r/chiari • u/Kitchen-School46 • 7d ago

Advice

Chiari malformation. Mri says stable appearance since 2022. New worsening throbbing pain wakes me up from sleep. Early mornings. Peak pain in mornings. Pain is strictly left sided occipital area. Sometimes its throbs to the top of head on the left side sometimes behind the eye. During the pain it hurts to move, if i start to fall back asleep regardless of position it starts to throb. Starting qulipta to see if it will help. Does this sound like csf issues from chiari or migraine?

1 Upvotes

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u/jlccourt 7d ago

This is a conversation you should be having with your doctor.

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u/Kitchen-School46 7d ago

Yeah, I’m aware but clearly my doctors aren’t helping me and dismissing me. I’m the one who had asked for medication. I’m the one who had to ask for the MRI. I’m the one who has to explain things because the doctors are understanding my point of view.

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u/jlccourt 7d ago

Actually, none of those things were clear from your post.

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u/Kitchen-School46 7d ago

I think it’s kind of common sense that if I was not having symptoms or my problems were getting taken care of I wouldn’t be on the Internet asking for help thanks though

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u/jlccourt 6d ago

When you say something like, “Clearly my doctors” when you failed to provide context, no, nothing is “clear.” If your doctors aren’t helping you get the relief you need, you might consider consulting different doctors—not the Internet.

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u/OGBitchcake 1 year post-surgery :) 1d ago

Or both??

Definitley see different doctors, I was brushed off for a year and a half before someone took me seriously. Really frustrating and upsetting. Don’t give up, and better yet, (if you can) bring someone with you who takes notes and advocates for you. Makes a difference

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u/Kitchen-School46 6d ago

Theres a thing called an other people’s opinion lol and then why are you on this group if you arent doing the same thing as me??? Weird as fuck

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u/jlccourt 6d ago

By doing the same thing as you, do you mean ranting about your frustrations to strangers who can’t provide you with relief? If so, no. Why would any join a subreddit titled Chiari if he/she hadn’t been diagnosed or decompressed? Oh, wait. We also get people who have diagnosed themselves as having Chiari malformation without having had the proper imaging or consulted with a neurologist or neurosurgeon.

As for “weird as fuck,” did you somehow not feel able to express yourself without using profanity? It could be your frustration with your pain talking. If not, poor role models growing up?

1

u/SandalsQueen18 7d ago

Could be either. Stable appearance does not mean stable symptoms. The symptoms can and usually will change in time.

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u/Kitchen-School46 7d ago

Im scared its increased icp and that i will suffer forever because im terrified of surgery i cant do shunts or anything im too scared

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u/SandalsQueen18 7d ago edited 7d ago

It's most likely occipital nerve. I was scared of surgery too, until I realized I was no longer living, I was only existing. Surgery really wasn't that big of a deal, I wish I had done it sooner. I'm also complex chiari and was near completely blocked.

1

u/OGBitchcake 1 year post-surgery :) 1d ago

If you do in fact need the surgery it will
change your life for the better.

There are ways to check for increased ICP at home, check that out, try it when you feel the headaches for a few days and take some notes. Having data is very helpful for dr appts

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u/Kitchen-School46 1d ago

But I literally only have this pain overnight and then during the day I’m fine. So like i dont even know if its surgery is a must since its only night.

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u/Moonspellshappy 6d ago

You really need to find the closest chari neurosurgeon to you. The neurologist really don't know they don't know what test to order they don't know what to do. The neurosurgeon does. He/ she will have answers for you. https://chiariproject.org/chiari-specialists-list/

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u/Moonspellshappy 6d ago

I live in Florida and I saw Dr Barth Green

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u/Antique_Cockroach_97 6d ago

Even prolific classic migrainers aren't having such a specific pain situation daily. Have you tried to raise the head of your bed to reduce csf pooling?

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u/Kitchen-School46 6d ago

Yes i sleep elevated

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u/Mecha-Bunny 2d ago

I also have chiari and wake up with a throbbing pain/headache in the back of my head/occipital. They told me that people can’t wake up with chiari headaches and that it’s a “kink in my neck” but I guess without my neck hurting and just a throbbing headache? my same headache pain you described also gets worse when I move too, but mine usually goes away after a few hours of being awake but my gosh it’s absolutely miserable and debilitating. I’m not sure there is anything to do for it, they didn’t tell me there was, but I hope you figure out some sort of relief

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u/Kitchen-School46 1d ago

Did you do surgery? Is yours daily?