Please help - am I developing Bilateral TN?

General General TN & GPN (Old Site)
1

Hi, I've been (very) slowly weaning off of Carbamazepine for several months, since I seem to be in a period of remission. Just over a week ago I got down to my very last 100mg tablet of Carbamazepine. I drop them about two to three weeks apart because I get bad withdrawal symptoms. It's normal to feel 'tooth sensitivity' in my TN area during withdrawal and while it's been worse than normal, I am still managing to stay away from actual TN attacks. However, around the same time as I dropped down to my last tablet I suddenly developed 'sensitivity' in my upper left-hand teeth (my TN is in my lower right).

Although I was anxious about this, I didn't worry unduly, until yesterday, when I got a tingle outside in the cold evening air, and then, the clincher this morning when I drank a glass of cold tap water and got a shock followed by a pause and then another lesser shock. That has me really worried, because it feels like a TN style attack and not a tooth sensitivity one. They feel different, with tooth sensitivity being more of a wincing ache, but the TN feeling like a probe to the nerve. And the after-shock thing is very TN.

I've put an appointment on with my dentist, but neither me nor my partner can see anything wrong with the tooth visually, and I have a horrible feeling in the pit of my stomach about this.

I have so many questions, and my anxiety level is through the roof, and we won't even go into the crushing disappointment of it coming back before I even managed to get med free, but appearing on the other side? That's horrific.

I'd like to ask if anyone has experienced anything like this as a side effect of coming off meds. Is it possible that this is just some kind of bizarre temporary nerve reaction from my meds being so low now?

The other thing I'd like to ask is, if this is bilateral TN developing, is there any other diagnosis I should be looking for? It says in Striking Back, and elsewhere, that bilateral TN occurs more often if you have another underlying condition. Does anyone know of anything I should be looking into? I have other health issues such as neutropenia, anaemia, low blood sodium and possibly hypothyroidism (that may have been caused by Carbamazepine - we're not sure). SO if anything there suggests anything to anyone...

Any help you can offer here would be most gratefully accepted. I know nothing about bilateral TN, and it is so very rare it seems highly unlikely, but this does feel just like it. To be honest I feel suicidally crushed by this. I just wasn't expecting it, and no part of me is prepared for it.

2

wwtet,

Of course it could be your teeth, I'm assuming your partner is not a dentist. Bilateral TN is said to be a slight warning of possible underlying problems, but I assume at some point you had an MRI, although things can change I wouldn't worry yourself on that score, get confirmation from a medical professional, leave that worry behind.

Bilateral TN is not as uncommon as you may believe. I am not too sure but I remember reading someone, I think it was RED, conducting a survey and I think the figure was around the 20% mark.

IF you have bilateral TN, how unlucky is that, given the odds of developing TN in the first place. I realise you have autoimmune issues, but with bilateral TN in the absence of pathology, I would consider a 'central' cause such as the neck as a possible.

3

Thanks, Aiculsamoth. I did have an MRI way back at the start and there was nothing of note in it, including no compressions. It does say in Striking back that only 4-5% of TN sufferers will have bilateral TN, so I'm guessing Red's poll showed how many people on here have it, rather than in the TN population on the whole. That makes sense, because it's mostly people who have intractable problems who use the forum, and bilateral TN would definitely qualify as that!

Thanks for the neck recommendation. I'm looking into that, along with TMJ related issues. I feel these have been brushed aside when I was first diagnosed. They're all too happy to get you on the meds and then forget it; after all it is 'incurable with no known cause'. Unfortunately, the cervical manipulation (is that right?) is not done commonly here in the UK and the only person I've seen who does it is in London, the other end of the country to me!


aiculsamoth said:

wwtet,

Of course it could be your teeth, I'm assuming your partner is not a dentist. Bilateral TN is said to be a slight warning of possible underlying problems, but I assume at some point you had an MRI, although things can change I wouldn't worry yourself on that score, get confirmation from a medical professional, leave that worry behind.

Bilateral TN is not as uncommon as you may believe. I am not too sure but I remember reading someone, I think it was RED, conducting a survey and I think the figure was around the 20% mark.

IF you have bilateral TN, how unlucky is that, given the odds of developing TN in the first place. I realise you have autoimmune issues, but with bilateral TN in the absence of pathology, I would consider a 'central' cause such as the neck as a possible.

4

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.

