BonBon

@TurtleWow! I am really a believer in this! I always believed a lot of it is in the mind. I mean we do have the virus but our minds can control how we react to it. That is a good visual of it dying off from lack of oxygen. I have gotten into a habit of shallow breathing. Shallow breathing in itself causes anxiety because it makes your brain think something bad is happening. It’s like the fright or flight situation. The stomach also gets affected by all this too. I have gotten myself into bad habits. This bad bout of herpes came out last year when my daughter was getting married, and my husband was retiring. It was good things but a lot of life changes which I’m not good with. I haven’t been able to get my body to calm down since then. So my herpes got bad, and my LPR got bad. I just feel everything worse when I shallow breath and think too much. I also get it bad when I work. I work out of my house but when I get crazy busy it gets worse. And now I have a new thing. My teeth hurt. I had to get some dental work and I was nervous going to the dentist because of covid. So my jaw started getting tight and it’s hurting my teeth. I went and found out I have some periodontal issues. Nothing major just some things I need to do. But it stressed me so much my mouth hurts from thinking about it. With my LPR I keep thinking I have something physically wrong that’s causing it but I’ve had a bunch of things checked out and nothing is wrong. So I do believe if you can break the cycle you can reduce some of the pain. But right now, as I said, with covid and being home so much it’s hard to reduce stress. I’m going to look into the things you suggested! Thanks so much and keep in touch in the post

@Turtlethat’s a lot of good information! I totally agree that a lot of it comes from stress. I honestly have a really good life. Not a lot of problems. Just normal things. Work, older parents issues, and now the virus stress. My issue is we have anxiety issues in my family and we don’t handle any kind of stress well. I can’t take to many things going on at one time. When my youngest was in high school I was busy with work, school activities etc. I was always rushing and had lots going on in my head at once. That caused my herpes to come out at times. It also caused me something called LPR. That’s stomach acid that goes in the throat and causes burning mouth. I have tried so many things to get rid of that. But as you said when you do calming things like vacation it all goes away. I do find that. When I was in the throws of herpes pain last year I went on vacation for 10 days and I barely noticed the pain. Also my LPR goes away. If I go out and have a nice evening it mostly goes away. That’s when I put it together that this all must be coming from stress or too much going on. Now with the limitations of going out my things are worse because I’m home more and concentrating on the pains more. I have tried to mediate everyday and that helps some. But paying attention to breathing through the day helps too. With the herpes pain when I’d focus on the pain it would intensify. So that is why pain intensity would vary through the day. Right now it is there very slightly. Mostly a little itchy and a little pressure but I barely notice it. I know it’s not totally dormant yet but I have really tried to not pay attention to it and I think that helps. But when the pain is intense it’s very hard not to pain attention. So now I’m trying to work in my LPR. I am going to look into the books and people you posted. I’d be very interested to learn more. So glad it helped you. I hope it keeps working for you! I think this stuff is very common but with the stigma a lot if people don’t talk about it

@Ellie88it’s been awhile. So sorry you’re still dealing with it. Luckily my pain is pretty much gone with doing nothing. It kept putting the viral ointment on for a few weeks. I don’t know if that helped or the sore just healed but the pain subsided slowly. Last week I got another small sore and it just burned. I put the ointment on and it healed in a couple days. I just needed the sore to heal. I still feel a little itchy at times and some pressure but it’s very slight. I think it’s still not totally gone but my pain is almost non existent. I am so grateful. I think mine comes from stress. I have a bunch of stuff from stress. So I’m adding this to the list. I didn’t know you could get it on your neck. So the guy you were with had a cold sore and you got sores from that? I know people who have had acupuncture and helped with all sorts of things. That really might work for a time so you don’t have to take the pills. It’s too bad the pills helped but you had such a bad withdrawal. That’s why I was reluctant to take pills for it. I’m wondering why if you had no sores before you still had pain. I was concerned that the pain was going to stay even after the sores were gone. But it seems when the sores healed the pain went away. I think I have a scare from one though. That was the one that gave me the most pain. I hope it’s not just dormant and it starts again but for now it’s ok. Please keep in touch and let us know how the acupuncture works. I hope it starts to go away completely for you. I understand how horrible it is.

