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Occipital Neuralgia w/ Herpes

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Misunderstood
Misunderstood

Ever since I've contracted HSV2 my life has been a living hell! I've been having sharp pains all over my body , leg pains, itching sensation all over my body, and last but not least pains in the back of my head and neck which sometimes radiates to my scalp. can herpes cause this to happen? If so is it life threatening or deadly?

0 likes, 36 replies

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  • FelizCastus
    FelizCastus Misunderstood

    Posted

    Only if you develop herpes simplex encephalitis (more common with Type 1) or disseminated herpes, which are both uncommon and not what you are experiencing. I haven't heard of whole body sensations, but some people get post-herpetic neuralgia or related nerve conditions following herpes. Hopefully it will pass. Many of the nerve issues are usually temporary. How long have you been experiencing that?
    • Misunderstood
      Misunderstood FelizCastus

      Posted

      I've been experiencing this on and off for about 2 weeks but I contracted the disease in August 2015, so maybe it is post-herpetic neuralgia. Idk
    • FelizCastus
      FelizCastus Misunderstood

      Posted

      Sometimes these nerve issues develop later on, but hopefully it's just a phase. I had a couple of odd sensations after my first outbreak, but they disappeared on their own after a couple of weeks each.
    • FelizCastus
      FelizCastus

      Posted

      P.S. It's unusual for genital herpes to cause upper body nerve issues, though, so maybe it's not even herpes-related. Did you go to a doc about it?
  • Oddity
    Oddity Misunderstood

    Posted

    Hi, I have the same issues you are having.  Mine also started over the summer after I had dated someone that had H.  Not to scare you, but I saw a neurologist who had me get a with and without contrast brain MRI where small white matter lesions were found considered numerous for my age.  You may want to go see a neurologist and have an MRI.  Your symptoms are very similar to what I have and still do experience.  I still think it is all somewhat related to H, either that I contracted it and it is disseminated either from HSV1 or HSV2 or both or that the H caused the brain lesions.  This disease is not understood by a lot of medical professionals.
    • FelizCastus
      FelizCastus Oddity

      Posted

      You have no confirmation that you have HSV-2, your existing (probably oral) HSV-1 is unlikely to be the cause of the symptoms you reported in your other post, and if you truly had disseminated herpes (rare, unless you are seriously immunocompromised) with herpetic brain lesions, you would likely be in a hospital or morgue. I appreciate that you are paranoid about herpes and need final swab testing for peace of mind, but it is not helpful to spread such unfounded fears and self-diagnoses.
    • Oddity
      Oddity FelizCastus

      Posted

      I know my body and my health. I am also in the medical field. My symptoms after exposure are no coincidence. There are plenty of h forums out there with droves of people experiencing the exact same thing I am experiencing. All one has to do is Google "jama hsv-2 nueropathy". Then scroll down on the report to hsv-2 radiculopathy. This stuff is very real whether it is hsv-1 or hsv-2.

      I'm starting to wonder if you're not one of these people that works for the pharmaceutical companies or one of these boutique h clinics that has an alternative motive in these forums. The motive being trying to make people think h isn't so bad and all one needs to do is remain calm and take their meds. When in reality it is a horrible disease and finding a cure for h is more important to finding a cure for cancer. In my opinion. If my theory is correct about you then a cure would be detrimental to your livelyhood and I am sorry.

    • FelizCastus
      FelizCastus Oddity

      Posted

      Lol, nope, completely wrong. I would dearly love for there to be a cure, or failing that, more effective meds, as I do not think herpes is "just a skin condition" like some, and do consider it a nasty and unpleasant virus to have.

      However, you have provided no proof of HSV-2 infection (only negative results, in fact), gHSV-1 and even gHSV-2 do not behave the way you've described (continuous, scattered 4-week-long bumps on your back and buttocks for months, and never once a genital outbreak), and disseminated HSV is rare and very serious (potentially fatal), so again, most unlikely.

      I have also never denied post-herpetic neuropathy or related nerve issues, but it is worth noting that not all nerve problems are due to HSV. That is all, and good luck with your swab test, once you find a clinic that can do it. Remember, a PCR swab is far more sensitive and accurate than one by viral culture.

  • Johnna
    Johnna Misunderstood

    Posted

    This thread is making me question my situation. As I mentioned in my own thread. Numerous times, I gave felacio to a partner who was swabbed as HSV-2 ...we've also had protected sex, but sex came about a month after the felacios. I have this strange situation where, I've never had outbreaks, not on the face, not on the genitals... But outside of outbreaks, I've showed every other symptoms of HSV... Tingling being the most common accurance.