5

I'm unsure of what you mean my cervical manipulation, but if you mean the crack and pop, or upper cervical adjustments USA/ UK I am an unsure, but I feel anyone considering the neck as a cause for their TN, has many options, in the absence of serious pathology, much the same as someone suffering with cervicogenic headache, even down to your medical professional using cervical nerve blocks as a diagnostic tool. Even self help strategies for any other cervical problem if used correctly and under the advice of someone who knows what they are talking about. As for MRI and TN the radiologist does not look at your neck despite a portion of the trigeminal complex being situated there, and already having been imaged. I don't know why either, but as you have already had your scan, why not have your neuro evaluate it? That said it can or may show signs of the normal ageing process but these can cause TN, but it would rule out cervical pathology as a possible cause. I don't feel you should be travelling to London for some supposedly specialist treatment associated with the neck.

Woman with the electric teeth said:

Thanks, Aiculsamoth. I did have an MRI way back at the start and there was nothing of note in it, including no compressions. It does say in Striking back that only 4-5% of TN sufferers will have bilateral TN, so I'm guessing Red's poll showed how many people on here have it, rather than in the TN population on the whole. That makes sense, because it's mostly people who have intractable problems who use the forum, and bilateral TN would definitely qualify as that!

Thanks for the neck recommendation. I'm looking into that, along with TMJ related issues. I feel these have been brushed aside when I was first diagnosed. They're all too happy to get you on the meds and then forget it; after all it is 'incurable with no known cause'. Unfortunately, the cervical manipulation (is that right?) is not done commonly here in the UK and the only person I've seen who does it is in London, the other end of the country to me!


aiculsamoth said:

wwtet,

Of course it could be your teeth, I'm assuming your partner is not a dentist. Bilateral TN is said to be a slight warning of possible underlying problems, but I assume at some point you had an MRI, although things can change I wouldn't worry yourself on that score, get confirmation from a medical professional, leave that worry behind.

Bilateral TN is not as uncommon as you may believe. I am not too sure but I remember reading someone, I think it was RED, conducting a survey and I think the figure was around the 20% mark.

IF you have bilateral TN, how unlucky is that, given the odds of developing TN in the first place. I realise you have autoimmune issues, but with bilateral TN in the absence of pathology, I would consider a 'central' cause such as the neck as a possible.

6

Anyone considering the cause of their TN due to the neck, which everyone initially should be as a differential diagnosis, should google cervicogenic headache treatment and diagnosis, the two would have many similarities in diagnosis, cause and treatment.

7

I remember reading about neck problems a long while ago on here and they were talking about going to a chiropractor to get the neck adjusted/corrected. I remember looking it up and the only person here who did the technique was in London. I'm a bit reticent to let an osteopath/chiropractor loose on my neck because I remember reading about how many severe neck injuries they caused each year through overly heavy-handed 'corrections'. If I don't have a problem now, I don't want to create one!

As for my MRI, there would be no point in asking for anyone to evaluate it because they would simply tell me that had already been done. It's the radiologist who writes the report and that's what you get, end of discussion. The NHS is not good at crossing from one speciality to another. They are separated at time of birth and they never meet again!

I am going to have a look into things that can go wrong with the neck/spine area and see if anything presents itself, but frankly I am so ignorant about this I seriously doubt I will find anything useful!

aiculsamoth said:

Anyone considering the cause of their TN due to the neck, which everyone initially should be as a differential diagnosis, should google cervicogenic headache treatment and diagnosis, the two would have many similarities in diagnosis, cause and treatment.

8

Sorry, forgot to thank you for the cervicogenic headache treatment and diagnosis tip. Going to look that up now.

aiculsamoth said:

Anyone considering the cause of their TN due to the neck, which everyone initially should be as a differential diagnosis, should google cervicogenic headache treatment and diagnosis, the two would have many similarities in diagnosis, cause and treatment.

9

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.

10

WWTET,

I'm not tying to labour the point, and I'm not saying it applies to you. If you took the article ( in the tabs section) to your neuro, he would be negligent in refusing to look at your scan in relation to the neck. They are not trained to do so, but with the evidence of the article they will, with a little nudge from you. Again not saying it apllies but you don't want a rare pathology causing your TN in the cervical region to be ignored. This is unlikely in someone who has had TN for a time as other symptoms would probably manifest, but as said, arthritis of the neck can cause TN and may be evident on a scan.

My guess, is sometime VERY shortly all radiologists will be instructed to consider the neck as a cause.

