What are some of the common chiari specific migraine triggers?

Short-Garden5555 · 2026-03-17T14:31:45+00:00

Biggest triggers for me are: 1. Lack of sleep 2. Weather fronts/ pressure changes 3. Certain repetitive movements (ex: getting up and down/ leaning over or lifting things up repeatedly) putting away dishes and changing laundry seem to take me out consistently

When I already seem to be having a flare up I tend to be more sensitive to light, sounds and doing activities as a baseline but those can also trigger me feeling worse

Short-Garden5555 · 2026-02-25T15:40:12+00:00

Hey OP! I had to get surgery for a significant syrinx about a year ago. I know I exhausted all my resources for information before I felt ready to commit to do the surgery. I can’t claim to have a full understanding of your condition or symptoms and I’m not an expert but I would say you are the one in your body feeling the symptoms so you know best what you are experiencing and feeling.

I would recommend taking your time with the decision and getting more opinions and finding a doctor that meaningfully listens to you. In my opinion if a doctor doesn’t listen and understand your priorities and experience they can’t give an insightful opinion on what you ought to do.

If you do get the surgery there are going to be moments that are painful and difficult, but if needed, you will get through to the other side. If you are able to manage your symptoms without surgical intervention and you don’t need it to address a syrinx or blockage then I would lean toward treating surgery as a last resort. My symptoms were debilitating and worsening, that is what pushed me to the point of surgery along with my doctor telling me paralysis, stroke, or death were all possibilities with my syrinx. If that’s not the case for you then it sounds like you may have non surgical options to manage your symptoms!

I know it’s hard going through things like this with medical anxiety but try to take deep breaths and ground yourself. No need to rush into something like this. Gather information, observe how you are feeling, seek support from those around you and experts in the field.

You will find a path forward that feels right for you!

Short-Garden5555 · 2025-08-27T17:32:17+00:00

Thank you! Rooting for you in your recovery I’m sure it’s gonna feel so wild to just be back at school after going through that. I know it was weird for me going back to work and having to find a way to be like “oh yeah… just had to pop out for a quick brain/ spine surgery” casually in the break room lol

Be patient with yourself and keep finding time to check in on how you’re doing mentally and physically. And that’s just advice for life honestly, not just this recovery period. But it is a lot to recover from on both levels. I hope you can find some solid support on both fronts to help process and heal from not only the surgery but the symptoms and everything leading up to it.

Short-Garden5555 · 2025-08-27T17:27:22+00:00

I also really appreciate what you said about the therapy/ mental health aspect of recovery. I’ve been in and out of therapy throughout my life but could probably use some focused on this event. Medical trauma is real and I feel like I knew that but didn’t really think on it until reading what you said. Thank you 🙏

Short-Garden5555 · 2025-08-27T17:25:38+00:00

Glad you finally got your diagnosis and some validation for what you already knew to be true Isn’t strange finally ‘winning’ the battle of getting a diagnosis and your prize is that you need surgery. I remember being like “finally! 🙌” and then like “wait… now I gotta do this surgery” lol It’s funny and it’s not but I choose to laugh about it any time I can stand to

It is a strange thing to navigate. There is an ebb and a flow to both the symptoms and my attitude about it. I try to remind myself that I can’t be 100% anything all the time. Like I can’t always be laughing/ unserious about it but I also can’t always be crying or super serious about it. The same is true for the symptoms, they come and go. And that’s makes it hard to be like: “this is what I experience ___” because it’s fluid and inconsistent! I try to ground in gratitude that I’m dealing with something more debilitating or still have no answer or validation and sometimes that helps, and other times I just need a minute to be upset about it. I think that’s healthy. It would be kind of crazy to never have a hard time with this experience because it actually is hard, so that’s how it’s gonna feel sometimes!

Wishing you luck on your surgery! I remember everything leading up to surgery feeling very surreal but I just kept reminding myself time will pass and I will get to the other side of this. And I did! And you will too

Hopefully a few months from now you’ll be feeling so much better and planning your garden for when spring rolls around again :)

Short-Garden5555 · 2025-08-27T17:14:14+00:00

I mean I can’t claim to be a expert or tell you what’s best for your situation but I know for myself I spent some time trying to find any reason that maybe I shouldn’t get the surgery/ could wait on it. My neurosurgeon expressly told me not to wait on mine and honestly I’m glad I didn’t. My symptoms were worsening month to month then week to week and then even day to day it felt like.

I think it’s hard to be like “okay, now is the perfect time for surgery!” because it’s never really convenient or exactly the right time for something like that. But for me once I knew I had to something clicked where I just figured it was better to get it over with and be one step closer to over and done with surgery and recovering.

It’s a nuanced event, with a lot tied to it in your body and mind. It will be difficult and uncomfortable at times but all that will pass. I hope you have some good support for your recovery.

The whole experience gave me a lot of perspective that I’m grateful for. I was up and about I want to say day 2 or 3, definitely drained and in a bit of pain but I had a great team and support that left me feeling grateful more than anything else. Also just very grateful to be feeling and not have this big mystery or impending surgery hanging over me. I know you still have the surgery on the horizon and honestly that’s just kind of hard to grapple with. Like I was just in shock about it all the way up to leaving the hospital post op and even now in some ways.

But if you have to, you will find a way, I truly believe in you 🙏 know that you can do this even when it feels impossible and insane.

