Yes and No.

So after watching about a gillion videos on youtube about Trigeminal Neuralgia I am about 98% sure that I don't have it.  That's a good thing!  I don't have the kind of pain that all of these people are describing.  Although I do live with daily chronic head pain, I wouldn't describe it at all like the way these doctors and sufferers do.  Their pain is excruciating and completely debilitating.  They can hardly eat or brush their teeth.  It hurts to wash their face, etc. etc.  Although I do notice odd things; yesterday while putting on make-up my cheeks felt like they had sunburn on them after rubbing with my powder puff (I am still pale as snow white), or while brushing my hair with a bristle brush, my scalp is sore and feels like it burns a bit.  I couldn't say that it is excruciating, just strange and uncomfortable for a little while.  But then again I am feeling this while on my meds so maybe it is decreasing the pain?  Maybe my trigeminal nerve is inflamed or something, but I don't think I have this full blown condition.  *phew*

I DO agree with Dr D's diagnosis on Occipital Neuralgia though. After my all of my research and study, all the youtube videos and countless conversations with other sufferers on my ON support group, my pain is just like theirs.  It isn't as severe as some and more then others.  But the locations, and type of pain is like listening to myself.

My medication seems to be working really well over all.  I don't have all day, constant pain as I did before the change.  Actually today and yesterday I have had hours of pretty much pain free!  It's amazing!  I am pretty sure that Dr. D will want to increase my dosage because even though I am having good days, I am having many bad ones as well.  It seems like just as I get my hopes up, I'm feeling great and think "This Is It!"  And then I have follow up days of yuck.  Maybe I am still adjusting to the meds, who knows.

Tomorrow afternoon I go for a CT Scan to follow up my sinus's and then Thursday I see Dr. D to discuss everything.  We'll see what happens.

Follow up with Dr. D and an Official Diagnosis

December 28- I had one of the best visits with my doctor today. Lots of talking and testing. She is amazing! After not being taken seriously for so long, I can't stress how much I appreciate her! Looks like I do indeed have a form of Occipital or Trigeminal Neuralgia or both!). I asked her about what the Optical Neurologist said, about the nerve block not working if I didn't have Occipital Neuralgia. My pain has been increasingly worse since the injection, not better. So what does this mean?! She that that basically I have an angry nerve (Grrrrrrr!).  It didn't "agree" with the type of injection and is now mad and lashing out at me, causing more increased pain. This is I guess another way of knowing that the shot did something proving I do have the disorder. If I didn't have it then the shot would have done absolutely nothing at all.

So I am trying out a new medication starting tomorrow to start relieving my nerve pain and will be slowly weening off my beta-blockers.  She wants to see if my migraines come back off of them or if my pain is primarily nerve related. Nervous but hopeful!  We have a plan of attack! (Hi-Ya!)

I think I am mostly nervous about going off the labetalol. I didn't need it while I was pregnant this last time; guess my hormones fixed my issues. But once I gave birth I had the most crushing migraines that I just couldn't shake. I can *almost say my migraine pain was worse then my c-section pain. The house doctor put me back on the labetalol, I had one more migraine and then I was back to my normal 2/3 daily pain level. Dr. D says that I will be seeing her regularly, so I won't be left in the cold in serious pain if i need it still, or something else better.

Anyone familiar with Carbamazepine? That is the new med she is putting me on. It's an anticonvulsant. Actually now that I think about it, I think it is the same stuff my crazy college roommate took for her epilepsy. FYI, It wasn't her epilepsy that made her crazy, I think she was just crazy naturally... accused me of stealing her stuff, would flip out on me for no reason, oh goodness a whole mess of stuff. But enough about her, yuck. So anyways...

Dr. D wouldn't prescribe me any pain pills right now. She said that if this is indeed all nerve related and that I did have this neurological disorder, then this medication would work as a pain pill, so to say, on the over-reacting nerves in my head. I hope she is right, because my pain level (even on my beta-blockers) has gotten up there again. My daily pain is now closer to a 5/10 and taking 4 Advil many times doesn't even cut it.

Along with my 300 mg of Labetalol, I will start out on 100 mg of Carbamazepine once a day for one week and then jump up to 200 mg twice a day after that. I am then scheduled to see her again in two weeks to discuss my pain levels, how the new stuff is treating me and then to work out a schedule for going off the Labetalol. She says that the Carbamazepine is a low does, so not to be surprised if I need to increase the dosage until we get things just right. She really wants me to be a "one pill girl" and not need to take all sorts of things to feel "normal". Oh goodness I hope she can do it!  We shall see.

Possible New Diagnosis- Occipital Neuralgia

After my last appointment with Dr. D, my xray and CT showed I had a narrowing of the nerves in my neck/spine. With the researching I have been doing the term I keep coming across for the narrowing of the spine is Spinal Stenosis, and it sounds exactly like what she described.  She is sending me for an MRI sometime this month to look at this more closely.