As for chiro/osteopath "corrections", causing damage, I have yet to see the evidence (it isn't there), there are not enough stats out there to conclude the case. That said if a gung ho therapist who was to "correct" the neck, for example in an osteoporotic/ vascular compromised individual, the not expected outcome could be catastrophic. Like your neuro/ surgeon etc these therapists are trained not to do certain procedures on patients which are unsuitable.

I've said it before but it appears it is all right to perform procedures to which there is a known failure rate, e.g. death due to MVD, 1 in circa 300, yet the medical establishment warn you against neck manipulation because it could cause stroke (we have no statistics), despite the medical establishment been known to do on occasion the same procedure under anaeshetic.

That said, I do not advocate chiro/osteo over any other physical therapist who has the skill/ knowledge to treat a cervical problem. As far as I am aware, and I blame physios/ chiros/ osteopaths/ and indeed the patient for propagating things they have previously heard for this, the patient is often led to believe/ or says, therapist cracked my, whatever, neck for example and put my disc back in/ corrected my neck/ it was dislocated and no longer is, all mythical. The pop or crack of manipulation to a joint (not to be confused with all the other various types of manipulation physical therapists employ), as far as I am aware serves no more purpose than relaxing the muscles that cross and move that joint as EMG studies have shown, just like some kid popping his finger joints, there was nothing out, he put nothing back but in doing so he relaxed the muscles which acted on the joint and nerves associated with them. It is not just "corrections/ manipulations" that have the same affect but other treatment modalities from a wide range of physical therapists who are competent.

State registered therapists should also have the knowledge to refer you to the appropriate medic if the problem is beyond them or there are so called red flags against physical treatment, or physical treatment is unsuitable. They are going to struggle if a patient arrives in their clinic with a ' my MRI is clear', many would assume your cervical spine was assessed by their radiologist, they would be wrong.



Woman with the electric teeth said:

I remember reading about neck problems a long while ago on here and they were talking about going to a chiropractor to get the neck adjusted/corrected. I remember looking it up and the only person here who did the technique was in London. I'm a bit reticent to let an osteopath/chiropractor loose on my neck because I remember reading about how many severe neck injuries they caused each year through overly heavy-handed 'corrections'. If I don't have a problem now, I don't want to create one!

As for my MRI, there would be no point in asking for anyone to evaluate it because they would simply tell me that had already been done. It's the radiologist who writes the report and that's what you get, end of discussion. The NHS is not good at crossing from one speciality to another. They are separated at time of birth and they never meet again!

I am going to have a look into things that can go wrong with the neck/spine area and see if anything presents itself, but frankly I am so ignorant about this I seriously doubt I will find anything useful!

aiculsamoth said:

Anyone considering the cause of their TN due to the neck, which everyone initially should be as a differential diagnosis, should google cervicogenic headache treatment and diagnosis, the two would have many similarities in diagnosis, cause and treatment.

11

You also don't need to think you have a problem with your neck, to have cervicogenic TN you needn't have neck pain.

aiculsamoth said:

WWTET,

I'm not tying to labour the point, and I'm not saying it applies to you. If you took the article ( in the tabs section) to your neuro, he would be negligent in refusing to look at your scan in relation to the neck. They are not trained to do so, but with the evidence of the article they will, with a little nudge from you. Again not saying it apllies but you don't want a rare pathology causing your TN in the cervical region to be ignored. This is unlikely in someone who has had TN for a time as other symptoms would probably manifest, but as said, arthritis of the neck can cause TN and may be evident on a scan.

My guess, is sometime VERY shortly all radiologists will be instructed to consider the neck as a cause.

As for chiro/osteopath "corrections", causing damage, I have yet to see the evidence (it isn't there), there are not enough stats out there to conclude the case. That said if a gung ho therapist who was to "correct" the neck, for example in an osteoporotic/ vascular compromised individual, the not expected outcome could be catastrophic. Like your neuro/ surgeon etc these therapists are trained not to do certain procedures on patients which are unsuitable.

I've said it before but it appears it is all right to perform procedures to which there is a known failure rate, e.g. death due to MVD, 1 in circa 300, yet the medical establishment warn you against neck manipulation because it could cause stroke (we have no statistics), despite the medical establishment been known to do on occasion the same procedure under anaeshetic.

