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JustMe316

Depressed. Constant prodrome, no OB

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JustMe316

I posted this as a reply to another thread a minute ago, but it was an old thread and I'm really depressed and really just need someone to talk to who might have or be going through the same thing. I don't know what to do anymore....

I was diagnosed with gHSV-1 almost two years ago and while I have had several actual outbreaks, the most depressing part is the CONSTANT prodrome tingling and burning that just won't go away. If I go a day without feeling it it's a miracle. Sometimes it's localized to the place where I have had all my OBs, usually tingling and burning there, but sometimes the tingling part radiates through my whole groin area and into my thighs.

I take 1g valacyclovir daily as a suppressive, and my doctor once gave me steroid cream to "reset" my nerves when I told her that I was experiencing what would seem to be prodrome symptoms that never manifested into actual OBs. I have been using the cream again lately, but it doesn't seem to be helping. She doesn't seem to give a flying rat's behind about helping me either way I feel, I'm pretty sure I know more about HSV now than she does. I had to argue with her just to get a blood test for determining what type it was after I was diagnosed by swab, because she said "what difference does it make? They're all the same". No, they're not all the same and they're especially not all the same to ME since I'm the one that has this. I told her about the constant tingling and she just told me that if I'm feeling prodrome I have to assume that the virus is active and that I'm contagious. But this has gone on for the better part of two years, with no outbreak actually happening most of the time.

In that regard, how am I ever supposed to live any sort of normal or happy life again? If I'm reminded EVERY SINGLE DAY that I have this thing? If I have to assume I'm ALWAYS contagious whenever I feel a tingle then no one can ever touch me again, and if it's just nerves and not the virus, how am I ever supposed to tell the difference between that and real prodrome? Then no one can touch me then either. I'm really depressed and have been for most of the two years since I found out because the tingling and burning feelings just won't go away. I don't know what to do anymore, I don't want to have to be alone for the rest of my life :(.

I know there are countless threads on this, but has anyone ever been able to find an answer? It just seems like a bunch of people saying "me too, and my doctor tells me I'm crazy..". There has to be SOMETHING that will help..... :'(

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AychEsVee

Try Vitamin B-12 as a nervous system booster supplement? Obviously talk to someone with a professional background but I've read enough anecdotes on her to know that that helps some people. I'm really sorry for your symptoms, and I hope they improve. Herpes could be the catalyst for another disorder, but this may not be herpes itself. Definitely get a second opinion.

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AychEsVee

And no, you don't have to assume you're always infectious if you're getting the prodromes.

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Acesheart

I had prodrome symptoms it felt like crawling ants down my spine tail bone area, it was damaged nerves from epidurals. The tingles and the burning had me using heating pads, cold pillow options, patches, anything I could get my hands on. They took me off Valtrex and ran test, and put me on Lyrica for wide spread nerve pain and diabetic nerves pain, I'm NOT diabetic, but this medication worked LIKE Magic! My prodrome pain disappeared. I saw a Neurologist and he ordered all test, my doctor was Jack-Ass , so this new neurologist doctor was a blessing. I've had over 20 doctors, all you need is the right one for this pain. He listened and I saw on images with colors heat sensors how these damages looked. He offered surgery I declined, so this medication was a God send to me. I do hope this helps. Keep us posted. Hugs Aces xo

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Paul1976

I also used to have constant itching and tingling however I have used vitamin b 12 2500ug once a day and it seems to really help - have you thought of taking any other vitamins?

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Acesheart
I also used to have constant itching and tingling however I have used vitamin b 12 2500ug once a day and it seems to really help - have you thought of taking any other vitamins?

I use vitamin b12 complex sublingual 1500 mcg' s twice a day, it goes under the tongue and is fast acting too. :)

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Sufferingfriend

Sorry OP, I am in the same boat. Most doctors are useless, but at least I got one now, who won't constantly argue with me about every damned thing related to HSV. Honestly, none of them really know much about HSV, and what they do is only from the majority who are assymptomatic, but what about the ones who get it bad? They treat us like liars and nut cases.

If I'm not breaking out, I am suffering CONSTANT prodrome. Honestly, the only time I can live like a normal person is when I have a OB. I can't wait to get a OB. I am suffering a lot right now. I can't concentrate on anything. Not a single thing. Not work, not play.

The ONLY thing that keeps me going is knowing it only started like this last summer, after years of HSV infection. