minutes / hours and then i'm in bed for x amount of days until the rebound/lingering headache is my new normal and fades (this can take weeks if i'm just generally stressed out, but it's the same feeling as a new attack so i'm always second guessing if it's a fresh cycle or i'm just in a constant state of tensing my face muscles). also sometimes get gastrointestinal pains or cramps etc but the only consistent thing i can think of is the head pressure and then that *is* the migraine i'll experience, just gradually builds to 100% intensity.

the head pressure is a weird one though because it's temples, forehead, eye sockets, nose bridge, jaw, behind my ears when it gets to 100% but i know a migraine is starting bc it feels like i'm clenching, furrowing my brow or focussing my eyes even though i'm not. like i'll stretch my face out, squeeze my eyes open and shut, can feel my skin moving but my bones (this doesn't sound medically accurate but it's beneath the skin) still have the same tension. they almost feel dense? i've described it before as my skin shrinking but it's actually more of the inside pushing out and my skin can't expand.

100000% relate to the brain fog / disconnected feelings, irritability and confusion but again that happens anyway with the pain and cfs so i've never put that down to migraines, v interesting that both could be a factor. i also get yellow spots when looking at stark white sometimes (imagine printer ink splodges on a piece of plastic, like a slightly transparent colour tint) but this isn't when i'm having an attack.

 

[uncleted]

Your brain also needs rest and recovery after a migraine, your serotonin and dopamine receptors are going haywire. I get very weird symptoms during prodrome like yawning and stuttering or slurring speech, feeling irritated, sad and anxious. Then the confusion sets in and I’m almost relieved when I get the migraine because I feel like I’m literally going crazy. Sumatriptan made my arms and chest heavy, with tingly fingers and toes. It’s a strange condition for sure

here’s my treatment plan/timeline if anyone’s interested or helps:

2019: start getting what I think are sinus headaches around my eyes and head. Go to an otolaryngologist for possible sinus surgery. I’m also dizzy. She finds no blockages and refers me to a neurologist.
Start triptans and amitryptline. Amitrypline gives me horrible dreams and nightsweats, no relief.

late 2019: move onto topomax (topiramate)my headache days increase from episodic migraine to chronic- 15-20a days per month. Topomax decreases my migraine days but the side effects were too much to tolerate.
move onto 120mg of Propranolol, this works for me but not completely.

2020: finally approved for Botox. Some improvement with propranolol but not enough. While waiting for insurance, I do an elimination diet. In reintroducing gluten, I find that it increases my migraines and the pain severity. I’ve cut this permanently.

2020-21: go through 3 rounds of Botox every 3 months, get my life back. Almost migraine free. Cut the propranolol.

2022: relapse due to insurance and missing 3 Botox treatments. 2 hospital visits due tostatus migraneous. I am admitted to a top headache center now if I need infusions so don’t need to go to ER. And back on track for Botox, back on propranolol and trying monthly injection (Ajovy) to bring me back to baseline.

what works for me:
Botox, Midol (US) and pamprin (US) these are period OTC meds but they work better than NSAIDs for me.
Also when bad vomiting spells occur, I find relief from epsom salt baths and alternating hot and cold water for relief.
I take 500mg of Magnesium Citrate per day. CBD and CBN gummies, some THC edibles help my anxiety during an attack. I also do therapy to manage during the pain; I had a tendency to want to fight it and it made it worse.
I am having a bad cycle right now of status migranous (irretractible migraine) and my neuro gave me olanzepine, an antipsychotic used to slow brain activity in those experiencing mania. It worked! Usually I need a steroid pack and multiple IV treatments to kill an attack this long.

hope this helps x i know this is

definitely get symptoms but it's mainly a lot of pressure in my head i guess? generally feeling tit and then an extension of any of my usual chronic pain / chronic fatigue symptoms. basically an okay day becomes a bad one in the space of minutes / hours and then i'm in bed for x amount of days until the rebound/lingering headache is my new normal and fades (this can take weeks if i'm just generally stressed out, but it's the same feeling as a new attack so i'm always second guessing if it's a fresh cycle or i'm just in a constant state of tensing my face muscles). also sometimes get gastrointestinal pains or cramps etc but the only consistent thing i can think of is the head pressure and then that *is* the migraine i'll experience, just gradually builds to 100% intensity.

the head pressure is a weird one though because it's temples, forehead, eye sockets, nose bridge, jaw, behind my ears when it gets to 100% but i know a migraine is starting bc it feels like i'm clenching, furrowing my brow or focussing my eyes even though i'm not. like i'll stretch my face out, squeeze my eyes open and shut, can feel my skin moving but my bones (this doesn't sound medically accurate but it's beneath the skin) still have the same tension. they almost feel dense? i've described it before as my skin shrinking but it's actually more of the inside pushing out and my skin can't expand.

100000% relate to the brain fog / disconnected feelings, irritability and confusion but again that happens anyway with the pain and cfs so i've never put that down to migraines, v interesting that both could be a factor. i also get yellow spots when looking at stark white sometimes (imagine printer ink splodges on a piece of plastic, like a slightly transparent colour tint) but this isn't when i'm having an attack.

