Aa
(crying) Someone w/ TN..PLEASE HELP!!!
While I have had many episodes of TN....and those who have it know that it will bring you to your knees!
This eveniong I had a round of TN that not only brought me to my knees but took me even further down.
this was the worst one so far......The doctor last week did confirm that I do have TN and told me tyo up the Gabapentin (neurontin) when an episode occurs and gave me Hydrocodone.
these episodes (those of you who have it know what i mean.....the sudden coming and going) lasted for a couple of hours and it totally took me down.....cried like a baby while it was shooting, and stabbing the nerves in my face (right side), to the side of my jaw and ear area. it was sooooo bad you guys. Like i said....it has been bad before and makes me cry, but this time.....i still can not believe how bad it was tonight.
Sorry to go on...my question is for those who have experienced this (have TN), when this happens and it decides to give you some relief...does your head, face, jaw area kinda feel like it is sore and maybe bruised? Maybe I like the desription of "SORE" better. I really need some input from you guys. Tell me how you feel.
one more thing....can you tell when it is coming on....by this i mean of course it jolts out of no where but in between jolts do you get a ...........oh, i don't know how to describe it...kinda like a contraction when in labor??? You feel something building in you.....then all of a sudden it grabs hold of you and brings you down??
Anyhow, i am left tonight exhausted, sore, ver weak, and just kinda mentally numb.
i pray for each and every one of you who have to deal w/ this.
Thank you so much for reading this and helping mwe to understand more about this TN.
~Tonya
ps....guys im sorry for the spelling errors but i am just wey to mentallt tired and weak to go back and corredt
everthing......sorry
Tonya,
Sorry you are in such pain.
Your Neurontin (gabapentin) can be up-titrated as high as 3600 mg per day, but I suggest you possibly call your doctor first.
When my TN starts acting up a bit, I usually take an extra 1 or 2 per day.
I have been well-controlled for my TN since 2004 on Neurontin. This has been my life saver, although last year my TN came out "full blown" for about a week and I had to up-titrate my gabapentin, as well as use Vicodin for pain.
If your episodes are lasting too long, I would go to the ER to get a shot of Dilaudid or something to cover your severe pain. Please do not suffer with the pain.
At my highest point of pain in the past, I went between 1-2 hours of horrific pain and I will never do that again. I will go to the emergency room.
Feel free to contact me any time.... I know EXACTLY how you are feeling.
P.S. Try using a heating pad on "low setting" on your face. Sometimes this would help a little bit for me.
Terri
Sorry you are in such pain.
Your Neurontin (gabapentin) can be up-titrated as high as 3600 mg per day, but I suggest you possibly call your doctor first.
When my TN starts acting up a bit, I usually take an extra 1 or 2 per day.
I have been well-controlled for my TN since 2004 on Neurontin. This has been my life saver, although last year my TN came out "full blown" for about a week and I had to up-titrate my gabapentin, as well as use Vicodin for pain.
If your episodes are lasting too long, I would go to the ER to get a shot of Dilaudid or something to cover your severe pain. Please do not suffer with the pain.
At my highest point of pain in the past, I went between 1-2 hours of horrific pain and I will never do that again. I will go to the emergency room.
Feel free to contact me any time.... I know EXACTLY how you are feeling.
P.S. Try using a heating pad on "low setting" on your face. Sometimes this would help a little bit for me.
Terri
i am sorry for not checking back in.....i am still reeling from this pain.
While the "Coming and going" is not near as bad as it was the other night.....I am still having the TN pain!
really feeling it over right eye and right ear area both in front and back.
(back maning right behinf but just on top of ear area,.....I am still very sore feeling between episodes throughout the day.
went back to Optho..(please remember I am dealing w/ TN right now and IOP.......Optho says one has nothing to do w/ the other) Does agree w/ other docs that I have a true case of TN...I knew that! .Pressure still very elevated but says from what he can see in side of eye (something about cells or something?) he does not see that in which it would indicate Glaucoma.....here is the WEIRD thing (tell me what you all think or have heard) he did say that with having an Autonomic Dysfunction the CNS does play a part in eyes and pressures.....He is wondering if this is my case.......I have not googled any of this becasue I am just to tired and me Freaking face / head hurt.
