Would a Herpes Zoster virus cause atypical TN and other cranial neuropathies?

General General TN & GPN (Old Site)
21

I guess I'm confused. Jennifer said about HPN that her doctor said that the shingles vaccine would not rid her of the damage and pain done to the nerve by the virus. Does that mean that the damage is done already and so the tn will probably keep acting up regardless of an antiviral?

"I had shingles 20 years ago (my 2nd bout was 2 months ago). He believes the first outbreak set the stage for the damage to the Trigeminal root. He said that if I wanted I could get the shingles vaccine now and pay out if pocket for it since I am under 60,but that all that it would do is keep shingles from flaring up as frequently. It will not rid me of the damage and pain done by the virus."

So in other words, the trigeminal nerve is damaged from HPN but not compressed, so decompression surgery is of no help. And it's not permanently damaged. And an antiviral is only effective when you use it within two days after a shingle outbreak. Am I sort of understanding it now?

Also Red, I looked up torticollis, and that's it, Eureka, that is what happens with my tn attacks.

Thank you, Julie

22


Collette,

The Shingles Vaccine may assist y0ur body to resist the re-emergence of Shingles... but it won't offer any kind of repair for actual nerve damage itself, if you have such damage. Your nerves may settle down and do some degree of self-repair, if the majority of the damage is to the external myelin layer.


collette said:

Interesting -- I wonder if getting the shingles vaccine would eliminate other types of nerve damage. I also had shingles over 20 years ago on my back shoulders. I will ask my neurologist about this next month and let you know if he says anything worth adding.

23

Jujubeee, you do seem to be getting the overall picture, though there are a couple of nuances I'd like to suggest.

HPN damage is generally not permanent, and HPN is quite distinct from typical TN. If I am to trust what I read in medical literature, not many cases of TN actually BEGIN with a case of HPN and then become permanent. I can't say that no cases of TN begin this way, but it is certainly not the majority. Most cases of classic or Type I TN are associated with a vascular compression in the region close to the brain stem.

On the other hand, if you already have TN and then get additional pain from PHN due to Shingles, the usual course of the PHN pain is that it will fade out over time, and you will find yourself dealing with pretty much the same TN condition that you had before Shingles. That TN can then be treated in much the same way it would have been if Post Herpetic Neuralgia hadn't been added to the mix.

Also, re the Torticullis: that's a condition which you should have explicitly evaluated when you next see your neurologist.

Regards, Red


jujubeee said:

I guess I'm confused. Jennifer said about HPN that her doctor said that the shingles vaccine would not rid her of the damage and pain done to the nerve by the virus. Does that mean that the damage is done already and so the tn will probably keep acting up regardless of an antiviral?

[deletion of previous comment]

So in other words, the trigeminal nerve is damaged from HPN but not compressed, so decompression surgery is of no help. And it's not permanently damaged. And an antiviral is only effective when you use it within two days after a shingle outbreak. Am I sort of understanding it now?

Also Red, I looked up torticollis, and that's it, Eureka, that is what happens with my tn attacks.

Thank you, Julie

24

Jujubeee - I asked my dr the same question. Is this reAlly Trigeminal neuralgia and is it permanent - his answer is yes. My Trigeminal neuralgia was caused by the herpatic virus. In his words I’am at the tip of the iceberg with this.

25

Well Red, I just don't know where I fit in. I'm getting there though.

I never had shingles. It started with TN on one side. I then got it in my ear on the other side.

I had an outbreak of cold sores herpes simplex 1 right before the last GN attack. I had a sore in that same ear. I never had one in my ear before but I get hsv cold sores every 4 months, a pretty good outbreak each time. This one combined itself with a vascular lesion on my face. Thanks lupus.

Before the first TN attack I had some very sparse weird pox. They didn't look anything like shingles but all I had was pics on my phone I showed my rheumatologist. He said it must be shingles and it caused the TN.

I had the weird rash again up and down my legs, sparse looking pox. VERY sparse. Looked nothing like shingles. Showed neurologist and two other docs. No way shingles I was told. During this one I experienced muscle weakness in my legs and hips (that is where the rash was) for several days. I saw my rheumie. He said it looked like I had a coxsackie virus in my nerves. No other symptoms (no runny nose or cold symptoms) Weeks before that I had something similar to a lupus flare, low grade fever, malice, weight loss (15 lbs in 4 wks).

