Extreme nerve pain need advice on medications.

[SnowAngel]

Hi all I've had herpies for about four months now, it's been a painful and depressing ride but my biggest issue is the extreme nerve pain/burning around my vagina. I'm seeing my doctor next week so I'd like to know which medications have helped you through this pain. I current,y have kolonopin which seems to relax but body and ease the pain a bit. Besides that I have tried pain pills, numbing cream, natural supplements and even daily Valtrex, all have done little. I've heard good things about amitriplyne for helping vagina nerve pain? Are there any stronger pain pills that help nerve pain? I'm on the verge of suisude and at least  thinking of quitting my job over this pain.  I need help  herpies did not seem to sound like that big of an issue but now I'm struggling greatly. 

Ps: This worst pain/burning comes a few days after my period and after sex which I've inky had once since.

Ps: Does this sound like it could be a decent opinion to ask my doctor about...

- Up my daily Valtrex to twice a day during outbreaks

- Start Amitriplyne 

- Up my dose of  Kolonopin during outbreaks

- See if she can give me a pain pill for during outbreaks

-See a doctor for Vulva pain   

[LilyMae]

Hi @SnowAngel. The burning sensation sucks. I've had h for21 years and it never bothered me that much until last year. After an outbreak I suddenly had that burning sensation and neuropathy. It lasted about 5 months. I tried everything under the sun to ease it. Finally what helped was a probiotic for vaginal health. One from a store that has a cold case for the probiotics. I also used plain Greek yogurt topically down there because it has a similar probiotic make up to a healthy vagina. It's kind of gross but it seemed to ease the pain. 

I've seen other people say that aloe vera helped them. I sure hope you get some relief soon. I know it sounds trite in a message from a total stranger but please put thoughts of suicide away. This period in your life is hard and dark and lonely because we get isolated in ways that are difficult to break out of. But it is just a period in a long and beautiful life. You are so much stronger than you think and you will get through this. 

I don't know if it's your cup of tea but there are tons of guided meditation videos on YouTube. They help me when I feel anxious or depressed or agitated about something. Jason Stephenson's channel has a lot of good ones. 

Sending you love and a giant hug. 

[phil UK 1972]

Sorry to hear you are stuggling...i remember the nerve pain being the worst thing when i contracted this lovely condition but please rest assure that it will settle down after a while.  I know its easy to say but the more you relax, the less it seems to be, well it was for me anyway.  Just hang in there and dont do anything stupid, it will get better and less painful i promise

 

Phil

[SnowAngel]

Thank you! I have tears in my eyes after reading your reply (in a good way!) this is exactly what I needed to hear. Thank you!

ps: Do you think the burning us hormone related? I'm only 32 but have had many issues with high estrogen, I'm wondering if there's a link? 

Thank you Phil that was so kind if you to take the time to reply to me! God bless you guys! 

[phil UK 1972]

totally welcome..ive been there and i know what its like....

i honestly dont know if im just lucky but 10 years down the line, i dont know i have it....the first 6 months-12months is always going to be a tough time because its not just the physical feelings you are encountering, its the emotional ones too...

Once you get your head around things, your body will start to calm down and eventually you will feel less pain.

I definitely felt really chronic nerve pain all around the downstairs department for months, so its very very common what you are experiencing.

 

Edited January 4, 2017 by phil UK 1972

[LilyMae]

22 minutes ago, SnowAngel said:

ps: Do you think the burning us hormone related? I'm only 32 but have had many issues with high estrogen, I'm wondering if there's a link? 

I think for me it was totally related to hormones. I'm about to turn 46 and I can tell there are some subtle hormonal changes happening. I also find the vast majority of my outbreaks coincide my period and occasionally with ovulating. You might try red raspberry leaf tea which is a gentle uterine tonic. I make it with loads of thinly sliced fresh ginger and some honey and I can really tell a difference in my periods when I do this. 

[Lab11]

Hi snow angel. I am in the same boat.  Vaginal burning after my last outbreak 3 months ago. Been tested for everything. My doctor put me on the notriptyline a week ago. I am up to 30 mg and it's helping.  But I know this is only masking the symptoms and I feel contagious all the time. I am 45 and have a non h boyfriend so this has been difficult.  I can't tell u how many times I have told him to leave me for someone better even though I would hate my life without him 

[SnowAngel]

I'm so surely Lob  how long have you had h? Your boyfriend must truly love you. Your very very lucky in that sense. I hope you feel better

Lily the tea sounds amazing! I'll try it! 

