This week has SUCKED!

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Teal for Trigeminal Neuralgia! I had a horrid week. Monday wasn't too bad. Until Monday night, when I was brought to my knees in a serious TN attack. Which lasted thru the night. I did take some pain meds to try and "calm it down a little" which we all know, normally do not help. My daughter was a rockstar, holding my hand, telling me to breathe thru it, wiping my tears, telling me it will be ok and I'll get thru it. A lot for a 16 year old girl to handle. Tuesday, my mom brought me to the ER....puked my guts out on the way there, which was odd for me. Arrived at the ER my BP was only 90/58. Not so good. I got a bag of fluids, Zofran for nausea...Of course they had to do a mental health assessment on me cuz I told them I have thought of suicide....*DUH its the SUICIDE DISEASE* Talked to a pharmacist to make sure my meds weren't having adverse reactions. Talked to a neurologist, who said I could increase my Trileptal to 2100 mg per day (max is 2400 mg). No wonder I'm a damn zombie and run into walls all the time. I don't think the PA on call had a clue as to what to do with me....so basically my BP came up and they sent me home. They did say they would put me inpatient at a Behavioral Health Hospital if I wanted them to! Hell I feel like I'm crazy most days, but I didn't want to be an inpatient. I decided to just go home, rest. Missed work on Wednesday, because of all the crap going on. Thursday at work was horrible, now I have excessive heartburn/acid reflux or something going on. I ate a ton of TUMS. Friday was much of the same. Of course, the pain meds from earlier in the week caused me to be all bound up, so my lower GI system was plugged. If it isn't one thing its another, and I'm super tired of everything at once. Today was horrible, again, had more TN pain, about a 2/10, not bad, but annoying...had major acid reflux, headache, and a lovely bout of anxiety, where I cried for a few hours. TN is evil. Not only do you deal with the TN part of it, you also have all these other medical things that go along with it, and honestly you want to just throw in the towel some days. Its been almost 8 years ago since I was diagnosed. I don't know what triggers my TN pain. August is normally a bad month for me (last year was terrible, if you look back & read thru my blog). September wasn't any better, and October was the month that the Mayo Clinic doctors told me there was nothing they could do to help me, because of the results of my MRI/MRA & I'm atypical TNer. Thanks Mayo Docs, for adding to my already horrid depression & adding anxiety on top of it!

Now what? What do I do, where do I go, who do I see, who do I believe? The ONLY thing I can do is lean on the Lord and put my trust in Him that he will lead me down the right path. Just need someone who will help me, take away my pain, give me the answers, someone I can trust. I've been so unhappy the past year, I don't even know myself anymore. And my family also suffers along with me. This isn't just a disease for the person who has it, it affects EVERYONE around you. Everyone! Even my co-workers have had to suck it up on days I can't make it to work. Not fair to them.

Right now, I'm just taking my meds, praying for no TN pain, and trying to get a handle on my depression & anxiety. I'm seeing a psychiatrist & a psychologist. I feel like a mental case, but I need these professionals to help me get thru this difficult time in my life. I just keep praying my TN will stay away and not attack me, ever again, but I feel the "twinges" of it lurking every day. EVERY DAY I think about it, every day, I wonder when its going to jolt me and drop me to my knees. I honestly do not want to live this way. I just want people to understand this disease, The Suicide Disease, and understand it is one of the most painful diseases known to man. I have Trigeminal Neuralgia, The Suicide Disease, one of the most painful diseases known to man...and I'm living thru it, trusting God to help me thru.

Just a few things on my mind tonight....

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Robbie,

I am so very sorry for your terrible week! It's not a lot of help, but I recognize much of the frustration, anxiety, depression and fear you are dealing with. It's hard to have any type of neuralgia- I've had Geniculate Neuralgia for three years now, 3 unsuccessful surgeries, countless procedures and meds- knowing exactly why our disorders are known as the Suicide Disease. It is such a challenge to keep working, raising a family, getting yourself to so many appointments, taking medications which are often not enough to keep the pain, anxiety, depression, stomach distress and all the other symptoms you mentioned at bay.

I am glad to hear you have your family to help you. I don't know how anyone manages to fight this alone- it is so all encompassing and draining. I too have seen the adverse effects my disorder and accompanying panic attacks, anxiety and depression have had on my family. It hurts to think my youngest daughter has always only known me as mama who hurts. My eldest has gotten used to "no" being the answer for everything- going to the park, store, party. My husband is a disabled Army veteran who needs spinal surgery, but he has been waiting for three years now for something to reduce my pain enough so that I can take over watching our children and he can finally have his pain addressed. We barely function as we wait for more procedures, medications and more isolation due to others not understanding the depth of our constant pain.

I'm sorry I don't have an answer for you, but I did feel every emotion and physical symptom you have jumping off the page as they are so similar to mine, but mostly I know your frustration. It sucks. When I tell my mother I have the Suicide Disease she gets upset and says I should not call it that as it makes her think that is what I will do. (I survived the time years ago when I desperately wanted to kill myself, and did not, so I promised myself I would never consider suicide again). I think calling it the Suicide Disease is necessary and should be repeated over and over, especially to the medical specialists we all deal with, because too often it seems since they cannot "see" our disorder we hover the line between legitimate pain and hysteria- at least this has been my experience. I have many tattoos from my younger days, and if I could ever afford to, I have an image in mind that I would have tattooed on my arm simply so I could show it to family, doctors, anyone that does not help or questions the validity of our horrid pain, so I could just say, "See! This is how much it hurts!" I realize there is little I can do, if anything to get those that dismiss this as largely a psychological issue to take it as seriously, as another neuralgia suffered suggested they would do if we could all simply ooze something, show something to indicate the all-encompassing, life altering changes that occur when we live with this pain each day.

Please know I am hear if you need to talk. It is hard to live through this pain, and I want you to know you are not alone. I wish you relief from your pain and anxiety and all the other pain and problems that go hand in hand with neuralgia. I am sorry you are suffering. I am too. I try to be a good listener, so write whenever you need to talk or vent.

RueAnn