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Living With Facial Pain

Living with TN2

#1

I am new to this forum but had been suffering facial pain since 2007. Mine started with an ear infection that expanded on the left side of my face and damaged Vestibular, Auditory, Trigeminal and the inside my mouth nerves. As if there was not enough pain on the left side to damage. My symptoms are constant pain and numbness on the left side my head that moves around the head, constant tinnitus and dizziness, itchiness on the left side of tongue, pain the inner ear canal, and other symptoms such as itchiness and tingling around the left side of head. First few years I lived with anxiety and panic attacks for not knowing what is happening to me, taking medications to keep calm. I had to change jobs a few times, the last few years I decided to stop taking medication in order to understand what is happening to me. I must say that this is the most complicated problem the brain deal with and at times it gets so confused that throws the whole body into abyss without any rhyme or reason.


So far no doctors have been able to take me seriously. MRI and CT SCAN have revealed nothing wrong with the nerves or showing TN, and because of complications between dizziness and pain, no medications have been able to contain the pain without increasing the dizziness and tinnitus. Natural remedies and alternative medications such as Acupuncture and Chinese herbs have help to a limited amount but have not healed the problem.


At times I get very frustrated with surroundings and have to find a quiet, dark place just to ride the attacks for few days until I become functional, but in most days I only manage the attacks but being familiar with signs and the time it needs to ride it out. I get attacks about three times a day lasting an hour or two each. The rest of the day is manageable.

Some of the specialist call it a complications that can not be dealt with and simply has to live with the pain.

I am hoping this forum can help me with containing the symptoms. I live in Canada and do not have access to all medications in US (such as Tegretol).

Thanks for reading my story.

#2

Sorry that you're going through this, with no solution in sight- but you can talk to people on here who understand what you're suffering.

#3

Hi Atashkade,

It sounds like you have been through a lot and deal with a lot of pain. Many of us that have ATN or Type 2 have a very difficult time getting any sort of "real" diagnosis. A lot of us every single test and MRI come back normal time and again. I have bilateral ATN in all three branches and do share many of your pain locations. I also have had a lot of dizziness, nausea and vertigo when I get a flare up around my left eye. I get a lot of migraine and cluster headache symptoms with those flare ups. Also the tongue pain is absolutely horrendous! Each new symptom of TN that I get seems worse then the last.

A couple of things that you may want to look up since your pain is fairly widespread. Are you familiar with these? Occipital Neuralgia, Geniculate Neuralgia, and Glossopharyngeal Neuralgia. You have symptoms of these. I do too.

I also live in Ontario. I am two hours east of Toronto around the Cobourg area. Have you heard of or seen Dr. Peter Watson in Etobicoke? He is semi-retired now but he is a facial pain neurologist and does have a pretty good understanding of what ATN entails. I have been under his care for the past year.

I also have not been given any options for surgery as nothing shows on my MRI. Not that I would attempt that as success rates are way lower for atypical pain. I have been forced to settle for controlling this with medication....which has its positives and negatives for sure. I have also found that acupuncture helps and actually I found a lot of relief through physiotherapy that I was having for a neck issue. Have you heard of Cervicogenic Trigeminal Neuralgia, Upper Cervical therapy or NUCCA? Something to look into as an alternative treatment.

One thing you said was curious to me--that you don't have access to certain meds like Tegretol? You certainly do!!--Tegretol is also known as Carbamazapine---also Gabapentin is also known as Neurontin--are the two first line treatments for TN. Lyrica is another one that people have success with. I have had a lot of success with Nortriptyline and Amitriptyline which are tricyclic anti-depressants and can help with type 2 symptoms.

Have you ever tried any migraine medication? Some people have success with Triptans or Topomax. Since you have a lot of numbness and vertigo that might be worth looking into.

Anyways, I have been on the forums for a couple of years and have a pretty good network of TNers in Ontario. If you need any info let me know.

Jane

#4

Thanks Jane for many useful information. Your case offers many similarities to mine and would be a good reference to follow as a path to dealing with the issues I have.

I have not seen Dr. Watson and would be good to try visiting him. I am trying to get to Dr. Hodaie which is a TN specialist in Toronto, which has a 10 months waiting period. I am going through my own neurologist first to get to him. I will mention Dr. Watson name to him when I see him first in January and hopefully get his help.

My own neurologist is clueless about this problem and thinks I must be dreaming these pains.

I was at a facial pain conference in NY last month. There were many useful science offered in that conference that helped me to understand the origin of the pain and what it is about. However, majority of discussion and research was on TN1, which did not help me in particular. When asking about Gamma Ray option they all said it can only be applied to TN1.

