December

I have received some emails and comments from people who are benefiting from this blog. I am so glad for you all. I know it helps to read the experiences of others and I am really happy to be able to share mine with you.

I met with my neurosurgeon, Dr C, after my ER Visit. Sadly, he said my surgery is considered a failure. I did go 2 months pain free, which was the longest amount of time ever in the past year. After the ER visit, I continued to have pain for about 3 more days and then it tapered off. Since then, the TN has flared up a few times, most being about a 5 on a 10 scale. Dr C said I could go back on my meds at the dosage prior to the surgery but I opted not to. I suffered through the pain a bit, taking about 300mg of Neurontin and 200mg of Tegretol two times a day and then stepped it down when the pain was gone.

The past two weeks I have taken doses of both when I've had a bit of burning but I am not taking the meds on a regular schedule. Those medications, albeit they did their job with taking the edge off, made me a zombie. I was taking such high doses, along with the added Topamax, that I was in a fog everyday. The side effects were horrendous. Since I've been off these meds (I first stopped taking them about 2 months ago - and then added them back here and there) my family has noticed a huge change in my personality and behavior. My mom was in tears saying she finally had her daughter back. I do feel like I am back to my old self. It's liberating. I feel like I missed my son's entire first year of life. Even after having this surgery I still have occasional attacks of TN, I still consider the surgery a success. Without it, I don't believe I could have continued to function. My liver enzymes were elevated from the meds and again, the side effects were no longer tolerable. The pain of TN was like being in a torture chamber. The combination probably would have rendered me crazy. MVD was a success to me.

I am supposed to have a follow up appt tomorrow with Dr C but I think I am going to have to reschedule it because I have been dealing with bronchitis (as is my whole family). I will decide for sure tomorrow.

I will also try to keep updating this blog more regularly. I know it's much easier to blog about TN when it's bad and then forget to keep going when things are good. Most of us are looking for the good when we google search so I will do my best to keep you updated.

I hope those of you who are struggling with TN continue to find comfort in this blog. Please also consider visiting the site, Living With TN - the folks over there are a blessing. I joined as the 68th member and now there are over 200. It's sort of like a facebook for people with Trigeminal Neuralgia.

Thanks for reading,

Misty

ER Visit

My MVD surgery was Sept 17th. I was pain free until Thanksgiving. That morning, I woke up, ate a bowl of cereal (nothing crunchy, it was Lucky Charms - yep still love the kiddie stuff), and 10 minutes later I had the exploding pain in my lower jaw. It felt like my teeth were going to pop out of my gums. It lasted about 5 minutes. Throughout the day I started getting the burning, stinging feeling in my gums, cheek, jaw, teeth, and it felt like it was even in the muscles of my mouth. This went on for two days and then the third day, Saturday, the fireworks started. The pain was popping around all over the place and it was getting stronger. By Saturday night I couldn't take it anymore. It wasn't the worst pain I'd felt from TN but it was exactly like the pain I felt in Oct 2008 when this TN started. I broke down and called the on call doc from my surgeon's office. I told her how I had been weaned down to 200mg of Neurontin a day (for the last 3 weeks) and had stopped taking Tegretol and Topamax several weeks ago - but in the last 3 days I had upped my Neurontin and started taking the Tegretol again in hopes it might help the pain. She sent me to the emergency room.

I just got back from the ER - they gave me a round of IV Dilaudid and Toradol and then gave me the option of being admitted and staying overnight. In the end I decided to go home and he gave me a prescription for Toradol and Zofran (for nausea) and new directions for the Dilaudid I already have at home.

I hope this works and that it's the end of the pain. I am to call my surgeon or neuro on Monday.

I am really sad this is happening again. I don't understand how or why. I can't go through this again, especially since I just had the surgery. I hope to get more answers on Monday.

MVD Surgery Completed

So on Sept 17th I had a surgery called Microvascular Decompression (MVD). It was to relieve pressure on a nerve on my face that has been causing me extreme pain on and off for over a year.

Doctor Carlson, amazing surgeon, found a large vein wrapped around my trigeminal nerve. Usually they are able to cauterize veins but not this one. This one was so tightly wrapped it was touching the nerve in several places. If he cauterized there would have been too much blood loss and risk of stroke. Instead, he placed teflon padding between the nerve and the vein.

I spent 2 days in the ICU. I had the surgery on Thursday about noon and it took me until about Friday at 11pm to pull out of the anesthesia completely. Saturday they moved me up to the neuro floor and I stayed until Wednesday morning.

The side effects of the surgery have been headaches, nausea, vomiting, and fatigue. I spent the first 2 days vomiting. Thank god I don't really remember it all. Whew. I did have super migraines for about a week. Now, about three weeks post surgery, the headaches are mild and here and there. I am pulling out of it. I am overdoing it a bit though. I forget that the neck muscle still needs to heal. Two days ago I felt like cleaning, and as I was sweeping my kitchen, I pinched a nerve in my neck. The next morning it was even worse. Today, though, it's been better. Still sore but better. I am just anxious to get back into the swing of things, I guess.

At my check up appointment last Friday, Dr Carlson told me I need to take things slowly and not rush my recovery. He explained it could take up to three months for me to feel "normal" again. However, our key focus is the trigeminal nerve pain. I have not had any pain! I DO have some mild burning pain still, but it is tolerable (a 2 on a scale of 10) and treatable with Neurontin - and it's only here and there. I am only concerned with the debilitating sharp stabbing ice pick pains I had almost every day for months. I have not had them since the surgery. I am so happy that when I think about being pain free, I cry. It's that freeing. I feel like I am getting my life back. Maybe that's why I am so anxious to get back to "normal" (Don't rush recovery!). Now my doctors have me stepping down my meds (Neurontin, Tegretol, and Topamax) so I can eventually quit taking them.

Thank you to everyone who has given support to our family during these times. We are so thankful. Truly thankful.

Here are 2 pics of my wound, 3 weeks post op (healing!)

MVD

Coming down to the wire. My MVD surgery is on Thursday...

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,

Been Awhile

So it's been over a month since I've posted.

The frequency of attacks has been lessened by medication. I don't have them as often. About twice a week. One being mild and the other being intolerable. Actually right now, I have had an attack for the last hour. None of the zinging pains but a lot of the burning tingling pain. I have nothing in the house for it. Not even an ice pack. We spent the weekend moving so not everything is here and ready to go just yet.

I am hoping this will subside soon. I want to curl up in a ball in the dark, with no noise but it's impossible. I have a screaming two year old and a baby to attend to so this blogging is my only peace of mind.

Til next time

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.