That said, I do not advocate chiro/osteo over any other physical therapist who has the skill/ knowledge to treat a cervical problem. As far as I am aware, and I blame physios/ chiros/ osteopaths/ and indeed the patient for propagating things they have previously heard for this, the patient is often led to believe/ or says, therapist cracked my, whatever, neck for example and put my disc back in/ corrected my neck/ it was dislocated and no longer is, all mythical. The pop or crack of manipulation to a joint (not to be confused with all the other various types of manipulation physical therapists employ), as far as I am aware serves no more purpose than relaxing the muscles that cross and move that joint as EMG studies have shown, just like some kid popping his finger joints, there was nothing out, he put nothing back but in doing so he relaxed the muscles which acted on the joint and nerves associated with them. It is not just "corrections/ manipulations" that have the same affect but other treatment modalities from a wide range of physical therapists who are competent.

State registered therapists should also have the knowledge to refer you to the appropriate medic if the problem is beyond them or there are so called red flags against physical treatment, or physical treatment is unsuitable. They are going to struggle if a patient arrives in their clinic with a ' my MRI is clear', many would assume your cervical spine was assessed by their radiologist, they would be wrong.



Woman with the electric teeth said:

I remember reading about neck problems a long while ago on here and they were talking about going to a chiropractor to get the neck adjusted/corrected. I remember looking it up and the only person here who did the technique was in London. I'm a bit reticent to let an osteopath/chiropractor loose on my neck because I remember reading about how many severe neck injuries they caused each year through overly heavy-handed 'corrections'. If I don't have a problem now, I don't want to create one!

As for my MRI, there would be no point in asking for anyone to evaluate it because they would simply tell me that had already been done. It's the radiologist who writes the report and that's what you get, end of discussion. The NHS is not good at crossing from one speciality to another. They are separated at time of birth and they never meet again!

I am going to have a look into things that can go wrong with the neck/spine area and see if anything presents itself, but frankly I am so ignorant about this I seriously doubt I will find anything useful!

aiculsamoth said:

Anyone considering the cause of their TN due to the neck, which everyone initially should be as a differential diagnosis, should google cervicogenic headache treatment and diagnosis, the two would have many similarities in diagnosis, cause and treatment.

12

I have bilateral ATN. It started in one tooth on the left, spread all over that side and by the second year started on the other side. There are lots of us within these groups that are bilateral. Rare we are indeed but do not let Drs scare you by saying that you must have MS because of this...only 5% of people with MS also have TN. I was also very young the first time I had TN...just 29.

And what you are discussing about neck issues I do agree that it is something to look into. Earlier this year I injured my neck and had to have physio and acupuncture for three months. Not only did it eleviate my neck issue but it really helped my facial pain and completely took away my daily migraines. I have been slowly weaning down my med and am still doing very well. Since then I have been doing lots of research into cervical therapy and how facial pain, migraines and occipital neuralgia can be intertwined with this. I think another clue that the issue is more complex is when multiple nerves are involved. I have symptoms of TN, ON, GN and GPN. BUT I am also very wary of chiropractors and would not let anyone start cracking anything. Do tons of research first. There is NUCCA, which is a chiropractor that does cervical work. Some Osteopaths also do. But for me I have stuck with my physiotherapist and her magical hands. She is very, very gentle and only does hands on manipulation of my cervical spine. She knows when it is out of alignment and I have returned to her a few times when pain starts creeping back. You have to be VERY careful. The first couple of treatments brought on pain.

I do not think that this will help everyone but I do think it is worth looking into if you are atypical, bilateral, have multiple nerves involved or also have pain that leaves your face. I have had pain down my neck, across the back of my shoulder and down my arm. I do believe now that it is all linked together even if my Drs will not.

13

Thanks for that, Aiculsamoth. If this (hopefully) faux 'bilateral TN' gets worse and I have to see the neurologist again I will take the article with me and be sure to wave it under his nose - for all the good it will do me! But it will be done. Leave no stone unturned, that's what I say.

aiculsamoth said:

WWTET,

I'm not tying to labour the point, and I'm not saying it applies to you. If you took the article ( in the tabs section) to your neuro, he would be negligent in refusing to look at your scan in relation to the neck. They are not trained to do so, but with the evidence of the article they will, with a little nudge from you. Again not saying it apllies but you don't want a rare pathology causing your TN in the cervical region to be ignored. This is unlikely in someone who has had TN for a time as other symptoms would probably manifest, but as said, arthritis of the neck can cause TN and may be evident on a scan.