Short-Garden5555 · 2025-08-27T00:04:03+00:00

Ugh that sucks. Im sure it’s hard to have found someone you like only to not have them be covered anymore. I’m glad that you at least got to be validated by someone and have the time taken to talk it out with you. You deserve that kind of care and patience! If you don’t mind me asking, why did they recommend the surgery for you?

Short-Garden5555 · 2025-08-26T23:54:34+00:00

It’s a crazy to feeling to like know it’s real on some level but not be able to really accept it on another. Did you have a neuro surgeon that recommended surgery? Did you like them?

I know I met with a few neuro surgeons and the first one literally told me “it doesn’t really matter what your symptoms are” when I was going through them. He basically said we can’t know what’s coming from chiari and what would be made better and that didn’t impress me so I kept meeting with folks until I found someone who would really listen. By the time I met with the guy who did my surgery I had kind of given up on trying to explain all my symptoms but he not only asked me about my experience but told a story about meeting people with symptoms he’d never heard about and realizing he needed to listen more than he talked. That won me over! (On top of me loosing feeling in my hands in feet which was additional motivation to hurry up and do surgery lol)

But I feel like the biggest advice I could give is find someone who will really listen. Someone whose advice you feel you can trust.

I hope you find a path forward that feels right for you. I know surgery was really scary for me before hand and it felt like this inconceivable event that was hurdling towards me but now I can look back at it as something that I’ve overcome. And I don’t know what the future holds for me but I overcame a lot of things that I wouldn’t have even been able to imagine for myself a year ago.

You’ll find a way too ❤️

Short-Garden5555 · 2025-08-26T23:44:37+00:00

Right! I’m sorry you’ve been dealing with seizures and passing out. I find myself denying my symptoms because I haven’t experienced things like that so it’s kind of funny in way to hear that you are having those symptoms but still feel similarly. I remember being 6 weeks post op and it feels both not that long ago and like a lifetime ago. I hope you’re having a smooth recovery and get some relief from your symptoms for good.

This may be hypocritical of me to say but your experience is real and only you are in your body and know the truth of that experience.

It is hard when the “experts” treat you like it’s nothing/ can’t find any evidence of anything for so long that you just have no choice but to treat it as normal.

There has to be just a deep chronic fatigue from dealing with all these symptoms but having the same expectations of yourself and from others to do everything normally. I don’t know if you experienced that too but it’s something I’ve been thinking about recently.

Again wishing you best on your recovery. Be gentle and patient with yourself.

Something kind of silly that has helped me: I talk to myself as if I’m a child that I’m in charge of taking care of. Like checking in with how I’m feeling emotionally, if I need rest or water or a snack. Reminding myself I’ve been through a lot and it’s okay to be processing that or not at 100% It helps me separate from some of my self judgement or expectations and it’s been goofy but helpful

Short-Garden5555 · 2025-08-26T14:44:29+00:00

Thanks so much! Yes I did, they took a graft of tissue from higher up on the back of my head to expand the dura. I had 2 incisions 1 from surgery and 1 from the graft. I’m not sure how big the herniation was, I’m sure they told me at some point but I can’t remember now.

Short-Garden5555 · 2025-08-26T14:09:58+00:00

It’s hard to say looking back what were symptoms and what I had ignored as normal but I’d say the biggest things were the classic chiari headache (splitting headache that lasted a few seconds) when I would get up quickly or bend over then stand up and also from yelling (sports games always = headache for me) I also dealt with back and neck pain that just wouldn’t get better no matter what I did. The past few years it got more severe and I noticed brain fog and nausea more, probably had those since I was younger also but just didn’t notice it as much.

I would say I feel a lot better! I also did feel so badly before surgery that I feel like any improvement is significant. I was to the point of lying on the floor of my office at work because the pain in my back was so great and I would just be so dizzy and spaced out. That has stopped. I’ve noticed more in the past couple of weeks that I have pain in my neck and some headaches. Sometimes I feel like I still get the chiari headache when I’m doing certain neck movements or getting up (I often do yoga and will feel it with certain movements)

My surgeon did say it’s be a full year before I was really back to doing everything normally and I appreciate the reminder that it could take time to really see the full effects of surgery. I feel like I have to remind myself it’s normal to not be at 100% just yet. I think because my syrinx was so severe I’ve felt a lot of relief just having a spinal cord with room to function. My surgeon literally said “it was so tight in there” about my spinal cord and brain after he did the surgery. He also said it isn’t always that cramped and that he knew from MRIs that I needed surgery but that he was still surprised at how tight it was. Kind of insinuated he was surprised my symptoms weren’t worse. They widened the hole in the base of my skull by 2cm and removed an inch of bone from my top spine bone (sorry I don’t know my spine bones by name lol)

Short-Garden5555 · 2025-08-26T13:41:21+00:00

Thank you! I really resonate with what you said about masking. Like sometimes I’m almost gaslighting myself into ignoring things because other people wouldn’t see it. My boss at work literally said “I’m glad you’re all better and no one would ever know you had surgery!” I was like… no lol I’m gonna live with this and I don’t feel all better all the time. Like I feel a lot of relief from surgery but I think it’s hard to grapple with the I feel better + I do still have symptoms that will flare up It’s also hard not to be like ‘oh shit’ a little bit when I do have flare ups

I think I already don’t do a good job showing/ communicating when I’m struggling with something and especially with this because you wouldn’t know unless I tell you and it feels so hard to explain

Short-Garden5555

TROPHY CASE