That is my story. I take tegretol and pain meds. I was already on neurontin for severe peripheral neuropathy caused by lupus. Believe you me, it did nothing to help the pain. The tegretol seems to help although I have no idea if it really is or if the attacks just don't include as many cranial nerves as they did the first time.

I seem to be getting worse. The attacks are getting closer and closer together. (like labor pains, lol) My pn is also worse than it's ever been and I've had it for 15 years. When I described the torticollis to my neurologist that I had during the tn attack he did raise an eyebrow but I didn't know why. I thought it was just part of the TN nightmare. I thought everyone had it when they had a tn attack. I only get the "sensitivity" on my cheek and jaw after an attack. During that time any trigger like wind or brushing my teeth will bring on another and they'll come in clusters. (like for about a week) then I'll be left with a twitch under my eye that gradually gets better until only I can feel it and then it'll go away until the whole thing happens again. I'm grateful I don't have constant pain although I pretty much worry and fear about what and when is going to happen and if that torticollis is going to happen again., and I'm going to lose control of my entire head and face.

I suppose you could say that I had something going on earlier, I had burning mouth syndrome about 8 mo prior to my first TN attack (no rash then), and it lasted over a month. I've had distortion in smell where everything smelled like copper/metallic and I couldn't stand it but at least it wasn't painful. That was after the tn and gn attacks started though. I have had headaches but don't know if those were cranial nerve related. I had a weird pocket of sensitivity this last time I had the gn attack (right before it) behind my ear in the back of my head. It hurt when I touched it and felt swollen. I have no idea what that was or if it was related either. The week before my first tn attack my jaw muscles felt "tight". I remember thinking I felt like I was losing weight because my face was "pulled back". Right before or at the same time as the gn attack (the tn in my opposite ear) I had sensitivity on the top of my head. It felt like my hair hurt, like when you tie it back way too tight. It lasted about 5 days. I thought I was getting lupus discoid lesions on my head, but I didn't get them.

My goal is to keep things from getting worse, find the problem, possibly treat it. Keep quality in my life. I'm married w children. I work from home now. I applied for SSDI since my lupus symptoms make it too difficult to work.

Thank you everyone. This TN is quite a trip, isn't it? I never in a million years thought this would or could happen to a person. I'm sorry for every sufferer here.

Sincerely, Julie

I contacted the tna and they suggested a local neurosurgeon who specializes in neuroradiology.

Red, you've been so kind, thank you and Jennifer, you have no idea how much your experience helps me. I'm so glad you posted today! :) Love Julie

26

Red, please read this, I know what's wrong with my cranial nerves and why I have trigeminal neuralgia with my lupus.

Something Red said about the fact that I had the vagus nerve also called auxiliary nerve (cranial nerve IX) involved in my tn attacks set me off. And something my fellow lupie said about degenerative discs and lupus triggered a train of thought for me that led to me finding the answer I've been looking for a LONG time now about my cranial neuralgias. I found that the condition I have during tn attacks are called torticollis spasms. Also known as "wry neck". When I researched this I found the connection I've been looking for.

Wry neck and torticollis spasms originated in cranial nerve IX are sometimes caused by damage to cervical discs C1 thru C5. Oh Boy Sheila, do I ever have problems THERE. I have osteoarthritis, degenerative discs, bony spurs, caused by INFLAMMATION in the cervical connective tissue from LUPUS. I found the smoking gun. Trigeminal Neuralgia can be caused by severe osteoarthritis in your cervical area C1 -C5.

That's it! Eureka and Voila! It's probably not blood vessel inflammation or a virus. So that's why it's intermittent and that's why it involves so many cranial nerves and causes so many neuralgias. I think I can treated now and possibly benefit from perhaps botox, and other treatments.

But I found a cause and effect. I will be talking to my rheum, neuro and pain mgmt docs in the coming weeks and getting my care coordinated so we're all on the same wavelength. This is huge. I've had really bad neck problems for years now. Really bad.
I bet a new set of xrays will be all I need, maybe a few new MRI's to confirm. My pain mgmt doc might not even need them since he's been doing the radiofrequencies and can SEE the mess back there.