If anyone knows anything about this please tell me......He also said that just by having MS things can just "Whack Out" in the eyes......He certainly feels that this is the case w/ the loss of my Peripheral vision.
Anyhow, I am have D/C the one drop and he now has me on one 3 times day and a different one only at night.
i want to Thank each and everyone of you for truly caring for me. And all your notes and kind words as well as you sharing your personal info w/ me. I Love you all....
~Tonya
While the "Coming and going" is not near as bad as it was the other night.....I am still having the TN pain!
really feeling it over right eye and right ear area both in front and back.
(back maning right behinf but just on top of ear area,.....I am still very sore feeling between episodes throughout the day.
went back to Optho..(please remember I am dealing w/ TN right now and IOP.......Optho says one has nothing to do w/ the other) Does agree w/ other docs that I have a true case of TN...I knew that! .Pressure still very elevated but says from what he can see in side of eye (something about cells or something?) he does not see that in which it would indicate Glaucoma.....here is the WEIRD thing (tell me what you all think or have heard) he did say that with having an Autonomic Dysfunction the CNS does play a part in eyes and pressures.....He is wondering if this is my case.......I have not googled any of this becasue I am just to tired and me Freaking face / head hurt.
If anyone knows anything about this please tell me......He also said that just by having MS things can just "Whack Out" in the eyes......He certainly feels that this is the case w/ the loss of my Peripheral vision.
Anyhow, I am have D/C the one drop and he now has me on one 3 times day and a different one only at night.
i want to Thank each and everyone of you for truly caring for me. And all your notes and kind words as well as you sharing your personal info w/ me. I Love you all....
~Tonya
Hi,
Just checking in to see how you are doing. I hope your pain has subsided and/or your doc prescribed something to make you feel better.
Thinking of you,
Ren
Just checking in to see how you are doing. I hope your pain has subsided and/or your doc prescribed something to make you feel better.
Thinking of you,
Ren
I also used ice pack to numb the area... it helped abit.. I put a face cloth in the freezer and used it on and off..
take care
wobbly
take care
wobbly
sorry to hear your going through this. I had some horrible facial pain on my right side and went to the MS Clinic, the Neuro said it didn't sound like TN and called mine Atypical Facial Pain..
it's horrible.. it lasted on and off for a few weeks, so I went to my GP and he gave me a Rx for Percocet to help with the pain... it helped me sleep...
take care hang in there
wobbly
it's horrible.. it lasted on and off for a few weeks, so I went to my GP and he gave me a Rx for Percocet to help with the pain... it helped me sleep...
take care hang in there
wobbly
Hi Honey,
I'm so sorry you are suffereing. Can you call the Dr. this a.m.?
I so wish I could help, but all I can do is nag and beg you to please call this morning - k?
(((hugs)))
shell
I'm so sorry you are suffereing. Can you call the Dr. this a.m.?
I so wish I could help, but all I can do is nag and beg you to please call this morning - k?
(((hugs)))
shell
I am so sorry your are experiencing this pain. I can relate all too well.
I have been on Trileptal for over a year now, but dont think it helps for me. My last visit at the neuro she talked about weaning me off this med.
I saw a pain management doc and he spoke about a sphenopalatine ganglion block ( a shot in the Trigeminal nerve). to see if this will help. I am seeing him again in May, but am also going to see a headache specialist, if there are any other meds I can try.
I have tried a few different meds at this point, and the one that seemed to help the best, gave me a very bad side effect.
It is frustrating. Anyway, when the pain gets so bad for you, I think the ER can help. They can give you some good pain meds, to feel better. Perhaps it can break the cycle.
I get the horrific pain for about 2 weeks, and then it takes another couple weeks, where I am sore, just as you describe.
Again, I am sorry. I feel for you, it is just awful. I have had 4 natural childbirths and would rather have another, instead of the face/ear/scalp pain.
