Ellie88

@Blue1982 @BonBon Hi ladies, Sorry I’ve been MIA. It saddens me to read of the pain that you’re in. It’s one thing dealing with the stigma and mental/emotional piece that ties into this virus, but the constant pain just adds a whole other layer to the mix. Last week I came of of the amitriptyline (weaned for past 3 weeks) and within two days the pain returned after being pain free for 6 months. For me it’s sensations of skin crawling, raw, itchy and burning. I unfortunately contracted it in two locations, on my neck and vaginally. After spending a week with a local Hawaiian man on vacation and not having been intimate for a year I thought why not? Well, lesson learned. We used protection but he gave me a hickey and performed oral which is how I contracted it. I’ve only ever had the initial outbreak down below which was 3 tiny bumps. I received a swab and two blood tests which all came back negative/inconclusive and when I had my second outbreak on my neck I tested positive for HSV1. I spoke to a physiotherapist last week who suggested I try acupuncture so I’m going to try that next week. Apparently they target the nerve that the virus lays dormant in. I figured it’s worth a try before jumping back on amitriptyline for another 3-6 months. Ive experienced such terrible withdrawal symptoms all week from the med so I’m feeling quite discouraged at the moment. I hope you’re both feeling better ❤️

No, those are the names of the vitamins. The brands bio clinic naturals, natural factors, and NDH 😊 Glad to hear you’re having good days!

@Blue1982 @BonBon I’m going on 5 months completely pain free so after one more month I’m going to start weaning off slowly to see how my body responds. I’ll definitely keep you posted! On a separate note, I’m also taking the following supplements my naturopath has me on to promote healthy nerves and a strong immune system. EGCG SAP B-Conplex SAP ALA SAP Vitamin C - 1000mg Theracurmin - 120mg

@Blue1982 @BonBon I really hope so as well, there clearly seems to be a link between HSV and nerve pain/sensations. I wonder if the founder can steer us in the direction of a doctor willing to complete a research study on this side effect. I’m so sorry to hear that you’re having painful orgasms. That plus 9 months of pain is just too much! I have the same question, if this is permanent I’m not sure what I’ll do. I suppose I’m just trying not to go there for my own mental well being. I also hope to get pregnant in the next year so I know whether the pain is gone or not I’ll have to stop taking it. I don’t want to have to take something but honestly if it means being in constant pain/discomfort for the next 40 years of my life or dementia, I’d take the dementia. I hope that doesn’t sound insensitive, I just know I couldn’t deal with the ongoing pain with no end in sight, as you said. I have taken it late, like at 10 or 11pm because I’ve forgotten to set my alarm or not been at home, and I might sleep in a little longer (if I don’t have to work) but I can still got up. I’ve never been a morning person, but don’t think the medication has made me even worse in the mornings. I can function completely fine during the day. If you like to stay up late, I’d say just take it a little later. It’s hard to say, even responds so differently to medications too. Hmm interesting article! See my naturopath explained that neuropathy is when a nerves are inflamed/damaged and so the pain receptors won’t turn off (or something like that - I’m terrible with the lingo and doctor talk). If the nerve was dead, we wouldn’t feel anything. My family doctor then told me that if the nerve ending gets cut, it can no longer send the pain signal so that’s another option, but then I’m afraid that would stop all sensations/feelings. Hows the prednisone working? Agreed so nice to chat with others who understand ❤️

@Blue1982 @BonBon The only side effects that I’ve experienced are dry mouth typically for only the first couple of hours in the morning and being drowsy. I don’t mind the sleepy effect because I’ve had trouble sleeping my whole life, but this stuff knocks me out. I no longer can remember my dreams and used to be such a light sleeper. I’m sleeping on average 9 hours, but sometimes 10 on the weekends. I take the medication at 7pm and it hits me at 10:30 - 11pm. I was told that in order for this medication to alter my mood I’d have to take 100mg or more so I’m happy that the 35mg dose has been effective. I’ve been to 2 gynaecologists, my family doctor, a naturopath, and an infectious disease specialist. Yes, one said that if it lasts for 1 year then the damage is likely permanent. However the other two said that nerves just take a very long time to heal, calm and repair. I’m really hoping that after being on this dose for 6 months I will wean off of them and be okay. I hate the thought of having to take something for the rest of my life, but could not cope mentally or physically with the intense pain and agitation. I was afraid of the side effects as well, but I just couldn’t take it anymore. Lots of medications state that you can’t drink, but my doctor advised that at such a low dose of it that it was okay. Please let me know if the prednisone works. I really hope it does ❤️