I could have written this, your symptoms are almost identical to mine. I see a maxiofacial surgeon actually, who specializes in facial migraine. I just got lucky that that otolaryngologist knew him and he was on the floor below. It makes me believe that some of this an inflammatory reaction, especially with the swelling around the face. My eye will sometimes droop, if migraine is on that side. Have you tried cutting out certain foods or an antinflamitory diet? I know it’s awful having to suffer with migraine let alone cut out foods you enjoy. The only sense I can make of the gluten reacting to me is that I have a celiac intolerance and it causes inflammation, triggering the migraine reaction. That’s a wild guess though

 

[knivesnflowers]

I could have written this, your symptoms are almost identical to mine. I see a maxiofacial surgeon actually, who specializes in facial migraine. I just got lucky that that otolaryngologist knew him and he was on the floor below. It makes me believe that some of this an inflammatory reaction, especially with the swelling around the face. My eye will sometimes droop, if migraine is on that side. Have you tried cutting out certain foods or an antinflamitory diet? I know it’s awful having to suffer with migraine let alone cut out foods you enjoy. The only sense I can make of the gluten reacting to me is that I have a celiac intolerance and it causes inflammation, triggering the migraine reaction. That’s a wild guess though

i did have a blood test for coeliac a few months ago which was negative but will definitely look more into it! this was after a folate deficiency and high lymphocytes. i do have hashimoto's thyroiditis so wonder if it is autoimmune and /or hormone related beyond the link i've made myself with estrogen. also have rosacea so burning on my cheeks can flare with other symptoms too so probs doesn't help the facial pain. i might get back in touch with neurology tbh, when i was referred for migraine they tried to help it as a knock on effect to my chronic pain by changing those meds, but when that wasn't working they just never revisited the migraine issue? need to keep pushing it i think!

 

[uncleted]

i did have a blood test for coeliac a few months ago which was negative but will definitely look more into it! this was after a folate deficiency and high lymphocytes. i do have hashimoto's thyroiditis so wonder if it is autoimmune and /or hormone related beyond the link i've made myself with estrogen. also have rosacea so burning on my cheeks can flare with other symptoms too so probs doesn't help the facial pain. i might get back in touch with neurology tbh, when i was referred for migraine they tried to help it as a knock on effect to my chronic pain by changing those meds, but when that wasn't working they just never revisited the migraine issue? need to keep pushing it i think!

Yes advocate for yourself! I’m in the US and have to almost deny medications because I feel like I’m being pushed and sold to. You know your body. All the doctors say “oh there’s no side effects to this” as well when there truly is. I had an awful experience with topirimate. Sadly it did work as well I also tested negative on a blood test for celiac. I did one of those 23andMe kits and it said high likelihood for gluten intolerance, im Irish btw and I think it’s all in our genes. I cut gluten myself and I reintroduced it for a year last year and was depressed, brain fog worse than migraine brain fog, insomnia and gained a load of weight. I could have made myself intolerant now by giving it up for so long so who knows. Don’t be afraid to switch neurologists either or get a second opinion if funds and insurance allow. If I stuck with my first neuro I don’t think I’d be where I am today. I feel like this man (the maxiofacial specialist) has given me my life back. Hope you find relief soon xx

 

[jimmyj123]

Been prescribed propranolol a month ago for almost daily migraines and seems to be helping for the most part but has anyone has this and suffered from any weird side effects like swollen fingers ??

 

[uncleted]

Been prescribed propranolol a month ago for almost daily migraines and seems to be helping for the most part but has anyone has this and suffered from any weird side effects like swollen fingers ??

I just started back on this as well. It helps the number of migraine days for sure. I’m sluggish and a bit tired adjusting but no swollen fingers. I would contact your prescriber, since betablockers affect blood flow. I noticed my toes get cold, but maybe I need thicker socks

 

[pinkmug]

I tend to get ocular migraines before the headaches start. Freaked me out the first time, thought I was having a stroke but my doctor said it happens. Nothing showed up on the MRI or the eye exam. It's annoying (and maybe would be dangerous if I drove) but it also serves as an alert to take a painkiller beforehand so I get through the migraine relatively easier.

My mother suffers from them terribly. The only thing that made tangible difference was these shots her doctor prescribed. It's supposed to be preventative and she's really benefited. Mine aren't as violent so I make do with ibuprofen+paracetamol and cold press on my forehead and nape.

 

[JSquared]

Only pain that help ease my migraines are Solpediene soluble. Taste like shite but I mix juice to help.
I also try to avoid dairy and caffeine, making sure I stay hydrated each day.

 

[hol20x]

I don’t drink caffeine cos it triggers migraines for me. I take propranolol to prevent them which does help. I use those cool patches for my forehead which helps me get to sleep when I've got one.

 

[JSK90]

I've suffered with migraines for about 11 years. About 3 years ago, I was put on amitriptyline 10mg and sumatriptan when needed. The amitriptyline wasn't working so I upped to 20mg. It still isn't working and I've come off it now because I'm about to start a medical trial for Rimegepant. I'm not usually one to trust in medical trials and don't want to be the guinea pig so to speak, but this one is already approved in the EU so it doesn't bother me as I'd be able to get it from my GP if it wasn't for brexit. I do have considerably more migraines when I am stressed and only sumatriptan helps so I hope this new medication helps to prevent them.

 

[JoeBloggs]

I know people are sceptical, but since having my daiths pierced (medically) I have had one migraine in the last 7 months when I was having them weekly. And that was brought on by too much sugar. I also rarely get headaches and I used to get them all the time.

 

[SamKe]

I know people are sceptical, but since having my daiths pierced (medically) I have had one migraine in the last 7 months when I was having them weekly. And that was brought on by too much sugar. I also rarely get headaches and I used to get them all the time.

I tried it but it didn’t work for me but it was a pretty piercing