I am not yet diagnosed because I was having intermittant pain and thought it was a tooth absess.
That came back negative.
I have the classic symptoms-- sharp nauseating pain in my upper jaw-- as often as every 30 min. nd then sometimes will go hours without. Some pains are more agonizing than others. One affected my eyes and i thought i was having a stroke.
I have had little sleep for the past two nights as about 4 am they start up every 30-45 min.
I am so sad and scared and have read so many terrible things people have posted. I have a grandbaby due this week and am wondering if I will be able to drive to see her.
I am terrified the pain will come more frequently or be like the really bad ones all the time.
I have not gone to a doc yet because i was at my daughter's when it started up with regualarity on Friday.
Does anyone have success strories?? What do I need to do first?? I almost went to the ER last night but figured that would be worthless.
I would appreciate any encouraging words/ advice. I feel like my life is ending.... ;-(
Go see your GP as soon as you can, or go to ER if you need to. Hopefully your GP will recognize this and start you on a management program.. I had my first attack ten days ago and my gp's partner diagnosed me. I was on Methelprednizone desending dose for six days. And and anti seizure drug, Gabapentin one pill every four hours. Its working about eighty percent of the time. Good luck finding help. Let us know how it goes.
The first thing you need to do is go to a Dr- hopefully they can start you on the proper meds. If the pain gets bad, go to the ER, many with TN have. There are many positivie stories. You have come to the right place! Your life is not ending. Sending hope your way~
Congrats on the grandchild!!
Tacocat, we have many members here who’s pain is well managed on a med or 2 as well as others who are in remission. I can understand how this all could be overwhelming, but please try not to look too far ahead.
Really important that you get an accurate diagnosis and then treatment for your pain.
When I was first diagnosed with TN I had it for 9 months, and then I had an 8 year remission!!
See your doctor or go to ER if the pain becomes too much and/ or relentless.
Huge ((( hugs ))) Mimi
thanks for your reply--I am calling the doc in the morning-- have gone almost a day without a real attack-- just a bit of ache now and then... is there a normal course this disease takes??? I have been having dental pain for a year or more off and on and I think it was this all along-- I am sure the doc will send me for an MRI and we will go from there... did your attack come on quickly or gradually build up... did you have periods without pain inbetween attacks?? This is so new and confusing...and causing me a lot of anxiety--I feel like a walking bruise..physically and emotionally...
redbird2448 said:
Go see your GP as soon as you can, or go to ER if you need to. Hopefully your GP will recognize this and start you on a management program.. I had my first attack ten days ago and my gp's partner diagnosed me. I was on Methelprednizone desending dose for six days. And and anti seizure drug, Gabapentin one pill every four hours. Its working about eighty percent of the time. Good luck finding help. Let us know how it goes.
Thanks for the encouraging words...I am a big wus (sp?) when it comes to pain and this is nasty-- cold sweat, nauseous, etc. I am so afraid the attacks with last longer than my Lamaze breathing works-- do you usually go for hours in between them?? MIne only last 30 sec to a min. if they would go longer i would loose it.... it is just so scary and unknown... and from what you read ppl are jumpong off buildings from it... ;-(
Jab jaw said:
The first thing you need to do is go to a Dr- hopefully they can start you on the proper meds. If the pain gets bad, go to the ER, many with TN have. There are many positivie stories. You have come to the right place! Your life is not ending. Sending hope your way~ Congrats on the grandchild!!
Whoot whoot for an 8 year remission--now that is good news.... this seems like a particularly unpredictable ailment!! I just worry all the time that it will get too much to bear-- that the pain wn't stop--it is making me so anxious...
Mimi said:
Tacocat, we have many members here who's pain is well managed on a med or 2 as well as others who are in remission. I can understand how this all could be overwhelming, but please try not to look too far ahead. Really important that you get an accurate diagnosis and then treatment for your pain. When I was first diagnosed with TN I had it for 9 months, and then I had an 8 year remission!! See your doctor or go to ER if the pain becomes too much and/ or relentless. Huge ((( hugs ))) Mimi
We go in and out of remission - but disease is progressive
-- eventually higher and higher med doses.... some get attacks daily, some are constant - some like me - now after MVD operation - 2x per week but tiny.
Mimi is the only one I've heard so far with 8 year remission -
Don't let anyone talk you into Gamma Knife or Cyber Knife without coming here first.
Thanks for your kind response! Just sent a request off to Johns Hopkins--they have a TN clinic there and I live about 4 hours away. Worth the drive... I have to not let myself go to the bad emotional place. It is just like all of you- there was already plenty on my plate-- my dear little 86 yr-old mom with dementia, Hubby's health problems, new grandbabies I want to help with-- so this is getting me kind of down.
CH4721BBZ said:
So sorry Tacocat, you sound so sad. My thoughts are with you.
Certainly get to a doc asap or if it is unbareable, at least an ER for now, just to try to alleviate the pain.
Sorry to hear this, Tacocat! PPersevererence, is your best friend. Unfortunately, smetimes the path to successful treatament, is a road of trial and error. If your Dr. isn’t understanding you, seek another.
I particularly like kc Dancer’s reply to your message here. Good, suscinct info, and advice.
Good luck, and let us know how it goes!!!
OMG -- You are so lucky --- IF anything ever happened to My surgeon - Dr. Casey --- I would see Dr. Lim at John Hopkins -- he is my Plan B....!!!!!! I've watched videos of him on TN panels before.
well--they can't see me for a year!! so I guess I am not. she wants me to start around here with a local neurologist. ;-(
Kc Dancer Kc said:
TACOCAT -
OMG -- You are so lucky --- IF anything ever happened to My surgeon - Dr. Casey --- I would see Dr. Lim at John Hopkins -- he is my Plan B....!!!!!! I've watched videos of him on TN panels before.