My guess, is sometime VERY shortly all radiologists will be instructed to consider the neck as a cause.

As for chiro/osteopath "corrections", causing damage, I have yet to see the evidence (it isn't there), there are not enough stats out there to conclude the case. That said if a gung ho therapist who was to "correct" the neck, for example in an osteoporotic/ vascular compromised individual, the not expected outcome could be catastrophic. Like your neuro/ surgeon etc these therapists are trained not to do certain procedures on patients which are unsuitable.

I've said it before but it appears it is all right to perform procedures to which there is a known failure rate, e.g. death due to MVD, 1 in circa 300, yet the medical establishment warn you against neck manipulation because it could cause stroke (we have no statistics), despite the medical establishment been known to do on occasion the same procedure under anaeshetic.

That said, I do not advocate chiro/osteo over any other physical therapist who has the skill/ knowledge to treat a cervical problem. As far as I am aware, and I blame physios/ chiros/ osteopaths/ and indeed the patient for propagating things they have previously heard for this, the patient is often led to believe/ or says, therapist cracked my, whatever, neck for example and put my disc back in/ corrected my neck/ it was dislocated and no longer is, all mythical. The pop or crack of manipulation to a joint (not to be confused with all the other various types of manipulation physical therapists employ), as far as I am aware serves no more purpose than relaxing the muscles that cross and move that joint as EMG studies have shown, just like some kid popping his finger joints, there was nothing out, he put nothing back but in doing so he relaxed the muscles which acted on the joint and nerves associated with them. It is not just "corrections/ manipulations" that have the same affect but other treatment modalities from a wide range of physical therapists who are competent.

State registered therapists should also have the knowledge to refer you to the appropriate medic if the problem is beyond them or there are so called red flags against physical treatment, or physical treatment is unsuitable. They are going to struggle if a patient arrives in their clinic with a ' my MRI is clear', many would assume your cervical spine was assessed by their radiologist, they would be wrong.



Woman with the electric teeth said:

I remember reading about neck problems a long while ago on here and they were talking about going to a chiropractor to get the neck adjusted/corrected. I remember looking it up and the only person here who did the technique was in London. I'm a bit reticent to let an osteopath/chiropractor loose on my neck because I remember reading about how many severe neck injuries they caused each year through overly heavy-handed 'corrections'. If I don't have a problem now, I don't want to create one!

As for my MRI, there would be no point in asking for anyone to evaluate it because they would simply tell me that had already been done. It's the radiologist who writes the report and that's what you get, end of discussion. The NHS is not good at crossing from one speciality to another. They are separated at time of birth and they never meet again!

I am going to have a look into things that can go wrong with the neck/spine area and see if anything presents itself, but frankly I am so ignorant about this I seriously doubt I will find anything useful!

aiculsamoth said:

Anyone considering the cause of their TN due to the neck, which everyone initially should be as a differential diagnosis, should google cervicogenic headache treatment and diagnosis, the two would have many similarities in diagnosis, cause and treatment.

14

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.

15

I agree, Jane. It seems very hard to believe that nerve pain in several locales, when you have a problem with it, isn't somehow connected. Doctors are very bad for compartmentalising everything. They seem to think the body is a set of drawers rather than a functional whole! And I do agree with being wary of osteopaths. I imagine, given doctors ignorance of TN, the average osteopath wouldn't be ahead of the game on knowledge! But I am seriously looking into it since I've felt from the outset that mine might be related to tooth grinding and an 'off' bite. I Have never been able to get anyone to take it seriously, but perhaps I need to start pushing to see some specialists. I think neck/teeth/head is a very obvious area of relationship but Western medicine splits them up terribly. My doctor openly admitted he didn't know anything about teeth and that his knowledge "stopped at the jaw".

On the nerve pain popping up in odd places - since I developed TN I get far more 'shooting pains' than I ever used to. They are electric, just like TN, and go predominantly from my toes to my gut, or just stay in the toes. Those ones can literally jab away at me for hours, over and over. Rubbing my toes will ease it, but only when I am rubbing. As soon as I stop the little twinges just start firing off again. I've often wondered if that is a related nerve dysfunction, especially as I have gastric problems of many years standing. I can't help feeling the whole thing is all one big problem.

justjane37 said:

I have bilateral ATN. It started in one tooth on the left, spread all over that side and by the second year started on the other side. There are lots of us within these groups that are bilateral. Rare we are indeed but do not let Drs scare you by saying that you must have MS because of this...only 5% of people with MS also have TN. I was also very young the first time I had TN...just 29.

