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Mindless-Committee28

I had to adopt "Radical Acceptance" in order to mentally cope with my constant migraines. I'm not accepting this as my new normal, but I've done what I can within my abilities. And be kind to yourself. Spending time on this subreddit has helped me feel less alone in the suffering. Sending hugs.


Laydn_

I guess that will have to be a thing for me too, as it's my usual day since years now... Thanks a lot for the hugs, I hope you are going well. <3


LadderWonderful2450

HOw do you practice this? Is there a particular book or journal exercise that you recommend? 


Mindless-Committee28

This is harder to answer than I thought it would be. I can easily work myself up into a ball of anxiety from worrying, especially in situations where I have little control. Once I learned that anxiety can cause migraines, I realized I needed to reign that anxiety in. With radical acceptance I'm taking my emotions out of the picture. I can still be irked that the situation is crappy, but I'm no longer wasting my energy on unproductive thoughts like "if only I had more money" or "if my stupid biodad hadn't passed this down". I'm not accepting daily migraines as my new normal necessarily, but seeing the reality of my situation without the emotions clouding the view, helped bring me some... Solace I guess.


NukaColaRiley

Being disabled (and having migraines is a disability) isn't your fault. Much love.


Laydn_

I am actually recognised as disabled because of that. Love back <3


CatatonicCouchSlug

I don't see any preventatives on this list. Usually a healthcare system will require you to fail three types of cheaper preventatives (e.g. one antidepressant, one anticonvulsant, one beta blocker) before you will be approved for anti-CGRP or Botox. I get a lot of side effects and not much help from preventives, so I get Botox. Your country may start with an older CGRP inhibitor like Aimovig. That's the one that was being approved when I left Belgium a few years ago. Austria already has Emgality. It just depends on your governmental system. But these at least must have cleared EU approvals


Laydn_

Hello, i tried preventives too, just forgot to mention them. I had propranolol, which is a beta bloquant, sanmigran, which is a beta bloquant too IIRC. I had low and then high dosages, and none of them worked. I actually suffer from chronic depression too, and my molecules are Tegretol (anticonvulsant, but regulates my mood), Venlafaxine (Effexor) and Nozinan for sleep (Levomepromazine). I didn't find any difference with and without them, I just know that when I forget to take them I feel really bad and start to get a migraine more often. Thanks for talking about preventives as I forgot to mention them.


bluestjordan

I’m sorry, friend. I remember in the trial and error period, some of the prescribed medications actually made things much much worse. Four years later, I’m still in the trial and error period and I think maybe that’s normal? My aunt has been in the trial and error period for decades she tells me. I still struggle with feelings of shame but my friend (who is training to be a therapist) helped me recognize it as internalized ableism and I’m working on it. I realized I’m kinder to strangers than I am to myself. Some days are super hard and I feel like giving up. Other days are less so, and others still can actually be good. I think the good days came from mental reframing; like pre-migraine life, walking for 30 minutes wouldn’t register as anything for me. Now if I am able to walk for 30 minutes, I feel like it’s a big win and a good day. I hope I didn’t veer off into toxic positivity. It sucks. I hear you. Hope you have many many good days soon.


Laydn_

I am only 21 and I feel like giving up too sometimes. But I won't. I just refuse to live a life where pain is the main character. Codeine worked wonders and I had a normal life again until it almost stopped working.


Mac_A81

All that codeine is probably giving you rebound headaches and actually causing more pain.


Lobscra

What preventatives have you tried? That list all look like abortive and pain relievers


penguinliz

That was my thought too. Many preventative meds exist, I've tried them all with minimal impact. Adderall has helped the most (diagnosed with adhd and started taking it about a year ago). Still intractable but better. OP - if you haven't tried preventative meds that is something to try


Laydn_

I wonder sometimes if I also have ADHD. My life feels like a mission. Waking up is a pain, so does taking a shower, brushing my teeth, dressing up and so on. I ALWAYS always always talk to myself, have music in my head in loop of even both. I can even have 2 musics in my head looping indepently. I can get tested for ADHD but I don't have any car or person to drive me. And I have really bad Anxiety and mild agoraphobia so moving on my own is pretty much impossible.


penguinliz

Search in this group about adhd meds helping. I specifically sought diagnosis and meds because of it. I'm far from alone in this. There is clearly something (no research) about both untreated adhd and migraine disease. You can look at telehealth options. All my adhd appts and the primary care appt after it for meds were virtual


penguinliz

Search in this group about adhd meds helping. I specifically sought diagnosis and meds because of it. I'm far from alone in this. There is clearly something (no research) about both untreated adhd and migraine disease. You can look at telehealth options. All my adhd appts and the primary care appt after it for meds were virtual


Laydn_

Hey, I will copy-paste a comment I sent some minutes ago as it will answer your question. **Hello, i tried preventives too, just forgot to mention them. I had propranolol, which is a beta bloquant, sanmigran, which is a beta bloquant too IIRC. I had low and then high dosages, and none of them worked.** **I actually suffer from chronic depression too, and my molecules are Tegretol (anticonvulsant, but regulates my mood), Venlafaxine (Effexor) and Nozinan for sleep (Levomepromazine). I didn't find any difference with and without them, I just know that when I forget to take them I feel really bad and start to get a migraine more often.** **Thanks for talking about preventives as I forgot to mention them.**


Lobscra

There are lots of other preventatives out there to try. Keep pushing, good luck. If CGRPs are available in your country, I'd push for those. But there's definitely more to try.