Here is a highlight of my research:
The discs that form the cervical area are made from connective tissue, which undergoes gradual disc degeneration-or spondylolysis as it is formally called- due to small injuries that do not represent a great discomfort, but over time may provoke more serious injuries that do cause immediate pain and dysfunction.

And how does this process occurs? As we grow old, our discs start loosing the water and its sock absorbing ability. The first thing that happens in a neck disc is the appearance of tears in the outer ring or annulus with no visible symptoms at all and gets healed forming scar tissue. Scar tissues are weak tissues that make the disc more prone to wear.

The continuous wearing of the disc starts reducing the gap between each vertebra, producing a collapse that affects the facet joints (bony knobs) on the back of the column. Since bones can not fit properly, there is produced a pressure eon the articular cartilage that may result in osteoarthritis.
When ache pain becomes chronic, it is referred as mechanical Wry Neck due to the fact that our neck gets worse every time we move our neck, which is possible by means of the mechanical parts of the neck that allow the neck to twist and bend. This pain seems to be originated by the inflammation of the facet joints and the disc degeneration. When the inflammation grows, our neck muscles respond with spasms in an attempt to stop the movement of the cervical area.

You can realize you are suffering from a cervical condition if you present:

- Moderate to acute Wry Neck
- Headaches
- Numbness, pain and slow reflexes in shoulders, arms and hands
- Decrease motion of neck, numbness
- Walking problems

Nevertheless, it is a physician the ones who can establish a secure diagnose of your condition after a series of examinations that include a physical examination, X-rays, Magnetic Resonance Imaging (MRI), Computer Assisted Tomography (CAT Scan), Electromyogram (EMG), Myelography (Myelogram), Bone Scan and laboratory tests.
http://www.painneck.com/cervical-spinal-nerves
Motor innervation occurs through the glossopharyngeal nerve (IX), the vagus nerve (X), the allied spinal accessory nerve (XI), and the recurrent laryngeal nerve. Sensory innervation in the oropharynx section occurs as a result of the glossopharyngeal nerve (IX), with the vagus nerve (X) providing for the nasopharynx and the hypopharynx/laryngopharynx. As the sensory fibers from the glossopharyngeal nerve (IX) and the vagus nerve (X) enter the brainstem they are bundled together and terminate in the trigeminal nucleus. The trigeminal nerve (CN5) is responsible for creating a complete sensory map of the face and mouth with pain, touch, temperature and position signals all processed through this nerve. Accordingly, trigeminal neuralgia as a result of disc herniation, disc bulging, spondylolisthesis and spinal kyphosis or slippage, amongst other conditions, can be responsible for serious problems with the innervation of the face, jaw, and pharynx. Facial pain, jaw pain, neck pain, problems with chewing and swallowing, a sensation of a lump in the throat, and muscular spasms in the face, jaw, and neck can all result from compression of the cervical spinal nerves.

Cervical Spinal Nerves

The hypopharynx’s uppermost point is at the hyoid bone, which lies at approximately the same level as the 4th-6th cervical vertebrae. The pharynx is innervated by a number of nerves with their roots in the cervical spine. Damage to these nerve pathways can result in problems with the correct functioning of all three sections with ramifications for proper control of the separation of the larynx and oesophagus. Faults in innervation, both motor and sensory, in this area may prevent the two pathways functioning properly.


I just got home from seeing my pain management doctor who does radiofrequency ablations for me in my C1-C5 area. He made the comment two weeks ago when he did the right side that this is the worst my neck (degenerative discs, bony spurs, herniations) has ever looked and he can't believe how bad it is. That comment popped up in my head when I researched the torticollis spasms and tn attacks and the relationship between them and lupus. I spoke to him today when he did the left side radiofrequency.
I asked him if he thought the condition of my cervical C1 to C5 was bad enough to cause my trigeminal neuralgia and other cranial neuralgias. He raised an eyebrow. Pretty HIGH. It COULD be, indeed it could be, he said.

