Still not right.

Such a bummer.  I think I will be changing my meds when I go see Dr. D next week.  My carbamazepine was working really well for quite a while.  And in some ways it still is.  I no longer have my 24/7 headache.  Truly amazing to not live with that anymore! But now my electric shocks are coming to me all day long.  Sometimes they each last a few seconds but more and more often they last me way longer, or are back to back to back.  We went up to the very highest possible dosage at my last appointment, so we are not able to increase it any further.  Something is not quite right with me and this medication and I think we need to look at something else.  We are on the right track, but still not quite all right.

I am nervous.  I know that there are hundreds of meds out there to try, but I am finally used to these side effects.  I know how my body reacts to them and I am dealing with it.  My family is getting used to my forgetful brain and my new occasional stutter.  Now I will have to start all over.  it is a daunting feeling.

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.

Tracking Carbamazepine Side Effects/ Treatment

December 30- I found that in the middle of the night I got this "off" feeling and has a bit of nausea. But probably the most annoying was I had a bit of insomnia! I had the hardest time falling asleep and then staying asleep. OK, I am only on day two, and on a really low dose (I am slowly working my my way up). But I am feeling a bit hopeful. In the spot behind my eye where I have had my most intense, constant pain for the past 5 years I now can best describe it as a "void". I am so used to constant pain, with shooting pain on and off. And since last nights pill I have zero pain or pressure! It is amazing.

I always would tell my husband if I could just take a knife and cut out that one spot I would feel so much better. Well now it is as though exactly that has happened. That is why I used the word "void".

December 31- So as of today: no nausea today and also no insomnia last night. I took my pill 4 hours earlier then the night before in hopes of offsetting the sleep disturbances, and I think it worked. I also feel much more chipper and less frazzled then usual. May have to do with less headache pain or could be the meds- who knows. But so far I am loving this stuff. I want to go hug my doctor. After 5 years of no one knowing what was wrong with me, I was at first very discouraged and afraid with her diagnosis. But as long as I have a med that actually works, I guess it isn't such a scary outcome. Until next Wednesday I am at 100mg a day once a day. After that I jump up to 200mg twice a day so I can only imagine how it will work even better then. At least I would assume so! One thing I have noticed that although I no longer have the pain behind my eye and the back of the head, I am acutely aware of my cheek bones.  I know that sounds weird, but it is a strange feeling.  They don't necessarily hurt, but I do have a constant "sensation" and slight tenderness. Almost like sinus issues. The Trigeminal nerve is located there and this drug is specifically used to treat that one. So so far it is definitely working on the occipital nerve but I think I need to up the dose to notice it working on the trigeminal.

January 1- I get to move up my dosage on Thursday. I've noticed I still have headaches, but in all new places then I ever had before. Its weird. But I hope those settle up some once the stuff is fully in my system and I am on a complete dose. This may be vain, but I must admit I am glad weight gain isn't a side effect for this medication! Honestly I think I would have told her I wanted something else if I was going to gain 30 or 50 pounds....

so far I don't feel trippy at all on this stuff. But I do have lower backache that is uncomfortable and annoying.

later in the night of January 1- Ok, it has been a few hours and now the whole side of my face/head is in serious pain along with my new lower back pain (medication side effect) so I decided to take some pain pills. AHHhhhhhhh. So nice to get some relief finally! I never take narcotics for this stuff, but tonight I just couldn't take it any longer. Glad I finally caved.