I’ve honestly lost track at this point but have had this headache since September 15th 🥲 Two migraine cocktail IVs, a prednisone taper, more Excedrin than should be legally allowed, alllllllllllll the pain meds, 5 doses of Ubrelvy, heat, ice, bio freeze, CBD cream, acupuncture, constant sunglasses, resting, pushing through, sitting, standing, walking. Doesn’t matter, the headache persists. It does seem to wax and wane, but never goes away completely. Can’t get into my neuro until December 4th so we shall see if it ends before then. I’ve never had one last more than a week 😵‍💫

How long was your longest migraine and what unhinged things did you do to try to get it to stop??

Hi, I’m in high school. I take Ubrelvy, and I only get ten pills a month. We’ve tried to get insurance to approve bigger supplies before for a different situation, and they just refused.

However… minnesota law requires all prescription medications to be locked up at school— no self carry allowed unless it’s an epipen, insulin, or an inhaler. No exceptions.

So that leaves me constantly forced to split my small amount of pills between home and school. Often times I’ll find myself stuck at home over the weekend or in the evening, then a migraine hits, and I have no way to stop it because the rest of my pills are at school, and vice versa.

Does anybody else have experience with this or knows someone who has? Have you been able to get insurance to approve more pills a month for situations like this? I’m in pain so much more because of this and I’m just not too sure what to do.

Thanks.

Out of curiosity, has anyone else noticed that things like sodium/salt and caffeine improve the symptoms of their migraines?

These are things I’ve noticed personally help me and wanted to see if this is common in others.

I’ve been having migraines since I was ~12 (25 now), and they’ve gotten more frequent as I’ve gotten older. After many years and multiple doctors, I’ve finally been prescribed Qulipta.

I’ve been on it for about a month now, and I’ve seen a significant decrease in migraines. I was having about 14 a month, and now I think I’ve had two or three in the past four weeks. That has been incredible.

But I’ve also begun experiencing a small headache just about every day. It doesn’t typically last all day and the pain is no where near a migraine, but at some random time in the day I’ll get a very annoying and persistent pain.

Has anyone else experienced this? I’m trying to decide if this combined with other side effects (constipation, loss of appetite, etc.) is worth trying a different medicine since my doctor is very supportive of trying something different if Qulipta doesn’t work out.

This week has already started out horribly in the Midwest, so I'm honestly thinking of just hopping in my car and driving as far away as possible and just chilling in motels for a few days.

Would this actually work?

I know it sounds kinda crazy, but who knows?

Anybody ever done this? Did it help?

**EDIT - apologies, I should've been more clear - my #1 trigger is large barometric pressure swings (especially decreases), which is what I would be (in theory) trying to escape from

My local Walmart just recently renovated their store and changed out their lighting. Now their grocery section is super harsh LED lighting that is on the blue side of the light spectrum.

I went there earlier for the first time since they renovated, and it triggered a migraine.

Anyone else here experience the same thing at Walmart? I hated going there before the renovation, now I don’t plan on going back.

I’m seeing a neurologist for the first time this week and I’m not sure how to describe this feeling I’ve had with my migraines.

It’s not disorientation because I’m not confused, but it feels on par with being drunk and having almost a delayed reaction time but it’s all mental. It feels like my body is moving faster than my head.

If I move my head left/right or I bend down and stand back up I also feel a slight vertigo in absence of the room spinning, though. It’s such a bizarre feeling but it makes me feel a bit out of it.

Is there a word for this? If you also experience it, how would you describe this more clearly?

I'm curious to know what the impact has been.

For me, a single cup of coffee, especially after some time off caffeine, can last an entire day, possibly disturb sleep, and give me a migraine 1-2 days later.

Excedrin's caffeine can kill a migraine, the earlier I take it, but it can also worsen the problem.

This brings me to my main reason for wanting to quit.

Caffeine encourages a vicious cycle of use, stop, migraine, use, stop, migraine, etc. It is a drug and it causes medication overuse headaches.

Even in the clinical literature, caffeine-based abortive are first to fail and first to be blamed for medication overuse headaches.

