I have been suffering from ON for 5 years now and the past couple weeks it has taken a turn for the worse. I thought I was having another flare but the flare is not going away this time. It's frightening to think that I'm going to have to live with the extreme back of head pain, the sudden stabbing behind the ear, the ache in the ear, jaw, cheek, the skin sensitivity across the cheek...... this can't be what the rest of my life will be
I have no idea, I just discovered this app today and thought it would be a great tool to show my doctor what works and what doesn't. I'm going to see a new neurologist today. I went to a specialist a few hours from me that diagnosed my ON. But the neurologist I went to here was stuck on migraines, but I know the difference between the two because I do occasionally get migraines. So my regular family doctor has been doing his best to lean about ON and treat me. But now I need more because the pain is so bad
I had never heard of this, so I looked up some info. Holy cow, it sounds exactly like what I get! At first they said I get migraines and then backtracked on it saying it's a Fibro pressure point at the base of my skull causing them. Can one have both Fibromyalgia and ON? I need to research this some more.
Oh, to add, since I've been tracking my pain I notice it's one of the worst areas I have pain...
I've been battling trigeminal neuralgia for 2 years now and was officially DX fibromyalgia by the rheumatologist nearly 2 weeks ago....I get TN in all three branches on the left side of my face and on bad pain days I also get the pain at the base of my skull going down my neck, could that mean I could potentially have ON on bad flare days? As the pain spreads to the right side as well.
I have suffered from ON, chronic pain, migraines, nerve disorder, head and neck pain. I understand what you are going through. I have been dealing with this for 6 years and my pain is a constant 7 all day everyday. There are times I want to give up then I see my husband and daughter and realize I cant give up. I am alone at my house for over 10 hours a day due to my husband having to work 3 jobs so we don't lose our house. I can't work outside the house due to only being able to be upright for 2 hours a day. If I am upright more than that, my pain immediately rises to a 10. I have tried finding jobs where I can work on my computer at home but can't find valid jobs. I need to bring in at least $800-1100 a month so he won't have to work so much but have not been able to find them. I deal with alot of guilt due to my situation. If you need someone to talk to, please send me a message. I want to find a support group that I can possibly do online via face to face or messaging. If anyone can help guide me with any of this please let me know!