@Blue1982 got it...if I knew for sure the nerve wasn’t damaged and it’s just a matter of finding the right thing to make it go away I’d feel a little better but just the thought of this possibly never going away is what is scarring me. Right now since we really can’t do much because of COVID. I don’t feel so bad staying home and dealing with it. But eventually I want to go out again, travel live life and if I’m in pain it’s hard to do. But actually when I go out or go on vacation it gets less or goes away because I’m less stressed. But I don’t want to live life fearing it will hurt. It seems now it’s every other day and the pain isn’t as bad. So there may be some hope. i also don’t know what other Drs to go to if my dermatologist can’t help me. It’s frustrating and expensive dealing with this

@Blue1982 I thought if the sores happen genitally it’s HSV2. HSV1 is cold sores. I had blood tests and have both. I never had a cold sore though. Does yours get worse with stress? That really triggers it for me. I really appreciate talking to you ladies. It helps. Maybe we can exchange emails or something so we don’t have to keep posting all this . But either way we can keep in touch because we can exchange things that might be working. And how it all works out for us. Talk soon...

@Blue1982 did you have any sores? I think I mentioned this before but my first outbreak was maybe 10 years ago. It would start with a little tingle and then a sore would come out. I’d put the cream on and in a couple days it would be gone. It was a none issue. I got a couple in my anal area and a couple in my vaginal area. But I’ve only had a few outbreaks. This one started in my lower back area and spread just to my anal area. I didn’t have a sore until a month ago. The sore is very small. This one is a really weird outbreak. It’s also taking a long time for the sore to go away. I think or hoping once the sore is healed my pain will lessen too. Because when I press the sore that is where the pain radiates from. I feel so bad that your pain radiates like that. Are you sure it’s HSV? As I also mentioned when I have a bad day I get so moody. It zaps my energy because all I can do is think of my pain. On the good days I get happy maybe it’s going away and I get energy and remember how it felt to not feel it. I do have to say the pain is getting less and easier to control. But it’s not all gone. I really do hope we all find some relief from this.

@Ellie88 @Blue1982 I wanted to ask you both what does yours feel like? Mine was itchy, burning, pin prick feelings and then pressure, inflamed and swollen feelings in my anal area. The itchy, burning dvd pun pricks are gone pretty much. There is always a sensation there but when it acts up I feel the pressure and swollen feeling. Ellie88 I read again what your naturopath said about the nerve not turning off when it’s inflamed/damaged. That’s why I’m thinking if the inflammation can get calmed down it will stop. That is if the nerve is not fully damaged. But if you were able to get it to stop with the pills then it doesn’t sound like it’s damaged. And if I get it to calm down when I’m not stressed then I’m thinking it’s not damaged it just needs to stay calm. But then again if your naturopaths theory is that if it’s damaged it doesn’t know how to shut off then what? I also wonder if someone can study this. We can’t be the only ones with this issue with HSV.

@Ellie88 well I spoke to soon. I had a stressful day today and the pain is back. Not as bad as before but that irritated swollen feeling is back. It definitely goes with stress, no question. And when this happens I stress more because as you said I worry this will go on the rest of my life and I really can’t stand it. There are going to be stressful days, you can’t avoid that, especially now. I think it’s inflamed and the stress inflames it more. I really hope the nerve isn’t damaged and that’s what’s causing it. I don’t know what kind of horrendous test you’d need to go through to find that out. If you are pain free then it sounds like your nerve isn’t damaged. My plan is to do the pills as my dermatologist said. Go to him for my appointment. See if I should take the prednisone. If that doesn’t work then I’ll see about going to a neurologist to see if the nerve is damaged. Or I’ll see if my GP can prescribe what you’re taking. If you have been out of pain than that must work. Can you remind what Drs you went too? I know you said the naturopath gave you the supplements but who is prescribing the anxiety meds? I’ll also look up those supplements. I was going to take a stress B complex, and turmeric anyway. I also really need to make some life changes. Getting more sleep, exercising and meditating. But with everything going on with virus and life stuff I have been a ball of nerves. I can’t shake it. I think that’s what’s keeping this thing alive. I hope we can all find peace. It sounds like you are in your way.

