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Trigeminal Neuralgia ... A Journey through hell

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Hello, I am a 44 yr. old woman recently diagnosed with Trigeminal Neuralgia. My Journey started Aug.13th to a trip to my local Er for face pain, but really it started ages ago with "Sinus Infection". For years I have made atleast 2 trips to the local doctor and its always diagnosed as sinus Infection. I have bought tons of antibiotics, allergy meds, nasal sparys and even tried the netti pot and nothing worked. It always comes back. Its always on one side. Its always worse. So of course on Aug. 13th, I was once again diagnosed with Sinus infection. This time it was different. This time It was so bad I could hardly stand it. It felt like something eating my flesh from the bone up, the pain was insane. So it did something I never did, I started to research Sinus. I found many posts about sinus being green/yellow nasal drip (I had none, may nasal passage was dry). It talked about sore throat as the post nasal drips down causing it (my throat was fine). It talked about pressure and swelling (none of which I had). So as I read on I found a post about Bacterial infection, but I didn't sound like what I had. As luck would have it I found one lonely post about Trigeminal Neuralgia. Boom, right there my world changed! I typed it in, found web site that explained the symptoms and what trigger the attacks, I wept as I read it finally a name for what I was going through.
The next morning at 8:30am I was on the phone to my regular doc. The woman is great she not only listens she Hears. She agreed and started me on 100mg of Carbamazepine. Yes its the text book starter and boy I was so happy. I rushed to get my new drug and start my treatment thinking all was going to be alright. Way wrong answer. As I took this new drug all the pain on the 2nd day moved to my lower jaw line and ear. Pain I have never felt before, they call Trigeminal Neuralgia the suicide disease I can honestly see why. This pain literally dropped me to my knees and cry like a small child, complete with the occasional outburst. I paced rooms, I stabbed me with forks, not deep, just enough to feel thinking it would draw my mind away from my face, I put Ice on the beginning of the nerve, Bad idea! I tried heat...another Bad Idea! After 1 day of off and on attacks I gave in and had my son once again take me to the local Emergency room. I told them I had been diagnosed with Trigeminal Neuralgia they gave me "percaset" to take for the pain. They ran some tests on my blood, l petrified the poor nurse, see after I got over the attack (yes I had one right in the hospital) I asked her if she wanted to take the blood from my face, hehe! See in my mind if she would stick my face, it might relieve some to the pain there. She did not of coarse. My son Ron didn't like that either, but oh well what do I care, I am the one who is in pain. The percaset seemed to do the job, well it did in my mind. Until I got home of coarse, wasn't no an hour and I was on my knees crying again. I prayed to god to let me die, apparently that was not in the cards, so on it went until Thurs at 2:40pm, my doc appt.
This time they all seen the pain, as I walked in I wept on my boyfriend, (the man who wed. finally seen what I was going through) today the seem to be coming in waves, 15 mins apart and ruthless as ever. My doc looked at me and new...so she sent me to UW Madison. After making some phone calls she said to go straight to emergency, a neurologist will be awaiting me. So off we went, the 30 min drive to a massive hospital, into the Er we went, I was not impressed with the staff there, I felt I should have been able to go right in and be treated. I grew angry a the wait and the others that were awaiting to be seen, laughing with their families while I was sitting there weeping and suffering. Triage it made me so made, that woman who did the primary exam and then made me wait, like a number! Even after my doctor called them and they were expecting me, so I waited and tried to be saintly and finally they called me back, in the middle of another attack. As the ER nurse walked and and seen me so, she said something I will never forget..."I feel so bad, let me get you something for this pain". She pic lined me for an IV and left. Three men came in all form of doctors, the one in black asked if it was ok that they student doctors examed me also, I said yes (I figure the more ppl know about this the more help there'll be later) and as they examed me and questioned me the angel of a nurse glided through the door and injected something into the set IV, in seconds the pain was gone. I was freed from 5 days of pain in seconds, Oh My God it was like the rapture, I was tested and I passed and the pain was gone. So my progress went into the doc asking tons of questions.
"What does it feel like?" I told them bugs boring in my face and the receding back to their original start point.
"When or what triggers it do you feel?" Eating, light Breezes, extreme temp changes, some times nothing they just come.
"How often does this happen?" 3 mins after eating, otherwise I can be calm up to an hour, and sometimes I have no calm at all
"Do you have runny nose or sore throat?" No, I have no signs of sinus infection
"Have you had eye problems, double vision or changes?" No
They check my ears, my eyes and my nose; all was clear and good. They left and were replaced by Neurologist, he tested all my reflexes, my eyes, my ears, my nose. I think my reflexes were ok, he didn't say. Then had me count backwards misusing 7 from 100 consecutively...I failed. No surprise there, I hate math. The neurologist didn't say much at all actually and after my past few days I really couldn't think of questions. He ordered a MRI for photo imaging.
Off I went with an intern to the area where they do this. I am claustrophobic, They wrapped me in a couple extra blankets, like that of a swaddling baby, put my head in a crafted hole and then padded me all up, actually I felt safe and cared for, like I may have been very fragile to them. It was nice. I passed with flying colors as I slept through it all complete with shallow snores they made sure I was made aware of, hehe.
