Into_the_tunnel
VIP Member
But like I’ve been told by so many people.. just lie down in a dark room and take migralieve and you’ll be fine.
People have no idea do they?
- Notice
People have no idea do they?
I’ve just found this thread after almost derailing another from going on about migraine advice. In Ireland we have a rake of influencers saying they have a migraine while happily dancing about on their stories..even recommending Sumpatriptan as an OTC remedy..
I found my cure (saved my life- quality wise) and a lot of support on forums. So many women suffer from migraines.
I was diagnosed with chronic migraine in 2019. I had just moved abroad and constantly had what I thought were sinus headaches in Ireland. They started out as episodic, then turned chronic. They didn’t feel like a headache, in fact I went to the ER because my whole right side of body went numb. Speech was slurring, dizziness. Overheard nurses saying I was suspected to be having a stroke. Got referred to a neurologist but was in complete denial. I didn’t really have pain, it wasn’t a headache just tons of pressure in my eye/upper head area. I got a personal referral for a forum, to an amazing neurologist in the US city I now live in. I felt as if no one understood me, he told me they’d eventually turn worse and they did. He’s published online in medical journals for facial migraine, chronic migraine. I want to share my med regime as I was messed around by the system for so long!
We started medication, ended up on;
1) Triptans: sumatriptan, I had the exact same symptoms you’re describing above. Chest pain, sore throat, intense head pain (irony), and palpitations. Rizatriptan did work for me but literally made me stupid the next day, I actually sat at work clicking around the screen the next day (no joke) triptans don’t seem to work for most on the various forums I’ve been on. Wish I’d known that.
2) tricyclic antidepressant route (amitryptiline, nortrypiline) gave me sweats, nightmares, and low mood.
3) topiramate (worked for me! I could now take triptans and get rid of my migraine but the side effects were insane. I had intrusive thoughts, developed social anxiety, word recall - could not remember words like green for example but could fully describe it like “the colour of the forest.” Couldn’t count anymore..and after I stopped the med I had vision problems, could see double of an object but as if it had a shadow. I found this was typical of 50% of those taking it. (Heard Depokote was worse in forum but helpful too. Massive weight gain)
4) propranolol (beta blocker) this decreased my frequency and also helped with some social anxiety I had. I still take it.
5) after failing all of these (as ordered by the American insurance system it meant I was now eligible for Botox) It took 3 rounds (and 9 months but they slowly decreased in frequency and severity) I was just going on work disability at the time as well.
that’s the insurance system here and had I known that I could just stop taking some of these meds that effectively gave me worse issues, I would have been better a bit sooner. I literally thought I was crazy, I had no one to talk to. I get severe confusion and disorientation, anxiety and depression before I get a migraine. It’s my prodrome phase. I’ve been the ER 6 times for irretractible migraine (one lasting 72h or more)
I spent months obsessively googling “triggers” what I’ve learned is, triggers are as unique as your fingerprint. I beat myself down further by not allowing myself chocolate, wine, cheese. I gave all 3 up…for a year. Literally my 4 favourite fecking things and nothing changed! I think it’s total misinformation that certain things cause them.
My Botox had been delayed 4 months due to supply issues, I get it every 3 months. So back with migraines but they’re way less severe. I was up for 2 days straight with one this week.
The internet is full of so much misinformation about migraine.
Because there is little research on it. It primarily affects women. Research shows those with chronic migraine have psychiatric illnesses or other comorbidities such as asthma, fibromyalgia or insomnia etc. So our symptoms were dismissed as psychosomatic.
In the US there are half as many people suffering from arthiritis, but more cures and awareness. This because it primarily affects white men, those in power and (let’s face it) much more likely to complain!!!
TL; DR (too long don’t read) I had chronic migraine for over a year and thought I was going insane, often felt suicidal, and spent days in bed in dark room with nothing to do but google and go onto forums to research this disease. I found a similar post to this on a forum and it saved my life.
If you’re suffering right now you’re not alone.
Also edit; I’m having a 4 day very mild (no vomiting, nausea, little pain but enough to make me miserable) so please excuse any spelling errors.
Blanche Hunt
Chatty Member
I thought I’d start a thread on migraines as I’ve suffered from them for around 22 years and have yet to find something that works for me. I’d be interested in what works for you/ didn’t work as my GPs never seem to offer any real solution. Id also be very interested in anyone who’s went down the route of injections/Botox/piercings etc and if they have truly worked as I’m very interested.
Blanche Hunt
Chatty Member
Thank you so much to everyone who’s replied! It’s so interesting hearing everyone’s experiences.
I find the lack of understanding around migraines both from the professionals and from family/friends/colleagues who don’t suffer from them so disheartening. Even after al these years some people really close to me think they are headaches.
