Update: Saw the doc this morning!

[NikkiNicole]

I heard back from the doctor today, she wanted to know all I have tried for my headache. I laid it out and explained that I feel like I have tried everything. Even the big guns. She wants me to go back in and retest the ALT levels next week, and still hasn't received the TPMT results. She won't start me on Imuran until we have the ALT results back because if my liver is malfunctioning I can't take the Imuran ... or any other drug for that matter.
I am sure it will be fine.
I need a week of sleep

[mrtmeo]

Praying your ALT levels are normal and you can start something to stop the pain.

[Debbie C]

Nik,are you able 2 take a couple days off and have a long weekend to relax. Like a Fri and Mon ? Hope you get the results soon. Did they think about a mri of the brain ?

[NikkiNicole]

I am actually off work Friday and Saturday and don't work until Sunday night so I plan on resting as much as possible on those days. There is laundry that needs doing but that is easily done while resting. Unfortunately, I have to hold over AGAIN tonight and work 12 hours because we have two people out sick. One who is actually sick and the other who has the man-flu. The rest of us are working ourselves to the bone ... it's ridiculous.
I emailed doc again this morning because my headache has ramped up. The eye pain is near constant now and it feels like bolts of pain are trying to escape out the back of my head. My right eye is slightly blurrier than the left now so I had to take out my contacts and put on my glasses. Still blurry.
My misery continues. I even did as the doctor suggested to try and get rid of my headache w/ no luck.
Kill me now. If these are cluster headaches, I understand why people call them 'suicide headaches' you just start wishing for death to numb the pain. (no, I don't actually want to die, I just want to feel no pain!)

[Thinker]

I agree with Debra C asking if they did a MRI of your brain or a CT scan of your head. Right after I was diagnosed they did a full body CT scan, told me I would glow by the time they were done. I'm glad they did though because Wegs can affect any part of your body and you never know. I'm concerned to hear about your severe headache that seems to be getting worse and blurry vision. Keep us posted and sending positive healing thoughts your way.

[mrtmeo]

What medications have you tried for the headaches, antihistamines, opiates, naproxan, ibuprophen, tylenol?

[Debbie C]

Nikki,you said you were going to start putting yourself first.So if you are still this bad by the time you have to work Sunday...CALL OFF. All the hours you are putting in is not helping at all and until you find out what the problem is you need to "chill". And why do you have to wait until next week to get rechecked ? Have you tried taking any benedryl in case it is a bad sinus infection ? Feel better and get some sleep

[NikkiNicole]

I have tried ibuprofen both small dose and big. I've tried aleve. I've tried Tylenol. I have continued with sinus rinses. I've used hot and cold compresses. I even drank a cup of caffeinated tea to see if that would help. Nope. Nothing. The only time I found relief was when I took a Norco and passed out cold. When I woke up, it was back.
As I sit here now, it feels more sinus related as my teeth are throbbing, my face feels stuffed full of cotton (yet no congestion) and the rest of my head feels like it is being squeezed like a zit. There is also a lot of pressure behind my eyes right now.
7 hours until I will be in my pajamas for 2.5 days.

[mrtmeo]

I have tried ibuprofen both small dose and big. I've tried aleve. I've tried Tylenol. I have continued with sinus rinses. I've used hot and cold compresses. I even drank a cup of caffeinated tea to see if that would help. Nope. Nothing. The only time I found relief was when I took a Norco and passed out cold. When I woke up, it was back.
As I sit here now, it feels more sinus related as my teeth are throbbing, my face feels stuffed full of cotton (yet no congestion) and the rest of my head feels like it is being squeezed like a zit. There is also a lot of pressure behind my eyes right now.
7 hours until I will be in my pajamas for 2.5 days.

It sure sounds like an extreme flare of inflammation.
Did the ER do a CT scan of your sinuses?
I pray they get you on something to stop this before it causes damage.
Sleep well.

[annekat]

It sounds what I've heard people say they felt at the beginning of Wegs, or when it gets bad enough for them to get diagnosed. In fact, while my lungs were getting all the attention right before dx, my head was going through something a lot like what you are experiencing. Only yours sounds worse. But I did have the headaches, achy teeth, pressure around eyes, and a lot of sinus inflammation, in my case, in the maxillaries, making my cheeks red and hot on both sides of my nose. I was on antibiotics and pred, and in the hospital overnight getting tests. I'd think your doc would have thought of all these things we are thinking of, so it's hard to understand why nothing is being figured out.