I’m so glad I found this group. I have been struggling for 5 years and have seen multiple specialists and spent so much money changing a cure. I have had so many brain scans and spine scans and all kinds of scans except for the 3D CT scan which I asked my doctor to prescribe for m, and I’m getting it on thursday. And I’m also getting an ultrasound of my neck. It will be at a good facility in a good hospital, so I’m hoping that they can see what’s been causing me so much grief for so many years. I’m trying not to isolate myself from my friends and my social life, but it’s getting harder. I’m so dizzy all the time my neck is sore. I have brain fog, sometimes my ear hurts, sometimes my eyes hurt. And I am under so much stress from this, that I cry a lot. I feel bad for my husband. He doesn’t know how to help me. I’m doing my best to keep going forward and investigating until I get a diagnosis. But it seems like I checked so many of the boxes for eagle syndrome and I did have surgery on my neck and my lower face, so I’m wondering if that exacerbated something that was already there. Anyway I don’t know how long it will take to get my test results from Thursday, but I’ll check back and let y’all know what they say. Thanks for listening.
Hi and welcome to the site!
I’m glad that you’ve been able to get a CT done…I don’t know if it’s too late now, but if you’re able to get the CT done with contrast, timed to show the veins as well as the arteries that would be helpful- it sounds like you could possibly have Internal Jugular Vein compression from your symptoms, and a CT with contrast might show this. If it’s too late, not to worry, as the styloids will still show up. Try to get a copy of your images when you’re there, and you can send this to doctors if you need to, and upload images here is too if you want.
Thank you. I’ll definitely report back. I’m already so anxious thinking about the what ifs, but I need a diagnosis. I can’t keep living this way
I feel you. I am on my second day home from work this week because the symptoms are too out of control. After days of this, its taking a lot of intentional mental energy to not let the boredom, the disappointment, the loneliness, and the embarrassment get me down. I miss feeling like I could trust my body to sit at a desk for the day. I miss seeing people. I miss the peace that comes from not having to constantly text “I won’t be there today.” I miss when I had energy to date and when I felt that I had something worthwhile to offer.
On the one hand, thinking about how long I have been doing this and how much of my life I’ve lost to it is really sobering.
On the other, though, I try and feel proud of myself. Despite having debilitating symptoms for more than half my life, I am in a stable place and have had made strides in my career that I’m really proud of. I really think I don’t give myself nearly enough credit for that. I try and tell myself that, given the circumstances, having energy crashes is expected. That the important thing is that I get up and start again every time my body re-traumatizes me.
I am proud. But, man. I am so tired of being strong. I am so tired of having to constantly learn new ways to push through all of my body’s stop signals. Like, yes. I know. You’re supposed to listen when you’re body says stop. And, when I can, I do. But if I stopped every time my body says to, I’d never do anything else. I’d never go back to work and I’d never leave my house. My body panics at the thought of so many normal daily tasks that I’ve had to do during awful headaches and I’m constantly having to consciously retrain myself to not associate writing an email with visceral, traumatic body based memories. But, like, what other options do we have? (Obviously therapy and all but, please everyone, spare me the lectures on that 
)
And that, dear @Kmarty14 , is amazing, you are an inspiration, be very proud 
Guh, you’re gonna have me ugly crying here, for real. This stuff is very emotional.
Many of my friends know that if I begin talking honestly about the impact of my headaches on my life, I often get overwhelmed and cry. It is just…so much.
I hear ya. I cry just about every day 
. It is a lot.