I find the lack of understanding around migraines both from the professionals and from family/friends/colleagues who don’t suffer from them so disheartening. Even after al these years some people really close to me think they are headaches.
knivesnflowers
VIP Member
mine fills my whole face with an acid like feeling - sometimes can't even drink through a straw. i used to get really bad nasal burning as an aura (??) but now that happens randomly with no migraine after. i can physically feel the pain move to the other side of my head when I lie on one side too which is maybe weird idk and if it's just around my eye sockets the sensation gets 'trapped' by the bridge of my nose?? also got rosacea which can flare at the same time (mask wearing triggers both but randomly) so the facial flush / burning combined with the feeling that my cheeks and jaw are being eroded away is literally torture!
GiftedNotFree
VIP Member
I’ve suffered with migraines since puberty (I’m 31 now). They are debilitating. I’ve found no solutions for stopping one before it starts — if I feel it coming on, it’s coming no matter what I do. I’m not on any form of birth control and coming off those has improved them slightly. Solidarity to all of you fellow sufferers! There’s a long way to go in terms of people / medical professionals truly understanding migraines and how to help treat them.
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
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zetta buttons
VIP Member
Just here for a self-indulgent moan really.
I am coming up to 21 years with my cluster headaches and really I wish they could F off. After a horrific bout in 2019 that left me unable to teach (I now volunteer 5 days which means when they are bad it doesn’t matter if I need to be at home). I feel completely at their beck and call. I have oxygen and Gammacore but that basically means I’m not screaming like I used to, but I’m still in pain. Anytime anything is stressful, or the weather changes, or it’s hot, or…I’m hit. I’ve had a shitty morning with house stuff abnd I have to go out to get my mother a present but I just can’t. She told me I had a low pain threshold the other day because I always seem to have headaches so now I feel even more shit.
Wallowing session over.
I am coming up to 21 years with my cluster headaches and really I wish they could F off. After a horrific bout in 2019 that left me unable to teach (I now volunteer 5 days which means when they are bad it doesn’t matter if I need to be at home). I feel completely at their beck and call. I have oxygen and Gammacore but that basically means I’m not screaming like I used to, but I’m still in pain. Anytime anything is stressful, or the weather changes, or it’s hot, or…I’m hit. I’ve had a shitty morning with house stuff abnd I have to go out to get my mother a present but I just can’t. She told me I had a low pain threshold the other day because I always seem to have headaches so now I feel even more shit.
Wallowing session over.
knivesnflowers
VIP Member
i've been on amitriptyline for five or six years for chronic pain so can't really comment how well it's helped my migraines - although i did notice a big (bad) difference when i tried switching to nortriptyline! meant to be more suited to migraines but i was in agony when on it so quickly switched back.
i found oestrogen was a trigger when taking my week pill break (on provera for pcos so progesterone only) and they've improved slightly since switching to desogestrel with no break.
mine suddenly got worse about a year ago so prescribed sumatriptan which worked initially with x2 50mg two hours apart but more recently (migraines happening less often thankfully) it's not as effective??
i found oestrogen was a trigger when taking my week pill break (on provera for pcos so progesterone only) and they've improved slightly since switching to desogestrel with no break.
mine suddenly got worse about a year ago so prescribed sumatriptan which worked initially with x2 50mg two hours apart but more recently (migraines happening less often thankfully) it's not as effective??
LifeOfMog
VIP Member
Currently in this boat - had an MRI yesterday as I get something very similar to cluster headaches (as in how quick they are) but with the full on pain of a migraine in the right side of my head. I get these around 10-20 times a day, and on the worst days I get a bright red ear too! Also started to get nose bleeds out of my right nostril, pain in my neck / shoulder blades, and blurry vision with extreme fatigue even if I sleep for 10+ hours!Did anyone panic that it was something more serious than just a migraine? Currently had two migraines in the past two weeks, one lasted a full week and the other 3 days
I'm hoping they can work out what it is as it's now affecting my career, and being 25 I also want to start thinking of a little bub
I find it hard to not focus on it as you read things on the internet, but I also don't know any of my family history as I'm adopted and no longer have contact with my biological parents (ones dead, the other is an asshole)
bcfc999
Chatty Member
Feeling really stressed out as I'm ringing in for the second day and it's a job I've only been at just over a month. The thing is I actually had the migraine on Saturday night and haven't really got over it but usually I'm feeling better than this by now - not 100% but not awful. I'm worried work will think I'm taking the piss. All I said yday was that I had a migraine, not that it had lasted a couple of days, so I'm hoping they don't doubt me? I'm really anxious about ringing in (I also have anxiety haha) and scared they're all talking about me behind my back. I also don't know what triggers my migraines - I assumed it was stress but I haven't been particularly stressed the last couple of weeks so idk.
margaretta
VIP Member
If you’re in whats called postdrome (post migraine hangover, can sometimes feels worse than the migraine itself) dehydration and lack of nutrients is often the key. So drink lots of water and if you can have a proper normal meal, protein and lots of veg, not pasta or wheat or anything high sugar or processed.
