Apr. 18, 2007 - Horrible Yet Sweet
OK, since I referenced my neurological disorder in my last post, several of you sweet friends have asked questions about it. Fortunately, I had actually just typed up a big email about it all, so it is easy to add it here. AND, one of the most amazing things to happen to me on this journey occurred this week- I'll include it at the end. Warning- this is a long post. If you don't feel like reading the whole thing, scroll to the bottom for my big blessing. :)
To read about the condition, check out this website. This one has more info than the one I referenced in my other post. Basically a horribly painful disorder involving the trigeminal nerve that doctors can't usually explain.
At the beginning, I had an MRI to rule out a tumor or MS and saw a couple different neurologists.
My TN is atypical... I'm young, I have it on both sides of my face; I have no triggers. In some ways it is good that it is atypical- I don't have the horrible triggers like brushing my teeth or wind that send me into excruciating pain. But on the other hand, I never know when I'll be hit, and atypical is harder to treat.
The attacks started 3 years ago out of the blue. I get severe pain usually in my jaw area. I can get the shooting pain a few times a day just for a few seconds. The major attacks, though, are what are horrible. They typically last 40 minutes. (I had a major one last week that was only 10 minutes and we were amazed- and thankful!) It really is indescribable. Far worse than induced labor with pitocin and no pain meds, which I've done a couple times. :) And no sweet baby to show for it! There have been moments in an attack where I've actually wished I could just die.
I have gone as long as 4 months without a major attack. At the worst, I was having minor attacks several times a day and up to 4 major attacks a week. The one I had last week was the first one in a long time. It is always a little disappointing when I've gone so long and then have another one- I keep hoping I've been completely healed.
I try to breathe through the attacks; I also cry a lot and kick and moan. Very pretty. Then afterwards, I can have a duller aching for even 10 hours. Not horrible, (in comparison, nothing I have is horrible) but I don't really want to do anything. That hasn't happened in a while. Big attacks really, really wipe me out and I have to rest the next day or two a lot more. Scott compares it to labor- the energy it takes to make it through it. This is one of the hardest things about it for me- I can't function in my normal role the next couple of days.
We definitely think stress contributes. The neurologists say that stress can't trigger the attacks, but that it can increase the pain. So I really think that when I'm under a lot of stress, what could have been just a couple seconds turns into the more excruciating 40 minute ones. Just my theory. So this past year we made a point to watch my stress level; not do so much in ministry; let the house go, etc. I've done better.
I tried a drug a couple of years ago. It was an anti-seizure drug. I think it helped, but it also made me gain weight; I had headaches, vomiting, etc. So with my attacks relatively infrequently, it isn't worth it. But if it does get worse, I would try something again.
The only thing that helps is having someone with me, praying over me, reminding me to breathe through it. I can get a little panicky, I think. And I have several scriptures that I like having read aloud. I tend to nearly break the hand of whoever is with me, I'm squeezing so tight. I've learned to grab a pillow when I feel one coming on. I typically have a minute's worth of warning at least, so if I'm driving, I can get off the road. It has only happened to me a couple times driving, and only once with the kids in the car. One of the most frustrating things is not knowing when it could hit and knock out a couple days. For a while it was hard to plan things where I'd be alone with the girls in the car or something.
Supposedly the condition worsens with time. I can't think about that too much.
In a strange, strange way, though, this horrible disorder has been a very sweet blessing.
I have learned so much more about God's character through it.
I have learned to trust Him more.
I have a greater understanding of suffering.
My life verse is Philippians 3:10:
I want to know Christ and the power of his resurrection and the fellowship of sharing in his sufferings, becoming like him in his death, and so, somehow, to attain to the resurrection from the dead.
And now... perhaps the most amazing thing to come through this journey happened to me this week.
"Then you take the crowning with thorns," adds the medical examiner. "People think that was just a parody, a mockery, of His kingship, and yes, that was part of it. But the effect of the crowning of thorns was far beyond that. More than mockery, it was another infliction of severe pain that added to the shock.
"What happens is that if you analyze a plant like the vizziphus spina christii or 'Christ thorn' plant, which may have been used, that would cause a condition called 'trigeminal neuralgia,'" says the anatomical expert. "I've seen many cases of it, and it's a very severe pain that goes across the face.