[Lab11]

I have had this 26 years.  About 22 of them not really bothered.  Turned 42 and all hell broke lose even on valtrex.  Now the last 3 months no outbreaks but burning.  He is a great guy but I feel so bad. 

[Lab11]

1 hour ago, LilyMae said:

Hi @SnowAngel. The burning sensation sucks. I've had h for21 years and it never bothered me that much until last year. After an outbreak I suddenly had that burning sensation and neuropathy. It lasted about 5 months. I tried everything under the sun to ease it. Finally what helped was a probiotic for vaginal health. One from a store that has a cold case for the probiotics. I also used plain Greek yogurt topically down there because it has a similar probiotic make up to a healthy vagina. It's kind of gross but it seemed to ease the pain. 

I've seen other people say that aloe vera helped them. I sure hope you get some relief soon. I know it sounds trite in a message from a total stranger but please put thoughts of suicide away. This period in your life is hard and dark and lonely because we get isolated in ways that are difficult to break out of. But it is just a period in a long and beautiful life. You are so much stronger than you think and you will get through this. 

I don't know if it's your cup of tea but there are tons of guided meditation videos on YouTube. They help me when I feel anxious or depressed or agitated about something. Jason Stephenson's channel has a lot of good ones. 

Sending you love and a giant hug. 

Hi. Can you give me the name of the probiotic ?

[SnowAngel]

Lab I'm so sorry . Please keep me updated on how you're doing. Maybe go to your OBGYN for more advice. 

[Peacepleez]

Same boat. 6 months in and in misery with nerve pain. Hate my life. Unable to focus. Is it a coincidence that we are all in our 40s?  Something about our immune system? Not sure I can hold out until the theoretical benefit of the vaccine. I started an HSV neuropathy post that we should all add to. Search for it. Maybe the moderators will allow s private group with neuropathy sufferers only. 

[Mackie82]

1 hour ago, LilyMae said:

Hi @SnowAngel. The burning sensation sucks. I've had h for21 years and it never bothered me that much until last year. After an outbreak I suddenly had that burning sensation and neuropathy. It lasted about 5 months. I tried everything under the sun to ease it. Finally what helped was a probiotic for vaginal health. One from a store that has a cold case for the probiotics. I also used plain Greek yogurt topically down there because it has a similar probiotic make up to a healthy vagina. It's kind of gross but it seemed to ease the pain. 

I've seen other people say that aloe vera helped them. I sure hope you get some relief soon. I know it sounds trite in a message from a total stranger but please put thoughts of suicide away. This period in your life is hard and dark and lonely because we get isolated in ways that are difficult to break out of. But it is just a period in a long and beautiful life. You are so much stronger than you think and you will get through this. 

I don't know if it's your cup of tea but there are tons of guided meditation videos on YouTube. They help me when I feel anxious or depressed or agitated about something. Jason Stephenson's channel has a lot of good ones. 

Sending you love and a giant hug. 

Kindly confirm what do you mean by probiotic it's the pills sold for the stomach enzyme or something else I have the same pain for 5minths also and nothing is helping 

[LilyMae]

8 minutes ago, Lab11 said:

Hi. Can you give me the name of the probiotic ?

Hi Lab11. I took Raw Probiotics Vaginal Care 50 Billion guauanteed with 38 probiotic strains. It's a pink lable that says all of that on it. And a Bio-K fermented dairy probiotic shot. There are a few probiotic formulas that are specifically for vaginal health and as long as they're refrigerated I'm not sure how much difference there is brand to brand. I tend to like Jarrow and Raw products.

[Mackie82]

1 hour ago, LilyMae said:

Hi @SnowAngel. The burning sensation sucks. I've had h for21 years and it never bothered me that much until last year. After an outbreak I suddenly had that burning sensation and neuropathy. It lasted about 5 months. I tried everything under the sun to ease it. Finally what helped was a probiotic for vaginal health. One from a store that has a cold case for the probiotics. I also used plain Greek yogurt topically down there because it has a similar probiotic make up to a healthy vagina. It's kind of gross but it seemed to ease the pain. 

I've seen other people say that aloe vera helped them. I sure hope you get some relief soon. I know it sounds trite in a message from a total stranger but please put thoughts of suicide away. This period in your life is hard and dark and lonely because we get isolated in ways that are difficult to break out of. But it is just a period in a long and beautiful life. You are so much stronger than you think and you will get through this. 

I don't know if it's your cup of tea but there are tons of guided meditation videos on YouTube. They help me when I feel anxious or depressed or agitated about something. Jason Stephenson's channel has a lot of good ones. 

Sending you love and a giant hug. 