I have tried many of the medication you named. My issue with medication is that I am a computer engineer that requires focus and staring at monitor. These drugs all take a toll on me and make me very tiered. So I have the option of dealing with the pain and fatigue that comes with it or take the medication and stay drowsy and sleepy. I have decided to manage the pain and at least stay aware during the day. This off course means frequent short sleeps and lying down during the day.

Before the infection I was an executive at a computer start up with a huge potential. After the infection I slowly drifted away to become a consultant and if I project my future I think pretty soon I have to retire from this business and try to find a less intense occupations that allows me to manage my symptoms.

There is this notion of peak period of medication that was discussed in the conference. I think if there is a way to ride out the peak period of medication by taking them as an example in the middle of the night, I would not mind trying Gabapentin and ride out the peak period of it during the night to help me with in the morning. I find it that I have generally more pain in the morning than in the afternoon. It seems the combination of utilizing the facial muscles and eye muscles and gravity are all trigger points to activate the pain. By the time in the afternoon after the first relaxation I generally deal with the pain much better. So if I find a way to quiet the pain in the morning that might be a way to go forward. Do you have any suggestions?

There is a meeting of TN patients in Toronto the third Sunday of every month. I came to know it during the conference. Have you ever attended any? There is a lady from Barrie that runs the forum for it. I plan to attend in January.

If you don't mind I like to speak to you. Is there a chance we can talk?

I will do research on the procedures you mention and try to gain some insight into it. This problem has made me a neurologist and no longer need any doctors.

Thanks again for taking the time to write me the email.


Saeid

#5

Hi again.

Yes Dr. Hodaie is certainly a leading neurosurgeon for TN in our area. I do know a couple of people with TN2 that have been to see her and have had procedures done even without much luck at all. It will of course be great to get her take on what is happening to you. I did see Dr. Tymianski at Toronto Western, who is one of her colleagues. He did not offer me any help with surgery but he is the one that referred me to Dr. Watson...so at the very least maybe she can make this referral for you. He is semi-retired so I do hope for your sake that he will still accept new patients. He has kept on only his facial pain patients.

Good for you that you had a chance to go to the conference. And yes we do have to become our own specialists and best advocates, which it certainly sounds like you are doing! Keep searching for help and for answers. I have not been to any of the meetings in Toronto though I would like to attend sometime. It is a bit of drive but I really should arrange to go. It is amazing to meet other sufferers. 99% of everything I have learnt has been through others' knowledge and experience.

Do you spend a lot of time on the computer? I do as well and it contributes to my pain. It took me a long time to make that correlation but I also get pain off of my face so there is more going on for me then just TN.

I sent you a friend request and I am online right now if you want to chat. Or send a message anytime!

Jane

atashkade said:

Thanks Jane for many useful information. Your case offers many similarities to mine and would be a good reference to follow as a path to dealing with the issues I have.

I have not seen Dr. Watson and would be good to try visiting him. I am trying to get to Dr. Hodaie which is a TN specialist in Toronto, which has a 10 months waiting period. I am going through my own neurologist first to get to him. I will mention Dr. Watson name to him when I see him first in January and hopefully get his help.

My own neurologist is clueless about this problem and thinks I must be dreaming these pains.

I was at a facial pain conference in NY last month. There were many useful science offered in that conference that helped me to understand the origin of the pain and what it is about. However, majority of discussion and research was on TN1, which did not help me in particular. When asking about Gamma Ray option they all said it can only be applied to TN1.

I have tried many of the medication you named. My issue with medication is that I am a computer engineer that requires focus and staring at monitor. These drugs all take a toll on me and make me very tiered. So I have the option of dealing with the pain and fatigue that comes with it or take the medication and stay drowsy and sleepy. I have decided to manage the pain and at least stay aware during the day. This off course means frequent short sleeps and lying down during the day.

Before the infection I was an executive at a computer start up with a huge potential. After the infection I slowly drifted away to become a consultant and if I project my future I think pretty soon I have to retire from this business and try to find a less intense occupations that allows me to manage my symptoms.

There is this notion of peak period of medication that was discussed in the conference. I think if there is a way to ride out the peak period of medication by taking them as an example in the middle of the night, I would not mind trying Gabapentin and ride out the peak period of it during the night to help me with in the morning. I find it that I have generally more pain in the morning than in the afternoon. It seems the combination of utilizing the facial muscles and eye muscles and gravity are all trigger points to activate the pain. By the time in the afternoon after the first relaxation I generally deal with the pain much better. So if I find a way to quiet the pain in the morning that might be a way to go forward. Do you have any suggestions?

