Addision's pulsating headaches!!!

[tracey16]

Several months ago I was rushed to hospital with a pulsating headache that was like nothing I had experienced before.  I also had vomiting at the time and felt generally unwell. The hospital ran CT scan, lumbar punch and MRI scans. The tests came back clear, except for a small cluster of spots (T1 hyper intense lesions)
The headache never quite went away and then I was admitted back twice with the same symptoms within two weeks. The hospital thought it was a viral infection in the brain and I remained in hospital for a week, with the headache never quite going away.
I saw several specialists over that time as my liver function had risen to around 840 and I was not getting any better. Then they ran a series of tests and then I was diagnosed with Addision’s Disease, due to inactive adrenal function
I started on cortisol immediately and felt some improvement. Several weeks later the headaches started back. My headaches are at the same time each day. They usually start at 4am in the morning and pulsate through my whole head, glands are up in my neck and the jaw joint near my ear hurts. This pain usually stays until 7-8am in the morning. I then get a headache sometimes around lunch, pulsating, like it is my pulse, pulsating through my head and whirling in my ears. The other headache for day starts then around 7-8 pm with same symptoms with pain in the neck.
My doctor has told me that he thinks I still have a virus, but headaches remain. They are painful and they just continue... It is very depressing.. Can someone please help

[tracey16]

An Endocrinologist diagnosed me a couple of months ago. But I also saw 3 other specialists. I've had an ACTH stimulation test twice now and even though it has slightly risen I'm still in the category and don't feel that much better. I decided to stop taking the cortisol as my weight went up by 12 kilos in 12 weeks! I wake every morning around 4am head just pulsating and my glands and jaw are so sore. I'm sick of taking medication. Taking the cortisol or not taking it has not gotten rid of these headaches. You can bearly function by the time it goes and then it comes on for the next round. I hardly work at all or not at all. I'm lucky I have income protection, but feel so over it! My mother has been diagnosed with Shograns and Fibromyalgia. My grandfather had lopus. I have no idea if any of this is related to me, but sick of the bandaid treatment. I'm booked back in for another MRI in the next fortnight... I'm almost wishing something will be wrong, insane thought, but just want a cure... I have children too, to aid to the guilt of always something being wrong...  Have you been diagnosed with Addison's? I feel for you having these headaches for a year! Have you had low sodium at all, it can cause Hyponatremia?

[ocbethany]

Addison, I feel your pain!  I have been struggling with horrific headaches for the last year which resulted in C5-6 fusion and craniotomy and still have debilitating headaches  I have had so many lumbar punctures to see if I have a spinal fusion leak b/c i have all of the symptoms of one but there isn't one ;( I am working with a Pain Clinic to try to figure things out.  What type of specialist did you see that diagnosed you with Addison's Disease?  I have been out of work on and off (more off) over the last year.  And am I trying to find the cause and not just sticking a "band aid" on it.