I am a 29 year old man living in the middle east. 10 years ago, when i was 19, i started having severe pain on the left side of my head. the pain is like an electric shock, and very painful. over the years, the pain did change, and i noticed some trigger zones in my face that do change.
At first i thought the pain is teeth related but then someone told me this is Trigeminal neuralgia so i went and seen a Dr and he confirmed that to me. i had an MRI and nothing seemed not normal, everything seemed great, so the Dr. explained that it is a special case of Trigeminal neuralgia.
now there is something strange happening to me, and i would like to know if this is Trigeminal neuralgia or something else. over the last 3 years, many times the pain is related to my body postion, if i am lying down or not. I noticed, that if i sleep on the right side of my body, the pain is triggered within minutes (the pain is on the left side). but if i sleep on the left side, many times i can sleep all the night without pain, unless i touch my trigger zones.
i have read somewhere that Trigeminal neuralgia almost never happens when we are sleeping but for me it is not the case. mine is especially active when sleeping. sometimes it is only active when i sleep. I have also read that Trigeminal neuralgia usually attacks people that are older than 50 but i was 19 when it first started.
so is this Trigeminal neuralgia or something else?
finally, i never tried to take any medication because i am afraid that in few years from now, my body will get used to them. do you think i should start taking medications?
Have you had any other tests other than an MRI? My doctor did all kinds of blood tests to rule out any other disease. TN is diagnosed from how the patient describes the symptoms and by the process of elimination. There is no "test" that confirms TN as far as I know.
My advice would be that you find a "facial pain specialist" or a doctor that deals with "orofacial pain" if there is one practicing near you. These doctors deal with facial pain patients on a daily basis and seem to have more expertise in my opinion.
Find out how many TN patients the doctor who diagnosed you has treated. My internist diagnosed me and my neurologist confirmed it, but neither doctor had any real experience treating a TN patient, so while they did the best they could, it wasn't the best treatment for me personally. When I found a facial pain specialist at a teaching hospital in a nearby big city, I found someone who helped me stop the pain and I am now pain free.
To help the doctors treat you, I would also advise you keep a "pain log" -- write down where the pain is, what type of pain it is, how long it lasts, when it happens, and what seems to trigger it. All this info will help the doctors figure out what's wrong and how to help you.
Unfortunately, I don't know what hospitals you have available to you. Is there a big city nearby with a good hospital? Perhaps the Facial Pain Association (an online website) could give you some information for your area.
Or maybe someone reading this post will have better suggestions.
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