Symptoms of TN?
Posted , 5 users are following.
Last April I started with tingling in my left cheek and my top lip, sore left ear - went on tegretol 100mg- was fine for a while, those symptoms came back two weeks ago, put on 200mg of tegretol, which has eased those symptoms a little but I also have what I can only describe as a pressure headache - only time all symptoms eases is in the bath or when I'm asleep! I really do not have the pain you all mention but this feeling in my head as mentioned before. I have only been told it's TN by my GP but no other tests carried out, i suppose I wonder if my GP is right as the symptoms are scary. I'm 57. Any thoughts on this would be great and my heart goes out to all those with TN, it drags you down.
2 likes, 8 replies
Glor888 jean62175
Posted
Welcome to the forum. I'm sorry to hear you're in pain and it does sound like TN. But as everyone is different with their symptoms, some a slow build up and others with a fierce attack of pain which can and is excruciating for them. You could ask your GP to refer you for an MRI scan and/or see a Neurologist. This will rule out any other underlying problems you could have. I personally didn't get the headches as I recall, but I do know that when my TN returned the last time it wasn't as bad as it was in the past, but bad enough. I know there can be different levels of pain and symptoms, so I would be inclined to request further tests.
Let us know how you get on and good luck.
Kind regards
Gloriana
jean62175 Glor888
Posted
maggie80535 jean62175
Posted
tanz69 jean62175
Posted
So sorry to hear you a fellow TN sufferer. I too am on Tegretol, and I to struggle with horrendous headaches. I have similar pain to you, cheek, jaw, neck and ear. Some days the headaches are so ferocious I feel like my head is trapped in a vice. I take co codemol (500mg) and it usually does the trick. I go to sleep with a headache and I awake with one and its all day pain. I’m not sure if it’s a side effect from Tegretol or it’s just the TN. My Dr prescribed Amitriptyline to take at night and they have not helped. He didn’t seem to think the headaches were strange at all and when I suggested a referral to Neuro he looked at me like I was mad and this was just something that goes alongside TN..! Pls keep me posted on what you discover about this when you have your appt.
I also have realised that if my body temperature rises they get worse. I find being outside in the cold a huge relief. Being stuck in doors with the heating on or in the sun makes it so much worse. Going for a walk with my dog does help for a while. Paracetemol works too. I alternate between the two, co codemol and paracetomol. For the last 6 weeks I have been in pain, but strangely today I awoke with no headache for some reason…!!!??. I have been going to bed earlier and earlier and perhaps it’s because I’m getting more sleep. Who knows, every day with TN is a struggle and a mystery. What works today doesn’t tomorrow so I just go with the flow and enjoy each day as it comes.
Hope you feel better soon :o)
jean62175 tanz69
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tanz69 jean62175
Posted
I like that "body surfing" I can guarentee you, all of us open our eyes each morning and body surf. Once you have been thru the horrendous pain of TN, every day you open your eyes and you not being poked in the face by an electic shock is a huge relief.
Its not in your head...its in your cranial nerve lol
xx
jean62175 tanz69
Posted
becca77286 jean62175
Posted
I hope you continue to feel relief! And as you are able to now take back your life, sharing your story will most definitely help others.
Be well <3>3>