@Ellie88 glad to hear you’re out of pain too. Are those brand names to the supplements? I’ll look into them. Hope your pain stays away...

@Ellie88 at least the pill doesn’t make you groggy during the day. And I think it is inflammation but if we can get the inflammation to go down, hopefully the nerve isn’t damaged, than maybe the pain will stop. I do have some good news for me. The day I wrote my post I had a really bad day with it. That was Friday. On Saturday I felt like I had turned a corner and my pain was down a lot. And for a couple days it wasn’t terrible. Yesterday another bad day but not as bad as others. I texted my Dr and he said to keep taking the Valtrex for a couple more weeks and to make an appt with him for two weeks and if I’m not better by than we can talk about prednisone. I was really worried this would never end. But today has been my best day so far. Almost no pain. Just a little tingle. No pressure feeling. My sore is still there but it’s healing so I’m hoping once it heals my pain will stop. I’m not getting my hopes up completely because I’ve been fooled before and I will need to stop taking the Valtrex. But I’m starting to see a little little at the end of the tunnel. Since I didn’t take the prednisone yet I can’t answer. If in two weeks the pain is gone I will cancel my Dr appt too. I’ll stay in touch and let you know how it goes in a couple weeks.

@Ellie88 @Blue1982 I found the article that said HSV doesn’t cause neuropathy. Here is an excerpt from it Corey pointed out that varicella-zoster does not appear to cause skin cells to produce IL-17c, and reactivations of that virus cause painful nerve damage. HSV-1 and HSV-2, on the other hand, do induce production of the protein, and reactivation of these viruses yields no loss of sensation or neuropathy. This is particularly noteworthy because the herpes viruses reactivate 50 to 100 times more often than varicella-zoster. It is more evidence and grounds for optimism that IL-17c and its receptors on nerve fibers are important in protecting peripheral nerves. The zoster virus is shingles. So shingles can cause neuropathy because it doesn’t produce that enzyme or whatever. But HSV does. I hope this is true. I think neuropathy is when the damage is done. So that’s why I think it’s just inflammation and I’m willing to try the prednisone. At least that’s my hope.

@Ellie88 yes thank you for answering so quick. When I read a dr told if it’s a year the damage is likely permanent that made my heart sink. I hope your other dr was right and it just takes awhile. If I knew there’s an end to this it would help my stress level. so if it’s permanent what do you do? Stay on the anti depressants forever? I read they could cause irreversible dementia and that’s why they don’t give as much anymore for depression. Plus if you go off you have to taper off. I like to stay up late like until 1am so if you take it late can you get up in the morning? Can you function during the day normal? If you have to get up early can you? Dies it allow you live a normal life during the day? I’m so mad at myself not think that it could be this when it started bothering me last year. It wasn’t my first outbreak but the few others I had I just felt a tingle never pain. A sore would come out and I’d put a little cream on it and it would be gone. This was different. I read somewhere that Herpes doesn’t cause neuropathy because it likes to live in live nerves and neuropathy kills the nerve so it won’t kill the nerve. They are actually studying it for chemotherapy neuropathy. So my hope is that’s true and this is just nerve inflammation. For me that’s what it feels like. I think this is going to be a long road but I need to find the right dr to help through this. My dermatologist is great but I think prednisone will be where his advice will end. He told me to text him Tues and we’ll talk about the prednisone. I don’t even want to do that because of side effect and and it lowers the immune system but I have a feeling it may work. At least I hope so. I’m glad I found you ladies. It’s good to talk this out. I hate being like this around my family.

