Hey there.
I have not been diagnosed with vasculitis, so apologies if posting this is offensive or inappropriate in any way.
I joined because my symptoms, in some regard, seem a little too similar. Here's what I'm dealing with for over a year now: chronic nasal inflammation/congestion which can be remedied by almost nothing, and severe headaches with any type of exertion and certain movements.
A little background on me:
December 2014 (possible a month or so earlier) I started experiencing extreme fatigue. All I wanted to do was sleep, and did, for abnormal amounts of time. I felt like I had mono (which I'd had when a teen), except I was also beginning to sneeze a lot. I was sleeping with a box of tissue next to me, sneezing and sleeping and watching movies in bed because I didn't feel good. This wasn't normal because I had just graduated college and was supposed to be out looking for a job.
This fatigue and sneezing went on for many months, and finally in late February, I got an upper respiratory infection. It felt like what previously happened had been a build up to that, but for months? I imagine not. I was sick for the normal week or so, put on an antibiotic pack, and recovered. I had about two days of feeling good, and then after hanging out with a friend, was hit with a sinus infection that blocked my nasal breathing completely. Foolishly, I didn't go back to the doctor (not that it would have done anything), and decided to let my body fight it out.
I never got better. My nose stayed messed up, and breathing out of it was difficult unless I was standing and moving around. I got a job, but always needed to excessively blown my nose, which started to have a whistle. In April, I couldn't take the stuffy nose and congestion, caved and got an OTC nasal steroid spray. This helped me for many months, but not all the way. I still had congestion and inflammation. I could only sleep on my right side.
July 2015 comes and I'm working in the city. My nose is always messed up, but manageable with the nasal steroids when I'm up and about, and I'm doing the best I can. I'm on my way to work one day, run down the stairs of the subway, and get a severe thunderclap headache that caused me to get disoriented, it was so intense. I went and got an MRI, a CT scan with dye, a scan of my sinuses, and a doppler done to look at blood flow. Most recently I have had an MRA/MRV of head and neck. Everything comes back clear, or "unremarkable." I still have all of these same problems to this day.
Between then and now, I have seen three ENTs, three neurologists, an allergist, integrative medicine dr, my primary, Mount Sinai headache clinic neurologist, infectious disease, and I am IMPATIENTLY waiting for a rheumatologist appointment NEXT Monday (and a partridge in a pear tree...ya, had to). My diagnoses:
Migraines
Tension Headache
Allergies
Allergies//possible inflamed turbinates that need reduction surgery
Allergies
Being Overweight
Allergies
Bacterial infection when culture of my nose found overgrowth of Klebsiella Pneumoniae
Everything is also made complicated by the fact that I have Psuedotumor Cerebri. I was supposed to get a spinal tap recently to see if my headaches are from spiked or depleted CSF, but once off the antibiotic, I became too sick again.
The only thing that has ever cleared me up, almost immediately, has been Prednisone. When I went to the second ENT, who found nothing wrong with my sinuses through scope or CT Scan, I had to plead with her how uncomfortable and horrible my life was being made by my nose and headaches. After lecturing me about losing weight for half the appointment, she gave me a script for Prednisone at 60mg and tapering. I WAS IN PARADISE. My nose and head cleared up almost immediately, and I thought I was cured for good - was ready to start getting back to life. Four days off of Prednisone, my headaches came back (a little lighter), and almost exactly a month to the day later, my nose started acting up again. It was horrible.
I wasn't put on steroids again, as I have more access from my left than right side of my nose, so grin and bear it, and knew it was just a band-aid for inflammation (I've been set on a long standing bacterial take over). Everything in between was hopping from doctor to doctor hoping for an answer. After the last horrible ENT, I went to my primary and begged for help. She was reluctant to say what to do or where to go, as this "wasn't her area." I wouldn't budge from the table. She looked in my nose, saw it was extremely inflamed, and took a culture. It came back with the klebsiella, and I thought that was it. We were all so happy to have caught it and I was put on three weeks of Levaquin, which also cleared me up at about 70%. Ten days off of it, BOOM, nose is messed up again. After going to infectious disease, and her not being convinced about a bacterial issue, I was told to make an appointment with a rheumatologist. Not only because of my symptoms that lasted too long, but because my hs-CRP is almost 17. I'm also in a high range with my CCP for RA. But i was told that can go high if you have high inflammation period.
I have fired doctors left and right when I hear something as dumb as migraine or allergies. I've never had this problem before in my entire life, especially regarding allergies and have refused to believe that it is something so simple. My whole life is on hold. I haven't worked for months, have been extremely physically limited and uncomfortable, and have been considerably depressed about it. I'm 27 and was just starting to live my life.
I do not want this, but the nose thing especially sounds too similar. I have tried literally everything to see if it's allergies: taking shots, taking allergy pills, getting a depo-medrol shot, suuuper restricting my diet (no gluten, dairy, grains of any kind) and nothing has helped. Except for a round of antibiotic (a bit) and especially that round of Prednisone.
Does any of this sound familiar or like I could have this? I do not want it. At the same time, I cannot live like this. There is a part of me that will be relieved to get a diagnosis, just so I can get on steroids, as I know they help me so quickly. I'm also having so much trouble waiting to get into the rheum -- are there tips and tricks to get in sooner? It's so hard to keep suffering like this.
I'd also like to mention that before any of this happened, I was going through a period of extreme stress. I regret it if it somehow did this to me!
Thank you for reading, and I hope you're all doing well.
Bookmarks