    I don't get headaches per se, but I do have lots of tingling around my chin and corner of my lower lip, my skin on my face alway looks orangy-red and is quite warm (feverish) to the touch. I also get the constant (every day and most of the day) I get the constant tingling of the back of my upper legs, sometimes the tingling turns more into discomfort and pain, all over both of my legs, especially at the joints.

    I blood (Western ...) tested positive for HSV-1 after the first ten weeks of my first exposure to the virus.

    I am guessing since my first time exposure was through kissing, mostly saliva ...my body didn't know what to do. With the HSV-2 in/on my oral regions, but I still got the HSV-1 from it. I also think I am highly contagious through casual kissing (greeting people face to face)

    I've been begging countless GPs, sex health nurses to prescribe me antivirals or/and suppressors (Valtrex etc.) but no one here gives the crap, and would even lift a finger until you have a visible out beak and sore.

    In a Nutshell

    - I've been tested positive for HSV-1. (And not 2)

    - I show typical tingling symptoms of Both HSV-1&2 on face and legs.

    - I seem to be contagious through the facial region.

    - Lots of rashes but NO outbreak yet after six months.

    - No one will perscribe me any medication, to help out with my very strong Pedormal stage.

    The worst part is it's not me suffering with the leg pains and tingling all over. The worst part is me being very contagious and no one doing anything about it to help me!

    Like Oddity says; This disease is still a huge misery to most health professionals...

    • FelizCastus
      FelizCastus Johnna

      Posted

      How do you have hsv-2 if you only tested positive for hsv-1? Like Oddity, you should also get a pcr swab for peace of mind. It is true that many general doctors are clueless, but quite a lot is known about herpes in the scientific community. Hpv is the greater mystery! Anyway, a lot of people report tingling and end up not having herpes, and only half of those with herpes actually experience tingling/prodrome. It is not a given.
    • Johnna
      Johnna FelizCastus

      Posted

      I don't think I have HSV-2, I thinkin have a very severe case of HSV-1 from giving oral to a woman who was infected with HSV-2 ...I never received any medication for it, and after six months I am "shedding" or more contagious than ever. I feel like I've made my whole family sick, and I'm terrified. GPs and nurses aren't doing anything about it...I finally managed to get a dermatologist refered, sadly I'll doubt I'll see him/her until sometime next month.

      In the meantime I feel like I should be in quarantine, suffering with my face and leg tingling and Beth highly contagious of (most likely) HSV-1

    • FelizCastus
      FelizCastus Johnna

      Posted

      I said this before, but if she only has HSV-2, she did not give you anything and you must have acquired HSV-1 previously. HSV-1 and HSV-2 are two related but *different* viruses. You cannot catch Type 1 from Type 2...
    • Johnna
      Johnna FelizCastus

      Posted

      I understand all that, but... She had dated and had sex with numerous partners before me with HSV. She never specified if these guys were type 1 or type 2... Who knows really?? (She just went on a herpes dating site after she contracted it and had sex with buncha dudes) She had a sore swabbed and tested (most likely viral culture) to get the HSV-2 positive result. Don't think she ever had a proper blood test done. Either way she does apparently break out down there, so yes she is HSV-2 positive.

      My concern is, as a person who is HSV-1, regardless when and how I became positive with type 1.... I do know I am highly contagious around people, now more than ever, and I'm transmitting it to prople I'm close with. Which is making me lose my mind... These people are showing exact same symptoms I showed the first week I had my first HSV reaction. Not sores or lesion out breaks , but severe, red rashes, fever, flu, swollen lymph nodes, aching muscles and joints, overall malaise etc etc.

      I feel like I need immediate medical help, to stop spreading it. But it's so difficult for any GP in Canada to take me seriously when I mention HSV, even though I am going crazy.

    • FelizCastus
      FelizCastus Johnna

      Posted

      Okay, good, because it certainly sounded like you were confused about the types before!

      I understand your concern, and she could well have both types now that you've provided more info, but without classic blister lesions and no swab to confirm this frequently recurring face rash (still seems too frequent for oral herpes), you cannot say with 100% certainty that it's herpes or that you're highly contagious as a result. There are loads of skin conditions out there!

      Are you able to get a (preferably pcr) swab done, even if you have to insist upon it and pay out of pocket? I think it's worth doing rather than assuming. If it's not herpes, awesome! If it is, then at least you know and can move on. The uncertainty is actually more stressful than finally knowing, even if positive, imo.

    • FelizCastus
      FelizCastus

      Posted

      P.S. A lot of people who have oral Type 1 don't actually get cold sores, sometimes not even once (although they can still shed occasionally). That's why although you have it, what is occurring on your face may not necessarily be it. Certainly wouldn't cause leg issues if you have it orally! The infected nerve body for oral herpes is located in the skull and serves only the face/mouth.
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