Occipital

[NikkiNicole]

Has anyone ever have occipital neuralgia?
I am having a horrible horrible horrible day. Three nose bleeds this morning, horrible pain in my nose, my eyes burn and my eyelids weigh 1000 lbs, it feels like someone stabbed me in the ear and then ... just when I thought it couldn't get much worse, suddenly .... there was a Spectacular pain at the base of my skull that felt as if someone had taken a very hot knife and slid it between my skull at the top of my spine. The pain radiated up the back of my head and down across from the front of my shoulders. My neck became stiff and I can't get my chin all the way down to my chest without pain moving down my back.
The pain is right where the occipital nerve is.

Of course, I had been emailing when my rheumy already when this happened. She has me watching for fevers and if I get one, I am supposed to go right to the ER. (You know, that place where no one knows how to handle me). Labs have been ordered and I have to go get back on prednisone tomorrow.

This pain is awful.

Now my joints are begging to be noticed. My knees are throbbing (I haven't been able to do much in the way of walking or jumping or crawling today) and my jaw is killing me.

I'll take all the other crap if this pain in my skull/neck would go away. :predrage:

[Dirty Don]

Sounds like a flare to me if not something else then. You need reactive docs, not wait and see docs. You've been going thru way too much for this to still be a question in yours & the docs' minds. Take some time off & go to the City or somewhere where there are docs who can get to the crux of what's going on with you. Hang tough Nik.

[Pete]

I agree with Don. You may have something else going on. You need docs who will really give you a thorough exam to figure things out. Be good to yourself!!

[NikkiNicole]

16 vials!
That is how many vials of blood they took from me! WTF.
I had to do a bacterial blood test to rule out a bacterial infection in my blood. Which , honestly, I would think that all the antibiotics I have been taking would kick that to the curb.
I treated myself to a yummy coffee beverage that isn't on my clean eating plan because my head is killing me.

[MikeG-2012]

WOW! That is a lot of blood for anyone! I hope they are checking inflammation markers. I'd be willing to bet that your inflammation markers are off the chart!

Also, I keep forgetting to tell you that Alkalol solution may just may, help give you a little more comfort in your nose and sinuses. It has menthol and other soothing stuff that does help me when I am irritated in teh same way.

I sincerely hope you can get some relief!!!

[NikkiNicole]

Urinalysis, CBC, Alt/Albumin, ANCA, Thyroid labs, and a few others I'd never seen plus 4 vials for the cultures.

[NikkiNicole]

CRP was in there too, creatinine of course ... uhhhh ... I'll know more as they come in. A lot of them were my cancer labs too. I have to have those regularly

[NikkiNicole]

Coughed up blood twice today, just a wee bit. Mucous was clear with bright red blood in it. If it came from my nose bleeds yesterday I would think it would be brown by now. Clear is good, no injfection right? Ugh. But ... unfortunately, that's not all.
I just got a major dizzy spell and the severe pain in the occipital area returned. I can't move my head right now or I'll feel like the room is spinning again. My ears are muffled (like when you're high up in altitude) and won't pop. This could by why I'm dizzy.
My eyes also feel like they are going cross-eyed. I've cleaned my contacts 4x today. I don't think it's them. Unfortunately, I left my glasses at home today so I can't swap out to them to see if my vision corrects.
I'm going to burst into tears if all that blood work shows nothing .......................

[vdub]

I'm going to burst into tears if all that blood work shows nothing ...
Yes, that's the worst thing -- not knowing and not having a clue..... I hope they find something soon, Nikki!

[annekat]

Nikki, this is just too awful and this stuff has been going on too long. Can you somehow get in to the vasculitis clinic at UCSF or others listed in the Bay Area on the VF site? Or is it even WG? Someone needs to give you a good working over, maybe some time in the hospital where a lot of tests at once can be done. Why the ER did not just admit you is beyond me. But maybe I'm speaking too soon without yet knowing the results of your blood work. I hope it shows something.... it MUST!

