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I hope you don’t mind me posting but I desperately need some clarification. I am so confused. My symptoms started 2 years ago – I am now 27. It started with two weeks of waves of pain in my top left hand teeth. These waves would come every couple of mins and last about a min or two. I visited 3 dentists in this time but they all said there was nothing wrong. My doctor said it was a dental problem so would just keep sending me back to the dentist. In the end my dentist took out my wisdom tooth as a precaution. This didn’t stop the pain (though I had some rest from the pain until the injection wore off). Eventually all the pain went and I began to get things back on track. For the next year I had spells where I would have 2-3 days of pain – I would just lie in my bed and wait for them to go. This year I had another heavy spell of pain. This lasted nearly a month and started in my teeth, working its way up to beneath my eye and towards my temple. This time I had fight and went to my doctors nearly every week wanting them to find out what was going on. I was put on many antibiotics and sent for blood tests and was eventually referred to a neurologist. I saw two doctors during this time, one was 100% convinced it was TN and the other was 100% convinced it was a sinus issue. Towards the end of the month, the lymph nodes on the back of my head swelled up significantly – it was very painful to lie down but this felt like a message from my body to say that this was an infection. I have also developed white lumps on the back of my throat which reappear every couple of weeks (I have them right now). My neurologist thought that it sounded like TN and sent me for an MRI – the MRI came back clear. I am still completely confused about whether I have TN or a sinus issue – I am scared to take the Trileptal every day as I had hallucinations and extreme dizziness when I have tried it previously. And I really don’t want to take the medication whilst there is still confusion as to the diagnosis.
I feel like my symptoms are not typical of TN but then there doesn’t seem to be an exact list of symptoms. It would be incredibly helpful to me to hear if anyone else has had similar symptoms and what they were diagnosed with.
Once I know what is going on, I hope to help someone else as this has been incredibly stressful – I am not the same person I used to be. I now have panic attacks when I feel the pain coming on. I feel like I can’t go away or change jobs. I am completely isolated.
Thanks for reading and sorry for the essay!
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