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Thread: Trigeminal Neuralgia-Whats Next?

  1. #1
    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Default Trigeminal Neuralgia-Whats Next?

    Hi Everyone,

    As many of you know, I had something happen to me earlier this week that was easily the most painful experience of my life. I have SLE, and I learned just over 1 year ago that I also have MS. The other day I had a bright flash of light in my right eye, and a sensation of electric shock and burning through my jaw, face, head, and down into my neck and upper arms. I collapsed, got sick to my stomach, and found myself begging for someone, or something to make the pain stop. I cannot even begin to explain just how intense the pain was.

    My Neurologist says he's 99% sure that what happened to me was a bout of Trigeminal Neuralgia as a result of myelin damage from MS, and after reading everything I could find on the condition, I am inclined to agree with him. It is a condition that occurs in only about 4% of people with MS. Apparently, a bout of TN it is considered by the medical community to be the single most painful condition/event a person can experience. And, it's considered a "suicide disease", gee, how uplifting!

    One of the effects this condition causes, is a fear of it happening again. I have been taking a mild sedative, and it has helped me calm a bit and I've been trying to wrap my head around this new problem. There are meds that can help, and I will be discussing them with my neurologist tomorrow. In cases that don't respond to meds, there is a surgical procedure that is fairly effective, but, it involves neurosurgery on the Trigeminal Nerve which is located deep down near the brain stem-eeek! Two days ago, the thought of brain surgery would have been absolutely terrifying. But I have to be honest, if I was presented with the choice right now of another bout of TN, or brain surgery, I'd go with the surgery no questions asked. What I experienced the other day was so terrible, that I would rather have frigging brain surgery than go through that much pain again. It's insane, but I'm comforted by the fact that there are different options for treating this. I'm telling myself that the meds will work. Can't think too far ahead.

    Anyway, I know people here have been worried. I want you all to know that my sister who is an RN is staying with me for the next few days. If I have another bout, she'll take me to the hospital where they will give me IV pain meds until it passes-there are no pain meds that you can be prescribed to take at home that will work. I'm avoiding steps, and carrying things like hot coffee in case it happens and I inevitably hit the floor. So, I have help here if I need it, I'm seeing my neuro for a follow-up tomorrow, and I have options for treating this. That's the best I can expect from this situation at this point, and I'm OK with it.

    For everyone here who has given me comfort, understanding, and a shoulder to lean on, I want to say thank you. I could not face this without the support I recieve here from all of you.

    Rob

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    Default Wow

    Man o man, Rob...I feel for you. I'm really sorry to hear about this latest development. It is encouraging that there's a treatment available. As my granddad used to say, 'you don't need brain surgeons or lawyers very often, so when you do, get good ones.'

    Best of luck and keep us posted.

    BTW - do you have any interest in an assistance dog? I worked with an org years ago to provide a dog to a farmer who was disabled in a motorcycle accident. I remember the founder of the training center that provided the dog had MS, and had a wonderful Great Pyrennes assistance dog. He was roughly the size of a small country, and helped her with all manner of things, including just providing (silent) companionship..

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    Hey Rob,

    I havent looged in, in a day or two.... First, Im glad you're okay, phew! TN, huh? Im so sorry you're going through this and Im even more freightened that you were alone the first time this occurred. Im glad your sis is staying with you for a couple of days. Also, its a relief to know that you have options in this type of disease. Im glad you're optimistic and positive thats the type of attitude that will pull you through this. Rob you're definitely in my prayers. Keep me posted. Take it easy, real easy


    your friend
    Chriss
    Live, love, and most importantly be grateful!!

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    Hi Rob,
    I am soooo relieved to know that you are not by yourself and that your RN sister is with you ( I am being biased as an RN ). Just wanted to let you know that you are in my thoughts and prayers. Hang in there Rob!!!


    When things go wrong...

    When things go wrong as they sometimes will,
    When the road you're trudging seems all uphill,
    When the funds are low and the debts are high,
    And you want to smile but you have to sigh,
    When care is pressing you down a bit
    Rest if you must, but don't you quit.
    Success is failure turned inside out,
    The silver tint on the clouds of doubt,
    And you can never tell how close you are,
    It may be near when it seems afar.
    So, stick to the fight when you're hardest hit
    It's when things go wrong that you mustn't quit.

