Googling TN

Check out this video and then rate it and pass it on to help others who are searching for TN information find out about LivingWithTN.org.

http://www.youtube.com/watch?v=ARJMQ4zlsrk&feature=player_embedded

MVD?

I went to see Dr B today. He is an empathetic man. He seems to know the trials and tribulations. We talked about my options since the Tegretol and Neurontin are no longer working. He actually said he didn't feel the Gamma Knife procedure to be the best move. He thinks the potential side effects and cons way outweighed the pros. We discussed medication. As of now, I am on the best medication to treat trigeminal neuralgia, however there are other meds that can be thrown in the ring on top of the two I am taking. There is also MVD. I am scared to death of invasive surgery. But as Dr B points out, I do want to have a life and TN is taking away my ability to function. I personally don't really want to play around with meds right now to try and find the best mix. My husband is missing work for me, other people are taking care of my kids, and I had to miss part of DH's cousin's wedding. I wouldn't be able to hold a job with this. Someday I do want another child and I don't want to be on several medications.

So here's the plan. I am going to have a consultation with a neurosurgeon, Dr C. We are going to discuss the benefits of microvascular decompression. I am not even sure what it's entirely all about so I am going to research a bit and go in with a positive attitude. In the meantime, Dr B has me on an added medication, Topamax. He hopes this will help with at least some of the attacks.

Side Effects or Pain?

I am sitting here trying to think of what to say. Where do I start now? I am completely screwed up. I seriously cannot function on these meds, AND they are only helping the pain for a little while. If I take a normal dose, the burning is still there and I get a few 4.0 shocks. If I take a double dose, the burning subsides for a bit, as well as the jabs, but I either become a zombie or a drunk Chatty Cathy. Either one is terrible. I think if I only double dose once a day and take the rest as perscribed, I am more zombie like. Double dosing all day long makes me the chatty one.

Now, the big deal for me. I am having 10.0 attacks about 4 times a day. Then I get the little 4.0-7.0 after shocks here and there. I am devoted to my ice packs to help distract from the pain. My husband's family had a reunion this weekend. On Friday morning, I spent it in bed with bad attacks. Then throughout the day I had the little ones; tolerable attacks. Nightime brought back the bad ones and we had to go home. Saturday his cousin got married. I spent some of the reception crying my eyes out in the car because of a huge attack. Sunday has been the same.

Side effects: Extreme ticks/jerks. They are getting worse although I have been taking the same extreme doses for the last 5 days. Double vision, extreme fatigue, drunk feeling. The thing that bothers me the most are the jerks in my hands and fingers. My hands, arms, legs, and feet will also go numb. It's mostly in my fingers, hands, and toes. Then next my lower legs, then my arms.

And guess what? The pain still comes back. I am scared that if I lower the dosage the pain will be worse than it already is now. I am going to my neuro on Tuesday. I have also contacted Gamma Knife of Spokane for a consultation.

Will provide more news when it comes.

It's Back Full Force

For the past week the attacks have been coming back. They are exactly like the ones I had last winter. Awhile back, Dr B said I could up my dosages depending on the pain. Well depending on the pain, I have upped them anywhere to one extra dose a day to three extra doses; mostly taking those extra doses during attacks. I'm not sure if it's helping much or if I need to give my body more time to adjust to them. The attacks take up at least half of my waking hours right now. And when I am not in pain, the side effects are horrendous. I feel drunk, dizzing, and extremely exhausted. I just got through a 30 min attack after lightly brushing my teeth. Eating is a trigger too.

I knew they were on their way back in when I took a drink of juice last week. I had tons of pain in my top row of teeth. It went away quickly but I knew the worst was on it's way. Here I am today, feeling drunk and disoriented. I can barely function. I have probably taken more meds than I should but the pain is intolerable. Right now I choose drunk over suicidal but I am sure there has to be a better way to handle this pain. Either the meds need changing or adjusted or the TN is just out of remission.

A call to Dr B will be taking place after their lunch hour ends in five minutes

Setback

This weekend feels like it set me back about 6 months.

I have been eagerly waiting for my appt with my new neurologist. It's tomorrow. I will remind that my diagnosing neuro retired without my knowledge in Jan. I didn't even know until I tried to make an appt.

I only had enough refills to make it to about one week before my next appt. My GP promised to get me refilled until then.

