Thanks, Mimi, I hope so too! I am definitely looking into other things, and, of course, I am seeing the dentist shortly; it may just be a tooth issue (I sincerely hope so!). It hasn't got any worse, which I'm finding optimistic. I am hoping that this is just some kind of reaction to coming off Carbamazepine after being on it so long, and that it's maybe just made the trigeminal nerve more sensitive and touchy. In all truth, I get such bad withdrawal side effects from changing the drug, nothing would surprise me!
And I get completely what you are saying about the individual identities of TN. In the relatively short time I've had it, I've realised most forcefully that no two people have the same experience of it. When mine was at its height I had the severe electric shocks until Carbamazepine reined them in. But after that I had a hot burning pain that would ebb away whenever the tooth/mouth area of my TN was touched. Nothing shifted that during the whole duration of the illness, until B12 came along and lessened it, until it went, finally, into what I hope is an authentic remission.
Anyway, time will tell. I am no longer taking Carbamazepine, so we'll see how this settles and whether I am genuinely in remission or the disease is just changing on me!
Mimi said:
Hi, I certainly hope it is/was just a fluke or perhaps a dental issue.
The nerves are complex as is trigeminal neuralgia, it's not as cut and dried as textbooks will have you believe.
I was diagnosed with cLassic right sided TN @ 29 yrs of age. Within 6-8 weeks my left side presented with TN 2, more of a constant boring, burning pain.
My bilateral pain is never felt on both sides at the same time.
Fast forward I'm now 43, my right side is fairly quiet, my left however is both forms of TN and refractory.
I believe there is something to be said for exploring the cervical spine. I have met with a Chiropractor who specializes in NUCCA, and is very well informed on TN, with several TN patients...do they all see success with this treatment? He honestly answered no. But many have.
Research all options and possible treatments both medically and holistically available, you never know what may help.
We all have to educate ourselves and we can learn from one another if we share our experiences.
Sending positive thoughts, and (( hugs )) Mimi
No need to worry, Aiculsamoth, I've taken everything you've said on board and will be investigating it fully.
aiculsamoth said:
As a side note, already mentioned, I don't give a monkeys who treats cervicogenic TN, just that each and everyone considers it.
Great, and I wish you all the best, in what ever direction you are taken.
Woman with the electric teeth said:
No need to worry, Aiculsamoth, I've taken everything you've said on board and will be investigating it fully.
aiculsamoth said:
As a side note, already mentioned, I don't give a monkeys who treats cervicogenic TN, just that each and everyone considers it.
OSUBUCKS1
Your attitude depresses me, you had a failed MVD are looking at Gamma Knife with no indication of looking at the neck as a cause, why?
aiculsamoth said:
Great, and I wish you all the best, in what ever direction you are taken.
Woman with the electric teeth said:
No need to worry, Aiculsamoth, I've taken everything you've said on board and will be investigating it fully.
aiculsamoth said:
As a side note, already mentioned, I don't give a monkeys who treats cervicogenic TN, just that each and everyone considers it.
Osbucks1,
My apologies, I didn't mean as stated, reading as I wrote, and replied, sounds extremely arrogant, not my intention at all, my intention was however that you might consider your neck as a cause for your TN, before you consider any destructice procedures, was only trying to be of some possible help. Sorry to of offended. Your personnel assessment was probably correct.
OSUBUCKS1 said:
My attitude depresses you? Who the hell are you? I didn't realize I had to check with you before making a decision. You're an idiot.
aiculsamoth said:
OSUBUCKS1
Your attitude depresses me, you had a failed MVD are looking at Gamma Knife with no indication of looking at the neck as a cause, why?
aiculsamoth said:
Great, and I wish you all the best, in what ever direction you are taken.
Woman with the electric teeth said:
No need to worry, Aiculsamoth, I've taken everything you've said on board and will be investigating it fully.
aiculsamoth said:
As a side note, already mentioned, I don't give a monkeys who treats cervicogenic TN, just that each and everyone considers it.
That said, who on earth would expect to you make a decision, before checking in with anybody, I assume your an individual, and should have taken it as meant. Your response is indeed depressing, but personal circumstances I can perhaps understand. You've struggled, except a helping hand, whether you agree with it or not without the attitude, which, I do understand. Disregard everything I have previously said , do you think it is for my own health?
aiculsamoth said:
Osbucks1,
My apologies, I didn't mean as stated, reading as I wrote, and replied, sounds extremely arrogant, not my intention at all, my intention was however that you might consider your neck as a cause for your TN, before you consider any destructice procedures, was only trying to be of some possible help. Sorry to of offended. Your personnel assessment was probably correct.