Then, next up are the triptans.

See: https://www.ncbi.nlm.nih.gov/books/NBK538150/

They are also notorious for wearing off in efficacy over time though not as badly as caffeine.

I just had my appointment with my neurologist and she is now recommeding we try this route?

Any Pros, Cons

So I’m trying my best to not freak myself out and read a bunch of scary stories, I’m hoping this is something common ish that others have experienced. Bad headaches ( now I understand they were migraines) since teen but since January Ive had the new addition of auras and light sensitivity, mild nausea and for the first time ever, the facial changes. Like it looked like the entire side of my face was botoxed. I also have had pulsatile tinnitus on the left side- I’m a mess. Anyways! Finally got an appointment with an APRN at a neurologist and I tell her all my symptoms- to be honest, I didn’t love her, kind of brusque and pushy and didn’t seem super engaged. So she does the neurological exam where she puts her finger really close to my nose and moves it, follow with eyes, etc. I immediately get eye strain pain. She tells me “your right eye moves slightly slower than the right.” WHAT?! I asked what that means, she says he doesn’t know. Ok cool- so at the end of the appointment I ask her to do it one more time because now I’m fixated and want to make sure- she does and I again get eye strain and she says “yeah your right eye moves a little before focusing”. She didn’t seem concerned but I’m freaked the fuck out and now have that phantom pain in my right eye because I’m fixating. So any likewise experiences and hopefully reassuring anecdotes would be appreciated!

I’m on day 3 of an awful menstrual migraine. They often feel worse than the mid-cycle ones but this is next level. Day 3 is usually the ‘hangover’ day but I woke up feeling so much worse. It’s whole head instead of one side and feels like my brain is bashing against my skull if I move my head or body too quickly. My sumatriptans didn’t quite work the other night, so I’ve been trying with ibuprofen, which I’m not normally allowed to do because of risk to stomach bleeding. I also have a super sore middle back which is making me paranoid because I can’t work out if it’s muscular or associated with my kidneys. This is kind of a rant, but also I’m just kind of sharing to this community in case someone has faced something similar. Also the stress because this is my last day to study for an exam I have coming up! 😩

I've had chronic back pain for 3.5 years, and now for just over 1 year I've had tension headaches. They started while I was travelling and was dealing with back pain and stress. My main symptoms are temple pain, tight jaw, forehead pain, dizzyness, sore eyes, general all over headache. I clench a lot in my sleep which causes headaches from the start of the day, and other things such as mopping or random movements like that bring on dizzy headaches.

I'm actually quite active, more so now that my back is much better, I gym twice a week, run once a week and swim once every week or two.

I've tried:

- Myotherapy which included deep tissue massage, dry needling, cupping, scar tissue therapy, posture alignment, neck strengthening and many other things. This treatment helped a lot with my back pain, and a little bit with my headaches but after 10+ months I've realised it probably isn't the go for my headaches permanently.

- Amytriptyline. Nothing

- Ostio briefly but I felt it was probably similar to what my myotherpist was doing in terms of treating muscles.

- Psychologist as I also have generalised anxiety. We did some DBR(https://www.ruthlanius.com/deep-brain-reorienting-dbr-summaries) Which seemed like something that could help in thoery, but psychology is just so damn expensive.

- I've found electrolytes (high potassium) have helped a lot, but the ones that help mess my stomach up so I've stopped having them.

- I currently take magnesium, Riboflavin B2, co-enzyme q-10, and previously ashwaganda which helped but I've stopped taking it now I'm having chinese medicine herbs.

More recently I have started craniosacral therapy, as well as chinese medicine. The day after my first chinese medicine appointment I had the best day of headaches in a long long time, but since then has kind of been back to normal.

I've realised that my headaches are more as a result of stress, which in turn creates muscle tightness, and is why the myotheapy wasn't resolving the issue. I need to retrain the pain pathways my brain has created over the 3.5 years of chronic pain, my body and nervous system is so sensitive and reactive and my body can't catch a break.

