Thursday, May 29, 2014

4+ years Post MVD Surgery

Here I am four plus years later, (three years since I last blogged)

I still take gabapentin. I take one 300mg pill daily.

I still get attacks. Sometimes my husband has to take his FMLA leave at work to come home and be with me. Sometimes they are quick, minor, and passing. Sometimes it feels like mouth is burning for hours at a time, a slow burn.

Something new - the last four months or so I have been getting pain under my right eye. It happens like an electric shock and is fleeting. It's usually co-occurring with the burning pain in my jaw.

I have applied for Social Security disability. I tried to work last summer and I only lasted about 12 weeks. Even though I am no longer in pain every day almost the entire day (thanks to MVD surgery), I still had to miss days at work due to spontaneous attacks. It's frustrating because you never know what will trigger it. I feel my biggest trigger is stress.

I am going to have to schedule a doctor appointment with my neuro to discuss the frequency of the pain and the new pain going on in under my eye.

Monday, January 24, 2011

January 2011

It's been about seven months since my last post. A lot of new changes since . I haven't had any more visits to the hospital, but I have had one major episode that made me want to. In October, we anxiously awaited to find out if Baby #3 was on the way and on our son's 4th birthday, we got the big news. We are extremely excited for the arrival of our third child in June. This means I have cut back my medication. I actually went off of it completely in August because we anticipated a third pregnancy and I did pretty well, not having to take any TN meds. I did notice more burning sensations or the feeling of being socked in the jaw. In the end, I've been taking one dose of each med each morning. I've learned that going off of the meds entirely is just not an option - especially after the last major episode.

I hope these updates are helping those who are looking for Trigeminal Neuralgia information. I'll do my best to post them consistently.

Thursday, June 17, 2010


I've been dealing with some depression the last couple months. All of my life I have gone through a cycle of ups and downs. Bipolar maybe? I have long thought that the women in my family suffer from bipolar disorder, but none of us have had the courage to seek a diagnosis. I am prone to major episodes of depression and it is the darndest to try and recover from those. However, I think I have found a godsend.

As you've read, I have had some minor pain episodes. When those happen I just pop an Oxcarb (aka Trileptal) and a Gabapentin (aka Neurontin). Sometimes I have to do this a couple times a day for a few days, just to keep the pain in line. I started noticing, whenever I take my doses, I feel better emotionally. The depression symptoms subside and I no longer feel a big gaping hole in my heart. I decided to test this out. The last two months I have been battling the depression and the manic episodes. (I am pretty sure they're manic but god forbid, I am not an expert, lest someone call me out on it). Anyway, when I feel a mood coming on, I pop a pair of pills. Within an hour or two I feel much better. I feel normal and I feel like I can enjoy life.

I was baffled by this and started researching the medications side effects. I came across some very interesting information.

"Anticonvulsants are used in the treatment of bipolar disorder as mood stabilizers. Although they were originally developed for the treatment of epilepsy, they have been shown to relieve the symptoms of mania and reduce mood swings."  -

There are alot more sites out there touting the same info. I am wondering if this mood stabilizing is further proof of bipolar disorder. I did take one of those screenings during a depressive episode and ended up with the result of "moderate to severe signs of bipolar disorder." It seems that all my life I have had these cycles and they just seem to be getting closer together and harder to deal. 

I am still thankful everyday that I do not have constant pain like I did last year. I can't believe it's already been 9 months (to the day!) since I've had my MVD surgery. I recovered well and I am handling the smaller attacks okay too. 

Will keep the blog updated as much as possible, at least once a month. 

If anyone has any questions, please feel free to email me at misobrien at yahoo dot com and I would be happy to offer any advice or support. 

Thursday, May 20, 2010


It's back. Full force. I spent the last 10 hours in bed trying to get relief. It's less about burning and more about someone stabbing me in the face, jaw, and ear. Hopefully it will go away with the increased amount of Oxcarb. I always wait 3 days before going to the hospital. Here's hoping it will subside.

I am noticing a pattern. Every 3 months I get a severe attack. I should be researching this timeline. Maybe something in my life is triggering it, or maybe it just takes 3 months for the mylein sheath to break down.

Be back soon with an update. For now just increasing meds.

