I’m fairly new to this site after spending a lot of time reading posts and discussions before I joined. I was reluctant to join as I didn’t know for sure that I had a neuralgia related condition. Needless to say this site was a comfort during the time I spent waiting for a diagnosis. I suppose I need to explain my personal story for my questions to make sense, or rather so many members freely share their experience I would like to do the same.
I had been suffering from left sided facial pain since July of last year, then it became severe in October. I had visited a doctor who said I simply had Tmj and with rest and anti inflammatory pills I’d be fine…he was so very wrong.
Strangely, unlike the majority of sufferers, my pain only started at night and would wake me out of a deep sleep. The pain also lacked the ‘electric shocks’ at this point and was mainly a sharp, boring, pain that lasted around 10 minutes. Then around January of this year my pain began to change, the attacks became worse and more frequent and lasted longer, along with my teeth becoming unusualy sensitive. I could no longer eat very hot or cold foods or foods that were hard or chewy. I thought every one of my teeth had gone rotten over night, but I had no abscess or infection or pain in my teeth from brushing or biting down. I was terribly frustrated and thought for sure the reason for my pain was dental.
By the end of Febuary I was being woken up by excrutiating pain every night, no OTC pain relievers worked only hot water bottles on my face that nearly burned my skin. I noticed twitching and numbness in my face along with the sensation of hot needles across my cheek, then I started getting sporadic attacks of pain in the day that had no obvious triggers. I felt a mild ache along my jaw line and a slight stabbing pain in my ear throughout the day, every day.
I saw a doctor on March 15th, by then I was exhausted and I could not contain my misery during my appointment. I had to explain my pain through sobs, I felt so embarrassed and quite pathetic but I was at the end of my tether.
The doctor immediately suggested that ‘Trigeminal Neuralgia’ may be the culprit . I had never heard of this condition before then but the doctor said I should go home and research the condition. He said I would be reffered to a Neurologist with my case marked as urgent. He said there were meds I could take to control the pain but he would prefer the neurologist prescribe them. He prescribed co-codamol until I saw the neuro.
I went home and looked up Trigeminal Neuralgia on Wikipedia, but I was not so sure I suffered from this. From then on I was glued to my ipad trying to find something that sounded more like what I was suffering from. Everything came up ‘dental absess’ or ‘sinus infection’ and of course ‘TMJ’.
Then I came across this site… THANK GOODENESS! I found that there was a second type of Trigeminal Neuralgia and felt so incredibly relieved that, although I’m in a lot of pain, I finally fit somewhere in the world of freakish face pain.
Unfortunately my pain had changed again, in late March I began to feel pain on the right side, from my temple down into my upper teeth, cheek and jaw. The pain would never occur on both sides at once, when one side was ‘active’ the other side was ‘silent’. But as usual the pain was far worse at night, resulting in barely an hour sleep per night. I then had my first electric shock, It lasted only a split second but I jumped out of my skin. I felt like I was walking around with a screwdriver wedged through my cheek that I couldn’t do anything about, along with numbness and shocks in the flesh of my cheek and below my earlobe. The co-codamol did nothing for the pain and I was left feeling very frightened that nothing could stop this pain.
I saw the Neurolgist on April the 18th, I was again extremely tearful and had had no sleep the night before my appointment. The neuro examined me thoroughly, ruling out Multiple Sclorosis I think. After hearing about my pain she stated it didn’t sound like Trigeminal Neuralgia pain but didn’t mention Atypical Trigeminal Neuralgia either, her diagnosis was ‘left sided facial pain’, although her report included the right side and ‘not consistent with classic tn’. She wants me to go for an MRI, and again my case is supposedly ‘urgent’. She prescribed Lyrica, increasing each week from 50mg to 300mg and Amitriptyline 20mg at night.
When I started taking the pills I felt them working because I felt like I had taken sleeping pills, for the first week I was relatively pain free. But a few weeks on I didn’t have have that sleepy feeling anymore and began to have bad pain at night again. Some days I feel like the medication is working and others I feel it is not.
A few days ago I had the worst pain so far, I was climbing the walls with pain and screaming into pillows. I had an emergency appointment with my doctor who said I should go straight to 300mg of Lyrica and phone my neurologist to push for the MRI as I still haven’t heard anything.
I’ve been okay for the past few nights, but I can still feel the ache in my face in the day which can get pretty bad. I’m absolutely terrified of going to bed, I’ve tried sleeping sitting up but I wake with pain all over my body and sciatica in my left leg.
I would like to know if anyone else has had a similar experience to me, being prescribed meds that don’t always work. Is it normal to still be in a lot if pain even when you’re taking meds? How do you cope with the prospect of constant pain?
If I feel I should be on higher dose can I call my Neurolgist and ask if I can change how much I take? I find it hard to push the matter and question what doctors say as I am quite reserved and shy by nature.
I’m falling apart with the lack of sleep and desperately seek some relief, if I find that the Lyrica does not work for me even on a higher dose, what does it mean? Is there something else I could try or does it rule out neuralgia? Will I ever have a pain free day again?
Thank you to anyone who takes the time to read and answer my questions.