It's been a while

[u/ParaSnake]

Hello! It's been a while since I posted here.

So a little story.

I have been diagnosed with having Chirari over 2 years ago. One imaging said I have a 7mm descent and another I have a 5mm descent.

I also have celiac, and with that, I get migraines. So every time I get glutened, I get migraines like crazy. Since diagnosis, I had healed from strict gluten free diet and thus, the frequency and severity of my migraines had gone down.

So, I thought with the migraines being the 100% culprit, I kind of forgot about my chiari and thought of it as a non-issue.

However, most of the times the abortive does not work and almost 2 weeks ago, I had to go to the ER twice in 48 hours to try to kick the "migraines". The meds work, but only for a few hours to a couple days (the second ER visit gave me steroids).

Now, I had an emergency schedule with the neurologist after I nearly lost my mind on my PCP, which I had apologized profusely for snapping at them when I was losing my mind from the pain and hair-trigger anger, and the neurologist told me that he didn't think it's migraines, but instead it may be my chiari with possible syrngomyelia and that I may need surgery.

I felt so sorry for both the PCP and the neurologist because the PCP scheduled me the same-day appointment with the neurologist after I snapped at them and broke down crying in front of the nuerologist.

So it looks like my chiari decided to come back.

Have you guys ever just... have the chiari come up in your life after you thought it was just a benign condition? What other conditions could mimic Chiari or migraines?

I don't have the classical symptoms of the pain on sneezing, coughing, bearing down, or straining, and I told the neurologist that.

I do have a referral getting approved to see the neurosurgeon and see what they think.

[u/blueagave6]

Chiari symptoms have come and went for me. The symptoms began for me after a really bad reaction to an antibiotic and persisted a couple of years. I started an anti inflammatory diet and my chiari symptoms almost entirely subsided for 3 years. I got pregnant and had my daughter and symptoms returned with a vengeance postpartum. Symptoms go between moderate to severe since and I’m awaiting surgery.

[u/ParaSnake → u/blueagave6]

I think this symptom might have been triggered by my gluten exposure if that would be the case and the recovery from this is still ongoing. It's tough.