Tuesday, 5 January 2016

Pain, Pain and Even More Pain!

The intensity of my pain is frightening me. I have gone through too much of it lately and I do not know how much more I can take. 

I am getting pain on my right side too. Now I have done the sensible thing and I went to the dentist. There was a small chip in a filling, so he fixed that. He took x-rays and there is no dental problem there. Call me crazy, but I was seriously hoping for a rotted tooth, or a missing filling. Alas, my teeth and gums are fine for the moment. I went home, hoping that everything would be fine. 

I waited a couple of days, hoping that the pain would calm down, and it was residual dental pain. Nope, I was effing wrong. My next trip took me to my long suffering GP. I knew by the look on his face that he suspected that Trigeminal Neuralgia is the culprit, but doing his due diligence, he prescribed some anti-biotics and some pain killers. I went home, a little more hopful, but that nagging feeling in the back of my mind was still there. 

The past week has been complete and utter hell. I got through Christmas, and oddly enough my pain was bearable. Since last Sunday week, my Trigeminal Neuralgia pain has been increasing. My left side is my "bad" side and I expect the drilling, throbbing and stabbing pain to be there from when I open my eyes in the morning to when I manage to close my eyes at night. The electric shocks are taking my breath away and I feel like I can't breathe. My right side is not as intense, but it's pretty bad. My head feels like it's stuck in a vice, a sharp knife plunging in and out of both ears. Jump leads are attached to every single one of my nerves and it's driving me crazy!! 

I have been quite depressed too. My general mood is dark, and sometimes I want to fall asleep until they come up with a definitive cure for Trigeminal Neuralgia. Now I want to make one thing clear. I have never, ever thought about suicide, and I hate having to use that word at all. I have cried myself to sleep, screamed into my pillow and stared at my bedroom ceiling trying to retain what is left of my sanity. I still have hope, and I am constantly surrounded by people who understand and who wish they could help me. I have reached out to support groups online, and there are some wise people on there, who know exactly how I feel. 

I am going to my GP again in the morning. The anti-biotics haven't worked, so lets get the ball rolling on a proper diagnosis. I know that my TN is now bilateral, but the sooner my doctor agrees, the sooner all my consultants can amend their treatment plans. I am still waiting for my Stereotactic Radiosurgery procedure, but judging by Ireland's health care system, that is no great shock. 

At this very moment my pain is an 8 out of 10, which allows me to write this. When the pain gets more intense I can't even look at a computer screen. Now that pisses me off. I can hardly stand even this level of pain. 

To anyone that reads this who is in a dark place, please reach out. There are support groups everywhere online, and there are some superb ones on Facebook. Talk to friends or family if you can, but if you can't, go and see your GP. 

It takes tremendous strength to realise that you need help, it's a hard thing to admit. Once it's out in the open, trust me, life will get that little bit easier.


  1. I've been dealing with left face pain for over 2 years. Doctors have ruled out TMJ, ear problems & any tooth problems, which took many months and thousands of dollars. I stumbled upon TN on pinterest of all places. Going to bring it up at my dr appt Friday. Not sure what this road will hsve in store. Praying I can get answers and some kind of control over this crazy face, jaw and ear pain. Good luck to you and finding relief. Melissa

  2. Hi, I went through the same thing too, pain and went to see my dentist. Luckily she diagnosed it as TN straight away and sent me to my GP. He gave me Tegretol which is an anti convulsant for epileptics, as the are the only drugs that stop the pain, which worked pretty well. It relieved about 90% of the pain. I was sent to see a specialist who upped the medication but I had a very severe reaction to it which has taken four weeks to settle down after having to stop the meds.
    He gave me gabapentin which is a different family of anti convulsants, but luckily for me the pain has receded to a managable level without the medication.
    I still get pain eating and sometimes when talking, but it is not the blinding raw 10 10 agony that I was getting. I am not taking the gabapentin as I feel able to cope with the pain I now have and as far as I can see the probable side effects I would get outweigh the benefits of taking it.
    Anyway I hope this helps.

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  4. Hello.
    I too have been diagnosed with trigeminal neuralgia. I am dealing with stabbing burning pain deep in my ear that radiates down my lower jaw. They have ruled out tmj, ear infection, tumors and Ms. Here is the interesting part of my TN: my pain is triggered when I sleep on either side (my pain is only on my left). I haven't found any information regarding sleep and tn other than not common. It is solely triggered when I sleep so you can imagine the frustration. If I sleep I get pain. If I don't sleep no pain. Either way I am lacking sleep period. I am currently on 800mg tegretol and 150 lyrica. It has stopped working. I have been on that dose for only a week. Every increase in medication seems to work for a week or so and then stop. I feel helpless.

  5. I have to admit that I know nothing about Trigeminal Neuralgia and how it affects anyone. But I do know pain, and I feel for you. No one should have to deal with pain for an extended period of time. I hope your doctor is able to properly diagnose you and you are on the road to recovery soon!