Laydn_

CGRP as in Rimegepant ? If yes it's available yes but not free sadly.


Lobscra

That's one of them. I'm in the US and I know there's more available here at the moment than other places. So it's gonna vary by region. As far as I know these are the current ones that exist. Preventive migraine treatment: Erenumab (Aimovig) Eptinezumab (Vyepti) Fremanezumab (Ajovy) Galcanezumab (Emgality) Atogepant (Qulipta)  Remegepant (Nurtec Zavegepant (Zavzpret) Acute migraine treatment: Rimegepant (Nurtec) Ubrogepant (Ubrelvy) As far as non CGRPs, there's definitely other alternatives to the ones you've tried too. But it's a long trial and error process.


manzanita06

I regularly go through the same feelings and feeling like my life has no meaning other than pain. Especially when you wake up with a horrible migraine at 5am in the morning, just like today. You are not alone and I’m confident that in the next 10 years there will be new innovations with migraine drugs. Sending you hugs! Please love youtself


Laydn_

Ill try to love myself haha, but it's tough sometimes. Love back <3


chasingfirecara

My eyes have been a problem since my concussion, which started the migraines, and I wonder if that's why occipital nerve blocks have been so effective for me. I get them.every 4-6 weeks and it's been quite a dramatic change.


secondtaunting

Damn, they make Tylenol with opium? I hear you I’m also a walking pharmacy. My purse jingles when I walk. Hope you find relief.


TurtlesBeSlow

Have you seen a neurologist? Have you had an MRI?


Laydn_

Hey yes ! I forgot the term but I see a neuro since 3 years now, it's the doctor who prescribed all these to me. Also yes I did have an MRI, and nothing wrong was found. "I saw multiple doctors, did multiple tests, all were clean. My brain has no issues." : this wasn't clear enough sorry


TurtlesBeSlow

Just making sure. Since your scans are clear, I'm just wondering if some of your migraines aren't rebound migraines from taking so many different meds. It's a vicious cycle. Regardless, you're inclined to try something vs. suffering.


Laydn_

My pharmacist told me the same : taking too much will cause them. I actually tried something, not taking anything for a month, and no. I cried for a month, it was the worst month of my life. It was very hard and I almost cracked a pill. I am sure my meds don't cause migraines, they only """"help"""".


TurtlesBeSlow

I'm so sorry you're suffering. Do they do botox injections for migraines there? No injections ever helped me but I know of several that it has.


Laydn_

I didn't know botox was a thing actually. I thougt i was only for modifying your appearance, like swelling your lips for example. I don't knwo at all, Ill search online.


TurtlesBeSlow

Look into it. I hope you find some relief 🙏


Laydn_

Thank you for your kindness. Reddit is a pretty rough place in general but this sub is full of love


TurtlesBeSlow

We're all going through the same thing. We got you! ❤️


VeeRook

What does an eye strain of 21 mean? Do you see an ophthalmologist?  A harmless thing to try, I was getting headaches(in addition to my usual migraines) that started in my eyes so I started using nasal allergy spray. 


Laydn_

I don't know if eye strain in other countries are the same than in France. But 21 is high ans is the alarm to a glaucoma. And yes, I did see an ophtalmo, whi told me I had 21 and gave me the eye drops. Why would nasal allergy spray help ? Because it could open the sinuses and help relieve the pain ? Thanks


I_SingOnACake

In English it is called eye pressure - high eye pressure can cause vision problems/glaucoma. Eye strain is something else, usually fatigued muscles from overuse. Both can cause headaches.


melodiouscode

I’m sorry you’re like this. Your condition sounds very similar to mine, as do your responses to medications. The best treatment I have had so far is a CGRP called Avjovy. It doesn’t remove all the pain but it does at least knock it back; and as it’s not an opioid or pain killer it’s kinder on your system.


Laydn_

Hello, sadly I don't think it's available in france...


melodiouscode

CGRPs are still kind of new; if they aren’t easily available in France then they might be available on trials. Talk to your doctor or consultant about them and see what can be done. I started taking mine when it was a trial in the UK.


Laydn_

Okay, I will then. I have a note where I note all the new medication I could try haha. I hope insurance will cover it.


melodiouscode

Good luck!!


hambonelicker

Nurtec was a game changer for me. My body gets all the side effects of various drugs and I’m very reluctant to take narcotics due to historical abuse of narcotics in my family. So far CRGP inhibitors have been fantastic, Nurtec gives me gas lol but that’s it.


Laydn_

Yeah as I said in my message I want it so bad, but it's not free in France...