Friday, April 23, 2010

April 23rd

It's been a little over 3 weeks since I've been Oxcarbazepine. I have noticed a vast improvement in the amount of pain. The last time I had blood work done, doctors noticed elevated liver enzymes and attributed it to the Carbamazepine I had been taking. The Ox has had noticeably fewer side effects (actually, I can't seem to think of any I've experienced), and I've been able to control the neuralgia with a low dose. Currently, I take 400-600mg of Ox and 1200-1800mg of Gabapentin. The higher dose of Gabapentin makes me sleepy but a low dose makes me hyper. I haven't found the happy medium yet.

Thursday, April 1, 2010

April 1st

Still having pain. Had about 3 days without really bad pain - just the kind that's easily ignorable.

Dr B. prescribed me oxcarbazepine (Trileptal) instead of carbamazepine (Tegretol). If you recall, the carb. was elevating my liver enzymes. The ox. definitely has less noticeable side effects and is good for the pain, but I am taking 200mg up to 4x a day right now and am still taking 300mg gabapentin (Neurontin) up to 4x a day too.

Right now I am having burning pain (about a 7 on a scale to 10) on both the upper and lower teeth and deep inside my ear. I have noticed a new shocking pain in my lower jaw, about where my cuspid is. It's triggered by chewing or yawning, any kind of action that makes me open my mouth too widely. Sometimes just turning my head in the opposite direction sparks it too.

I am going to take another pill and try to head to bed. Just wanted to give an update.

Tuesday, March 23, 2010


I am back on Neurontin. I am taking 600mg 3 or 4 times a day.

Last Sunday I went to the hospital for IV Dilaudid, Toradol, and Decadron to stop the pain. It had really started getting bad on Friday afternoon and remained constant beginning Saturday. Friday night I had ice packed my face for several hours and ended up with a sunburn look the next day on my right cheek. Finally on Sunday I couldn't take it anymore. I always give it about 3 days before I decide to head to the hossy.

I went to the hospital where they have my records easily accessible. When we got there, I asked a staff member for a makeshift ice pack for my face. He returned with a bag of crushed ice wrapped in a pillowcase. I handed him back the pillow case to which he said, "That's going to be really cold on your face," and I replied, "I know. I won't be able to feel the ice if it's wrapped up in fabric. I need to feel it to distract from the pain." I think he was a little shocked watching me in the lobby for 45 minutes with the ice pack. By the time I was called back to the room, the ice was  melted and I was really feeling the pain. Doctor came in, very knowledgeable for an ER doc, and let me know what he was going to put in the IV. TN is something a lot of doctors and dentists don't know much about but somehow I always get the doctors who are a little versed in what's going on. I even had an RN who told me about another RN in the hospital who has TN and just got out of the hospital because it took awhile to get her pain under control.

Then the phlebotomist popped over to slip in the IV. I have uncooperative veins so it always takes them awhile to find a way to get the needle in. I told him they always go for the left arm in the "elbow space" - I have no idea what that area is called but it's my best description. Instead he tried a vein halfway between my wrist and elbow space. Unfortunately it hurt really bad when he put the IV in. When he flushed the saline I about died from the burning. So he took it out and tried the elbow space on my right arm. The first poke he did apparently didn't work out, so he tried another spot right next to it. Finally the IV is in and I am ready to go. (The next day, I woke up with a bruise in the shape of a cross where he had his first attempt on my left arm.)

Nurse came back and gave me the goods. Almost instantly the pain drifted away. Even though my face was hurting and hindering my ability to eat much that weekend, I scarfed down a large amount of food before arriving at the hospital because Dilaudid is notorious for making me vomit if taken on too empty of a stomach. I had no stomach pain this time around so I am glad for having eaten first.

Hubs took me home and we relieved his parents of our little ones. I was feeling good and was grateful to be rid of the excruciating pain. The next morning, I awoke with pain again. Not as bad as the weekend pain but still quite annoying. The ER doctor told me to go back on my Neurontin for at least 3 days and to take the full dose (600mg) each time. Wednesday will be day 3 but the way this is going, I don't think I will be stopping the meds. I am still having some pain, more than tolerable but less than intolerable.The zombie feeling side effect is rearing it's ugly head and that makes me nervous. Sometimes I think I'd rather be in pain than deal with the medicinal side effects. I am no longer supposed to take Tegretol because blood tests showed elevated liver enzymes.

I need things to get back in line, whether or not I have to take some medicine for awhile for that to happen. We are going on a spring vacation soon and I do not want to be worried about being in pain.

More updates to come. I notice I blog more often when I am having pain from TN so these posts might start appearing more than once a month.

Be back soon I bet!