I just want to comment on your post to tell you that you are not alone . What you have wrote about yourself including quiting the job is the same but see I am also in daily valtrex and I have had H for 10 years and I never experience any single outbreak while I knew from 2007 but due to stress in mid of June last year I ended up with the nerve pain and no visible sores or blisters . What have helped abut is lyrica 150mgx2 but you have to start with Lower dosage BTW I used to be admitted at the hospital from the pain now it's a bit better I joined my work back after 60 days unpaid leave so listen don't kill yourself a lot of research and study is goin on maybe halford vaccine will be available is one year and I think many times to commit suiside but this is the not the solution believe me. Stay strong without stres and say how the sitatuon will change 

[SnowAngel]

Thank you so much Mackie  you warmed my heart. I feel so awful for us suffers. I think about going to a hospital often, do they do anything helpful? Do they treat you good? I feel like they might look at me funny if I go in fir "simply" herpies pain. Thank you so much for your reply it truly helps me to hear this! 

[LilyMae]

6 minutes ago, Mackie82 said:

Kindly confirm what do you mean by probiotic it's the pills sold for the stomach enzyme or something else I have the same pain for 5minths also and nothing is helping 

Hi Mackie. Sorry you're going through this. I used two probiotic supplements. One in pill form specifically for vaginal health from Raw. (Vaginal Care 50 Billion guauanteed with 38 probiotic strains.) And one that is a liquid called Bio-K. I took both orally and also opened up a capsule of the Raw probiotic and made a poultice with the Bio-K and put it directly on my vag. This is not something a doctor told me to do but I felt a little desperate and decided to go for it. It seemed to help. Not a miricle or anything but over the next month the burning went away.

Hope you feel better. Hugs.

[LilyMae]

26 minutes ago, Lab11 said:

have had this 26 years.  About 22 of them not really bothered.  Turned 42 and all hell broke lo

That's weird. Almost exactly the same as me. Sure hope you feel better soon!

[Lab11]

5 minutes ago, LilyMae said:

That's weird. Almost exactly the same as me. Sure hope you feel better soon!

Yes.  Very similar. Hope the probiotics work for me too. Where r u from?

[LilyMae]

St John's wort and lemon balm helped some. But if you're taking pain meds or anti-anxiety meds you should DEFINITELY check with your doctor before taking St John's wort. 

1 minute ago, Lab11 said:

Yes.  Very similar. Hope the probiotics work for me too. Where r u from?

I'm in Sacramento, Ca. What about you?

[MyFriendHerb]

I use a product called "Uristatin" by Thorne Industries. I take 1 in morning and 1 at night. It was recommended for a urinary tract infection but it stopped my prodrome and neuralgia that had been going on for months. I do not know why it is helping me but it is so that is all I care about. When the urinary infection cleared I stopped taking it and within a week I started getting prodrome and other things again so I know it helps me on other levels and wanted to share just in case it will help others. Look up the ingredients for yourself. Just make sure the ingredients do not work against any medicine you are taking. I hope others find the help I have found.

[LilyMae]

3 minutes ago, MyFriendHerb said:

I use a product called "Uristatin" by Thorne Industries. I take 1 in morning and 1 at night. It was recommended for a urinary tract infection but it stopped my prodrome and neuralgia that had been going on for months. I do not know why it is helping me but it is so that is all I care about. When the urinary infection cleared I stopped taking it and within a week I started getting prodrome and other things again so I know it helps me on other levels and wanted to share just in case it will help others. Look up the ingredients for yourself. Just make sure the ingredients do not work against any medicine you are taking. I hope others find the help I have found.

Thanks! It might be the uva ursi in that that's helping. I ran across an article recently about uva ursi and vaginal neuropathy. 

[Mackie82]

13 minutes ago, SnowAngel said:

Thank you so much Mackie  you warmed my heart. I feel so awful for us suffers. I think about going to a hospital often, do they do anything helpful? Do they treat you good? I feel like they might look at me funny if I go in fir "simply" herpies pain. Thank you so much for your reply it truly helps me to hear this! 

They didn't agree that it's herpes related they said the only strain causing the nerve pain is the shingles anyways from this forum you will get the best advise and since we are all on the same boat so don't worry we will help each other and servive, you can message me and tell me anything you want since you are the closest symptoms like me, 

[SnowAngel]

Thank you so much! 

[Lab11]

16 minutes ago, LilyMae said:

St John's wort and lemon balm helped some. But if you're taking pain meds or anti-anxiety meds you should DEFINITELY check with your doctor before taking St John's wort. 

I'm in Sacramento, Ca. What about you?

New Jersey