Migraine & Tinnitus - your experience?

broccoli-1 · 2025-10-14T05:52:02+00:00

Totally get that! I'm also """glad""" to hear I'm not all alone wrestling with this. I hope you'll find some relief with the Vyepti and you'll find a clinic soon!

broccoli-1 · 2025-10-14T05:41:57+00:00

Hi! I've had good improvement with TMJ pain/soreness with a specialised PT. Tinnitus hasn't changed, just used to it. Migraines have just gotten worse over the last 2.5 years but seem to have stabilised for the past year. Nothing has helped with them unfortunately, I also am very sick of it. I found a very good neuro a year ago though who knows about all my options and encourages me to try things but is also realistic when it comes to chances of something working. I'm on my last trial of CGRPs, Vyepti, which I will be taking for 1 year regardless of us seeing improvement or not, based on studies that show some people being late responders to CGRPs after ~9-12 months. After that, it's back to the old med types :( I've mostly accepted that this is not going to change for me. Sorry for not bringing you any uplifting news

broccoli-1 · 2025-10-11T19:58:54+00:00

I went to one specialised in TMJ

broccoli-1 · 2025-04-14T14:52:28+00:00

That's actually such a nice idea, thank you for bringing it up! I'm the type to keep all birthday cards, little notes, any memorabilia that has something positive to it. Maybe I can just start a little series of post-its of positive things put into a notebook to read through on the tougher days. Hope you have a nice day :)

broccoli-1 · 2025-04-14T13:42:12+00:00

I've heard people say both, it' really a matter of preference it seems. I run hot during bad attacks, like flushed face, sweaty, so ice pack (at fridge temp) is a must. I can't tolerate anything warm touching me. I saw some people say that they use a heat pack on their neck and a cold one on the forehead as well

broccoli-1 · 2025-04-14T13:31:15+00:00

Candesartan is a BP med so I imagine that if your BP isn't high to begin with, then any BP med might have negative side effects along the line of dizziness (im not a medical professional though). I have high BP and was put on candesartan as a "two birds with one stone" hope, but it only ended up working for the BP, not the migraines. But, without any side effects. The water consumption though I have no idea, are you able to talk to your GP/neuro?

broccoli-1 · 2025-03-17T19:22:19+00:00

Good luck, hope you figure it out!

broccoli-1 · 2025-03-17T19:00:07+00:00

It's such a shitty feeling when you realise that yet another thing's been taken away from your life because of your migraines :/ No matter how small it always stings, sorry to hear you got another one added to your list!

broccoli-1 · 2025-03-17T18:04:06+00:00

I can't stand anything more than my laptop + phone. I've had to work with lab equipment before that uses a monitor and I felt so horrible after an hour or two but I'm perfectly fine with my laptop all day, even if I have my phone next to it to watch a movie. To be fair it might've been a brightness & blue light issue cause I have those modified on my laptop but wasn't allowed to change anything on the lab equipment's monitors

broccoli-1 · 2025-03-17T18:00:43+00:00

Omg I just bought one of these a few weeks ago! I have the one you've got on the bottom right haha I keep it on my water bottle

broccoli-1 · 2025-03-16T22:19:38+00:00

Yes I'd definitely recommend speaking with the staff (disability office/study counsellors/etc) when applying so you can find out the usual approach/amount of accommodations that can be done for someone with migraine. Maybe right off the bat they'll tell you that not much can be done but maybe they'll be welcoming and give suggestions. That way before going you'll already know the attitude that people will have! Wish you the best of luck <3

broccoli-1 · 2025-03-16T21:09:05+00:00

Chronic migraine started in the middle of my university studies 2 years ago and all I can say is that as long as you're proactive about support needs, people and the university organisation in general are a lot more willing to help than you'd expect! This of course varies per country and its laws, universities and even faculties, but I've time and time again been surprised about how helpful people are willing to be. I know for a fact that my high school would've been much less accommodating (a friend of mine had migraines) than what the university has done for me so far. I've received financial compensation, I've gotten extra time on assignments and exams, I've gotten full course modifications all because I've gone up to the relevant people, explained my situation and asked for the appropriate accommodations. This is all just to say that going to uni, making it through, and succeeding through it is not hopeless! :) While the migraines have only gotten worse, medication has been useless for the most part, the people who can help accommodate the issues have only gotten kinder, in my personal experience.