Back to my er room I went. I could feel the pain wanting to come back again, so I told my nurse, and tada she gave me more stuff in the pic line. As I waited I looked at my sleeping boyfriend who'd been with me the whole time today. Poor dear, head sitting on his chest asleep in the most uncomfortable chairs on earth and wondered how soon he'd leave cause of a damaged girlfriend. I just watched him sleep until I fell asleep myself. Of coarse they doctors came back with good news; no tumor, no aneurysms. It was mixed emotions at that point, glad I am not dying, fear that the pain is gonna come back as there is no easy fix. I figured if it had been one of the two they would have to do surgery and take care of the problem immediately, but it was not to be. So when all is calm is when another issue comes up.
Me trying to eat something, I mean really I had not eaten for days and now the pain is was gone; I want to eat. The nurse brings me graham crackers. I am thinking awesome right, wrong. from not eating for days my stomach emptied and was not in the mood to hold even that down. Can you believe it? Its true. I tried 3 times breaking the cracker up and nibbling slowly on it with just a bit of water, and each time I would vomit it up. Unbelievable, but of coarse the nurse has something for that too. A small pill that dissolves on my tongue and then packs me up with paper work, prescriptions and a hug and sends me home. It is now 3am, The boyfriend for all his uncomfortable is pretty awake and perky so we go to local Walgreen store to get the scripts filled right away.
Once home I manage to eat. Yes eat! It was wonderful, just some mashed potatoes and chicken both processed, nothing special but to me amazing. I didn't move for fear of upsetting my tummy and worry that the pain was coming back. Neither happened. I was so relieved, I can't explain it to you. We watched a movie and chatted about the day. The relief he felt at not having a tumor or aneurysm. Funny, in all this time I didn't think of how this might be affecting him. I am glad he there and finding out that it does affect him also, that he is not the nonchalant person I thought him to be (not all my fault by the way, thats what he leads everyone to believe). After talking we decided to eat some breakfast. One would think it was the calm before the storm, the false sense of security. It was, after eating the eggs and ham, they pain was back full force. I took the drug I was told to for "break though pain", It was 15 mins but the pain was chased away. So note to self take that 20 mins before eating. I do. So that is my story so far and I will continue my journey for you so you can see Trigeminal Neuralgia looks like nothing, no rash, no redness, no swelling. You will see how ruthless it is. I must set doctor appts on Mon, so I will be on that and will let you know how it goes. See ya soon. Nurhead
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First Helper NurHead
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replied January 14th, 2012
I am going through the exact same thing except I would have to tell you I think mine is worst! I went 13 LONG agonizing days! The pain felt like a tazer shocking my face from the inside out, and just like you described it! :'( after countless tooth removals a sinus surgery, massive migraine headaches as a child all the way up till now 25, and uncountable medications for all my (Medical Problems) then the major atack set in on December 31 2012 it began! I had. A continuous atack about 90% of the day/night no sleep no food no drink nothing! (Oh an I'm also 8 weeks pregnant!)For eight whole days, finally I went to ER waited in the waiting rm just like you while they called others back that we not nearly as bad as me CLEARLY! Having an atack the whole time! So embarrassing, once they finally got me to a rm I waited another Hr or so then the came in, denied something was wrong and told me that peop
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replied January 14th, 2012
I am going through the exact same thing except I would have to tell you I think mine is worst! I went 13 LONG agonizing days! The pain felt like a tazer shocking my face from the inside out, and my muscles were convulsing all over my body due to the severity of the pain for such a long period of time the pain was just like you described it! :'( after countless tooth removals a sinus surgery, massive migraine headaches as a child all the way up till now 25, and uncountable medications for all my (Medical Problems) then the major atack set in on December 31 2012 it began! I had. A continuous atack about 90% of the day/night no sleep no food no drinking or eating! (Oh an i'm also 8 weeks pregnant!)For eight whole days, finally I went to ER waited in the waiting room just like you while they called others back that we not nearly as bad as me CLEARLY! Having an atack the whole time! So embarrassing, once they finally got me to a room I waited another hour or so then the came in, denied something was wrong and told me that people come in all the time making up stuff for drugs! I told them that wasn't the case and begged them to drug test me and admit me so they could see for themselfs but the sent me home after all that they didn't care I was pregnant and hadn't been able to eat or drink, they cared less! So went back home for another five horrible days I tried everything just like you ice,heat ect.... Bad idea as you said! Once again couldn't take it anymore, desperately trying to figure out what to do I thought about the dentist and that's when I got my diagnosis! But it didn't stop there! He referred me to the University Of Washington to a Neuro Surgeon for surgery due to my pregnancy, not happening. So now I'm on exstreamly powerful painkiller oxicottin and percocets high dosage at the same time! Finally relief it was still there by probably about 15%
But It was such a relief! But I still get atacks just tolerable ones I guess but I'm SO worried for my unborn child he or she will be born an addict because of me!:'( if anyone knows anything about natural remidies or somthing because its litterley the worst pain ever I wanted to die! So its not an option not to take the medication but I'm SO scared I'm unhappy! Please Help!
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