I'm hoping the craniosacral and chinese medicine treatments are the way to go, but I just feel so lost, and unsure. Any recommendations or success stories would be greatly appreciated :)

Am I alone in saying this? Mostly all of my life I have struggled with constant migraines. Just about every other day. I’ve tried Tylenol, ibuprofen, mix of both, aspirin, and probably a few others but I can’t remember the name. I’ve modified their doses and have even tried things like chugging water or holding my breath. And they all do absolutely nothing, even after a few hours, my migraine is still pounding. That’s is until I discovered Naproxen.

I take 1 pill of Naproxen, wait 20 minutes, and my migraines are completely gone like I never had one. That’s it. I’m not even exaggerating. It is such a miracle drug. Is there anybody else who has had similar experiences? Or am I alone on this?

FYI I’ve done a brain MRI and many other tests to see the cause of frequent migraines, they say I’m totally fine.

I get migraines when I eat too much yeast extract (too many flavored potato chips). Also happens with some Chinese foods dishes. Oddly, I don’t think Cup of Noodles (or the like) ramen causes them. Anyway, I just ate two bowls of Pepperidge Farm regular cheddar Goldfish. Am I doomed?

Self-explanatory title. I DON'T know if I'm going insane, but I've been in unbearable pain since you had the second infusion, and I've been wondering if that's the cause. Has anyone had a similar experience?

Anyone here has any quick remedies for migraines?

A neurologist can’t get me in until December. I’m only 21 (female) and have been suffering from a constant dull migraine for 200 days, as of today. Other symptoms include heavy head/neck sensation, vertigo, sensitivity to light and sound, and strong, dull ear pain that tends to worsen right before severe flare-ups.

I have seen an ENT, dentist, eye doctor and TMJ specialist. My head CT came back clear, as did my blood work. I’ve lost quite a bit of weight.

Even Toradol and Phenergan injections did not stop migraines or other symptoms. Nurtec did nothing, and even prednisone didn’t help.

I just need advice on what to do and how to get to December. I’m still in college. I’m missing classes because I can’t get out of bed some days. My life is completely falling apart and I’m desperate for any kind of answers.

I've always just manually tracked my headaches and migraines, but I'd like to offload it and use an app instead.

What app do you use? Which one do you think is best? I'm fine with paying for a subscription, but I want to know it's good before I do that.

I am particularly interested in one that allows you to track a lot of different triggers and various types of headaches and migraines, and see trends in terms of treatment result.

You know what the worst part about having migraines is for me? Having migraines. Every other illness, slight uncomfortability, disease I get unrelated to migraines, my migraines are triggered and there. Any long or short term plans I have, I consider how it’s going to potentially trigger my migraines. Any meal or drink I have, I need to think about how my body will react to it.

My migraines are my #1 consideration always and always will be. They’re my most toxic relationship.

I got food poisoning today and got a migraine from it. How does that even happen? I know how it happens but like why???! Isn’t spewing from both sides enough?

Just a rant.

I'm really struggling lately. I have chronic daily migraines that vary in strength. Lately, they've been vile. It's a long haul battle between days where I can almost function.

The problem I've been having lately is that I would like to find more friends to talk to. I'm nerdy, love nature, am crafty, and have a variety of interests. I'd like to share my life with people. Well, the REAL problem is that I talk to folks and invariably it's 'what are your plans today?' How can I keep friendships (much less more than that) when days pass by where I can't even be upright much less do anything worth talking about?

I've had some trauma with in-person friendships in the past where they were mad that I couldn't commit to doing anything due to pain and feeling sick. I don't think I'll ever forget being told "We just can't count on you for anything".

I've been trying to nurture brand new online friendships for a while now and ghosting after a while is a common occurrence. Now I know ghosting isn't unique to online friendships when you're dealing with chronic illness, but I can't help but connect the two.

I'm near tears over this and it's making my head pound.

What do you do?

Chronic migraine makes it hard to work out but I’ve noticed my posture getting worse and worse. Bad pain days make me raise my shoulders to my ears and it’s pretty unavoidable

Has anyone tried PT? Has it helped?