I am just curious because from reading I have both?! Is that even possible?!
And the ear pain is driving me nuts right now. How common is ear pain with TN?!
Hi Kismet
I am so sorry to tell you that the answer is yes, I have Type I on the right and Type II on the left. I also have very strong ear pain which is known as Geniculate Neuralgia and part of TN .
Why not join this group and see just how common the pain is http://www.livingwithtn.org/group/tn-atn-and-ear-pain
there are many members there you can connect with.
Absolutely possible to have both TN1 and TN2. Hundreds of our members are dealing with this combination. Bilateral pain is reported by over 100. The ear pain is also fairly common. It may be called Nervus Intermedius or Geniculate Neuralgia, and it causes deep icepick stabbing pain and/or painful fulness in the ear. The Nervus Intermedius is a segment of the trigeminal nerve, and this type of pain is treated much the same as trigeminal pain in the cheek or jaw.
Regards, Red
I have both! All on my left side. The type 1 attack-like pain and the type 2 awful constant ache/boring pain/sting somewhere (including my left ear). I hope you get some good pain relief soon.
I also have Atypical bilateral TN type I and II with severe ear pain, with symptoms that go from type I (electrical and stinging) to type II (constant pressure and burning) I have seen several specialists and I have been dx with Atypical bilateral type II TN and I have also been dx with non-specific idiopathic facial / ear pain neuralgia syndrome. Another words they really do not know what to call mine because I do not fit any one specific type of TN or any type of Atypcial form of TN and I have been told that the intense pressure and pain in the ear is not normal for any type of TN, yet I have read about others on here that have complained of it, so who knows. Anyway, I am not sure I will ever have a true correct dx and I am not sure that there really is one for me, but the treatments other than surgeries are all the same.
I had no idea that ice pick pain is related to TN. I have had ice pick pain around my ears since I was 19, but only had TN1 face pain and TN2 ear burning/exploding feeling five months ago when I was diagnosed with TN. I have never connected the 2. I usually got the ice pick pain when I had an infection (recurring bladder infections) or stressed/sick. My doctor never knew what it was but I went for acupuncture 4 years ago and it did not return until after my first TN1 attack. Does this mean I have had TN since I was 19????
Richard A. "Red" Lawhern said:
Absolutely possible to have both TN1 and TN2. Hundreds of our members are dealing with this combination. Bilateral pain is reported by over 100. The ear pain is also fairly common. It may be called Nervus Intermedius or Geniculate Neuralgia, and it causes deep icepick stabbing pain and/or painful fulness in the ear. The Nervus Intermedius is a segment of the trigeminal nerve, and this type of pain is treated much the same as trigeminal pain in the cheek or jaw.
Regards, Red
Collette,
Yes it's possible you've had geniculate neuralgia (a particular sub-type of trigeminal neuralgia in one section of the distribution of the nerve) for a long time and it went unrecognized. GN tends to mimic ear infections.
Alternately, you may also or instead have had ear infections. It's nearly impossible to know with any certainty. But one thing I can almost guarantee is that the ear pain was not related to bladder infections at all, except possibly through stress.
Acupuncture has a record of helping some people with both TN and GN. And not helping others. We're not sure why the outcomes are so inconsistent.
Regards, Red
Thanks for your reply. The doctor said I have scar tissue in my ear so I asked my mother about it and she said I had a bad ear infection as a kid, but I have not had one since. My ice pick pain is more like quick sharp pains behind my ear, one after the other, with brief relief. Sometimes that is all that I have and then others times it has successions of this for a couple of days. The TN2 pain is in the ear and it is burning and has incredible pressure. When I was diagnosed with TN I kept asking the doctors to check for an ear infection hoping that my problem could be resolved easily. I had inflammation in my blood and other issues but the doctors could not find what was causing it and are still trying to find out what else is wrong with me. (That is another story)
I didn't think bladder infections were connected, rather that there was a connection with the immunity system being compromised (low). Sorry if I never get my point across properly, I find it difficult with the effects of tegretol to communicate clearly, not to mention just make sure spelling is ok. Maybe the system being compromised creates stress which triggers the TN??
Richard A. "Red" Lawhern said:
Collette,
Yes it's possible you've had geniculate neuralgia (a particular sub-type of trigeminal neuralgia in one section of the distribution of the nerve) for a long time and it went unrecognized. GN tends to mimic ear infections.
Alternately, you may also or instead have had ear infections. It's nearly impossible to know with any certainty. But one thing I can almost guarantee is that the ear pain was not related to bladder infections at all, except possibly through stress.
Acupuncture has a record of helping some people with both TN and GN. And not helping others. We're not sure why the outcomes are so inconsistent.
Regards, Red
Though I haven't read much about systemic blood infections, the symptoms you are reporting in your pain near the ear seem to line up fairly well with Geniculate Neuralgia, Collette.
And there's no need for "sorry", Hon. We all know that both the pain and side effects of medications can scramble communications. When I expand on a thread like yours, it is not to correct or criticize you personally. I'm more trying to ensure that others who are also dealing with such issues are able to see the situation with as much clarity as I can bring to the discussion. Sometimes I step on words too, and I'm not even on meds! No big deal. Nobody's perfect.
Be well, Collette. Come back and participate as it seems constructive.
Regards, Red
Well this is good to read. I know I have both but my neuro said I only had TN I. At the beginning of one of my horrendous episodes, it’s starts as I with the shocks coming full force but it slowly progresses into II. The continuous burning, aches, spasms and tingling. When my episode dies down after a few months, it goes back to I with the shocks. I always have at least one or two shocks a day. I tend to go into remission for about three months out of a year with no pain. I’ve had TN for four years now. This time it’s different though. I have alot more pain in my cheek area to my nose and also in my eardrum. I’ve never had that before. It’s always been centralized to my upper and lower jaws. Is this common?