[NikkiNicole]

My rheumy just emailed me this late at night which is nice. She wants me to rest for a couple days and get back on prednisone immediately. I ran out of tiem and didn't get to pick it up on the way to work. I'll grab it tomorrow on the way in. Sadly, I don't know if I can get the days off ... we are SO short staffed and people are calling out sick left and right.
The funniest part is when they say they have what I had. Nice, no? No clue, these people.
If I cough up more blood I'm ordered to the ER ... if I am no better next week I am to get down to see her immediately.
Please let there be some explanation ... please

[Bing505z]

Waiting on blood results to come in or to make sense is the old way and more than likely you will not survive it. Sit and wait and the damage will be severe, I lost my upper lobe of my right lung and my kidneys were taking a dive (I was not even able to walk) until I got with the Docs that were willing to tackle this right....and it was a Pulmonologist who lead the charge. My Docs go to weekend conventions for GPA all the time and tell me those who go by the old ways of watching blood panels will not make it. ST Luke’sin Houston, a Lung specialist tells me they teach their Docs to automatically look at GPA when patients have unexplained sinus inflammation. Instead of scratching their butts trying to figure why the cultures show no bacteria growth, they should be getting pathologists in pulling tissue samples. In thebeginning I had muffled ears (GPA attacks the ears), I had a nose so painful I would kill you if you tried to touch it, my eyes were red and heavy with pus(classic GPA), I had bloody sinus drainage, I coughed up blood (bright red), my head hurt soooo bad I couldn't sleep, and I had what I read that you had Nicole: shortness of breath. Finally I seen a Pulmonologist who was referred by an ENT, he admitted me immediately to the hospital, did a bronch and pulled samples from my lungs, and had the ENT go in and pull samples from my sinus.Those samples were given to Disease specialists/pathologists in Houston to study and week later the results were in: GPA Vasculitis.... and no blood test / ANCApanel etc showed anything. My pulmonologist started the treatments and referredby to my vasculitis doc and then he took over with Rituxan. Get the Docs who are going to tackle this, then let the specialists/critical care Docs take care of the damage and then turn it over to the Rheumatologist to treat the GPA.This is worse than Cancer, believe it. Waiting and relying on old test panels is the old trend, stick with those ways and you may not survive it. Don't wait to feel good about hearing another’s story saying "Well I had this also,and I’m doing alright". Then you feel at ease upstairs with a false sense of security, while your body is still rotting...you surely will not survive that. It’s sad to see people being dragged for a year or more while the old wayof thinking doctor is trying to figure out what test to run next because theyare stumped....sad. The short term damage may not get someone, but definitely the long term will... we've all seen it here unfold.

[drz]

Sadly, I don't know if I can get the days off ... we are SO short staffed and people are calling out sick left and right.
The funniest part is when they say they have what I had. Nice, no? No clue, these people.
If I cough up more blood I'm ordered to the ER ... if I am no better next week I am to get down to see her immediately.
Please let there be some explanation ... please

i highly doubt if any of those people using sick time are any worse off than you, may be more contagious, yes. But you sure sound ill enough to take sick leave and take care of yourself. That has to be your number one priority. As the next post indicates, being on death's doorstep before getting proper diagnosis and treatment is not a good way to do things. Those of us who did it that way due to inept medical care can strongly support this viewpoint. I am glad some one is taking time to do more evaluation and hope you start getting some relief soon. As you well know, us forum members care about each other and want everyone to get the best care they can to try minimize the devastating and horrid effects of the big Weg dog tearing at our lives.

[Bing505z]

Link: What can I do about it? | Rheumatology and Arthritis Information | Rheuminfo (http://rheuminfo.com/diseases/wegeners-granulomatosis/what-can-i-do-about-it)



