Ouchies

Today was a bad day. Attacks were back to back. I even went to 4 carbamezapine today. Still having that dull burning background pain. Haven't eaten all day. Well wait, I started eating breakfast and that's when the pain erupted. No food since then. Too risky.

Worsening

I want to document some symptoms before I forget when I had them...

In the past week:

Depression - severely and combined with exhaustion (sleeping 12+ hours).
Severe joint pain, especially in fingers and knees
Arm & leg weakness - can't walk sometimes and can't lift the baby
Arm and leg numbness - mostly arms. Can't type even for long periods of time because my hands and forearms start tingling with some minor pain
Migraine - just one, today. Couldn't move my right eye very well without it hurting. Tried to move my eyes around and the right one just wouldn't cooperate. Hurt to move it to the left or right and left like something was in my eye when I moved it down. Actually, when looking down, my right eyelid closed, couldn't control it. Very scary as this was the same eye that had was "desensitized" during my neuro exam in early Dec.
Dizziness - lots of it - causes me to stumble
Eye strain or eye exhaustion - here and there - even when wearing corrective lenses

Only 2 episodes of TN that were quick and tolerable.

I DID NOT up my carb permanently - I did it for 2 days and then decided to reverse my decision.

It's January Already!

My neuro retired in Dec but on his last day he upped my carbamazepine to 800mg/day from 600mg.

Doing the best I can in the situation and I am thankful for my husband, parents, and inlaws.

I've found that prayer and my faith have been a staple. Faith makes the negative look so much brighter.

For anyone who reads this, please know that I am not trying to be a martyr or a complainer. This blog helps me to track my triggers, treatments, and progress. Without it, everything is a haze. I hope it also helps all of the people on the right (in the TN widget), because I know their blogs, forum discussions, and comments on LivingWithTN have helped me.

Numbed

So I have completely stepped down my Gabapentin (back to 900mg/day) since my last post. I have really noticed a difference.

The pain has returned in my lower jaw and tmj area. It feels like a steady dull ache, mostly right around the time I am to take my meds.

Over the last few days I have felt the shocking, jabbing, stabbing pains. Certainly not nearly as painful as they've been, but enough to make me wonder if they will worsen.

I had about 6 without any pain. I was able to eat almost any foods and actually enjoy them. I am back to finding myself avoiding anything hard in texture or hard to chew - I even missed out on Prime Rib this Christmas :( I accidentally chomped on a peanut in some christmas cookies and the shockwaves sent me to high heaven. It only lasted for about 30 seconds.

The last 3 days I have felt super weak and without any strength at all. It's back to being unable to get out of bed. The last 2 days my arms have gone numb or "asleep" from the elbows down. Only one of the times did it feel like pins and needles but mostly it felt like I'd stuck my arms in the snow - it was a "cool" numb feeling. I could still feel things on the outside, it just felt like the inside was numb, does that make sense? It's so hard to explain.

We have new medical insurance as of Thursday. My neurologist is retiring on Wednesday. I have a Feb appt to see a different neuro in the office but I think I am going to try and see someone closer to my house. As soon as my husband gets the card in his hand I will make phone calls for appts. But for now, I will keep the Feb visit scheduled.


Any insight to the arm numbness would be so appreciated.

No TN News is Good News?

I haven't had any attacks the last few days. I have attempted to keep my stress level down and have been taking my meds on time (within a half hour or so) everyday. Maybe they're working? I'm still in wait for the next big one.

I asked the husband to buy me the book Striking Back for Christmas. I'd also like to read Catholic Matters: Confusion, Controversy, and the Splendor of Truth.