My question is, I’ve read the MVD is typically not successful with TN II. If I have both, would it be worth it to have the surgery? Thanks. Diana
Two inputs, Diana:
(1) I once corresponded regularly with Peter Janetta, the surgeon who popularized MVD. In his opinion, anyone who has ever had Type I symptoms should be considered a candidate for the procedure, even if their present symptoms are solely Type II or dominated by Type II.
(2) I've recently posted an abstract here on Living With TN from a paper by the team at Aleghenie General Hospital, which addresses over 2000 consecutive MVD case histories including over 600 with Type II symptoms. The outcomes for Type II patients weren't as good as for Type I. But about half had total or partial pain control up to five years.
You can look up the abstract in the Group dedicated to Type II and ATN patients. I think that abstract deserves serious discussion with your neurologist before you are referred to a neurosurgeon.
Regards and best,
Red
Thanks Red:)
Richard A. "Red" Lawhern said:
Though I haven't read much about systemic blood infections, the symptoms you are reporting in your pain near the ear seem to line up fairly well with Geniculate Neuralgia, Collette.
And there's no need for "sorry", Hon. We all know that both the pain and side effects of medications can scramble communications. When I expand on a thread like yours, it is not to correct or criticize you personally. I'm more trying to ensure that others who are also dealing with such issues are able to see the situation with as much clarity as I can bring to the discussion. Sometimes I step on words too, and I'm not even on meds! No big deal. Nobody's perfect.
Be well, Collette. Come back and participate as it seems constructive.
Regards, Red
I have pain very high up on the jaw bone next to the ear that sometimes makes it feel like my head is in a vice grip. Also my ears feel like they are severely infected all the time. Lately I've been getting stabbing feeling behind the ear,, wondering if THIS is part of it.. Probly is. Just annoying... BLAH!!! One more annoyance. BLASTED!!! DID I mention both sides.... BLAH
Hi Min, It sounds very similar to me . . . isn't it lovely! I have very few icepick pains on the opposite side and much milder breakthrough pain on the opposite side. I started getting the icepick pains as a teenager (not sure exactly what age) but my youngest son is 13 and he is now having them. It makes me so sad to think that he might get this too. Out of my 3 kids he is the one most like me: always pleasing others, doing our best (which sometimes isn't good enough), anxiety/worry issues etc. Now of course I am worried about him too. . .
Min said:
I have pain very high up on the jaw bone next to the ear that sometimes makes it feel like my head is in a vice grip. Also my ears feel like they are severely infected all the time. Lately I've been getting stabbing feeling behind the ear,, wondering if THIS is part of it.. Probly is. Just annoying... BLAH!!! One more annoyance. BLASTED!!! DID I mention both sides.... BLAH
Thanks so much Red for your explanation. I can’t tell you how much I appreciate your input. It’s so nice to hear answers from someone other than my neurologist. Diana
Hi!
I am also with so many of the other members I have ATN/TN on my left side and Classic TN on my right side. My left side always has a boring ache around my eye everday. It has not left in the last 8 1/2 months since this has started. It is very rare unfortunately so you might get some funny looks. I unlike some members do not have the pain in my ears for that I am grateful for. Good luck with your search and I hope you receive some relief soon!
Sorry to hear of so many people with both TN1 and TN2. I also have both on the only right side of my face since 1993.
Even though mine appeared immediately after having a brain surgery that incidentally severed the 5th cranial nerve at the brain stem, my doctors seemed to be in denial about how intense the pain was and I went under-treated for many, many years. I dreaded landing in the ER during acute attacks because i was more often than not treated as a migraine patient or drug seeker and sometimes left the hospital with my condition worsened by the wrong treatment.
It seems that my family physician does have a better understanding of it now and I couldn't be more grateful.
Wishing you all a happy holiday season!
Just one question about TN2.
The TN2 I experience is all of the time, no break and over the years has worsened so much as the disconnected nerves break down and misfire whereas TN1 tends to be more episodic and overactive during seasonal changes etc.
Is TN2 a 24/7, everyday pain for everyone who experiences it or can it be episodic?
TN2 can be either 24-7 or episodic (come and go). An increasing number of physicians are coming to regard the long-acting burning, throbbing, achy pain of TN2 as a variant of trigeminal neuropathic pain, but a variant where the injury is not so much discrete as systemic in character, perhaps with central nervous system sensitization of some kind. I've talked with face pain patients during the past 18 years who had months of TN2 pain, only to have it go into remission for months before returning. In some cases, people experienced a few hours per day of this type of pain, to have it fade (particularly while laying down to sleep). I don't think there is a one-size-fits-all rule of thumb here.
Go in Peace and Power
Red Lawhern, Ph.D.
Resident Research Analyst, LwTN
Thanks for the clarification Red. My TN2 is very present at every minute of every day and has been since I had surgery in 1993, never a remission. For me, it seems that the longer my TN 1 and 2 went untreated, the worse they both became although to some extent this is true of pain and the CNS. The entire right trigeminal nerves are also degenerating which also makes the pain worse over time.
I am now taking a cocktail approach of opioids, a synthetic THC and sleeping pills to get through my days with anywhere from 20- 40% less pain or less perceived pain, it's still there but I care much less about it. The synthetic THC has greatly helped lessen the number of TN1 attacks I have per day from 40 or more down to a mere dozen or so. If I skip a dose of Nabilone (Canadian name), the stabbing pains return right away. Nabilone has also helped me with pain related nausea, making "getting the munchies" a positive side-effect for me ;-) Wondering if there are studies on Cannabis to treat TN?