June

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."  - http://helpguide.org


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. 

May

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.

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.

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.

March

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!

February

It's been going well since my last post, except for the last 4 days. I have been in pain. It hasn't been as bad as the Thanksgiving debacle but it's been pretty consistent. On top of that, today I am feeling extremely exhausted, very weak, and overall yucky. I have not been taking the Neurontin on a regime, only as needed. I had scheduled visits to both my neurologist (Dr. B) and neurosurgeon (Dr.C) this month, as well as repeat blood work to recheck my elevated liver enzymes. Dr B told me to stop taking the Tegretol for attacks and rely on just the Neurontin since the Tegretol was the suspected culprit. Dr C and I talked about other options for treating the TN if the attacks get much worse and the medication proves to be too hard on my system and too much for me to handle. We both agreed that I should save any procedures (Gamma Knife, etc) as a last resort. TN sufferers know that the more procedures you have the less effective they are and there are only so many that can be done. In my case, a repeat MVD will unlikely help since my problem was due to a large vein and the position of part of the vein in an inoperable area.

Anyway, I am just trying to get past this attack. It's not bad enough to take Dilaudid...yet. 

January

This month has been great as far as TN pain goes. I haven't had a tough time and just a few moments of pain (a 1 or 2 on a scale of 10).

I have been getting back into the swing of things this month. It feels good to be back to my old self. There were so many days I felt like a zombie last year, a horrible side effect of the medication I was taking.

It probably seemed I was bedridden most days and just incapacitated but that isn't how it went most of the time. Dan and I had a conversation about last year and my health problems. Granted, there were times I just couldn't take care of myself and the kids but the times I did - even if I didn't feel able to - greatly outweigh the former. Dan has been a great source of validation for this and in going through his paystubs for tax purposes, those check definitely reflected him being at work more than he was home. In fact AFTER my surgery, he was home more overall than he was the entire time I was dealing with this neuralgia and some of that can be contributed to him going back to school full time. I'm not being ungrateful to him as a supportive husband, in fact he is the one who told me I needed to give myself more credit for having accomplished all that I was able to. He reminds me that although he did come home early from work sometimes, or missed days, that there were more days that I toughed through it to put dinner on the table for the kids. It was nice to hear him recount those times since I've been getting the gist from people that Dan just did everything around the house and still continues to do so. I don't quite understand how some people have gotten the impression that I didn't contribute to the household or parenting the kids when I was "sick" because I sure remember doing it while feeling like hell. I hope that clears up any misconception that I did more than just lay in bed all day.

I have NOT been taking meds regularly and I've still been avoiding caffeine and other such triggers. I was getting ready to go to the dentist after Christmas but I chickened out. I am still terrified it will trigger an attack, especially after I now know the attacks are still a possibility. I will keep working on it. I would rather go during the neuralgia but I would rather never have neuralgia again!

I hope that those dealing with TN have found this blog useful. I promise to keep giving updates.