My pharmacist sent the auth to my GP last Wednesday. It is Monday night and I am still without meds. My meds ran out Friday night. I was hoping to pick them up Saturday morning. My doc office had 3 full days to sign and return before the weekend and they didn't. My pharmacy has sent 3 faxes on my urging. There is a medical assistant with whom I've been dealing that is rude beyond imagine anytime I've had to speak with her the last 3 months. She keeps denying any faxes coming through. I gave up calling after the 3rd fax. I have a really serious letter for that doctor and his office regarding little miss med assist. Oh, and my pharmacy refused to give loaner pills through the weekend.

I am beyond exhaustion and pain. I went off my meds abruptly, no stepping down and I feel like I've been hit by a truck. I have a friend who is a pharmacist in Seattle and she notes it is probably withdrawal symptoms. I am so very frustrated, confused, upset, and most of all, in pain. For the first time, I've been feeling it on one side of my tongue also.

The past month I've also had more weird symptoms besides the numbing epsiodes. Out of nowhere, I will get sharp burning pains in my feet. Sort of like stabbing. It makes me grab them and try pushing on them to get it to stop but it doesn't. The whole thing lasts maybe a minute and then they are gone. Always just one foot or the other, usually on one side.

Sometimes I think I make more of symptoms than it really is but at this point, anything could be a symptom.
I am really praying to get my meds tomorrow from the new neuro and I pray that the pain subsides soon. I just want this all to go away.

Less Frequent?

Since I haven't been posting on a regular schedule, that must mean my attacks are less frequent? Well, yes and no.

Since the removal of tooth #14, I have not had any TN like pain on the left side (so it was probably just tooth related pain, as I suspected). Good news. However, I have had several episodes of TN on the right side. Not so many zingers, mostly the achey background burning pain - bottom right side along the gums. I can just feel it inside but when I touch anywhere along the gum line I don't feel it from the pressure. I have been having these achy episodes almost constanly now for a week. The pain is a 4 or so on a scale of 1 to 10 so it's pretty tolerable. I have almost forgotten what a 10+ feels like.

This week I have been plagued with 2.5 migraines. I say .5 becasue one was teetering. haha. They both started in the back of my head and one radiated to right behind my left eye. Oh baby the pain. Numbness in my arm, hand, and fingers is still here. Have a new thing going on - the soles of my feet have been feeling tendinitis-y. Off and on of course. Mostly when the rest of me is going to pot, the feet just join in.

I am on a new medication too. I went to my GP about 5 weeks ago. He did a full thryoid panel and found that my free T4 was not quite up to par. I am taking 25mg of levothyroxine. I go back next week *the 15th* for a new blood draw to see how it's working (or not).

My next neuro appt with my new neuro is in 4 weeks. This doc is also a headache specialist in the headache clinic so maybe he can figure things out better than the last office I was at. I just want to feel like myself again.

I have been caffiene free 90% of the time the last 5 months or so. I really believed it's helped alot. My 12th acupuncture visit is the Thursday. Coleen has worked wonders, I really believe it. I feel so much better the days following my visits with her. I missed 2 weeks of apts starting 3 or 4 weeks ago and since then things have gone downhill symptomwise. I probably just reversed all of her hard work.

Symptom: Double vision, "vertigo in my eyes" feeling - can't focus sometimes and have to blink multiple times or squint to keep from feeling lightheaded and dizzy when I can't see. Even with my glasses I get this. It really makes me want to throw up.

I've also been getting feverish/elevated temps off and on. My normal temp is around 96.9 degrees and lately I've been hitting around 100 to 101. The heat has been off in my house all day. It's only 70 degrees in here and I feel like it's 100. I am sweating and want to jump in a bathtub of ice.

Unilateral, Bilateral

Thank you to all my lovely friends at livingwithtn.org

Your answers to my bilateral question were so very helpful. At this time I am pretty convinced that it's tooth #14 resposible for the zingers on that side. I have finally, FINALLY, got an appointment on Friday the 6th for extraction. If I'm still having pains and zingers after that, then I will mention it to the neurologist...whom I can't get in to see until MAY! There are only 3 neurologists that I am aware of in Spokane who treat TN. I am thinking of calling the other two to see if I can get in sooner.

On another note, the numbness is coming back. All that fun stuff I mentioned awhile ago... I will mention this to the acupuncturist tomorrow.

Til next time,