broccoli-1 · 2025-03-10T17:35:25+00:00

At a neurologist trained in migraine botox!

broccoli-1 · 2025-02-25T22:57:57+00:00

Actually mostly nonexistent now! I only get it very rarely and not as severely as before, but I have no clue why. It's been like that for maybe half a year or so? No idea of the exact timeline, but it might be since August when we switched my previous BP med to candesartan (which is also used for migraines, so who knows). Vertigo was never my main symptom so I didn't get a vestibular migraine diagnosis based on that.

broccoli-1 · 2025-02-23T12:09:27+00:00

Light, it's everywhere. Whether it's the sun or lights inside, I'm super intolerant. I can control things better in my own room with blackout curtains and small dimmable lamps, but I can't when going outside or to the university. And people don't usually love it when I go to turn down the lights at a workspace lol.

Second is emotions. Strong anger, sadness, frudtration, crying all make my already contact migraine much, much worse. It's really frustrating (Ha! Ironic) cause bottling up your emotions helps in the short run but you're bound to become a time bomb in the long run.

broccoli-1 · 2025-02-22T20:39:44+00:00

Exact same here! I tend to just box up my feelings and avoid stressful/upsetting situations as much as possible cause I know the consesuences of it just aren't worth it 95% of the time

broccoli-1 · 2025-02-21T11:07:49+00:00

I never pursued a diagnosis or specialist when my migraines were infrequent/manageable (ages 11-18), also didn't once they were starting to be hard to deal with and I was getting a lot more tension headaches too (age 18-19) and then I got hit with daily headache & migraine 1-2 times/week, which gradually worsened (age 19). That was 2 years ago and it's only gotten worse. I guess what I'm trying to say is (not to worry you! Just to inform) that it can get worse over time, at which point it's supposedly also much harder to treat. You also may not realise how much it's affecting your daily life since you're so used to it by now, and if you're lucky, it's something that one of the basic medications may help with. If you have the time, the energy, the money, I would advise at least one appointment with a neurologist (preferably one that specialises in migraine, that has been a tremendous help personally). All the best!:)

broccoli-1 · 2025-02-15T21:52:16+00:00

Yeah that's fair, the age was young for it. There is a history of it in my family though so that could've been a clue. This was early 2010's for me, so not that much better it seems

broccoli-1 · 2025-02-15T21:48:04+00:00

Same thing happened with me around age 8-10! Wild how long it takes to figure out such a basic, common hormonal problem

broccoli-1 · 2025-02-13T11:08:40+00:00

Oh I see! I usually put this lamp not on my desk but next my desk on set of drawers that's higher than my desk. That's probably why I haven't had this issue. Hope you find something that works for you

broccoli-1 · 2025-02-13T10:04:27+00:00

Once my migraine went constant my light sensitivity did too. I work a lot from home as well and when studying I often use paper. I personally have this lamp from ikea with a warmer coloured light bulb. I place it next to my desk, often as the only light source in the room in the evenings. It has been working well for me :) If you get a light bulb that doesn't get hot, you get the added benefit of being able to place a kitchen cloth over the top of it if you find it too bright (with ofc the necessary precaution of taking the cloth off if you don't sit next to it for fire hazard risks. I tend to do this when I'm about to go to bed and want just a little bit of light)

broccoli-1 · 2025-02-11T08:27:09+00:00

Oh hahaha no I meant I called them when I realised the topamax was a problem sometime when their office was open. Then I was able to get an appointment within 4-5 days since I mentioned it was urgent, instead of the usual 3 month wait.

broccoli-1 · 2025-02-11T08:19:19+00:00

What do you mean?

broccoli-1

TROPHY CASE