That's my answer. Whether there's also a virus involved in there causing more inflammation or lupus has inflammed my blood vessels in the area of the nerve ganglion may or may not be true, it may just aggravate the condition, but I have my answer. I have had SEVERE problems in my neck for years now. I thought it was osteoarthritis from birthdays. Then I found out yesterday that herniated discs are made out of CONNECTIVE TISSUE. OMG. OMG. OMG.

Doh! I am so happy! What do you think, plausible? Does it FIT?

Respectfully Julie















27

Forgive me for my ignorance as I have a hard time even reading right now never mind comprehending things from Tegritol. I have had neck problems for years too and my MRI showed cervical spondylosis but no disc herniation in C4/5, C5/6 and C6/7. I found this site when googling the wry neck and the trigger point signs and symptoms relate to me. What does all of this mean and how is it treated? My mind is very foggy and I have a difficult time -- I used to do financial statements for 4 facilities and now I can barely read a few pages.

http://www.webmanmed.com/disorders/disorders_files/musclgd/antneck/11679703.html

jujubeee said:

Red, please read this, I know what's wrong with my cranial nerves and why I have trigeminal neuralgia with my lupus.

Something Red said about the fact that I had the vagus nerve also called auxiliary nerve (cranial nerve IX) involved in my tn attacks set me off. And something my fellow lupie said about degenerative discs and lupus triggered a train of thought for me that led to me finding the answer I've been looking for a LONG time now about my cranial neuralgias. I found that the condition I have during tn attacks are called torticollis spasms. Also known as "wry neck". When I researched this I found the connection I've been looking for.

Wry neck and torticollis spasms originated in cranial nerve IX are sometimes caused by damage to cervical discs C1 thru C5. Oh Boy Sheila, do I ever have problems THERE. I have osteoarthritis, degenerative discs, bony spurs, caused by INFLAMMATION in the cervical connective tissue from LUPUS. I found the smoking gun. Trigeminal Neuralgia can be caused by severe osteoarthritis in your cervical area C1 -C5.

That's it! Eureka and Voila! It's probably not blood vessel inflammation or a virus. So that's why it's intermittent and that's why it involves so many cranial nerves and causes so many neuralgias. I think I can treated now and possibly benefit from perhaps botox, and other treatments.

But I found a cause and effect. I will be talking to my rheum, neuro and pain mgmt docs in the coming weeks and getting my care coordinated so we're all on the same wavelength. This is huge. I've had really bad neck problems for years now. Really bad.
I bet a new set of xrays will be all I need, maybe a few new MRI's to confirm. My pain mgmt doc might not even need them since he's been doing the radiofrequencies and can SEE the mess back there.

Here is a highlight of my research:
The discs that form the cervical area are made from connective tissue, which undergoes gradual disc degeneration-or spondylolysis as it is formally called- due to small injuries that do not represent a great discomfort, but over time may provoke more serious injuries that do cause immediate pain and dysfunction.

And how does this process occurs? As we grow old, our discs start loosing the water and its sock absorbing ability. The first thing that happens in a neck disc is the appearance of tears in the outer ring or annulus with no visible symptoms at all and gets healed forming scar tissue. Scar tissues are weak tissues that make the disc more prone to wear.

The continuous wearing of the disc starts reducing the gap between each vertebra, producing a collapse that affects the facet joints (bony knobs) on the back of the column. Since bones can not fit properly, there is produced a pressure eon the articular cartilage that may result in osteoarthritis.
When ache pain becomes chronic, it is referred as mechanical Wry Neck due to the fact that our neck gets worse every time we move our neck, which is possible by means of the mechanical parts of the neck that allow the neck to twist and bend. This pain seems to be originated by the inflammation of the facet joints and the disc degeneration. When the inflammation grows, our neck muscles respond with spasms in an attempt to stop the movement of the cervical area.

