My Neurologist is baffled

[LauraWinchester]

I am a 29yr old female and I apologize now that this is going to be long. I will start at the beginning. In Aug 2011 I was in a car accident where I was T-boned and hit the left side of my head on the frame of my car, but never left consciousness. I was taken to the hospital where they did x-rays and a CT scan to be sure there was no damage and everything came back normal so they said I was fine, except for the bumps and bruises. (The accident may be completely unrelated I realize) In October 2011 I noticed that I was starting to have these strange slightly annoying and nagging headaches on the right side of my head, right in the middle of the side and they only occurred on the right side, lasted 15-60 seconds and then faded away and they came on about once a week. By Feb 2012 they had increased to occurring about 5 a day everyday and were painful, not just nagging. By May 2012 they were so intense that they would stop my in my tracks and were occurring about 20 times a day. Also at this point, my right eye started watering when the headaches occurred, my nose would run only on the right side and my right ear would feel wet in the ear canal. At this point I returned to the ER and they ordered another CT scan, which again was normal, and referred me to a neurologist who told me that I was making them up and needed to stop wasting his time. I now felt like I was crazy. In August of 2012 the headaches were so bad that I would have to literally get down on the floor, put the left side of my head on the floor so my neck was turned, this seemed to help the headaches go away faster, and still my right eye would water, the right side of my nose would run and my right ear would feel wet inside, and now I would lose my vision for about 60 seconds after the headache was over, I would lose my hearing for about the same amount of time and as my vision would return I would see white sparkles and as my hearing returned it was like I could hear rushing water. By this time I was getting really scared. There was a neurologist in town that everyone I knew was suggesting I go to because as they put it "He's the Dr. House of Neurologists. If he can't figure it out no one can!" I was able to get a referral to this doctor and started a headache log. By the time I got in to see him in December of 2012 I was having headaches 30 times a day with greater intensity than before, still with the right eye watering, right side of the nose running, right ear feeling wet, loss of sight and loss of hearing. While speaking with him I was able to tell him about the things I know that trigger my headaches: Looking over my left shoulder, bending down to pick something up off the floor, stretching, yawning, rolling over in bed, walking, breathing too deeply, bending my head back (like to wash my hair), running, standing up from laying down, sitting up from laying down, standing up from sitting, sitting down from standing, laying down from standing, laying down from sitting, and sometimes they have no trigger at all, they just happen. They don't get worse or better with my menstrual cycle or anything like that. My neurologist grinned with excitement as he told me he had never heard of anything so fascinating and asked if I could trigger a headache for him, so reluctantly I did by looking over my left shoulder. He advised me that he watched my right eye droop during the headache and ordered an MRI with dye contrast and a CT with dye contrast. When one came back with an "odd" spot he immediately ordered an arterogram (I think I have that spelled right, it's when they run the catheter through the femoral artery up into the corroded artery in the neck on both sides and shoot dye into the head and take a 360 degree picture of the arteries in the brain to check for bleeds and aneurysms. I had this test done in Jan 2013. This came back normal as well. He has put me on Topomax, Methergene and a non steroidal anti-inflammatory (I can't remember the name right now) which have decreased the frequency but not the intensity. I am down to 5-10 a day on a good day, but then in March 2013 and again 2 weeks ago in April 2013 I had headaches so painful that I actually passed out and had a nose bleed, luckily my husband was there to catch me when I passed out. The first time I passed out it was only for a few seconds as was the second time which occurred while I was laying in bed. When I passed out in March 2013 I called my neurologist because this had never happened before and he said that he would make a note of it but that he didn't think it was something to worry about, but to definitely not drive for a few days to be sure it didn't happen again. I went back to see him yesterday and he told me that he is at a loss as to what my headaches are, and really how to treat them to get them to stop. We have ruled out ice pick headaches, cluster, migraines, and all the other usual diagnosed type headaches as my symptoms don't fit. Any advise would be greatly appreciated. Thank you for reading and sorry it is so long.

[LauraWinchester]

I'm really sorry it took so long to get back to you, I ended up passing out in Wal-Mart which sparked a whole new roller coaster of meds and tests :( I really appreciate you being willing to help me look into this. My neurologist is talking about passing my case off to a headache clinic out of state which would mean going on short term disability from my job and I DON'T want to have to do that. I hope that you got some answers for yourself and I wish you all the luck in your recovery!

[Kera109]

Hi Laura,

I really wish that I had more to say than what I'm going to say:/

But... I was in the hospital for the past week getting my own diagnosis... And I will tell you that two things that stuck out from your post were this:

1: I saw soooo many doctors, 6 of which were Neurologists and ALL of them asked if I ever heard a sound like rushing water with my headaches.

2: Again, many doctors, and ALL asked if I had any watering of an eye or running of one nostril with the headaches.

It's very odd to me that two very specific things that I do not have but you mentioned, I was specifically asked about. You have those symptoms -and if neuro doctors were asking me about those specific symptoms them they must mean something to these Neuro doctors.

I know it's a long shot, but I do see my doctor tomorrow. I will be asking him why I was asked about those very specific symptoms and I will ask them what those symptoms mean.

I know it's the Internet and its a long shot but maybe I can find SOMETHiNG out that could put you in the right direction!!