Tuesday, September 21, 2010

Frustrations of TN

As you all know Far Guy has Trigeminal Neuralgia, if you don’t then let me just say that is is the most horrid disorder that has a mind of it’s own.  Far Guys pain is always present..but then he gets a “spell”of excruciating pain.   Anything can trigger a spell..eating crunchy food, brushing his teeth, someone touching his face, a hug, the wind, and stress.  September has not been a good month, this is his third “spell”.. It began Saturday night when I was gone..the stress of me being gone could have triggered this “spell.”  He helped Jen cook supper for all the gals at the Scrapbook Retreat and was doing just fine until he returned home.  Of course he told no one, when I returned on Sunday he was in a full blown “spell.” He had already taken some of his pain pills, there is not much I can do except take him to the ER which he refused to do or wait to call his Doctors on Monday morning.

Our Neurologist. Dr. P  is on vacation..someone will return my call…we wait and wait.  Far Guy finally called his Primary Care Physician because he is sure his pain meds are too old to be effective. (I called his Pharmacist..they are still good.)  Later that Nurse calls with a new script..I ask if we can increase the dosage to get on top of the pain..she says “NO.”  I said OK tell the Doc that we will be at the ER then..she says well if it is that bad maybe he can give you something else…the something else was a pain patch.
 
Finally Dr P’s nurse calls me back to find out what the problem is, a different Neuro will return my call, a Dr. F.. I said “No thanks, he and I do not see eye to eye, and he was no help whatsoever a long time ago when we had him.”  ( I am still waiting for him to return a phone call I left for him two years ago.)  She is so sorry..well I am too..there is a Doctor C. that might be able to speak with me today.   An hour later he calls..he doesn’t quite understand the division of power between the Primary Care Physician and the Neuros.( The Primary Care Doctor handles everything but the TN..but he ends up prescribing the pain meds for it.)  He doesn’t like that the Primary Care Physician has ordered a Pain Patch..we can use it, but are to be careful of side effects. He tells us to increase the Tegretol dose.  It always takes a few days for the Tegretol to reach higher levels in your system.  Dr P. says that he always wants to be aware of the dosages and wants us only to increase them if he says it’s ok, he picked a fine week to go on vacation. 

Well the excruciating pain left at ten o’clock last night..it lasted 48 hours this time..was it the pain patch that worked or was the spell over?  Far Guy took the patch off in the middle of the night..it was supposed to remain in place for 72 hours..he said it was making him breathe funny, he was dizzy and sweating.

This morning I tried to make an Appointment before our November Appointment with Doctor P.   We are on a waiting list, because they are full.  So I will print out this blog and send it to Dr P..I am sure that he will squeeze us in sometime…or at least call me with further instructions.

I hate being a bitch, I really do, I realize that these Medical people have their jobs to do..but I have to be proactive about the care my husband receives.

I know that Lisa, Shirley and Grace all friends of Far Guys read this blog..they have TN too. Many people out there have TN..no research is being done, no one is doing Jack Squat to cure this disorder…sometimes it seems that no one cares either.  It is often called “The Suicide Disease” ..I wouldn’t have been able to understand how that was possible..but I have seen the pain and felt the helplessness that Far Guy has..only wanting to be free of the pain.

Far Guy just asked me what I was writing about..he also asked me if I have any pretty pictures today..nope.. none today.  I am just thankful that this “spell” is over..it was the worst one in a long time.  Today he will rest,  perhaps we will go for a drive later and look at some pretty leaves turning colors and then we will come home and have a nap:(

26 comments:

  1. So sorry, Connie. It sounds like a truly horrible disease. I don't know what to say except continue to be the screeching wheel on behalf of your precious husband.

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  2. Oh that sounds like a horrible disease!! I am newer to your blog and didn't know FarGuy was suffering with this. Yes--screechy wheel is the way to go! I hope you both get a nice nap in today. *hugs*

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  3. Funny how our doctors seem to take their vacations when we need 'em most.

    I'm so sorry Far Guy had to endure such horrific pain without the compassion of a good Doc. I won't even get started on heath care, honey it's not pretty.

    My prayers are with ya and your guy and enjoy your nap sweetie!!!

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  4. I am so very sorry. I often wonder if the doctors/nurses we are talking to have any idea what the pain is like. I find it helpful to share google videos to get my point across. It is the most frustrating feeling in the world to not have anyone to talk to when the pain gets so severe. Many of the TN videos show patients in excruciating pain who state that they don't want to live with the pain....while nurses try to find "somebody" to return a call. My prayer for today is that Gene will remain free of a spell at least until Dr. P can return. I pray for you too Connie as it is so hard to watch someone you love suffer and to try desperately to find help. Love you both.

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  5. Such a helpless feeling of not being able to help him. Hang in there. Wishing there was something I could do for you both.

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  6. Long lasting pain is the worst...it makes it impossible to enjoy most things...I feel for you both and will keep you in my thoughts...

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  7. I really wish there was something I could do for you both...I just pray it gets better!