The other tip is to regulate your blood sugar. Eat little and often so you don’t get any dips. So ideally 3 meals and 2 snacks a day so you are eating every 2-3 hours or so.
I had the same experience with my neurologist. Someone explained to me that they deal with so many complex neurological conditions that it’s difficult for them to get a grasp on one. I now see a headache specialist at a headache center and he was very interested. I had 3 different neuros and found them all to be quite cold. One didnt even remember my name/if we met after seeing me twice. Another one told me to control my migraines by going an IUD. I ended up developing chronic migraine. Yes advocate for yourself but find a doctor/neuro who has good beside manner/compassion. I find that’s all we need as migraineurs with the stigma, someone to just understand the magnitude of the illness and show us compassion.
id make an appointment at the opticians and have an oct scan that can show some issues,also too many medications can cause the headaches too which is annoying.
same sort of thing happened to me and an eye test flagged it.
x x
TwooTwooTwitTwitTwoo
VIP Member
Has the GP discussed prescribing a preventative medication such as Amitriptyline? If they aren't prepared to do that then you're well within your rights to request that they refer you for an appointment with a Neurologist who will. You might need to get a second opinion from a different doctor though. I'd argue that is impacting your life to such an extent that 'managing your pain' isn't cutting it!
Sorry you're having a bad time. I hope the pain lifts soon.
Into_the_tunnel
VIP Member
I forgot to say, I had sumatriptan pills, nasal sprays snd injections. The injections worked but I bled because I got so stressed and then couldn’t do them at work. Alcohol was a major trigger so that went 13 years ago 
. Air pressure is too and the changing light at the equinoxes.
A friend who has migraines that paralyse her face has Botox and the sumatriptan injections. She really suffered during covid when she wasn’t getting the Botox as frequently.
. Air pressure is too and the changing light at the equinoxes. A friend who has migraines that paralyse her face has Botox and the sumatriptan injections. She really suffered during covid when she wasn’t getting the Botox as frequently.
zetta buttons
VIP Member
I have to echo this. Although I don’t get typical postdromes (which can be horrendous from what I’ve seen from other people) after my cluster headaches, I end up feeling so drained and terrified that another is going to hit that I am good for nothing for ages.
You definitely need to rest. Your body has been through a lot (particularly your brain) and you need to recover.
A diary will definitely help. Record weather, your other general health, sleep and food/drink. All of these could impact migraines. Hope you feel better soon
.You could be having a status migrainous/intractable migraine. Can you go to your GP for this or do you have a neurologist/specialist? I’ve gone to the ER for similar (migraine lasting 72h or more) and have been given an IV that finally took it away. I’ve also done steroid packs that have relieved it and I’m currently doing a stemetil bridge treatment for the same condition. Everytime I get rid of it it comes back with a vengeance. Feeling depressed and guilty is a symptom of prodrome as someone mentioned. I also get this way when calling out of work, I feel like everyone is upset with me, I’m magnified by 100. It’s not a rational thought, and I have to keep reminding myself of that. Can you do a small act of compassion for yourself like order pizza or a treat if you can eat? Or a long soak in the bath? Sometimes when I treat myself with compassion like this it reminds me that I’m not well, and that’s okay and work should see that too. Wishing you better days
I had to beg to come off Topiramate. Sure, it worked but the side effects were awful. I'm (I understand this is incredibly rare) mildly deaf because of it.It took the gps years to refer me to the headache clinic within neurology around 8 years ago. The dr there reckoned I’d I’d been having migraines for years and not just headaches when I was a teen.
He started me on topiramate which worked but upping them within two weeks to the recommended dose was awful. So I discussed it with him. And it took me a year to up them completely. I’m still on them, I very rarely get migraines now compared to 3 a week.
I was given naratriptan which I could take when I was busy and unable to go and lie down. And rizatriptan when I was able to go straight to bed.
They did query hemiplegic migraine twice before topiramate also.
It’s a great preventative if your Body either copes with the side effects or you can come up with a plan with a Dr or specialist.
edit to add instead of taking any topiramate in the morning I take it at night.
Also the gp had me try a few other things before they would even consider a referral. I was 13 when I first saw a gp about migraines, and mid thirties before the gp referred me to a specialist
I'm now on pregabalin and the side effects are somewhat better. Hate the weight gain though.
It’s so hard not to stress as most who don’t suffer don’t really understand how debilitating a migraine and the after effects can be. I don’t know my triggers either but if you are on Facebook there is a great support page UK Migraine support and I’ve gained lots of tips to help manage my migraines from there. Hope it passes for you soon x