And what you are discussing about neck issues I do agree that it is something to look into. Earlier this year I injured my neck and had to have physio and acupuncture for three months. Not only did it eleviate my neck issue but it really helped my facial pain and completely took away my daily migraines. I have been slowly weaning down my med and am still doing very well. Since then I have been doing lots of research into cervical therapy and how facial pain, migraines and occipital neuralgia can be intertwined with this. I think another clue that the issue is more complex is when multiple nerves are involved. I have symptoms of TN, ON, GN and GPN. BUT I am also very wary of chiropractors and would not let anyone start cracking anything. Do tons of research first. There is NUCCA, which is a chiropractor that does cervical work. Some Osteopaths also do. But for me I have stuck with my physiotherapist and her magical hands. She is very, very gentle and only does hands on manipulation of my cervical spine. She knows when it is out of alignment and I have returned to her a few times when pain starts creeping back. You have to be VERY careful. The first couple of treatments brought on pain.

I do not think that this will help everyone but I do think it is worth looking into if you are atypical, bilateral, have multiple nerves involved or also have pain that leaves your face. I have had pain down my neck, across the back of my shoulder and down my arm. I do believe now that it is all linked together even if my Drs will not.

16

This osteopath, feels after six months plus, after being in practice for twenty years, and initially being taught TN in the main, in the absence of serious pathology is due to the neck( twenty years ago!! and the medical profession are about to wake up in the next couple of months) after writing what albeit I would consider one of the most illuminating articles on TN since the advent of MVD, as a procedure with it's many limitations, I think I'll sign out. It has been a major drain on my time which I had hoped would be rewarded with sufferers of TN being more proactive with their own health. This I don't blame on TN patients, but the fact that they depend on the medical profession to dictate answers when the majority have no idea, or refuse to accept the basis of medical problems is lifesyle, as in the majority of western disease is due to the environment we place ourselves in. Wary of osteos/ chiros/ crystal healers/ voodoo/ witch craft your G.P. contributes more to ill health than those quoted put together. In part I blame the mentioned therapists to not sell themselves to the general public, but then many don't need to because they have enough work, why would that be? Osteopathy, show me the bodies, Chiro show me the bodies, crystal healing...general medicine by comparison- perhaps we can explain this mortality on a complication as opposed to the procedure.

I don't blame you guys in any way whatsoever, but a bit like those who have tried to convince that you shouldn't have MVD due to TN as a result of dental procedures and in the main have given up, you can only do so much before you lose the will. Why would anyone consider MVD before investigating the neck as a cause? it is depressing.

I went swimming, my TN has returned, has my teflon pad slipped? Not particular a practising religious sort, but may we pray for all sufferers.

17

This osteopath, feels after six months plus, after being in practice for twenty years, and initially being taught TN in the main, in the absence of serious pathology is due to the neck( twenty years ago!! and the medical profession are about to wake up in the next couple of months) after writing what albeit I would consider one of the most illuminating articles on TN since the advent of MVD, as a procedure with it's many limitations, I think I'll sign out. It has been a major drain on my time which I had hoped would be rewarded with sufferers of TN being more proactive with their own health. This I don't blame on TN patients, but the fact that they depend on the medical profession to dictate answers when the majority have no idea, or refuse to accept the basis of medical problems is lifesyle, as in the majority of western disease is due to the environment we place ourselves in. Wary of osteos/ chiros/ crystal healers/ voodoo/ witch craft your G.P. contributes more to ill health than those quoted put together. In part I blame the mentioned therapists to not sell themselves to the general public, but then many don't need to because they have enough work, why would that be? Osteopathy, show me the bodies, Chiro show me the bodies, crystal healing...general medicine by comparison- perhaps we can explain this mortality on a complication as opposed to the procedure.

I don't blame you guys in any way whatsoever, but a bit like those who have tried to convince that you shouldn't have MVD due to TN as a result of dental procedures and in the main have given up, you can only do so much before you lose the will. Why would anyone consider MVD before investigating the neck as a cause? it is depressing.

I went swimming, my TN has returned, has my teflon pad slipped? Not particular a practising religious sort, but may we pray for all sufferers.

18

As a side note, already mentioned, I don't give a monkeys who treats cervicogenic TN, just that each and everyone considers it.

19

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

20

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.