I have a tooth on the upper left side that is giving me some minor pain. Mostly it's just uncomfortable. It has a large old (like 10 years old) amalgam filling and part of the filling (and tooth) broke off. I am pretty sure it's going to have to be extracted and I'll eventually end up with a bridge, or even better an implant (I hope). I have a dentist appointment in January, right after Christmas, to deal with the tooth that got my TN all pumped up. It needs the root canal therapy finished as well as a crown. Right now my feelings are there is no way in heck I want them fishing around on that side, especially putting barbs down the canals again. I don't know if I will ever get the courage to do that again, although I know it's urgent I follow through. I also have a terrible time getting numb, hence why Dr H had to drill and inject directly last time. It makes me cringe thinking about it. I really wish general anesthetic was an option. I have some more work that needs to be done, a few small cavities to fill - I'd really like to work something out to do that all at once without having to be witness to it. I'm dreaming though, right? I wonder if having TN is cause to do so?

I'm almost embarassed to talk to the dental office about this. Isn't that terrible? I'm even embarassed to admit that I am embarassed.

I really need some commentary on this one.

Some Concerns

First and foremost, babies. The drugs I am taking cannot be taken while pregnant. While I am not planning on being pregnant soon (since I just had a baby) I do want to have more child(ren?) and our plans are sometime in the next 2 or 3 years. What am I going to do then? Is there an alternative? I refuse to believe my childbearing years are over. I've also read that some drugs decrease fertility, is that true about Gabapentin or Carbamazepine?

Secondly, other pain: Ever since the doctor did the root canal again and hit the nerve, shooting pain into my ear, I have had throat pain and ear pain with the facial pain attacks. The throat pain feels like my throat is closing (but only on one side) and my ear feels like a severe ear infection. I have to put an ice cube in my ear to numb it. I do not have an ear infection or strep throat. I told the neurologist about the pains and he asked if I had trouble swallowing (nope, I don't) but he didn't offer any explanation. The pain is getting worse with each attack *how can you really measure though!

Anyone else out there have throat or ear pain?

Anyone have anything to offer on getting pregnant with TN?

Slow Ride...Take It Easy

I think those two or so days of some reprieve set me up for the last couple days of hell. I finally got my doctor to refill a scrip for hydrocodone (yes, sometimes it works and at the pain point I get desperate) after I convinced her I wasn't some kind of addict. She actually wrote in an email to me "I reviewed the neurologist's notes and I am glad to see that you actually do have some kind of pain" - Wow, Group Death must get alot of pain pill seekers in there because I have never had a doctor question me like this care team has.

Today I feel like someone has socked me in the jaw. It reminds me of when I was little and played softball - during one game I got hit in the jaw by a ball, not to hard, just enough to hurt.

While I was having an attack a couple days ago, I had a flashback to when I was about 5 or so. I remembered getting little jolts to the side of my head and I realized I have had those here and there all my life. It was just recently that they turned into a daily event with a pain scale no one could measure.

Ice: I've figured out I can only use ice when the pain is so bad that ice can't make it worse. I can then numb the nerve. My husband is shocked I can hold an ice pack directly to my face without a towel around it. Yes honey, it hurts that bad. However, if I try to use ice when it's just starting, then ice makes it worse by sending pain through the entire nerve. Does that make sense?

I decided to start taking vitamin B. I have started on vitamin b12. I need to research the rest of the B vitamins before I take them. I want to be informed.

I am going to call my neurologist this week and "ask" to be stepped up to 1800mg gabapentin although I am already doing that. It's not that I'm hiding it, it just kind of fell into my lap. (You'll have to read previous post for the whole story.) I am going to call. If I don't, it's really going to screw up my refills and I may end up with no pills at the end of the month...

I really am starting to look scary. Since Saturday I have been on the couch if not taking care of my kids. And I don't mean eating bon bons and watching soaps (I'd never do that anyway). I mean nursing the unstopping pain. I have long long hair and it's starting to look like I'm trying to concoct dreads or something. Either that or a nice magpie nest. My husband gets home at midnight (swing shift) so he promises to take care of the baby and let me shower. Thing is, I don't feel like it. I've noticed a depression and a decreased sex drive. Is it the drugs?

I found a GREAT youtube video that makes me feel understood. It's a Seattle News broadcast (I used to live in Seattle, yay!).

Watch it, you'll love it too.