You can realize you are suffering from a cervical condition if you present:

- Moderate to acute Wry Neck
- Headaches
- Numbness, pain and slow reflexes in shoulders, arms and hands
- Decrease motion of neck, numbness
- Walking problems

Nevertheless, it is a physician the ones who can establish a secure diagnose of your condition after a series of examinations that include a physical examination, X-rays, Magnetic Resonance Imaging (MRI), Computer Assisted Tomography (CAT Scan), Electromyogram (EMG), Myelography (Myelogram), Bone Scan and laboratory tests.
http://www.painneck.com/cervical-spinal-nerves
Motor innervation occurs through the glossopharyngeal nerve (IX), the vagus nerve (X), the allied spinal accessory nerve (XI), and the recurrent laryngeal nerve. Sensory innervation in the oropharynx section occurs as a result of the glossopharyngeal nerve (IX), with the vagus nerve (X) providing for the nasopharynx and the hypopharynx/laryngopharynx. As the sensory fibers from the glossopharyngeal nerve (IX) and the vagus nerve (X) enter the brainstem they are bundled together and terminate in the trigeminal nucleus. The trigeminal nerve (CN5) is responsible for creating a complete sensory map of the face and mouth with pain, touch, temperature and position signals all processed through this nerve. Accordingly, trigeminal neuralgia as a result of disc herniation, disc bulging, spondylolisthesis and spinal kyphosis or slippage, amongst other conditions, can be responsible for serious problems with the innervation of the face, jaw, and pharynx. Facial pain, jaw pain, neck pain, problems with chewing and swallowing, a sensation of a lump in the throat, and muscular spasms in the face, jaw, and neck can all result from compression of the cervical spinal nerves.

Cervical Spinal Nerves

The hypopharynx’s uppermost point is at the hyoid bone, which lies at approximately the same level as the 4th-6th cervical vertebrae. The pharynx is innervated by a number of nerves with their roots in the cervical spine. Damage to these nerve pathways can result in problems with the correct functioning of all three sections with ramifications for proper control of the separation of the larynx and oesophagus. Faults in innervation, both motor and sensory, in this area may prevent the two pathways functioning properly.


I just got home from seeing my pain management doctor who does radiofrequency ablations for me in my C1-C5 area. He made the comment two weeks ago when he did the right side that this is the worst my neck (degenerative discs, bony spurs, herniations) has ever looked and he can't believe how bad it is. That comment popped up in my head when I researched the torticollis spasms and tn attacks and the relationship between them and lupus. I spoke to him today when he did the left side radiofrequency.
I asked him if he thought the condition of my cervical C1 to C5 was bad enough to cause my trigeminal neuralgia and other cranial neuralgias. He raised an eyebrow. Pretty HIGH. It COULD be, indeed it could be, he said.

That's my answer. Whether there's also a virus involved in there causing more inflammation or lupus has inflammed my blood vessels in the area of the nerve ganglion may or may not be true, it may just aggravate the condition, but I have my answer. I have had SEVERE problems in my neck for years now. I thought it was osteoarthritis from birthdays. Then I found out yesterday that herniated discs are made out of CONNECTIVE TISSUE. OMG. OMG. OMG.

Doh! I am so happy! What do you think, plausible? Does it FIT?

Respectfully Julie














28

I am no doctor, but this is a lot of good info. My pain has no relief. Constant pain. But it sounds like it is very possible. You might have your answer. Hooray! To bad we have to play doctor to ourselves.

jujubeee said:

Red, please read this, I know what's wrong with my cranial nerves and why I have trigeminal neuralgia with my lupus.

Something Red said about the fact that I had the vagus nerve also called auxiliary nerve (cranial nerve IX) involved in my tn attacks set me off. And something my fellow lupie said about degenerative discs and lupus triggered a train of thought for me that led to me finding the answer I've been looking for a LONG time now about my cranial neuralgias. I found that the condition I have during tn attacks are called torticollis spasms. Also known as "wry neck". When I researched this I found the connection I've been looking for.

Wry neck and torticollis spasms originated in cranial nerve IX are sometimes caused by damage to cervical discs C1 thru C5. Oh Boy Sheila, do I ever have problems THERE. I have osteoarthritis, degenerative discs, bony spurs, caused by INFLAMMATION in the cervical connective tissue from LUPUS. I found the smoking gun. Trigeminal Neuralgia can be caused by severe osteoarthritis in your cervical area C1 -C5.

