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Old 02-08-2011, 10:33 PM #1
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Default Please help me understand this better. Newly Diagnosed.

This has been the worst 2 weeks of my life. It started with a little face discomfort. I went to the dentist only to find out nothing was wrong. Then the real pain started... It was like electricity zaps thru my face and behind my ear only on one side. I went to the Urgent care and they diagnosed me with TN, gave me Tegretol and Ultram. That was Saturday, I made it until Monday and saw my PCP. She increased the Tegretol and discontinued the Ultram. This time I only made it until that evening because I needed something for pain. The Ultram didnt really do anything but maybe it helped a little. I went to the ER and they drugged me up, did a CT scan and told me I had a sinus infection. On Tues I saw a Ear, Nose & Throat Dr. who told me my sinus infection was very small and its only a coinsidence I have both at the same time. So now after a CT Scan, MRI and XRays Im back with TN. I am only 32 but they rules out tumer, MS or an anurysm. So after 2 weeks I am getting some relief. I have a pins & needles feeling that comes and goes. Im not sure if its the Tegeratol or just the episode ending. I get dull pains which I am trying to manage with either Motrin or Tylenol but when they get bad I switch to Vicodin. I havent had any zaps in 2 days = Can anyone relate to the pins and needles feeling or almost a tingling feeling. Its not painful just more annoying. I can handle it but not that pain. Also how often do most of your episodes last? Is 2 weeks a short or long episode? How soon do they return? I don't get into the Neuro Dr. for a couple weeks to get more answers and the ENT and PCP just keep saying those are Neuro questions. Please give me some advice as to maybe what I can expect. Thanks
PS: I guess I take it once day at a time. Today is a good day because they rules out tumors, MS or an Anurysm. I guess TN is the better of the diagnosis but a sinus infection would have been great!
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Burntmarshmallow (02-09-2011)
Old 02-09-2011, 01:58 PM #2
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It is impossible to tell another tn pal what they should expect cus the symptoms are so varied. some have it more severer it is on both side aka bi lat or a different form of t.n. like pre t.n. ,atypical or anesthesia dolorisa etc and it is a constant burning or shocking zap . others its tight tugging feeling still others describe it as a cold frozen numb heavy feeling. some it comes and goes but most always all of us learn we have triggers that make the pain worse such as wind breeze touching the area hot or cold on that area ... etc. Many find meds help manage the pain and it seems like you are on that road. I would guess that the meds you will be put on will help you feel much better. usually a anti seizure med to start and pain med too. I you will need to let the med build up in your body and for your body to adjust to it ..like 2 or 3 weeks until you feel the full effects and the med works like it should.and you adjust to it and the side affects .
for me a 2 week pain time would seem VERY SHORT but it is because I have anesthesia dolorosa since 1999 and it is none stop. but for one who has never had t.n. 2 weeks is forever .Please dont try to compare me with you or you with someone else cus we are all different , on different meds or have had different surgeries.when one of us has something we post and find another like us but ALL of us support listen and we are all in this together... finding ways to end the pain.
please let us know how things go with your apt. or if you have questions just post and someone will reply I know I will if i can help dont think twice about contacting me by post or visiting my profile page to leave a message.. glad you found your way here btw welcome to our t.n family here at neurotalk.
for your neuro apt I would write down a list of your concerns and questions. it is the best way to get answers . cus many times you get in there and totally forget all the questions and concerns then ya leave and its like oh no i forgot to ask this ... so write it down and bring the paper with you.
sending positive thoughts and low pain to you. I hope you are feeling better and that your apt goes well. keep us posted. thanks
PEACE
BMW

p.s. sometimes a sinus infection is what causes t.n. as the infection can travel to the t n nerves so boo on those and glad it is not ms or anything of the sort.
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Old 02-09-2011, 06:49 PM #3
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Absolutely don't compare yourself to others. There are so many stories and different meds to help.I've had Anesthesia Delorosa for about 6 yrs. and my meds do still change as we find out what works better and what doesn't. I hope you have good family and friends to support you because you will need them more than ever.When I found this forum, I took a big sigh and cried like I had found gold. You are in a good place here. Bless, Doodle bug7
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Burntmarshmallow (02-11-2011)
Old 02-10-2011, 09:27 AM #4
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Heart Standing by you

Me again. When you said that when you ask questions that you are told "Those are questions for the Neuro."You will find that many in the medical field have no idea how to answer your questions because they simply don't know what the heck you are talking about. When I went to the E.R. my husband had to give the Dr. and staff pamphlets to read about T.N. That made me real secure. So value those with knowledge about the disease.
As far as the length of episodes, it is an individual thing.I've had episodes all over the place. Long, short, and spiratic.
When I was diagnosed with T.N. after those electric zaps
that rocked my world, I was given a very low dose of meds that held it for ten years! So you see, you could go in
remission and not have anymore trouble for a very long time. Lets pray for quick relief when the Neuro gets things
sorted out.
Everyone here is going to support you so don't forget to let us know whats happening. You can lean on us even when things get overwhelming. OK? Bless again, Doodle bug7
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