There is a meeting of TN patients in Toronto the third Sunday of every month. I came to know it during the conference. Have you ever attended any? There is a lady from Barrie that runs the forum for it. I plan to attend in January.

If you don't mind I like to speak to you. Is there a chance we can talk?

I will do research on the procedures you mention and try to gain some insight into it. This problem has made me a neurologist and no longer need any doctors.

Thanks again for taking the time to write me the email.


Saeid

#6

Hi
have you been to a chiropractor… also a dentist … Not for teeth problem more alignment … I also suffer bruxism and have to wear night guard …
All been a godsend to me … Just a thought
Lynn

#7


Pepsilynn said:
Hi
have you been to a chiropractor... also a dentist .... Not for teeth problem more alignment ...... I also suffer bruxism and have to wear night guard ......
All been a godsend to me .... Just a thought
Lynn
#8

Hi Lynn, yes I have and now use night guards. You would not believe how many different things I have done in order to manage the symptoms. If I can name a few, they are:

  • Positive Energy courses
  • Stress management courses
  • Hypnosis to manage the pain
  • Bikram Yoga
  • Regular Yoga
  • Chinese Herbs
  • Indian Herbs
  • Acupuncture
  • Chirpractor
  • Message therapy
  • Osteopath

Did I miss anything else. This is an extremely rare case that Auditory, Vestibular, Trigeminal nerves are damaged to some extend. I believe my auditory nerve is damaged the most as I get crazy Tinnitus that drives me up the wall. Next is the Trigeminal that spreads the numbness and pain across V1 and V2 branches. The last is the Vestibular that when both other nerves are active causes me dizziness. So I am open to any suggestion how to proceed with this huge problem with multiple unknows.

Regards,

#9

Oh dear I’m so sorry … It’s difficult enough when you know the cause and can deal with it but looks like you’ve tried so many things… Do you ever get remission?
Love and light Lynn

#10

Are there any specific movements which bring on the dizziness, or is generalised dizziness? I just wondered as I know of someone who has nerve damage caused by Eagles Syndrome, and he's been referred for vestibular rehab/ physiotherapy with exercises to do which have helped him a bit. There's a link to some info on it : http://vestibular.org/understanding-vestibular-disorders/treatment/vestibular-home-therapy - sorry if you've already tried this, it sounds as though you've pretty much thought of everything to try to help yourself so far!

#11



Pepsilynn said:

Oh dear I'm so sorry ..... It's difficult enough when you know the cause and can deal with it but looks like you've tried so many things.... Do you ever get remission?
Love and light Lynn
I get the remission while laying down. I think another trigger point in my case is gravity. Gravity causes my jaws to pull down the muscles in my temples and consequently acts as a trigger point to the Trigeminal pain. So when I sleep or laydown I tend to have less of all of them, except for Tinnitus which has no mercy about being up or down.
My attacks are usually between 1 - 2 hours and goes away for a couple of hours. That might be because I tend to laydown and rest in between the attacks. Other than that I wrestle with it all day long.
#12



Jules said:

Are there any specific movements which bring on the dizziness, or is generalised dizziness? I just wondered as I know of someone who has nerve damage caused by Eagles Syndrome, and he's been referred for vestibular rehab/ physiotherapy with exercises to do which have helped him a bit. There's a link to some info on it : http://vestibular.org/understanding-vestibular-disorders/treatment/... - sorry if you've already tried this, it sounds as though you've pretty much thought of everything to try to help yourself so far!

I think dizziness is the function of what you do to drive the Trigeminal pain. As I am a computer engineer I have to stair at monitors early on morning. I am on the side that by using my eye muscles, I trigger the pain which in turn stiffens my head muscles and that causes dizziness. I had Vestibular nerve damage because of inner ear infection which lasted 4 years, but the last two years all the tests are coming normal for the Vestibular nerve so my guess is due to the work I do and not anything internal.

believe it or not recently I have started using Robaxisal, extra strength, off the counter drug and it seems to help a bit with relaxing the face muscles. I also take Serc which helps with stabilizing dizziness. The last thing is if anyone can recommend a herbal medication to calm nerves, then I think the combination can help me to manage the pain. etc.

Regards,

#13

Valarian root is where Valium comes from. It can be used to make tea. Atashkade, I like the way you think! It is my opinion that expecting the same people that gave us Vioxx, add rat poison to our water as Hitler did at the Camps and put Agent Orange on and IN our food is asinie at best and fatal at worst.



