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Dvm

HSV 1 Oral Herpes Issues

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Dvm

I'm new to this page. Looking to hear stories of others w my issues & hope to find support. I hv had cold sores all my life. But 2 yrs ago I had a flare w 1 on my lip & 1 in ea nostril.  Then the pain on my right side of the face started, along w numbness,  dizzy, balance issues and a weird eye twitch and sensation. After countless Dr appts and misdiagnoses, research led me to find that the herpes lives in the face in the ganglion root & when it flares can cause all my symptoms and it happened to permanently damage my trigeminal nerve. After going to numerous Dr, neurologist,  having MRI etc. My diagnosis was confirmed and although I dont like to take meds, I started on Gabapentin.  2 yrs I suffered and was miserable,  near suicidal and hopeless,  but I kept trying Drs and a friend had me tried an osteopath.  Who started doing small manipulation on my scalp and neck, within a few days I progression of me feeling better started. Within a month I was off the meds and feeling amazing, I also found a new massage therapist that I worked w and that helped along w an accupuncturist.Then after a few months a trigger of cbd w menthol set me off for about a week then felt great again & then the accupuncture gal used tiger balm (w menthol) and that set me off.  Good again and then yesterday some stress caused a flare of about 6 mouth sores on my roof of my mouth, woke up to massive vertigo.  Started valtrex and talked to my Dr about just staying on Valtrex daily. I found this page & hope to hear others experiences & maybe mine can shed light on yours. 

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WilsoInAus

@Dvm you can be assured that HSV is not the cause of these issues. As you have found, it’s likely a spinal issue and it sounds like you have found some help. Stick with that.

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Dvm

Thx so much. However HSV can affect the trigeminal nerve/from post herpetic neuralgia and can actually cause all these symptoms. Some people, once affected can have short term symptoms,  while others have sporadic flare ups and some are permanently affected. Gabapentin for trigeminal neuralgia, prescribed by my neurologist, did help me for some time,  but I'm glad to be off it.  Hope my post helps someone w similar issues who havent gotten help from primary care Dr.

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blurneworder
7 minutes ago, WilsoInAus said:

@Dvm you can be assured that HSV is not the cause of these issues. As you have found, it’s likely a spinal issue and it sounds like you have found some help. Stick with that.

@Dvm, he says this to almost everyone.  Best ignore his bad advice 

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Dvm
2 minutes ago, blurneworder said:

@Dvm, he says this to almost everyone.  Best ignore his bad advice 

Thx. 

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blurneworder
7 minutes ago, Dvm said:

Thx so much. However HSV can affect the trigeminal nerve/from post herpetic neuralgia and can actually cause all these symptoms. Some people, once affected can have short term symptoms,  while others have sporadic flare ups and some are permanently affected. Gabapentin for trigeminal neuralgia, prescribed by my neurologist, did help me for some time,  but I'm glad to be off it.  Hope my post helps someone w similar issues who havent gotten help from primary care Dr.

Did you get a doctor to diagnose these problems as HSV?

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Dvm

Yes a neurologist after my Brain MRI and very thorough consult. hsv/cold sore flares damaged the trigeminal nerve where hsv lives in the ganglion root. You can look up the trigeminal nerve and see that it affects the eyes, checks, lips and ears. The root closet to the ear and wrapped at the base of occipital can cause the dizziness and balance issues which in turn can cause brain fog. And very tight neck, due to the occipital area. Hope that helps 

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WilsoInAus
Just now, Dvm said:

Yes a neurologist after my Brain MRI and very thorough consult. hsv/cold sore flares damaged the trigeminal nerve where hsv lives in the ganglion root. You can look up the trigeminal nerve and see that it affects the eyes, checks, lips and ears. The root closet to the ear and wrapped at the base of occipital can cause the dizziness and balance issues which in turn can cause brain fog. And very tight neck, due to the occipital area. Hope that helps 

HSV-1 has never been shown to damage the trigeminal nerve. Based on what you describe, damage to the nerve may have occurred, but this is not due to HSV-1.

The varicella virus on the other hand is a possibility.

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Dvm

Thx but please stop replying to my page 

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blurneworder
7 minutes ago, Dvm said:

Yes a neurologist after my Brain MRI and very thorough consult. hsv/cold sore flares damaged the trigeminal nerve where hsv lives in the ganglion root. You can look up the trigeminal nerve and see that it affects the eyes, checks, lips and ears. The root closet to the ear and wrapped at the base of occipital can cause the dizziness and balance issues which in turn can cause brain fog. And very tight neck, due to the occipital area. Hope that helps 

I’ve had problems with those areas of my face since the month I was infected.

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WilsoInAus
4 minutes ago, Dvm said:

Thx but please stop replying to my page 

We have to ensure there is not misinformation. There is a duty of care to yourself as well as our readers.

An MRI cannot possibly detect the cause of nerve damage.

The key causes of trigeminal neuralgia include pressure from blood vessels and sheath damage, itself often from auto-immune issues. HSV-1 has never been identified as a cause of trigeminal neuralgia.

