Post herpetic nerve pain - any tips?

[Danaaaaaasaur]

 

I've been struggling with nerve pain since I had my for ob last August. I'm currently taking suppressive Valtrex and a mixture of Lyrica & amitriptyline to try and settle the nerve pain along with topical Oestrogen cream for the vulva area. I was just wondering if anybody else has struggled with this or struggled for an extended period of timeline myself? If so are there any other tips or tricks to reduce the pain besides medication? Could diet & exercise play a factor?

Any help would be much appreciated :)

Thank you x

[whitedaisies]

When I went to a natural path, she suggested I go through a cleanse as when ur body reacts like that there is lots of inflammation in the body. He started me on an elimination diet. I never did it as it was really strict. But I may try it soon.

 

Certain foods can increase inflammation.

 

Maybe u can try natural path.

[Danaaaaaasaur]

@whitedaisies my friend actually recommended I go see her naturopath. I might give it a shot :)

 

Have you found it's helped you at all?

[whitedaisies]

Well I believe it can.

 

I didn't do the elimination diet yet but I will. I was struggling with diagnosis so it was just too many appts for me.

 

I plan to go back though when things settle w appts which is tomorrow. I have specialist appt. took me 6 months toget.

 

Certain foods increase inflammation so at important u avoid those. Not just those related to h.

 

I think u should visit a natural path. It can only help.

 

 

[WCSDancer2010]

Biggest cause of inflammation is sugar - so if you want to try an elimination diet, look up the Yeast Free diet -

 

Best supplement to reduce inflammation is Tumeric ... also Cinnamon, Lemon Bioflavanoids, Bromelain (from Pinapples) are good sources. You can get them in pill form at most health food stores :)

[fonda]

Danaaasaaur, Were you ever healed? I am experiencing similar nerve pains. Please let us know. It has been 5 weeks now for me

[Danaaaaaasaur]

 

Danaaasaaur, Were you ever healed? I am experiencing similar nerve pains. Please let us know. It has been 5 weeks now for me

 

Hi Fonda!

 

I'm sorry you're going through this. I can 100% confirm my pain has almost all gone away :) but it did take about 2 years before it got a good deal better. I had next level pain though so hopefully yours isn't so bad, even if it is please know it does slowly get better :) Have you been to the doctor about it?

 

 

[fonda]

Sorry for the delay, just saw the post, but yeah, I am still in pain and am wondering if it is the nerves or something else. My urologist said it is nerves but I dont get how that explains the swelling and redness of my penis. He prescribed me ametriptyline as well and I hope that it works. Thank you again for the reply and for sharing :)

[Mooeuk]

I have what the think is nerve pain, it's like a constant 'niggling' feeling in/around my anus that's been going on for about 9 weeks now. 

I started 10mg Amitriptyline 3 weeks ago and have upped to 20g last week but still pain.

Anyone used it successfully and if so at what dose?

Thanks 🙂

[GlitterGlimmer]

@Mooeuk I’m dealing w the same feeling in/around anus. Did it get better for you?

[Ellie88]

@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? 

[GlitterGlimmer]

@Ellie88 i used a complex vitamin b supplement to get rid of the nerve pain and it worked. Give it a try and hang in there. 

[Blue1982]

Just checking in to see how everyone is doing....I too have had weird nerve pain since my initial outbreak in August 2019....also started having really painful orgasms in March 2020...getting an ultrasound done tomorrow to see if there’s a unrelated HSV cause (cyst or fibroid)....no doctors seem to know much about it (I’ve gone to 4 doctors). 

The nerve pain started in my genital region and then 6 months later traveled to my lower abdomen. 
 

just wanted to see, since this post is older, if anyone’s nerve pain got better over time?

 

Thank you!!

[Ellie88]

@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 ❤️

[Blue1982]

Thank you for your response!!! It’s so strange to me how some people get daily nerve pain and others do not.

all the doctors I’ve spoken to don’t really think it’s related to HSV but I didn’t have any of these symptoms before my initial outbreak.

[Ellie88]

@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 ❤️

 

 

[Blue1982]

@GlitterGlimmer do you remember how long it took for your nerve pain to go away once you started the vitamin B supplement? I just started taking it two days ago....I’m scared I have permanent nerve damage...it’s been 9 months of constant pain with no second outbreak

[Ellie88]

@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]

@Ellie88 I might start taking nortryptiline which is very similar to amitiriptline....have you had any side effects to the med? I’m very sensitive to antidepressants 

[BonBon]

@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 

[Ellie88]

@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 ❤️ 

[Blue1982]

@Ellie88 thank you so much for taking the time to respond.

i am really contemplating going on it because 9 months of painful electric orgasms and daily nerve pain is not fun.....

I really hope that this solves itself for all of us eventually!! ❤️

[BonBon]

@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. 

[BonBon]

@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]

@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 ❤️