For over 10 years I was a massage therapist. One patient, a 'Mrs. Jane Doe Smith 'had the 5th Cervical nerve root SEVERED by a surgeon. Cut in half, completely. Two facts came to mind while figuring a treatment plan. #1: THE BODY, GIVEN TIME AND OPPORTUNITY, WILL HEAL ITSELF. #2: WE BUILD NEURO PATHWAYS FROM FREE CELLS AND CELLULAR MEMORY IS PROVEN.

Immediately, I took my theory to the chiropractor with whom I worked. The conversation went something like this:

“Hey Doc, #1 & #2 are true, correct?”

(Doc) “Of course.”

“So really, there is no reason C4 and C6 can’t branch off and reconnect to the loose end of C5 and take over these functions, right?”

(Doc) "Absolutely not! The body does not work that way! Do not give this poor woman any such false hope! Our care for her is palliative only!"



However, (I may as well be honest here) the voices in my head insisted I was correct. LOGIC agreed. Add to the mix the patient had a very strong faith in God, believing God to be the archetect of all matter, creater of Heaven and Earth and therefor, maestro of every molecule in existence. Against Dr’s orders I attempted the ‘impossible’.



There were fights. I was in jeapordy of losing everything. I gave the patient the option under oath of secrecy, to attempt my theory. Much of the work was not pleasant. Waking an entire nerve bundle from the spine out would be excruciating should we prove successful. She jumped in with both feet. Hope is some powerful shit (remember that, use it).



Sometime later, a patient presented with a similar complaint. The conversation went something like this:

(Doc) “She did well during adjustment, really this is up to you.”

“How’s that Doc? What am I supposed to do with this? Palliative care?”

(Doc) “Remember patient Jane Doe Smith?”

“Yes”

(Doc, nonchalantly) "Just do that."



Patient Jane Doe Smith had been in a car wreck and recieved an MRI. This diagnostic imagery proved that the repetitive work, mind tricks and creative visualization of streams and tributaries, budding trees, infants repeating motions in conjunction with diligent home care and exercise had stimulated dual neuropathways to branch off of the nerve bundles immediately superior and inferior to the severed root stem and connect to the severed section of that root bundle.



Bear in mind, to date, I have experienced only one 2 hour ‘episode’ of TN1 and I’m guessing the almost constant bizzare burning tongue and / or tooth discomfort, cheek twitch with pain §, tip of chin P, tight, over stretched sensations, numb front teeth and God damned fear constitute TN2 with an onset of only one month ago. The TN1 stuff started about a week ago and I’ve had several mini episodes daily but they haven’t been shit compared to that first writhing in P, unable to communicate or find any comfort attack so I’m pretty new to this.



One thing that has seemed to help keep the looming episodes at bay has been extreme hard labor. At first flash of sharp, shooting, stabbing electric P, I am up and at it like a mad woman. Splitting wood, clearing land, moving furniture, you name it, I jump on it and push it to endorphin level ASAP. The drugs my body makes are what evil Big Pharma attempts to duplicate. Of course, Milk Thistle and Saw Palmetto are indicated as constant production of these chemicals can strain one’s liver but liver cells regenerate and the only other thing that seems 100% effective are lead biscuits so my liver is going to have to heel and toe.



Meanwhile, I have been using pure lavender oil topically and plan to get some fresh lavender to add to salads and pasta dishes, maybe breads too. Lavender shuts nerves up. The chemist that discovered this had knocked over his bunson burner and caught his hand on fire. The largest closest vat of liquid was lavender oil, he was a perfumer. Quickly he submerged his hand extinguishing the flames, marveling at his speedy response, he believed he had avoided any tissue damage. That is until he attempted to extract his hand from the liquid which resulted in absolute agony as he was in fact badly burned! Shoving his hand back into the fragrant elixir again quelched the engulfing pain… Lavender it is said is antiseptic and unlike most essential oils may be used full strength directly on the skin, even near the eyes with no adverse consequences. (Just be sure it is pure lavender and not lavendum it’s cheap, mostly worthless copycat scent.)



Best of luck, I know you can heal yourself. Your body is hands down, the most amazing machine on this planet.

~Kelli

#14

Kelli, I can only say Hallelujah, such a fantastic email to read. I keep this email with me and would read it over an over. During my problems in the last 10 years one thing has been proven to me, and that is, medical industry and doctors are simply instruments of the big pharma. The issue we are dealing with goes to the core of our body, requiring deep understanding of the intricacies of many complicated parts. I took medications for over 6 years and simply differed the problem, during which I could have really changed the course of my healing process. One day couple of years ago, I decided to quit all medications and start listening to my body and signales it gives. Since then I have been able to overcome many issues at hand and improve my health and dealing with such a complicated matter. It would be a long way to go with so many nerves playing their own symphony, and I must become a master maestro to be able to make them work in tandem again. But as you said body and brain are the best to final the best path to recovery. The issue of faith and spirituality is also a great addition to this mix. The stronger your spirituality the more your body will attempt the healing process. I will go ahead with your recommendation of Valarian root. I remember trying it long time ago with cautious approach. Gaba is also another herbal root that seems to be on the agenda with helping to calm nerves.

