You are best friend and it’s important to me that you know how I feel physically but most of all mentally and emotionally. When you call I hate bringing up my illness but the last few weeks my pain is constant, almost unbearable at times and it causes such fatigue on my body fighting it mentally.
I spend most my time in bed with a heating pad on my face,researching everything, for only you can really become your own advocate. If you stay quiet, you will be dismissed in whatever you are fighting for in life.
I’m a semi-expert on my disease and read medical journals now on the web that’s written from the experts, which are few. I would not hesitate to give an educational in-service to the 99% of the other physicians and especially their staff who know nothing of my disease.
I do not begrudge them however, I do understand that my disease is very rare and they can’t know every disease under the sun. I secretly wished "the worst,excruciating pain and affliction known to mankind stuck through medical school. But as of yet, I’ve had very little luck.
When I was in the ER a few weeks ago, trying to explain my painful symptoms and telling them it’s from my disease,Trigeminal Neualgia, the 3 at the desk, laughing around, said,“So, you have a headache?” My mouthed dropped open, I couldn’t speak. Weren’t they listening as I was standing before them crying? Never once did I use the word headache to describe why I was there. Hopelessness and defeat fell over me but thankfully Dave stepped in. I really don’t remember what he said but I was taken back to a room fast.
My family doctor is not a fan of pain killers and I actually stopped in his office at 7:55am that ER morning and spoke to him personally. Crying and telling him I can’t take the pain anymore he said go to the ER and have the attending call once you are there.
Dave could hear them on the phone talking but couldn’t make out the words. Now, I have to say my nurse was compassionate and listened to me. Spending just a few minutes with me and you could see the pain written on my face. Next thing I know, the poor thing came in with some meds to push through my IV and she couldn’t even look me in the face. I had to ask her what she was giving me. Toradol. I said nothing but turned my face away from her so she wouldn’t see the fresh tears. “Oh, God, how much longer must I suffer today?” “I’ll be back in 20 minutes to see if it helps” and left the room. After 25 minutes, Dave had to start getting people’s attention again, that I’m suffering here. Help came quickly. Next, came the Morphine. I’m thinking, “relief is coming, hang on a little longer, Karen” My nurse was chattier this time. “20 more minutes to see if this helps” I was so hopeful it would but as the clock kept ticking away, nothing changed. Scary thing is for someone with chronic pain, the first thought for me was not,"Oh, God, I still hurt but how do I tell the ER doctor that Morphine doesn’t touch my pain. I’ll look like a drug seeker for sure!"
Laying there crying and it’s important to mention,that I have to catch my tears with a Kleenex or something, because if I let the tears run down the side of my left face, the tears burn like acid. Yes, it even hurts to cry.
Now after laying there another 20-30 minutes which can seem like forever while in severe pain, the ER doc comes in personally, hearing of my unrelenting state. His eyes grew huge saying I can’t believe Morphine hasn’t helped. I actually apologized to him, why, I don’t know? I said, “I’m sorry what you tried isn’t helping, I sure wished it had.” By God’s Grace, he is moved with compassion and believes me. Now he apologizes. "Your doctor wanted me to start small on you but now I’m giving you Dilaudid and Valium. Try and relax now."
I finally found relief and knocked the pain for around 6 hours. But it was the best 6 hours I have had in forever.
Then it slowly returns. Always does. Always will. I’ve learned staying as calm as possible through the pain helps some so I have Xanax XR or other short term nerve medication. I try not to cry during bad pain, the tears and the muscles of your face contracting from the act of crying increases the pain tremendously. That’s emotional cruel in itself at times but I’ve learned to keep my mind strong and I focus on Jesus then.
I know He knows how I feel. He suffered in His beatings and crucifixion
He knows my nerve pain that is unexplainable to you. He holds my hand and comforts me. And because I can’t cry, He weeps for me. Jesus wept too in this life.
I believe in miracles and I believe He can heal me. I have so many people praying for me and I ask Him to heal me all the time. Who am I to know the mind of God? So, until He does I pray for His strength to endure and courage to fight another day but it should would be nice to know what He is waiting on…
I’ll write more later. It’s just starting to sink in how my life will never be the same. I can give you medical definitions and grim prognosis but I still can’t comprehend this is me, my life we are discussing. Some form of denial or coping mechanism.
But try and imagine this before I finish.
Some invisible thing has a sharp brand new razor blade and just slit your bottom gums wide open. But there is no blood and no wound for you or anyone else to see. But it 's real! He also takes the blade and cuts tiny slices in the side of your tongue by the gums. Still no blood and no visible wound but the pain could make you vomit and lay down in bed and dare not move. The roof of your mouth is on fire. Most days he like to take pliers and pull on your teeth randomly,here and there, you never know which tooth, and when he is going to pull on the tooth. Your inside jaw joint somehow has this unseen wire stuck way down in it and is popping out through you. You can’t open your mouth and chew food like you use too. Eating is for survival now, not a luxury. You pretty much have a liquid to a soft food diet. Consider yourself a 80%-90% Vegan. What’s for dinner? Not Beef!! And be thankful when you can eat! I have had chicken a few times but you might get 3-4 bites in before your jaw says Oh Hell No! Sometimes that invisible wire pops out and you can’t eat at all. Now, let’s talk about hunger. And not just every once in awhile. I cried from hunger almost once a week at first. Then, I guess my body began to get used to it and now it’s just a couple times a month.