I'd never in my life heard the words trigeminal and Jesus in the same context. Except when I'm begging Him to make the pain stop. :) A friend wrote the following to me after I shared this with her, and I think it expresses my feelings perfectly.
What a precious outpouring of God's love to show you that He intimately understands your suffering and that you are invited to 'participate in His sufferings' in such an intimate way that few people understand.
I truly feel blessed.
Comments
Apr. 18, 2007 - Untitled Comment
Posted by nsremom
whoa, so glad I stopped over here this morning. The way your mom summed it up was amazing. gave me chills.
So, is it hard for you to let things go for a couple days? You better do it! There are those odd ladies who go jogging or something crazy after labor, but hey....they're odd. :) The average gal needs to take it a bit easier afterwards. So, your husband used a perfect analogy that we all can understand.
Do any migraine meds help? Like pure oxygen (helps a friend of mine) or migraine shots? (helps my stepmom)
Apr. 18, 2007 - Untitled Comment
Posted by EEEEMommy
Thank you for sharing with us!
"Please, Jesus, Please!" That's the phrase that has taken me through all of the most painful (which don't compare to this) events in my life. Much to the amusement (and perhaps consternation) of my Jewish OB as I repeated it over and over in my 3rd labor, I heard that it launched the doctors and nurses into an intensive religious discussion afterwards.
In her Lord, Heal My Hurts Bible Study videos, Kay Arthur has one video about the specifics of the pain and humiliation that Jesus probably suffered before His death. It is horrifying to hear it, but her whole point in sharing it is to encourage those who have been wounded, hurt, suffered pain, humiliation etc....how wonderful that you have been encouraged by understanding the extent of Christ's sufferings for us! He really does know!
I will be praying for you even more!
Apr. 18, 2007 - Unbelievable
Posted by StillHisGirl
I just have to say, if you actually are here and read through that horrendously long post, I LOVE YOU!
Emily, I have migraines, too, and am hoping to see a doc soon and get some good drugs.
Thanks, girls.
Apr. 19, 2007 - Untitled Comment
Posted by debbiecorley
Oh Friend,
I don't even know what to say. I'm crying and so sorry that you have to endure this. But, I think it is *so* beautiful that you have found Jesus in the midst of it all. I love that you have that special connection to him that comforts you and makes you feel less alone. He truly does know ALL our pain. He makes all things new through the power of His blood...His suffering brings new life. And hope. So, I hope for you, pray for you, that He takes this disorder completely away, but until then just rest in knowing that your suffering is drawing you into a deeper knowing of His love for us.
Apr. 19, 2007 - Untitled Comment
Posted by Diane
I'm not sure how I stumbled here onto this blog, but wow, this post was so powerful. I had chills as I read the last part in particular. I had never heard of TN before today. I pray you feel God's embrace every time you have to go through this.
Take care, friend.
Diane
Apr. 20, 2007 - Untitled Comment
Posted by chickadee
i have never heard of that before but it sounds just awful. i will pray for you.
Apr. 20, 2007 - Untitled Comment
Posted by PumpkinsMomma
This is amazing! Thanks for posting more about this. I am SO sorry for what you are going through. I can't even imagine how scary it is, I get migraines so I can sorta understand a sudden and unexpected pain, but I can typically still drive home when the migraine first starts. I can't take medicine for it though, so I just have to endure the pain - but it is nothing like what you go thorugh - You are a brave and special person!
I hope that your attacks continue being shorter then usual. I am praying for you. Marie
Apr. 22, 2007 - Wow
Posted by NeverAlone
that is beautiful! I am sorry for your pain, but what a sweet blessing to come from it.
Jun. 25, 2009 - Crown of thorns Trigeminal Nerve
Posted by Kimberly Marin
Hello I am amazed because we came to the same conclusion.I have this condition as well.Although I have triggers and it's only on the right side.This past Easter I did some reflecting on that crown of thorns and I realized that Jesus felt my very pain(although I am sure His was worse).Not long before mine were in my eye and forehead.When I realized that crown of thorns most likely hit on that nerve I was so comforted.I praise Him when I have my pains.I know I will be healed of this someday.Right now I am in remission and it is glorious.You almost forget what it's like or that you even have something like this.It sure is a comfort to know that not only did He take those stripes,and give up His precious life for us but He felt all our pain too.What a wonderful Saviour.Praise the Lord.
kymbreleigh@yahoo.com
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