OSUBUCKS1 said:
My attitude depresses you? Who the hell are you? I didn't realize I had to check with you before making a decision. You're an idiot.
aiculsamoth said:
OSUBUCKS1
Your attitude depresses me, you had a failed MVD are looking at Gamma Knife with no indication of looking at the neck as a cause, why?
aiculsamoth said:
Great, and I wish you all the best, in what ever direction you are taken.
Woman with the electric teeth said:
No need to worry, Aiculsamoth, I've taken everything you've said on board and will be investigating it fully.
aiculsamoth said:
As a side note, already mentioned, I don't give a monkeys who treats cervicogenic TN, just that each and everyone considers it.
And I am sorry you are struggling, please entertain the idea your neck may be a cause, wishing you well.
OSUBUCKS1 said:
No worries. I'm open to all ideas. I just started taking B12 after reading that some TN patients have had success. I went into my MVD surgery with high hopes as the success rate is about 90 percent. My pain, however, has just increased since the surgery. I'm looking into Gamma Knife as the pain is just destroying me right now.
aiculsamoth said:
Osbucks1,
My apologies, I didn't mean as stated, reading as I wrote, and replied, sounds extremely arrogant, not my intention at all, my intention was however that you might consider your neck as a cause for your TN, before you consider any destructice procedures, was only trying to be of some possible help. Sorry to of offended. Your personnel assessment was probably correct.
OSUBUCKS1 said:
My attitude depresses you? Who the hell are you? I didn't realize I had to check with you before making a decision. You're an idiot.
aiculsamoth said:
OSUBUCKS1
Your attitude depresses me, you had a failed MVD are looking at Gamma Knife with no indication of looking at the neck as a cause, why?
aiculsamoth said:
Great, and I wish you all the best, in what ever direction you are taken.
Woman with the electric teeth said:
No need to worry, Aiculsamoth, I've taken everything you've said on board and will be investigating it fully.
aiculsamoth said:
As a side note, already mentioned, I don't give a monkeys who treats cervicogenic TN, just that each and everyone considers it.
Thanks, Dan, I feel better equipped to handle whatever develops now. You've been a great help. Thanks again. X
OSUBUCKS1 said:
Exactly. It can change back and forth within seconds. It's about 90 percent on the right. Some days I will have very few attacks on the left.
Feel free to ask as many questions as you need. TN patients are the best source of information about TN.
-Dan
@Dan_TrigemNeura
Woman with the electric teeth said:
So, Dan, it would be normal for you to have pain on both sides in the one day, just firing off on one side, then the other, then changing back? I think you did say that you get it mostly on the right? So is it more of a firing away on the right with only occasional twinges on the left?
Thanks of all your patient answers, by the way; it's a great help in establishing what I'm actually looking at. This kind of information is hard to find in general TN articles, so I very much appreciate it.
OSUBUCKS1 said:
Yes, my attacks occur on one side at a time. However, they can come in rapid valleys in which the attacks change sides rapidly.
-Dan
@Dan_TrigemNeura
Woman with the electric teeth said:
That was very quick, Dan. When I read up on it, it said they tend to occur years apart - I'm guessing it's seen as some kind of degeneration. That comforted me, but now, looking at your history, I see there's nothing to be comforted about!
Bad luck with your MVD - that's a great shame. It must have been a big disappointment for you. I also read that the pain in bilateral tends to occur discretely, i.e. you get pain on the right, then on the left, not the two together. Is that how it is for you - do you get sepeprate attacks on each side?
OSUBUCKS1 said:
I developed TN on the left side in September 2014 and then also on the right side in January 2015. I had an unsuccessful MVD on the right side 9/15/15. The pain is getting much worse, and I'll be meeting with the surgeon soon to discuss Gamma Knife. The pain is about 90 percent on the right side.
-Dan
@Dan_TrigemNeura
Woman with the electric teeth said:
Thanks for that, Osubucks - now I feel less ignorant. How long have you had your bilateral TN, if you don't mind me asking? And did it start out as classical TN on one side only, or were you bilateral right from the off?
OSUBUCKS1 said:
Developing bilateral TN at a young age, as I did (36 years old), can be a warning sign for MS. A clean MRI does not completely rule out MS. Visual evoked potential and lumbar puncture are additional tests for MS.
I'm not sure why I developed bilateral TN. It's not related to any other condition I have.
Woman with the electric teeth said:
Hi Osubucks. Yes, I had an MRI done right at the outset and there was nothing odd noted in it. Not even any compressions. I'm not familiar with a "visual evoked potential" though - what is it? And why would they want to do a lumbar puncture?
Do you know why you developed bilateral TN, is it related to another condition?
OSUBUCKS1 said:
I have bilateral TN, and it is not as rare as some doctors would have you think.
I assume you have had an MRI to check for MS? Bilateral is more common in MS patients. Beyond an MRI, your doctor may order a visual evoked potential and a lumbar puncture.