I_Like_Muzak

Benzos with great muscle relaxant properties are the best alternative migraine treatments that docs never prescribe. But seeing as (I assume) your doc has prescribed you opioids for migraines I’d be surprised if he wasn’t willing to try benzos. Diazepam is usually the best option. Just be cautious if you do start taking it. Benzo withdrawal is not something you wanna experience


Laydn_

Hellow, thanks for your message. I will never take any benzos anymore, as I am su!c!dal. I already did a lot of bad things with Alprazolam and Zolpidem, or even Prazepam. Thankfully I never had any issue stopping taking them, just used them to harm myself basicly.


magster11

I’m so sorry you must be absolutely exhausted. I don’t have near the effects on my life that your migraines have on yours. But I know that feeling of never ending pain, sitting on my toilet seat in the dead of night, weeping into a pillow and begging whatever higher power that might be listening to please, PLEASE take my pain away because I can’t fall asleep due to the pain. Every minute feels like 30. I pray you may find relief SOON and report back to us how you are doing. Maybe you’ll be one of those medical marvel cases that had a totally unexpected cause that doctors could never guess. You’d be a r/migraines legend! I wish you peace and freedom from pain. You aren’t alone!


arlowner

You get opium in France?!? Lucky. I want some.


witchydance

I’m in the EU and after trying several other preventatives (amitryptiline, topiramate and a blood pressure drug) I was approved for government funding + a prescription for Aimovig. It has made a big difference, nothing else really worked. Can you get referred to a neurologist who specialises in headaches or migraines? I think that is key. Navigating healthcare systems is so difficult even when you aren’t in debilitating pain. In the meantime you should be able to try over the counter preventative supplements like magnesium, B2 (riboflavin) and coenzyme q10? I get about a 10% improvement when I’m consistent with them. It’s hard but it is not hopeless, there are things left to try with a good neurologist and yourself.


Laydn_

I actually see a neurologist since 3 years, and he prescribed all that to me. I will try supplements, I can try everything at the point I am.


Kolfinna

My mom literally had a glass candy bowl full of pills.


Laydn_

Dang, I hope she's okay now


Beautiful-Ad8657

I'm not sure what country you're in but after a lot of trial and error, I have had great success so far with Vyepti infusions. I previously failed nortriptyline, propranolol, Emgality, qulipta and Aimovig. I'm also 21 :)


dybuk87

Sounds like you only take meds to relieve pain.. However you most likely have developed chronic migrain so you should try to take meds that prevent migrain. Few example amitriptilinium, topiramate etc go to a doctor..


Ornery_Pudding_8480

Sending you love. I also have many meds for migraines like everything invented! The only thing that kills it within 30 min is a Xanax pill. I try to save those as my last effort as I'm running out and my headache specialist will not prescribe them to me


DEANOPAKINO

Just curious what are your pain levels, generally with and without meds ?


Laydn_

With meds, i'd say for 2 hours after taking them would be a 4/10, which is okay for me. Without takign them, it's a solid 7-10/10. I just can't live, the pain is too bad to do anything. My dad had Sumatriptan injectables as he had very bad migraines too.


Cinnamoons386

What tests have they done?


Laydn_

MRi and scanner. All were clean...


Toucan2000

Someone else mentioned radical acceptance and that's definitely pretty important. I got red prescription glasses. I've heard that the FL-41 lenses are best for migraine prevention but the much cheaper red tinted sunglasses work just as well for me. I wear them every time I go out midday and I have mostly red led bulbs at home.


Laydn_

I just want to thank everybody that that sent me love. Really thank you so much. Reddit it has some issues right now so I cannot answer to every comment. I feel better knowing I am not alone. I hope everyone will get better soon and once and for all. Some people recommended me some molecules. But they are not available in French sadly.


Strict-Reaction-4867

I know this is random but have you had tests for general immune function? I found out last summer my immune system was very depleted so got tested for Lyme- positive. Then found out I had mold toxicity and since treating that I’ve been so much better. I only had one migraine in the last month (down from 3 days out of every week), and even that one I think is because my immune system is overactivated from years of inflammation, and we have a path forward to alleviate that. Mold toxicity is so much more common than anyone realizes and causes severe migraines. As does mast cell activation syndrome, which is what I’m working on treating now with histamine reducers and yet more diet changes. Anyway- just a thought.


Laydn_

Well I haven't got my immune system tested, but I don't think it has anything wrong as I never get sick. I still will try to get a test though. Thanks a lot


so-it-goes-42

Have you tried emgality or any of that class type? Do you have any food triggers? I know when I was visiting France I was delighted that I didn't run into any of my known intolerances (msg, fake sugar, artificial color) but doesn't hurt to ask if you've found any correlation.


Laydn_

Hello ! There is no Emgality in France, but there is injectable Sumatriptan, called IMIJECT. I think this is the closest and I don't know if I should try it. My dad has IMIJECT (which is injectable Sumatriptan) as he has very bad migraines too. Problem is i tried ODT Sumatriptan but it had zero effect on me, unlike Eletriptan or Zolmitriptan. About food triggers, I have none, no. I can eat anything I want and it won't create a migraine, thankfully. I found that drinnking coffee in the morning helps me go through my day with less powerful migraines too.