The CT also showed that my sinus's are "a hot mess", as Dr. D. calls it.  She said that of the 5 sinus's in my head, every single one of them is 100% blocked.  She is starting me on a heavy duty antibiotic to try and clear it up.  We we reevaluate them again at my follow up appointment in a month.  In the meantime I am to keep going with my physical therapy.

Follow up: 3 weeks later I was in the Doctor's office for my son (this is a family practice so we all go there)  and I wanted to touch base with her on the status of my MRI.  She happened to not be busy and have a few minutes to chat with me.  She said the MRI showed that I DO NOT have spinal stenosis, thank goodness.  Not sure why the other scans showed something different, but we will go with it.... But what the MRI did show was that my sinus's are still really bad, almost still fully blocked.  She is especially concerned about my Sphenoid Sinus.  This little guy is located right smack dab in the middle of your head behind your eyes.  It is fully blocked.  If not cleared up it can lead to major stuff like meningitis, and other things.  She is putting me back on another, even more powerful antibiotic to hopefully clear it all up for good.

The headache pain that I am always experiencing is located right behind my left eye.  plus I have other symptoms that lead her to believe that I may have a condition called Occipital Neuralgia.  She is sending me to an Optical Neurologist for further assessment.  Apparently there is another trigger point injection that he could perform in his office to help with that and also to help determine if I do indeed have this disorder.  So on to my very first neurologist.....

My new "Normal"

Chronic Pain. It is never something I thought I would have to deal with. But then again 5 years ago, I just kinda assumed that all people dealt with headaches on a regular basis. After my sister brought it to my attention saying to me, "You sure get headaches a lot." At first I blew it off, and then I really started thinking about it. And yeah, I guess I did. I would get one pretty much every day, sometimes for a few minutes, sometimes a few hours.... When I started asking around I found that no, most people don't live with regular headache pain. I was just a weirdo with issues. I guess deep down I knew that. But it just seemed strange to me. I knew I should probably see someone about them but I just hoped they would go away on their own. But they didn't.

We were sitting in church, and I remember leaning down to pick up a hymnal and I got this crushing feeling in my head that I had never felt before.  Every movement sent me reeling in pain.  The music became too loud, the lights too bright and all I wanted to do was to go bed.  Welcome to my very first migraine.  I went to bed and slept for over 4 hours.  I woke feeling groggy and disoriented.  The migraine itself had faded but my daily pain was there and stronger then ever.

Instead of those few minutes of headache pain it had slowly morphed into hours which turned into days and then just never ever went away. I was living with constant 24/7 headache pain and the intesity was increasing to where just a couple of advil no longer did the trick.

It was now time to see my doctor.  I went to my general practitioner because that was all I knew.  I went to him for everything else, so it just made sense for this too.  He had me keep a Headache Journal.  I was to write down everything; what I ate, what I did, anything at all that could pin point what on earth could be triggering these headaches.  I was to keep it for a full month and then come back in to see him and we would go from there.  He also sent me for a full CT of my head to check for tumors, aneurisms, and other major icky stuff.

UGH, one whole month without answers?  Crap.

It seems stupid now, but I really and truly thought he could tell me what was wrong and how I could fix it at this appointment. This is how it always worked in the past.  I would have something wrong.  I went to the doctor.  He would tell me what was wrong, prescribe me some medicine and two weeks later I was all better.  I never had a "condition" before.

So dutifully I wrote it all down.  And I noticed a trend: There was NO trend.  I would wake up and the headache would be there.  I would go to bed and the headache would still be there.  Unfortunately I couldn't find any food triggers.  I was really hoping that something I was eating was doing this to me.  I would much rather live without coffee then to have constant headaches.  But since I woke with it and went to bed with it we couldn't find anything I was doing that was giving me this pain in my head.  On a positive note, my brain scans can back normal, so that was GREAT news.  I had to admit I was a wee bit terrified he was going to call me and tell me I need to come in for emergency surgery to remove the giant tumor pressing on my brain. *phew*  But the downside is that I really had nothing to bring to the table: no triggers, no tumors, no aneurisms, no nothing.

He said I had a condition called Chronic Daily Headaches (CDH) which is also known as New Daily Persistent Headaches (NDPH).  He explained that just like some people had high blood pressure, I had Chronic Daily Headaches.  There was nothing I did to give it to myself, and unfortunately there was nothing I could do to get rid of it.  And it was likely I would have this condition for the rest of my life.  Now it was time to talk about a daily preventative medication and one to stop my migraines in their tracks (I had already had a few more before I actually got in to see him).  We had to get my pain level under control.

Um, wait.  You mean to tell me I was going to have this headache for the rest of my life?!!!!  What the hell?!  Not the news I wanted to hear.  I have to admit at this point the thought of a brain tumor actually sounded a little appealing.  At least then they could cut it out and I would be done with it.

Nope, no such luck.  This is my new normal.