Let's keep each other informed of these try outs and find a way to inform others that this problem is not solvable with medications and big pharma path.


Regards,

#15

Hello Kelli and Atashkade,I too am like you people…I read my body for signs and signals and act as to what is telling me…well I try to!!I often fail especially when I have a lot on and get stressed and tired.Then the pain really can set in! Look forward to hearing from you both.

#16

Ditto Eileen! Do ya’ll know if there is a homeopathic group or Pharmafree alternative group? If not, should be!

#17

Hey! My ‘voices’ finally piped up. (Took another episode - still kicking!!!)
http://www.lifeextension.com/magazine/2007/10/nu_lipoic_acid/page-01
They whispered lipoic acid and voila! Looks smart.

Also, the lavender oil works best if you ‘huff’ it. (Breathe in through nose and mouth at same time… No help for exhales but inspirations are more better.




atashkade said:

Kelli, I can only say Hallelujah, such a fantastic email to read. I keep this email with me and would read it over an over. During my problems in the last 10 years one thing has been proven to me, and that is, medical industry and doctors are simply instruments of the big pharma. The issue we are dealing with goes to the core of our body, requiring deep understanding of the intricacies of many complicated parts. I took medications for over 6 years and simply differed the problem, during which I could have really changed the course of my healing process. One day couple of years ago, I decided to quit all medications and start listening to my body and signales it gives. Since then I have been able to overcome many issues at hand and improve my health and dealing with such a complicated matter. It would be a long way to go with so many nerves playing their own symphony, and I must become a master maestro to be able to make them work in tandem again. But as you said body and brain are the best to final the best path to recovery. The issue of faith and spirituality is also a great addition to this mix. The stronger your spirituality the more your body will attempt the healing process. I will go ahead with your recommendation of Valarian root. I remember trying it long time ago with cautious approach. Gaba is also another herbal root that seems to be on the agenda with helping to calm nerves.

Let’s keep each other informed of these try outs and find a way to inform others that this problem is not solvable with medications and big pharma path.


Regards,

#18



KilleR said:

Ditto Eileen! Do ya'll know if there is a homeopathic group or Pharmafree alternative group? If not, should be!
I agree Kille, we need a homeopath or alternative group so that everyone can express their own unique of dealing with this.
I was at the Facial Pain conference in NY in October and asked the top neurologist about alternative medicine and procedures. I must say they were all clueless and did not want to give any opinion outside of medications and big pharma road map. It kind of turned me off.
Other things I have tried and made a difference are incense sticks. Both Lavender and Opium Incense are useful tools. I also have found that red light are calming and makes the environment very friendly.
I also have tried roasted cannabis seeds and they seem to help. Although they are crunchy and you have to chew with the side that is not in pain. I wonder if anyone knows if there a raw unroasted Cannabis seeds in any health food store?
Again, this is an excellent discussion and we should come up with a dummy book of dealing with TN for our own sake.
Regards,
#19

What about cannabis oil? The lavender does help. I use essential oil and while topically the jury is out, breathing the fumes does take the edge off (as long as you are inhaling!)




atashkade said:



KilleR said:

Ditto Eileen! Do ya’ll know if there is a homeopathic group or Pharmafree alternative group? If not, should be!
I agree Kille, we need a homeopath or alternative group so that everyone can express their own unique of dealing with this.
I was at the Facial Pain conference in NY in October and asked the top neurologist about alternative medicine and procedures. I must say they were all clueless and did not want to give any opinion outside of medications and big pharma road map. It kind of turned me off.
Other things I have tried and made a difference are incense sticks. Both Lavender and Opium Incense are useful tools. I also have found that red light are calming and makes the environment very friendly.
I also have tried roasted cannabis seeds and they seem to help. Although they are crunchy and you have to chew with the side that is not in pain. I wonder if anyone knows if there a raw unroasted Cannabis seeds in any health food store?
Again, this is an excellent discussion and we should come up with a dummy book of dealing with TN for our own sake.
Regards,
#20

There is a complementary therapy group if you want to join that, or you can start your own group- just get in touch woth one of the mods

KilleR said:

Ditto Eileen! Do ya'll know if there is a homeopathic group or Pharmafree alternative group? If not, should be!