@Blue1982 boy can I relate. I take fish oil but that hasn’t helped. I am a high anxiety person too. My body started getting into a constant stress level a few years ago. Everything stresses me. My work, worrying about my kids, too much going on at one time. As I’m getting older I can handle less. I go to bed too late and sometimes don’t get enough sleep. And then it’s a vicious cycle because this causes stress so I get stressed from this. I was thinking about acupuncture but I hate needles. And it didn’t seem to help you a lot. I haven’t thought about CBD but that might be something to try. I would also like to try other things before anti depressants. I looked up the side effects of them and they don’t sound good. And I like to have a cocktail sometimes and you can't taking that. I wonder if they are something that makes it go away and you can get off it or once you go off it will come back. I’m thinking it’s inflammation though. If there is something to relieve the inflammation that should help. I feel like mine is inflammation because it feels swollen and throbs. The itching and burning is pretty much gone. I tried a little Advil but that didn’t help. Maybe taking that for a few days might help. Has any Dr suggested prednisone? It makes sense that might work because that lowers inflammation. I’m thinking mine started and since I didn’t know what it was I did nothing. It got my nerve inflamed. Maybe if I had started the Valtrex earlier maybe this wouldn’t have happened. You gave some good suggestions. I’m going to try the vitamin B stress complex and tumeric. The tumeric needs to have black pepper in it to help with the effectiveness. And I’ll look into CBD gummies. I might try the prednisone first. If that doesn’t work I’ll try the natural things and if that doesn’t work I guess it’s going to be anti depressants. I also need to re-evaluate my life. I started to mediate and exercise but not everyday. I’m going to try and not get upset at everything. And start doing healthier things mentally and physically. What kind of Drs do you suggest seeing for this? I’ve run the gamut. Maybe a neurologist? I’ll work with my dermatologist until he can’t help me. I’d like to keep in touch if you don’t mind. I think it’s good to have people to bounce ideas off on.

@Ellie88What kind of Drs have you gone to? The Drs have told you the nerves can heal? Would there be any reason to think there is permanent damage? The amitriptline sounds like it can help. But the side effects don’t sound good. Tiredness, possible dementia, heart issues among other things. Plus I like to have a cocktail from time to time and you can’t with this. Is this temporary until the nerves calm down or do you have to be on it forever? And have you ever tried prednisone for it. My dermatologist wants me to try a course if that. I’m really at my wits end

@Blue1982 is nortryptiline the same as amitriptyline? It seems these things have worked for people. I’m to the point where I’ll try that too. I don’t like heavy meds either but nothing I tried has worked. Some days aren’t bad and I think maybe it’s stopping and then I have a stressful day and wham! When I’m on vacation it seems to go away. So it really has to do with stress level. When mine started last year my daughter was getting married, and my husband was retiring. Even though those were happy events they were stressful. I also have a mom in a nursing home I have to deaL with. And then COVID. I lost my business and like everyone else it’s been hard. So constant stress. My body is so wound up. When it started I thought it was hemorrhoids and went to recital drs and gastroenterologists. I tried creams, ointments. I spent so much money trying to figure it out. Then after a year the sore came out and I went to my dermatologist who gave me Valtrex pills,which never had to take, and ointment to put on the sore. The sore is getting better but the pain not so much. Now, as I mentioned, he wants me to try prednisone to get rid of the inflammation. I’ll talk to him about that. But after this I don’t know what other Drs to go to. I guess my GP can give the anti depressants or whatever those pills are. And turmeric is supposed to help with inflammation. After that I don’t know. I am so scared I’ll have to live with this forever. What kind of Drs have you tried?