Hey guys I’m knew here and need advice. I was diagnosed in July however now that I look back I think I’ve had TN for awhile. I take phenytoin sodium and baclofen. For the most pas this has helped extremely. I haven’t ha that terrible toothache type pain since before I started the meds until just now and woke up crying. Mainly I just have throbbing in my temple, the throbbing can be extremely painful and we have already raised my meds twice. My mother had TN and never had this pulsating throbbing in her head the way I do, I can feel it with my finger too. I don’t see much of this as a symptom, is this “normal”? And also how the heck will I ever know if I just really do have a bad cavity? I woke up now and still brushed my teeth as if that’s going to help though I know it won’t. I’m in so much pain I want to scream. What can I do? This can’t be acceptable. Any advice or help would be appreciated.
Hi Brittany. I am so sorry you are in so much pain. I can't offer you any advice, but I can offer you some empathy. Are you sure the throbbing in your temple isn't a separate headache problem? I suffer from both chronic migraine and TN, which is why I ask. Sometimes I find it difficult to distinguish between the two.
Every time I start to get a TN flare up I end up in the dentists chair thinking I have some dental problem, and sure enough there is nothing wrong with my tooth. I think it is okay to try to rule that out first. But when you know it is TN, you need to take care of the TN. It is easy to wish it is a dental problem, because that is something we can easily fix.
I wish TN was something we could easily fix. I wish I could help you out of your crisis right now! But because you are having such strong breakthrough pain you need to get in touch with your Dr. immediately. Do you have any "rescue" medicine for emergencies?? I am thinking of you!!
I don’t think the throbbing is separate because it started when everything else started and sometimes the pulsating sensation goes in rhythm with the shocks down my face. The doctor didn’t give me any emergency meds though I see him again for a check up on Tuesday. Today was supposed to be such a good day. My husband and I bought our first house today and I got a promotion however the pain won’t even allow me to smile. Boy this sucks it’s nice to be on this site, because while my mother understands I think she doesn’t fully remember because she had her surgery over ten years ago.
Congrats on buying your first house and the promotion! My TN attack started the day before I got some really good news about a scholarship so I completely understand what it's like to be happy and not really be able to express it. When the pain subsides, smile away! I did!
Forehead pain can be part of TN. It's would be the V1 portion of the nerve and it seems a lot of here have V2 or V3 issues. I know you said you don't have anything for breakthrough pain specifically but even taking something NSAID like naproxen, ibuprofen, etc. might help. I stress the word might. I was taking leftover narcotics prior to being diagnosed and starting on gabapentin.
I hope you are feeling better today and can smile about all the wonderful things that have happened recently!
Thank you so much! Still in pain but so much better! May I ask how old you are?
Me? I’m 26.
Hey me too! It’s great to talk to somebody the same age that gets it!
I am 63 and had TN over 3 years, off and on, seemed like it came back different . from the top of my head to my ear and the whole side right side of my face. What kind of surgery did your mother have? and sounds like it was successful?
Ida
Brittany said:
I don't think the throbbing is separate because it started when everything else started and sometimes the pulsating sensation goes in rhythm with the shocks down my face. The doctor didn't give me any emergency meds though I see him again for a check up on Tuesday. Today was supposed to be such a good day. My husband and I bought our first house today and I got a promotion however the pain won't even allow me to smile. Boy this sucks it's nice to be on this site, because while my mother understands I think she doesn't fully remember because she had her surgery over ten years ago.
My mother had microvascular decompression surgery done. She was very lucky because a surgeon from Japan was in the states to teach American doctors how to do the surgery so she received it from him who was the top rated in the world at the time and received it free so they could teach other doctors. She has been TN symptom free for over a decade now. However her and I have many of the same symptoms however I seem to have some added and am younger than when she first had it.