That's it! Eureka and Voila! It's probably not blood vessel inflammation or a virus. So that's why it's intermittent and that's why it involves so many cranial nerves and causes so many neuralgias. I think I can treated now and possibly benefit from perhaps botox, and other treatments.

But I found a cause and effect. I will be talking to my rheum, neuro and pain mgmt docs in the coming weeks and getting my care coordinated so we're all on the same wavelength. This is huge. I've had really bad neck problems for years now. Really bad.
I bet a new set of xrays will be all I need, maybe a few new MRI's to confirm. My pain mgmt doc might not even need them since he's been doing the radiofrequencies and can SEE the mess back there.

Here is a highlight of my research:
The discs that form the cervical area are made from connective tissue, which undergoes gradual disc degeneration-or spondylolysis as it is formally called- due to small injuries that do not represent a great discomfort, but over time may provoke more serious injuries that do cause immediate pain and dysfunction.

And how does this process occurs? As we grow old, our discs start loosing the water and its sock absorbing ability. The first thing that happens in a neck disc is the appearance of tears in the outer ring or annulus with no visible symptoms at all and gets healed forming scar tissue. Scar tissues are weak tissues that make the disc more prone to wear.

The continuous wearing of the disc starts reducing the gap between each vertebra, producing a collapse that affects the facet joints (bony knobs) on the back of the column. Since bones can not fit properly, there is produced a pressure eon the articular cartilage that may result in osteoarthritis.
When ache pain becomes chronic, it is referred as mechanical Wry Neck due to the fact that our neck gets worse every time we move our neck, which is possible by means of the mechanical parts of the neck that allow the neck to twist and bend. This pain seems to be originated by the inflammation of the facet joints and the disc degeneration. When the inflammation grows, our neck muscles respond with spasms in an attempt to stop the movement of the cervical area.

You can realize you are suffering from a cervical condition if you present:

- Moderate to acute Wry Neck
- Headaches
- Numbness, pain and slow reflexes in shoulders, arms and hands
- Decrease motion of neck, numbness
- Walking problems

Nevertheless, it is a physician the ones who can establish a secure diagnose of your condition after a series of examinations that include a physical examination, X-rays, Magnetic Resonance Imaging (MRI), Computer Assisted Tomography (CAT Scan), Electromyogram (EMG), Myelography (Myelogram), Bone Scan and laboratory tests.
http://www.painneck.com/cervical-spinal-nerves
Motor innervation occurs through the glossopharyngeal nerve (IX), the vagus nerve (X), the allied spinal accessory nerve (XI), and the recurrent laryngeal nerve. Sensory innervation in the oropharynx section occurs as a result of the glossopharyngeal nerve (IX), with the vagus nerve (X) providing for the nasopharynx and the hypopharynx/laryngopharynx. As the sensory fibers from the glossopharyngeal nerve (IX) and the vagus nerve (X) enter the brainstem they are bundled together and terminate in the trigeminal nucleus. The trigeminal nerve (CN5) is responsible for creating a complete sensory map of the face and mouth with pain, touch, temperature and position signals all processed through this nerve. Accordingly, trigeminal neuralgia as a result of disc herniation, disc bulging, spondylolisthesis and spinal kyphosis or slippage, amongst other conditions, can be responsible for serious problems with the innervation of the face, jaw, and pharynx. Facial pain, jaw pain, neck pain, problems with chewing and swallowing, a sensation of a lump in the throat, and muscular spasms in the face, jaw, and neck can all result from compression of the cervical spinal nerves.

Cervical Spinal Nerves

The hypopharynx’s uppermost point is at the hyoid bone, which lies at approximately the same level as the 4th-6th cervical vertebrae. The pharynx is innervated by a number of nerves with their roots in the cervical spine. Damage to these nerve pathways can result in problems with the correct functioning of all three sections with ramifications for proper control of the separation of the larynx and oesophagus. Faults in innervation, both motor and sensory, in this area may prevent the two pathways functioning properly.


I just got home from seeing my pain management doctor who does radiofrequency ablations for me in my C1-C5 area. He made the comment two weeks ago when he did the right side that this is the worst my neck (degenerative discs, bony spurs, herniations) has ever looked and he can't believe how bad it is. That comment popped up in my head when I researched the torticollis spasms and tn attacks and the relationship between them and lupus. I spoke to him today when he did the left side radiofrequency.
I asked him if he thought the condition of my cervical C1 to C5 was bad enough to cause my trigeminal neuralgia and other cranial neuralgias. He raised an eyebrow. Pretty HIGH. It COULD be, indeed it could be, he said.

