Chiari Online Support Group

New and looking for tips

Hello
Just became (sort of) diagnosed with Chiari. Started getting unbearable headaches head/neck/upper back pain about 3 weeks ago. 3 of my sisters have Chiari and one of them sent my scans to her specialist and he said I had a variant of Chiari. Right now I’m waiting for my appointment with him on Jan 5th.
Having a really hard time coping. I’m 21 and was in college until I had to take an incomplete for this semester. My symptoms are so bad. My headaches and pain get worse when I stand or sit so I’m forced to lie down almost 24/7 and can’t go out anywhere. I also get so light headed when I stand up I feel like passing out. Does anyone else experience this?
I feel like my whole world has been flipped upside down and I’m having trouble not getting upset or angry about it.
Any tips would be appreciated thank you

I am so sorry you are going through all this. I am new to this as well, and some days are so much worse than others. Have you gone to your PCP yet? I had to go see mine to get me on medications to just get me through till I see a specialist… I can’t get into mine till the end of March! I pretty much live with 2 heating pads right now… one for my neck and lower part of my head for the neck and headache pains, and the other heating pad for between my shoulder blades and mid back. Have you tried heat? Heat works best for me others say ice helps them… it all depends on what your body prefers. I also use peppermint oil on my temples and rub some on the back of my neck… the smell of it helps with nausea, and lessen the pain of the headache too. An added plus… peppermint goes well with this time of year lol, so you smell very festive :wink:! I hope so of this helps you out! Stay strong!

:purple_heart: Rachel

Thank you so much! I’ve been switching beetween heat and ice. The peppermint oil is a great tip I will try that! I’m sorry to hear it’s taking so long to get to your PCP. I recently started a medication gabapentin which seems to be helping a lot. I called my PCP and asked her to fill it for me because my sister (who is also her patient) used the same medication and it helped her so my PCP filled it. Maybe if there are any meds you’ve researched you can call your PCP and ask?
Thanks again for the tips!!! :smile:

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