@GlitterGlimmer The vitamin B supplement wasn’t enough for me. Only the amitriptyline worked. I’ve been told by 2 doctors that nerve pain takes 3-6 months to heal but that if the pain is reactivated in this time frame you must begin the medication again and start the clock over. I’m always 3 months pain free so I’m going to begin to lower my dose and fingers crossed it doesn’t come back, if it does, then back up I go. Fingers crossed that none of us have permanent damage. Sending good vibes your way : )

@Blue1982 Ugh.. I know, the lack of info and expertise about this is beyond frustrating. I’ve spoke to 4 doctors, an infectious disease specialist and 2 gynaecologists and they have all told me that they’ve never seen this before. Unfortunately my initial outbreak was in two locations so I feel the pain down below and on the left side of my neck. Thankfully not while taking amitriptyline, it’s truly a god send! Fingers crossed our nerves will chill out ❤️

@Btru2urself I’m so happy to hear that my comment helped a little bit. The beginning is certainly a roller coaster, but as the days go on so do you. Life is all about bumps in the road that force you to evolve, whether you like it or not : ) While I cant say that I’d wish HSV on any one, I can honestly say that I may not have stopped unhealthy patterns without it. Just as Mr. Hopp said, HSV weeds out the riff raff. You’ll realize very quickly who you feel safe and comfortable disclosing to and who can just move along. There’s a big learning curve, but the more you learn the more you realize it’s no biggie. I’m in the happiest relationship I’ve ever been in and having the best sex of my life! That’s something I never thought I’d say after receiving my diagnosis. Be gentle with yourself, Big hugs ❤️

@Blue1982 I’m 1 year and 8 months since my initial outbreak and sadly am still dealing with nerve pain. I had tried Lyrica but had a severe reaction that caused me to lose function in my hands. It only last a couple hours for two days, but was scary. I am currently taking a lot of natural vitamins and 35mg of amitriptyline and it’s been life changing. I started at 10mg, but 35mg seems to be the dose for me. I try to go off it every 3 months, but it slowly comes back so I have to restart the medication again. Apparently nerve pain is quite complicated. Im just so grateful for this medication, it honestly makes me forget all about HSV! Sadly no doctor seems to know too much about this. Good luck with your tests, I hope they’re able to figure out the cause of your pain ❤️

@Btru2urself I’m so sorry to hear this, but I can honestly say that after getting diagnosed 1 year and a half ago I no longer feel ashamed, dirty or less than. It’s really not a big deal and can/will happen to almost 80% of the population. When disclosing, just be open and honest. Frequency and severity can differ greatly, but there’s lots of medication to help. I take a complex b vitamin and immune boosting supplements that help. I watched the “you probably have herpes and that’s okay” YouTube video and it completely changed my perspective. All things considered, it does NOT change your worth - sending love ❤️

@GlitterGlimmer @Mooeuk @Danaaaaaasaur I just posted about these sensations and am happy to hear that I’m not alone but also sad that we’re all experiencing these horrible feelings. I’m 4 months in from my initial outbreak and it’s so constant. Two years is a looooong time to wait for this to go away : ( Have people found specialist appointments to be helpful?

@hi202020 and @Meggers23 I just posted about this too! I’m 4 months in from my first outbreak and as soon as the sores (really tiny) cleared all these sensations began, some days are better than others, but they’re always there. I’ve tried lots of immune boosting supplements and Valtrex for 2 months but nothing seems to help. I hope with time it gets better and am so sorry to hear that you’re experiencing this feeling too.

@lily I’ve experienced similar tingling and do find that shifting my position helps it to go away. I don’t think it’s psychological at all, you’re not alone in these constant annoying feelings, I just posted about it too ; )

What other medications have you tried? Im so sorry to hear that you’re both experiencing this as well, I can’t seem to find any information on it. It’s just so frustrating because no doctor seems to be able to tell me or explain why I have these constant symptoms, as it doesn’t fit the classic presentation of the virus. I feel like I could adapt to HSV if it was just an occasional outbreak and there were periods of relief but this constant discomfort is horrible. Im hoping to try a couple other antiviral medications. Thank you both for responding : )

I haven’t been able to find any other case stories or images of it happening on a neck. It started out as one, I just thought it was a scratch and everyday there were more and more blisters. It was incredibly painful. So you have these constant sensations too?

I’m new to the Hopp family and am struggling to manage my prodrome symptoms. I contracted HSV (unsure of the type) 4 months ago and haven’t received a positive test, but all signs point to HSV. I have an overall feeling of tingling, burning, itching and discomfort in the genital/anus area constantly. I’ve taken natural supplements, tried creams, and have been taking Valacyclovir for the past 2 months and nothing works. I thought after the initial outbreak (3 small spots on outer labia and a horrendous and angry cluster on my neck) cleared that this was something I could manage and cope with, but these constant feelings serve as a constant reminder and are painful and discouraging. Has anyone had a similar experience or any suggestions? Thanks in advance : )