My weekend

Took off to Branson, MO (about 4 hours drive) with hubby and 6 year old Grandson. I was having some strange intermittant aching in my left jaw, but was trying to ignore it. I had actually taken a pain pill the night before--something I never do. We got there Thursday evening late, and planned a full day the next day of water park and Dixie Stampede show. Well the night was ok, after some tylenol and aleve (I know, I'm not supposed to, but it HURT!) The next day was worse with periods of intermittant pulsing pain that felt like an electri****pick stabbing from my left ear through my chin. My husband had some pain pills and I started taking them just to function and even did the water slide right after one of them. I got through the Dixie Stampede as long as I did not applaud. By the time we got back to the hotel Friday night I was hurting and was over my allotment of pain pills. I did net have enough left to get me back home. Once Colin was asleep I decided at 10 pm to find an ER. Something bad was wrong. I hoped for an ear infection that was about to rupture my ear drum. I feared a brain tumor. I found an ER full of people and a 6 hour wait before I could even see a doctor. By that time I just hoped for some pain relief. Bad news: No ear infection Good news: The doc ran a ct scan and blood test to rule out brain tumor and aneurysm and it came back clean. Diagnosis: Trigeminal neuralgia. (An interesting side effect of this is that you hurt so bad, you tend to develop anorexia--wish I'd known!) I was put out of my misery with an IV of something stronger than morphine. They gave me some percoset to get me home and the normal treatment for this irritated nerve, Tegretol, to try when we get home. It is an anti-seizure med. Because I react strangely to some drugs the doc half expected an allergic reaction to that one. But if it works, it is confirmation of the diagnosis. Well, I'm home and mostly glad to report that it works! The pain is almost gone and so far I do not have any negative reaction to the med. Now I have to convince a Neurologist to see me. This tends to be an intermittant but progressive disease that is hard to keep under control. Thank God that I have a high pain tolerance. I did find myself joining you on the liquid diet today. (Only partly by choice!) All my teeth really are sore, and chewing was triggering this yesterday. The oddest thing about this is that is is very rare, but I have a good friend who has been battling it for a couple of years, so I have a realisitic idea of what I am up against. Just another reminder that this life is not a dress rehearsal--- live today because we are not guaranteed tomorrow. Joy

Wow oh wow, Joy. I'm so sorry that you are going through this and hope things get better for you soon. Hugs, Connie

Whew. You must have a high tolerance for pain I would have been crying and never made it to the slide! your in my prayers

wow is right...oh my ...joy i'm sending hugs and prayers.....

My heart was in my throat as I was reading this thinking you were in cardiac arrest - thank God you weren't although I don't know anything about this disease or the severity of it. I'm so glad you're no longer in pain, my friend. Please keep us posted and don't stay away for so long, ok? I've missed you very much. Maureen

Nope! No cardiac arrest. But I did have a bit of a problem with respiratory arrest when I was on the heavy IV narcotic. It MIGHT have been the load of narcotics that tripped up my old sleep apnea. My pulseox dropped to 77. My daughter kept shaking the bed and yelling at me to breathe. Oh well. Better than hurting. And it gave her something to do! So far the tegretol is taking the main part off. I still feel nerve spasms, but they are tolerable and I'm ok in between. It is enough that I am able to start to analyze what triggers them. Before I was too miserable to care! And I'm off the pain meds so I'm not feeling druggy and can drive and do normal things. It looks like it may take a month to get in to see the Neurologist I want, but that is OK if it stays like this. I even managed to eat some cheese last night. (OK, not on the liquid regime, but not as bad as I usually eat!) It sounds like all of you all are doing well on your 5 day regime. Once I stabilize, I want to join you. Joy

WOW....Im glad you are feeling better now

Hang in There!! Glad you are feeling better!! That does not sound like any fun at all!! Take Care of YOU!! Ladybug Marilyn

Joy, I'm so sorry to hear you have this!!! I found a few sites with some info for you if you ever feel up to peeking at them. The last one looksl ike a community of peolpe that have it. That's always a comfort and interesting to see how others are handling the disease. My prayers go out to you. I hate that you are going through all that pain! Hopefully the medicine will continue to work for you. Hang in there and we are here for you! (((hugs))) http://www.mayfieldclinic.com/PE-TRIN.htm http://www.sd-neurosurgeon.com/diseases/tn.html http://www.biogetica.com/neuralgia.html?gclid=CLXJiZeR95QCFRKpxgodiEQerA www.tnac.org/ http://au.answers.yahoo.com/question/index?qid=20080324165033AA3OzP4 http://brain.hastypastry.net/forums/archive/index.php/f-271.html Elizabeth M

Thanks! I have been digging, but you came up with some I had not found yet. I need to find a board like this one for TN!!!!