Thinking of you,
Michelle
I have been on Trileptal for over a year now, but dont think it helps for me. My last visit at the neuro she talked about weaning me off this med.
I saw a pain management doc and he spoke about a sphenopalatine ganglion block ( a shot in the Trigeminal nerve). to see if this will help. I am seeing him again in May, but am also going to see a headache specialist, if there are any other meds I can try.
I have tried a few different meds at this point, and the one that seemed to help the best, gave me a very bad side effect.
It is frustrating. Anyway, when the pain gets so bad for you, I think the ER can help. They can give you some good pain meds, to feel better. Perhaps it can break the cycle.
I get the horrific pain for about 2 weeks, and then it takes another couple weeks, where I am sore, just as you describe.
Again, I am sorry. I feel for you, it is just awful. I have had 4 natural childbirths and would rather have another, instead of the face/ear/scalp pain.
Thinking of you,
Michelle
TN does leave me with a sore face and head. I have been fortunate in that the medications I am on, neurontin is one of them, TN is reasonably controlled.
My mom suffered from TN for years. My parents were in Florida on vacation this winter and she had TN hit and it did not let up for 6 weeks.
Dad took her to the Orlando hospital and they did some testing. They found that her TN was caused by two different causes. The doctor there was one of the original docs that came up with the surgical technique to help with this kind of TN pain.
They place a piece of Teflon between the nerve and blood vessel to keep them from touching. This is not something that will work if your TN pain is being caused by a lesion though. So they have to determine why you are having TN pain.
She had surgery because one major artery was straddle over the trigeminal nerve. The other problem was smaller vessels were also aggravating the situation.
She was diagnosed with typical and atypical TN. She is still in the recovery process but doing much better. She was in bad shape before surgery.
They can tell from the MRI if TN is being caused by the nerve and vessels touching each other. That kind of TN is very difficult to control with the typical meds used for TN pain.
The surgery is a big deal but pretty successful. If you are still struggling with pain even after using the normal TN meds it might be worth checking into things a little closer.
Just a thought.
LA
My mom suffered from TN for years. My parents were in Florida on vacation this winter and she had TN hit and it did not let up for 6 weeks.
Dad took her to the Orlando hospital and they did some testing. They found that her TN was caused by two different causes. The doctor there was one of the original docs that came up with the surgical technique to help with this kind of TN pain.
They place a piece of Teflon between the nerve and blood vessel to keep them from touching. This is not something that will work if your TN pain is being caused by a lesion though. So they have to determine why you are having TN pain.
She had surgery because one major artery was straddle over the trigeminal nerve. The other problem was smaller vessels were also aggravating the situation.
She was diagnosed with typical and atypical TN. She is still in the recovery process but doing much better. She was in bad shape before surgery.
They can tell from the MRI if TN is being caused by the nerve and vessels touching each other. That kind of TN is very difficult to control with the typical meds used for TN pain.
The surgery is a big deal but pretty successful. If you are still struggling with pain even after using the normal TN meds it might be worth checking into things a little closer.
Just a thought.
LA
Tonya,
I'm so sorry you are having this pain. ((hugs)) and you will be in my thoughts. I hope it gets better! ((hugs))
~Jess
I'm so sorry you are having this pain. ((hugs)) and you will be in my thoughts. I hope it gets better! ((hugs))
~Jess
Hi Tonya,
I haven't been brought to my knees (yet) but it has made me cry. I know it gets worse over time. Like Rendean, I have occipital neuralgia, too--these head neuralgias are awful!
How much gabapentin are you taking? My experience has been that I had to up the dosage fairly regularly. Even after titrating up to an effective dose, I had to keep increasing every few months. When I switched to Lyrica, I was taking 1800 mg of gabapentin a day. Funny thing was they said 150 mg of Lyrica was equivalent, and at first that dosage worked, but it must have been time for an increase, because within 6 weeks I was up to 300 mg of Lyrica.
I haven't tried tegretol either, I opted for gabapentin first since it seemed like it had fewer side effects.