    —Unknown

    Just thought I would share this poem that has gotten me through some rough times with my illness and challenges of life.

    Dassar RN

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    I know...you are okay with it Rob..but I wanted to post this prayer. Couldn't hurt, eh?...Head hugs..Love.Oluwa

    Dear Heavenly Father....

    We remember before you all who are sick this day. Give them courage to live with their disease. Help them to face and overcome their fears. Be with them when they are alone or rejected. Comfort them when they are discouraged. And touch them with your healing Spirit. Thank you Dear Lord...Amen
    I have Lupus. So *^#@! what.

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    You are in my thoughts and prayers today, Rob......today, tomorrow and always.

    I'm relieved to know that your sister is with you for a few days...I was worrying sick about you being alone. Now I know you'll be well taken care of, won't be alone, and you'll be able to take it easy and lay low. Also a relief to know you'll have some companionship to help ease your fears....someone that's right there to talk to.

    It deeply saddens me to know that you had to experience the worst pain imaginable....I am truly sorry you have suffered this experience.

    After reading through what's going on...what you wrote about the options for treatment, I feel helpless in finding the right words to comfort....so I went to my church this morning, to our Prayer Chapel, and lit a candle for you.....and spent some time in prayer with God on your behalf.

    I know you are not necessarily a believer, but I am.....and last night I remembered your past comment to me about my prayers for your Nephew when he was enduring the worst imaginable. My God listens to me....and answers my prayers. I am certainly not naive in believing that the answers will always be what I want, or what I ask for....but I prayed hard for your mind to be given a sense of peace about this, a protection from the fears, and for all things to be worked out for good for you. I truly believe that you will be led to the right treatment....the best care imaginable....and that things will work out for your ultimate good. You are not alone in this....

    I'm just a PM away if you need anything....talk, vent, unload, cry, scream, cuss, kick a dog (just kidding on that one, only said it cuz I know you're a cat person and I know your feelings on dogs) ...and my offer to perform small errands around WHL in any way, is a standing one. Never hesitate to ask...nothing is too big...or too small.

    You are dearly loved by your friends around here...and when you are suffering and dealing with yet more on your already heaped plate....we've got your back.

    Rest up today....veg on some more of those classic mafia movies, or a good Eagles concert. They always bring me peace, wonderful memories, and make me feel better. Wish I could get them to actually come to your house and play a personal concert right in your living room....is it big enough for their amps and mike stands?? If not, we could leave the couch and move the rest of the furniture outside for a day. I'll look around today...I think I've got Don Henley's cell # somewhere around here...

    I'll be waiting to hear how things go tomorrow at your doctor appointment....

    Take care of yourself, my fellow Pink Floyd buddy!

    Love,

    Lori

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    Wow, sorry to hear Rob but at least you know what's happening now. Brain surgery is scary but at least there is possible cure to help give you some relief. I hope you don't have any more episodes or that the meds will work for you and you don't have to go under the knife. Keeping you in my thoughts with fingers crossed!

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    Rob,

    I am so sorry to hear you had this episode. I am glad that your sister is there to help you though. I couldn't begin to imagine that type of pain. I will keep you in my thoughts and prayers and I hope that it doesn't happen again!

    Keep us posted on what the doc says at the next appointment. I think an medical assistance would be a great idea if you are not allergic or have a dislike for dogs too! You know we are here for you so let us know if you need anything!
    Diagnosed in 1990 at age 11.
    Trust in the Lord with all of your heart!

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    hi rob,

    thank goodness for your sister, i know her presence brings great comfort to you. PLEASE take care of yourself, take everything slowly, and follow drs. orders. Let us know how your appointment goes tomorrow. Where brain surgery prospects are frightening, they are not nearly are frightening as the possibility of having another bout with TN.

    keep us posted, you know how much we all care for you.
    Phyllis

    share a smile today

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    Rob,
    I am glad to hear you have a sister who is not only able to take care of you physically and emotionally, but with some medical knowledge as well.
    Surgery scares me, but in your shoes, I think I might feel the same way. I am keeping you in my thoughts and prayers.
    Sandy
    As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.



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