Treatment of Granulomatosis with PolyangiitisNow is probably the best time in history to get granulomatosis with polyangiitis. The approach to treatment has changed and the medicines available today are much more effective than in the past.
People with granulomatosis with polyangiitis can lead active and productive lives with the right kinds of treatment. Whatever treatment approach you choose it is essential to remember two key points: treat granulomatosis with polyangiitis early and treat it aggressively. Don’t wait. There is great treatment available that can help get you back to leading a full life.
Why is it important to treat Granulomatosis with Polyangiitis early?Research has shown us if you treat granulomatosis with polyangiitis early you are much more likely to get into remission. Even a few months can make a difference. Here’s an analogy. Imagine you are sitting in your living room enjoying a nice cup of coffee. You look over to the kitchen and see a fire burning on the stove. What do you think you’ll do? One option is to just sit there and wait until the fire gets worse and spreads to the walls or the ceiling. The second option is to grab the phone, dial the fire department, and grab the fire extinguisher.
You can think of granulomatosis with polyangiitis like a fire in your small blood vessels and organs. You want to get that fire put out as quickly as possible so it doesn’t damage your body. Once the damage from granulomatosis with polyangiitis is done it cannot be reversed. We want to stop granulomatosis with polyangiitis before it damages your blood vessels and tissues.
Why is it important to treat Granulomatosis with Polyangiitis aggressively?Using the same fire analogy, we’ve decided to call in the fire department. Now we need to make sure we have the right tools to put out the fire. We don’t want a bucket and water. We want a fire truck with a big hose. We might even want more than one fire truck. The faster we can get that fire out the better things will be in the long run.






If your Doc's approach doesn't fit what's described above: GET another Doc!

[NikkiNicole]

My blood counts are fine, my CRP is just barely elevated, my ANCA is at the top of the normal range for the first time in two years ... I am at my wits end.

[annekat]

My blood counts are fine, my CRP is just barely elevated, my ANCA is at the top of the normal range for the first time in two years ... I am at my wits end. Interesting, Nikki. It could be something else altogether! Someone should be trying to find out what! I know sometimes people are flaring before it shows up in their blood work, but this has just been too extreme and going on too long for that to seem to be the case. It would seem a good internal medicine doctor in a hospital setting with all the tests and resources available in one place would be a place to start. That is how I got onto the likelihood of having WG. I only had to be in there overnight, the internist guessed it by the lung CT scan, although my ANCA was low, and the follow up and dx was done by my ENT and other docs. So if it is NOT WG doing this to you, perhaps some smart doctor in that kind of setting could do some detective work on you and come up with something. I sure hope you can get to the bottom of this before whatever it is gets more serious and debilitating.

[whatthewhat]

Hang in there, Nikki. I support you in demanding more testing and getting treatment.

[NikkiNicole]

Prednisone seems to be helping ... so, my rheumy is hopeful that it is just some sort of wicked infection

[Alysia]

My blood counts are fine, my CRP is just barely elevated, my ANCA is at the top of the normal range for the first time in two years ... I am at my wits end.

Nikki, labs can be ok and still the wg can be active, smoldering or even a start of a flare. anca is not always indicative. that fact that pred helps point to wg. at least this is what I think. I wonder how others see it.... I think you need a serious treatment like rtx.

[annekat]

Nikki, labs can be ok and still the wg can be active, smoldering or even a start of a flare. anca is not always indicative. that fact that pred helps point to wg. at least this is what I think. I wonder how others see it.... I think you need a serious treatment like rtx.Alysia, I hope that this isn't a WG flare and that Nikki's rheumy is evaluating this correctly. I think she has told us in the past that her rheumy is friends with a top WG expert at nearby UCSF, Dr. Chung, and consults with her when necessary. I hope I'm not remembering that wrong. I think prednisone can help with lots of things besides WG or other vasculitis, and it was prescribed for me several times for ear and sinus infections long before my WG dx. My mother took it for awhlle after having pneumonia, not WG, and it helped her get better. Nikki has had such extreme symptoms lately that it seems like if it was WG, it would be more than smoldering, and that it would show up in her blood work. There could be some neurological problem or other serious issues going on. I still think she needs to be checked out and monitored more thoroughly for other issues besides WG. I'm not saying that her WG is not active or that it might not be causing these problems, or that she might not need some WG meds. We are rightly advised on here to think of WG first as a possible cause of symptoms. But we should not discount the possibility of other serious issues that could be separate from WG. Those are just my impressions, off the top of my head.

[mishb]

Nikki, it's nearly a week later since your last post.

I hope you are starting to feel a bit better or that pred has knocked, whatever this is, on the head.

Alysia is correct in that my Rheumy has always said, if the pred increase starts to work, then it is probably Wg causing the issue.

[Debbie C]

Yea Nik.are you feeling better.I was wondering since you said you had coughed up blood if they bothered doing a lung scan or x-ray ? I agree with Anne,drs give steroids for anything so you definitely need more tests and take a few sick days, YOU are sick,if the others at work can call off so can you.