Like yours, my doctor always says to increase the dosage. But I don't think it works to take extra only when you're having an episode, by then it's too late. For me, I need to permanently increase--every time I've tried to titrate *down* my pain returns to too high of a level.
Good luck. I hope you get some relief soon.
Stephanie
I haven't been brought to my knees (yet) but it has made me cry. I know it gets worse over time. Like Rendean, I have occipital neuralgia, too--these head neuralgias are awful!
How much gabapentin are you taking? My experience has been that I had to up the dosage fairly regularly. Even after titrating up to an effective dose, I had to keep increasing every few months. When I switched to Lyrica, I was taking 1800 mg of gabapentin a day. Funny thing was they said 150 mg of Lyrica was equivalent, and at first that dosage worked, but it must have been time for an increase, because within 6 weeks I was up to 300 mg of Lyrica.
I haven't tried tegretol either, I opted for gabapentin first since it seemed like it had fewer side effects.
Like yours, my doctor always says to increase the dosage. But I don't think it works to take extra only when you're having an episode, by then it's too late. For me, I need to permanently increase--every time I've tried to titrate *down* my pain returns to too high of a level.
Good luck. I hope you get some relief soon.
Stephanie
I have not had TN and I do not want it. I am so sorry to hear you have has such a rough time and such excruciating pain. Sometimes it is difficult to explain to people how something feels but you have done well and you have a receptive audience who are all supporting you.
Big hugs and lots of love and smiles
Sarah (((((((((:) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) ;) :) ;) :) :) :) :) :) ;) :) :) :} ; ) ;) :)))))))))))
Big hugs and lots of love and smiles
Sarah (((((((((:) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) ;) :) ;) :) :) :) :) :) ;) :) :) :} ; ) ;) :)))))))))))
I can relate to your pain, I have had TN before and it is HORRID! I was unable to smile, go outside in the wind, drink, I was convinced it was dental but it wasn't, my TN was confirmed by the neurologist. The pain was stabbing and just moving my mouth would bring on stabbing pain, I had my ears checked, my teeth checked, I was desperate, but it did go away.
I was given Tegretol and amitriptiline for the pain, these at least allowed me to sleep, the way you are describing it is exactly how I experienced it.
I have just had an episode recently but no where near as bad, I don't get any warning it is coming on, it is sudden, I was so desperate for the pain to end I remember saying to the doctor could he do something to kill my nerve endings so I had no pain (lol).
It will get better, try and hang onto that thought, thinking of you ,
Udkas.
I was given Tegretol and amitriptiline for the pain, these at least allowed me to sleep, the way you are describing it is exactly how I experienced it.
I have just had an episode recently but no where near as bad, I don't get any warning it is coming on, it is sudden, I was so desperate for the pain to end I remember saying to the doctor could he do something to kill my nerve endings so I had no pain (lol).
It will get better, try and hang onto that thought, thinking of you ,
Udkas.
Dear Tonya,
I TOTALLY understand the pain and agony you are experiencing. It is unbearable at times. I also have occipital neuralgia which for me , is worse than my TN. As you might have guessed the hydrocodone doesn't do much for the pain since it's origin is neurological. but if you are like me, the hydrocodone will dull all your senses and at least you care less about the pain.
Are you not on Tegretol or Trilipetal for TN? Either one is the standard used to treat TN. the only difference is Trileptal has a lower side effects profile. Neither take the pain completely away but will lessen it to a tolerable level.
I have some relief with hot or cold compresses dependent on the day ,it varies. As for the soreness, I can feel it become sore BEFORE the pain and after the episode it remains sore and bruised feeling for a couple of days.
Know that your are not alone in this miserable symptom and it 's pain. I'm sending good thoughts and prayers your way hoping for this to end soon.
Hugs,
Ren
I am SO sorry you are experiencing this horrific pain. Heck, natural childbirth while receiving Pitocin (drug used to augment labor producing hard contractions) was a cakewalk compared to TN.
You have earned your tears.