That's my answer. Whether there's also a virus involved in there causing more inflammation or lupus has inflammed my blood vessels in the area of the nerve ganglion may or may not be true, it may just aggravate the condition, but I have my answer. I have had SEVERE problems in my neck for years now. I thought it was osteoarthritis from birthdays. Then I found out yesterday that herniated discs are made out of CONNECTIVE TISSUE. OMG. OMG. OMG.

Doh! I am so happy! What do you think, plausible? Does it FIT?

Respectfully Julie














29


Julie, would you mind starting a new discussion or even a group with this info? It is hidden here. Maybe you can call it something like "Neck problems can cause TN, ATN". This is huge! Really, after 16 years I think you found my cause, so I'm sure others could be helped too.

love, Sheila

30

I sure will Sheila. I absolutely will. I keep hearing how unusual our cases are when I talk about them with other groups (like the hfs yahoo group) hemofacial spasm.

Seems to me the key is to concentrate on the torticollis spasms and work our way up from there (literally) LOL

Once they hear lupus, we get bombarded with lupus did this and lupus did that. Noone thinks of the obvious. I know our necks, esp the cervical C1 - C5 are really really messed up and those spinal nerves are right under the brain stem and pretty close to the cranial nerve ganglions.

You should have seen my doctor's face when I outright asked him while he was looking at one of those monitors that see inside your neck, if my damage in there was enough to cause cranial nerve problems. His eyes got superwide. Yes, he said. Yes. Since the torticollis spasms are caused by cranial nerve Xl, I think we have our answer. If it wasn't those horrid spasms during my tn attack I never would have known. I thought all TN attacks had that with them. How would I know they didn't?

I definitely want to do something to get our stories out. I'm going to contact the torticollis association and lupus foundation also.

Love Ya. I see my rheumie in a couple weeks and my neuro next week and a neurosurgeon next week too. I think a new place to keep everyone posted on our journey and progress is definitely a great idea.

31


Thanks Julie,! This info needs more publicity.

I don't have torticollis, I have a different kind of spasm, but it's good that you had it, so you could find this info for so many others. When I look up torticollis, it says the head tilts one way and the chin tilts the other. With mine and a couple of others I've met here, my spasms are in my face and nack and all go in the same direction toward the side where the TN is. It might be interesting to find out how many's spasms are like yours or different. You might have to describe what torticollis is. Few know, and when pain, they are not ready to look it up.

Blessings, Sheila

32

Yeah your right Sheila. During the TN attack (head in vice on left side), teeth felt like they were being pulled through my jaw inside out, and my cheek and eye were pulled and twitching, during this I had the zapping of the tn, AND my neck then pulled as far left as it would go (like a charlie horse in my neck), it was atrocious and scary and totally abnormal and extremely painful. I couldn't move it and then it twitched and twitched and finally let up.

I thought all tn'ers got this.

I"m sure glad I did though, as like you said it may be the entire reason I realized my damage in the cervical area was found out.

33

Always excited when I find new info. Thanks to Julie and all of you for the research you do. I haven't had time to read all the reply's and i have to get kids to bed, but I have had cold sores here and there for as long as I can remember. My neurologist also sent me to a rheumatologist. I can't remember exactly but I think it was an elevated ANA that i had. Nothing they could pin point or give a name to yet, just said we need to keep an eye on it and check blood work again in a few months. About a year ago I was eating raw/whole foods only and went the whole time without a mouth sore. Used to be whenever I would bite my lip or cheek I would always get a sore there. But not when I was eating good. I dropped the ball and went back to eating poorly and started getting mouth sores again. I really think somehow the good food I was eating kept the virus thing at bay. I have been going to a physical therapist that has helped a lot with my TN pain, I am excited to fill everyone in on that soon. But I am still trying to figure out what lies at the very beginning of the chain of events that lead to my TN. Will be reading more about this virus thingy.