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  8. Thank God the worst of this spell is over. I cannot even imagine how he deals with it, since if I get a toothache or a serious pain, I can't function at all or think of anything else. I am filled with sorrow that he goes through this, but it's wonderful that he has you to help however you can.

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  9. It has to be so tough. The person who watches over the one in pain feels so helpless and the medical field is flying by the seat of their pans. Personal health care would exist if everyone had to sit with a loved one with TN. I am so glad the spell is over for now. It is so hard and I am so sorry that Far Guy is experiencing it.

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  10. I am so sorry for both of you. We have struggled for 41 years to find out what is wrong with Terry. Although, he doesn't have that type of pain, havn't medical help is just not there.

    I am praying for both of you!

    Linda
    http://coloradofarmlife.wordpress.com

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  11. Oh Far Side, I am so sorry. How horrible for both of you. I wish there was something I could do to help.

    The Duchess

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  12. I'm sorry to hear that he had another flareup. Hope you've been able to go out and enjoy a nice almost-autumn day.

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  13. I know how it feels to watch your husband in pain The Bennie has Crohn's disease and when it attack he will wait until he can't stand it any more ,then we end up in the hospital. So sorry about Far Guy's pain.

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  14. So sorry to hear about Far Guy! Its great that he has you there to help, even though you may be feeling like your not just being there for him can help him in many ways! I hope you both had your nap ! I feel for both of you !

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  15. I agree with what most everyone has written. You are to be admired going to the lengths you did to try and get him some relief. Patients have to have advocates - - and strong ones. I was my mom's advocate. I had to stand up to two doctors and dismiss them from her case (one in NY and the other here in TN) when she was in the hospital and they were messing with her meds to the point she was in GREAT anxiety. I was not popular some days but I couldn't stand seeing her suffer. I like the idea Mildred had of making a video for the doctors - - - but I hope he doesn't have another episode and you have to do that.

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  16. Yes, but he is better today right? We will take the better days over the bad days anyday... chin up!

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  17. God bless your Far Guy and you. Doctors are so detached from their patients anymore it is pitiful. We have been going through the same thing with my son,seems everytime he needs a certain doc,they are on vacation and no one else knows squat.
    Blessings to you and Far Guy.

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  18. All my sympathies are with you and Far Guy. Thank goodness he has you to fight for him!

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  19. So sorry, praying that pain stays away GW

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  20. So sorry to hear about Far Guy! You go get em, Connie! Far Guy is lucking to heave you there to help him when he is suffering. So why isn't there any research being down on TN? Isn't it an important enough condition to warrant research? Hopefully he doesn't get another flair up any time soon. My prayers are with both of you.

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  21. I am so very distressed for your Far Guy. Okay, it is early in the morning and distressed is such a pathetic word for what I feel. I have been sitting here mixing praying with cussing. I'm no stranger to chronic and then flaring pain of different sorts but this level Far Guy suffers is truly horrific. I will of course have you on my mind and heart while I am gone to the fair.

    I have been bolstered by your checking in on me during my wedding absence, thank you so much, rest and rest your man, I'll come talk again in six days.

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  22. Hi:
    This is "Shirley" and yes I have TN. Mine was treated with surgery in 2001 but I was left with what is called "anesthesia dolorosa" which in my case consists of never- ending sensations including a 24 hour a day kind of odd feeling like that you have when you have novacaine at the dentist; itching; burning; eye tearing; runny nose - all these triggered by eating, talking, brushing and flossing. cold breeze, heat, etc. - on and on like that.

    The good thing is that I no longer have the exccruciating pains Far Guy gets.

    Far Guy, I hope the docgors can help you. My heart goes out to you and your dear wife.

    I read the blog every day and also enjoy reading the blogs of your friends as listed on the left side of your blog.
    Thanks for alol this good reading every day.

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  23. That sounds really horrible. Good on you for being so proactive. I had to google TN, but reading what is says there certainly doesn't have the impact that reading your post does. It was interesting to read the comments at the end of the emedicine site, as to what helped other people. And I hate to suggest anything, as I'm sure you have checked it all out, but just in case....a naturopath/chinese herbs? All the best to you and Far Guy, and I hope you had a good day yesterday.

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  24. My heart goes out to the two of you and anyone else suffering from such pain and from the frustration of dealing with the medical community. I had many years of it when taking care of my Mom and you can feel like a real bitch sometimes but you do what you feel you need to do to get answers and faster help and to get a group of doctors and nurses to talk to each other and get on the same flippin' page.

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  25. You know when you read a blog post, and you find yourself gasping, and holding your breath, because what you are reading is so horrible....?

    I am so sorry, this is unimaginable for us, continuous pain, unremitting pain. And obviously what we write isn't much comfort, but I am so sorry.

    Give him a great big, careful hug from us please.

    Jen @ Muddy Boot Dreams

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  26. Oh wow I didn't know....so very hard to hear this. It's terrible when the our love ones are in pain!!

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Thanks for stopping by! I appreciate your comments! If you have a question I will try to answer it here. Connie