For these reasons it is dangerous to assume that HSV-1 is the cause when there are actually some serious ailments that are the likely cause and need to be addressed.

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Dvm

Unfortunately just like finding a cure, most Dr are not aware of the virus and I brought lots of Google info to my appts

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Dvm

I will not get into a debate with you, however I will clarify for others. The MRI did not show the damage, the MRI rules out MS or a brain tumor. The neurologist determined the damage to the trigeminal nerve and just like in the shingles virus which is related to hsv1, it CAN cause damage to the facial nerves is post herpetic neuralgia. As you well know, way more research needs to be done. However,  I am 100% sure the hsv1/cold sores damaged my trigeminal nerve and when I have cold sore flares I get all the symptoms of facial pain, dizzy, balance, vertigo. So good luck with whatever herpes you have and your symptoms and treatment and I hope MY story is relevant to someone else on this group. By...

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WilsoInAus
2 minutes ago, Dvm said:

I will not get into a debate with you, however I will clarify for others. The MRI did not show the damage, the MRI rules out MS or a brain tumor. The neurologist determined the damage to the trigeminal nerve and just like in the shingles virus which is related to hsv1, it CAN cause damage to the facial nerves is post herpetic neuralgia. As you well know, way more research needs to be done. However,  I am 100% sure the hsv1/cold sores damaged my trigeminal nerve and when I have cold sore flares I get all the symptoms of facial pain, dizzy, balance, vertigo. So good luck with whatever herpes you have and your symptoms and treatment and I hope MY story is relevant to someone else on this group. By...

But it is all just assumption on your part. What each of us might think as individuals doesn't count for much in the context of voluminous scientific research. You can be as sure as you like.

However it is scientific fact that HSV-1 has never been shown to damage the trigeminal nerve, not in any of the 40 billion people who have ever had it. I am not here to argue either, simply present facts like these.

What is relevant is that you are guessing. For your sake and everyone else's, do not guess. Pursue the truth.

 

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T9000
19 minutes ago, WilsoInAus said:

But it is all just assumption on your part. What each of us might think as individuals doesn't count for much in the context of voluminous scientific research. You can be as sure as you like.

However it is scientific fact that HSV-1 has never been shown to damage the trigeminal nerve, not in any of the 40 billion people who have ever had it. I am not here to argue either, simply present facts like these.

What is relevant is that you are guessing. For your sake and everyone else's, do not guess. Pursue the truth.

 

Log off the computer and and go outside. 

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blurneworder
Posted (edited)
24 minutes ago, WilsoInAus said:

But it is all just assumption on your part. What each of us might think as individuals doesn't count for much in the context of voluminous scientific research. You can be as sure as you like.

However it is scientific fact that HSV-1 has never been shown to damage the trigeminal nerve, not in any of the 40 billion people who have ever had it. I am not here to argue either, simply present facts like these.

What is relevant is that you are guessing. For your sake and everyone else's, do not guess. Pursue the truth.

 

Stop ignoring the actual experiences of people suffering from HSV.

According to your posts, nobody with HSV has problems beyond blisters. You tell people to find truth, but you can't accept it when it's in your own face.

This forum has tried to teach you what HSV is really doing to people, but your head is stuck too far up your ass.

Edited by blurneworder

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WilsoInAus
12 minutes ago, blurneworder said:

Stop ignoring the actual experiences of people suffering from HSV.

According to your posts, nobody with HSV has problems beyond blisters. You tell people to find truth, but you can't accept it when it's in your own face.

This forum has tried to teach you what HSV is really doing to people, but your head is stuck too far up your ass.

This is unacceptable, but par for the course for your participation on this website.

The only reason you post, and its always about you, is to feed your selfish need for validation that you actually have HSV-1 and its causing a multitude of symptoms. Do not pretend that you actually care about the experiences being posted about.

This website is about teaching people to search for truth regarding their herpes diagnosis. Simply because a person guesses that herpes is doing something within their body, doesn't mean that it is.

In many instances, it is a very dangerous guess. What if the experience is actually caused by a serious ailment. That's a high price to pay for having fantasism pushed upon you.

 

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blurneworder
11 minutes ago, WilsoInAus said:

This is unacceptable, but par for the course for your participation on this website.

The only reason you post, and its always about you, is to feed your selfish need for validation that you actually have HSV-1 and its causing a multitude of symptoms. Do not pretend that you actually care about the experiences being posted about.

This website is about teaching people to search for truth regarding their herpes diagnosis. Simply because a person guesses that herpes is doing something within their body, doesn't mean that it is.

In many instances, it is a very dangerous guess. What if the experience is actually caused by a serious ailment. That's a high price to pay for having fantasism pushed upon you.

 

Coming from someone who is usually wrong, this means nothing

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WilsoInAus
Just now, blurneworder said:

Coming from someone who is usually wrong, this means nothing

Usually wrong, lol 

I simply replay scientific research and opinions from experts.

Whether you think it is right or wrong is of no consequence, it simply is what it is and each person has to conclude for themselves.

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