Now with all of this is, it’s all numb. Half my tongue upper and bottom teeth and gums. Roof of mouth. Like you just had been numbed at the dentist.
I’m weak. Not just from food. I do try and take vitamins, good supplement shakes, Whatever I can do to stay healthy. Soups. But fighting pain 24/7causes much fatigue .Physical fatigue. Mental Fatigue.
Now, let’s talk about the outside of your face pain. If you touch my face, lips or chin, I could slap out of instant reaction. Half numbness with painful feeling. The little soft touches hurt the most! The wind. Your sheets or your soft blanket grazing by your face in bed. Get this one, your own tears streaming down your face cause you Great pain! I have learned to feel great pain and shed no tears .A soft human touch hurts. I don’t know the feel of a romantic kiss anymore. One strand of hair on my face hurts so bad.The fur on a jacket or a sweater, you don’t realize how often it touches your face and hurts, That a NO- NO. .The Cold will KILL you. Add Rain to the cold and don’t bother getting out of bed.
Now, I always feel it You are always weak, always tired, and the medications they give you has some nasty side effects you will always live with because you will always be on them.
The only small relief I have right now is Vyvansse, a stimulant, for a few hours. Hot weather helps. High doses of pain medication is my only hope but not your average little pill for your back. It’s the only thing that will help. Proven over and over by medical journals even Mayo Clinic. But strong narcotics won’t stop it or make it go away but will give me a life again outside my 4 walls.
Nerve Damage that’s numbing but continually painful to the Trigeminal Nerve is called Anesthesia Dolorosa.
Thanks for reading. I don’t expect a reply. There are no words. I will have to one day grieve the life I had and the person I was. Everything has changed for me in this life. I just need loved ones around me to listen and cry with me when I do. Always pray for me and with me. Don’t tell me it could be worse because that is cruel to say.
Pray for my children and husband. This disease robbed them of the mother and wife they knew and miss.
Encourage me to keep fighting the good fight and press on: keeping my eyes always on the Lord.
Lovingly,
Karen
I pretty much know how you feel. My AD is almost as bad. The other day I reached down to pick something up and hit the top of my head, hard. It hurt so badly the other pain from my Ad in my left side hurt so bad I had to sit down. My husband sitting right there never said anything. I had tears down my cheeks, which like you, they hurt 24/7. He never asked are you all right? I was hurting so badly. I think he just block me out. No one cares or listens. I hate this pain. People look at us like we are crazy. I could really cry fro the tie I get up til I go to bed. That is the only place I get relief. No one understands our pain. Like you though, I don't think there seems to be any thing for us except suffer. Hand in there Karen. I'll think of you then I'm suffering and acknowledge that some one else has it as well.
karen,
thanks for sharing your story. it's horrible. i'm sorry.
i wish i didn't but I understand everything you said.
don't hesitate to msg me if you ever need to talk.
i wish you and santafered all the best.
Karen. I would love to give you some peace and some prayers you find comfort in knowing others feel your pain. I was in so much pain one day I had to phone family doctor for appt as my meds needed something else to compliment existing meds. She said I sounded stressed out. Yes i was at that time my TN was preventing me from working most days and night shifts I had family issues with a son going through a separation and my mother’s health was deteriorating and needed a caregiver and family leaned on me - the sick one who was least able to care for myself much less a dependent in another city. Driving was a thing I should not have been doing because of the high does of meds. My nurse asked if I wished to see a stress counselor the same day at my clinic. I would take all the help could get. After speaking with him who was a mental health doctor he mentioned that I talked or said TN over six times within the first few minutes. He did refer me another agency for stress but if my pain returns post MVD which it has been doing in this cold winter - I think I am going to carry a copy of Striking Back with me and have pre-marked pages of where if it into that book. Let them read if you cannot speak. That has always been a fear of mine. Some other TN people ihave met carry a list of their meds and have arranged for their doctor/neurologist to write out a prescription for Dilaudid drip to give yo the ER people
I sincerely hope and pray you will find a few minutes each and every day when the TN beast will sleep and make you sigh with relief
Chippy
I have had this pain off and on for the last 35 years. I was prescribed tegretol which helped for quite a few years. Over the years I had to have the amount raised till I am where I at the max amount that they can give me. Now I have to see the neurosurgeon to see what my options are. One positive thing out all of this is that I have lost weight, because I don't want to eat.