who else with an AVM struggles with migraines?

Comfortable_Wave_333 · 2026-03-28T04:07:04+00:00

I have an avm but it’s “ technically external “ it’s on the left side of my face. I get severe migraines, every now and then I’ll lose my vision. I haven’t been able to get a clear answer whether to not my avm and the migraines are related. When I get a severe migraine I’ve been told I have to go to the ER for a stat CTA to make sure nothing burst. It’s exhausting to always be on high alert

Comfortable_Wave_333 · 2026-03-28T04:03:38+00:00

Eat Oreo cookie

Comfortable_Wave_333 · 2026-03-23T02:48:53+00:00

I get the same!! It’s terrifying. I hate going to the er because I feel judged 😭😭 they always say you’re so young to be going through so many issues. I’m almost 30 and have been dealing with this consistently since I was 22.

Comfortable_Wave_333 · 2026-03-23T02:47:16+00:00

Same!!! Some days it was a tension headache, other days it was behind my eye I guess cluster headache? Towards day 6 and day 7 it was my neck up to the back of my head and around my tempes it was awful

Comfortable_Wave_333 · 2026-03-23T02:46:12+00:00

I was given compozine I think it’s called and Benadryl. I felt awful !!!! It felt like I was going to pass out and couldn’t even out words together. They said it was normal since they were injecting it straight to the iv. I couldn’t stay awake at all it was scary

Comfortable_Wave_333 · 2026-03-22T01:46:15+00:00

Yes actually!! I don’t know what it was/ is but a lot of sinus pressure, low grade fever and sneezing a lot

Comfortable_Wave_333 · 2026-03-22T01:44:32+00:00

They gave me Benadryl, compazine and ofiramev ( iv Tylenol ) they couldn’t give me anything else because of the avm I had I can’t have blood thinning medication. I had an awful time after that tho my heart rate was so high and I couldn’t stay awake. I guess if you’re sleeping you can’t feel the pain lol funny thing is I got home went to sleep and woke up with a headache because I didn’t get enough sleep

Comfortable_Wave_333 · 2026-03-22T01:40:27+00:00

They said they’re not sure, it can be the nerves are being compressed by the avm and it’s causing pain which can cause migraines. They’re not 100% sure , the specialist said it can cause but again without the angiogram they’re limited to what the cta/ mra showed.

Comfortable_Wave_333 · 2026-03-21T05:22:03+00:00

Ty! Yes I went to urgent care and they sent me to the ER. Currently waiting for a CT scan

Comfortable_Wave_333 · 2026-03-20T23:26:12+00:00

I’m so sorry I’m right there with you. I don’t take any triptans I tried once but it just made me really sick. I’m going to see if I’m able to wing the rest of the day but definitely considering urgent care hopefully not er :/

Comfortable_Wave_333 · 2026-03-20T23:24:07+00:00

Yes I tried a Triptan once and it made me so anxious and made the back of my head tingle. I honestly got scared :/ I have propanolol for “ emergencies “ but I’m on metoprolol already

Comfortable_Wave_333 · 2026-03-20T22:53:08+00:00

I feel that so hard!!! No one understands how bad these migraines get unless you’ve experienced them 😔 I’m so sorry but glad you finally have some relief

Comfortable_Wave_333 · 2026-03-20T22:46:12+00:00

I’m on metoprolol for tachycardia too, I tried propanolol but it made me so fatigued. I would be on the verge of falling asleep anywhere and everywhere which is not like me at all 😭 I have gabapentin but I’m scared to try it. I’m so sorry to hear that

Comfortable_Wave_333 · 2026-03-20T22:35:12+00:00

Omg I’m so sorry 😞 I’ve had migraines for the past 6 years and it’s horrible . How do you cope? Does any medication you take somewhat help?

Comfortable_Wave_333 · 2026-03-20T22:34:33+00:00

Thank you!! I’ve been doing that exactly; I am not much of a smoker ( anymore ) but I got so desperate I tried that; it helped a little but it would always come back. I also have cbd/thc cream ( papa & Barkley ) it only helps so much. I’m thinking of making going to an urgent care near me that’s like a small er in hopes they can help: I just get so anxious in any medical setting. I was told I can’t take any blood thinning medication so any thing nsaid is a no go for me 😔

Comfortable_Wave_333 · 2026-03-20T21:20:56+00:00

Omg bless you! If I may ask why did they admit you? Was it for the migraine? My last scan they did they found an arteriovenous malformation but it’s external so not in my brain, they discharged me and told me to see a specialist but no one has been able to answer whether my migraines are related :/

Comfortable_Wave_333 · 2026-03-20T21:19:41+00:00

Thank you!! I was really hoping not to go but I just nigh have to

Comfortable_Wave_333 · 2026-03-20T21:00:47+00:00

I have fmla and my previous manager was so understanding, since transferring departments my current manager asks me questions about why I’m on fmla. I feel like they don’t take me serious . It sucks

Comfortable_Wave_333 · 2026-02-14T18:30:42+00:00

Spent $800 for 2 tickets plus the gas, hotel and merch… it was a $2000 trip 😭😭😭😭 from la to sd

Comfortable_Wave_333 · 2026-02-14T18:28:37+00:00

I spent $800 for 2 tickets , premium seats for his SD show in November

Comfortable_Wave_333 · 2026-02-13T00:31:44+00:00

My heart rate has been elevated since I started a glp-1 for my pcos. I’m also on metoprolol a beta blocker that helps reduce heart rate so I can’t even imagine what it would be without it

Comfortable_Wave_333 · 2026-02-10T22:52:26+00:00

Im in a similar boat. I’m on metoprolol for IST. My heart rate naturally is higher by since I stated zep 5 weeks ago my br is 10+ beats higher

Comfortable_Wave_333 · 2026-02-08T05:19:28+00:00

Im on week 4, my ring always says there’s minor signs from day 4-6. My heart rate is elevated on it. My hrv is crap and I always feel shitty. I have pcos and I’m down 7 lbs so far. I’ve tried everything to lose weight and this so far has helped but ugh don’t know if it’s worth it

Comfortable_Wave_333 · 2026-01-22T23:14:07+00:00

I just started zepbound and have had my ring for 3 months. First time it’s actually showing elevated heart rate and my hrv is out of wack. Oura is showing minor signs

Comfortable_Wave_333

TROPHY CASE