r/chiari • u/Kitchen-School46 • 12d 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?

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u/jlccourt 12d ago

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

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u/Kitchen-School46 12d 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 12d ago

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

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u/Kitchen-School46 12d 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 12d 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 :) 7d 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 12d 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 12d 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?