I TOTALLY understand the pain and agony you are experiencing. It is unbearable at times. I also have occipital neuralgia which for me , is worse than my TN. As you might have guessed the hydrocodone doesn't do much for the pain since it's origin is neurological. but if you are like me, the hydrocodone will dull all your senses and at least you care less about the pain.
Are you not on Tegretol or Trilipetal for TN? Either one is the standard used to treat TN. the only difference is Trileptal has a lower side effects profile. Neither take the pain completely away but will lessen it to a tolerable level.
I have some relief with hot or cold compresses dependent on the day ,it varies. As for the soreness, I can feel it become sore BEFORE the pain and after the episode it remains sore and bruised feeling for a couple of days.
Know that your are not alone in this miserable symptom and it 's pain. I'm sending good thoughts and prayers your way hoping for this to end soon.
Hugs,
Ren
I am SO sorry you are experiencing this horrific pain. Heck, natural childbirth while receiving Pitocin (drug used to augment labor producing hard contractions) was a cakewalk compared to TN.
You have earned your tears.
Hi Tonya,
I'm so sorry to hear you are in so much pain tonight. I haven't been diagnosed with anything yet but have been having episodes of terrible stabbing pain in my head and face.
The other night while watching tv it started in my left eye, kinda like someone stabbing me over and over with a screwdriver. I just started to cry and grab my eye. After it was very sore and tender.
Same happens when it's in my head then after my scalp feels very sensitive or my face so much so that I am afraid to comb my hair or wash my face.
Wishing you a better tomorrow and hoping you can get some rest and relief. Anna
I'm so sorry to hear you are in so much pain tonight. I haven't been diagnosed with anything yet but have been having episodes of terrible stabbing pain in my head and face.
The other night while watching tv it started in my left eye, kinda like someone stabbing me over and over with a screwdriver. I just started to cry and grab my eye. After it was very sore and tender.
Same happens when it's in my head then after my scalp feels very sensitive or my face so much so that I am afraid to comb my hair or wash my face.
Wishing you a better tomorrow and hoping you can get some rest and relief. Anna
COMMUNITY LEADER
Hey Babe,
I'm so so sorry your having to deal with this, so not fair!!!
I cant help sorry again, i think the closest experience to TN i've ever had was after having my toncils out (age 29) i woke up with the most intense pain in both sides of my face. They hadn't put my jaw back together right, i was screaming about my jaw pain and all they would give me was the liquid panadol they give to the kids, i couldnt get the night nurse to understand it was my jaw not the toncils exstraction. I wasnt being a woos it was intense pain, no one seemed to get just how much pain i was in. I really couldnt imagine regular repeats of that level of pain, i'm sure its still not even close to what you have to deal with. god it must be horrid!
I wish i could answer your questions, i do hope it stops and someone can help.
Take care
JJ
I'm so so sorry your having to deal with this, so not fair!!!
I cant help sorry again, i think the closest experience to TN i've ever had was after having my toncils out (age 29) i woke up with the most intense pain in both sides of my face. They hadn't put my jaw back together right, i was screaming about my jaw pain and all they would give me was the liquid panadol they give to the kids, i couldnt get the night nurse to understand it was my jaw not the toncils exstraction. I wasnt being a woos it was intense pain, no one seemed to get just how much pain i was in. I really couldnt imagine regular repeats of that level of pain, i'm sure its still not even close to what you have to deal with. god it must be horrid!
I wish i could answer your questions, i do hope it stops and someone can help.
Take care
JJ
Hi Tonya,
I get TN as well but so far it has not brought me too my knees. I have heard that it does get worse over time so I'm not looking forward to that.
Just thought I'd let you know that I read your post and am sending loving hugs to you. I hope you get some relief and manage to sleep through the night.
Take care
Mistylee
I get TN as well but so far it has not brought me too my knees. I have heard that it does get worse over time so I'm not looking forward to that.
Just thought I'd let you know that I read your post and am sending loving hugs to you. I hope you get some relief and manage to sleep through the night.
Take care
Mistylee
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