Hi Abbi,
I know you posted awhile back. I was diagnosed with Chiari 10-11 months ago now. I’m sorry to hear you’ve had a difficult family situation, I too, had a difficult life situation at that age and even younger, I grew up earlier than I needed to. My father abused my mother and I, and my mother was a hard working single mother most of my life. You sound like a tough young woman, a wise and mature young woman, keep it up.
I know what the headaches and dizzy spells are like they are horrible, and I usually get migraines alongside them, and both sunlight and light in general make them worse, as well as bending, lifting, etc. I’m glad to hear you’re getting into a doctor so quickly! Many of us have not been that fortunate or even lucky. I’m going to my fourth neurosurgeon with my chiari diagnosis and over a dozen symptoms that I have that progressively worsen each month.
Make sure you write out any questions you have for the doctor, whether the questions are about your diagnosis, symptoms, treatment options, surgery, etc, always write out the questions you have, bring them with you, and ask them to your doctor. I was told by a few on here and another support group to type up my symptoms, if you want, type your symptoms up and describe them or explain them to the best of your ability, it does help the doctors. Be patient, be positive, believe in yourself, this journey of getting treatment and/or surgery if needed for Chiari and finding a doctor that can help you effectively can be stressful, emotionally hard, but you are strong and you will get through this. You have everyone here in this support group to help you, to vent if you need it or to have someone who will listen.
I utilize hot/cold packs that my mom bought. I will use the heating pad on my head when I have really bad headaches or extremely bad head pain, while it doesn’t get rid of the symptoms, it does take the edge of the pain, or I’ll sleep through it, and when I wake up the headache and head pain is a little less. Despite having so many symptoms, I run every other day, it keeps my weight maintained, helps me clear my head, helps me destress, and even though my symptoms flare up afterward, I feel stronger, I feel like I haven’t given up, and it just keeps me positive mentally.
Every time a new symptom starts, I type it to my symptom list and describe it. And it’s tough, but I try to manage my symptoms day to day, and work with them, being stuck home all day drives me batty in the best sense (lol). I’ve reached out to a Minister to help me find a neurosurgeon, I’m reaching out to professional contacts, and even though my support group is small, find a support group whether it’s here, one locally where you meet in person, or its a few close friends and a few family who understand. Support group is important, regardless of what form it comes in. Hope this helps! Always here if you need someone to talk to or someone to listen to.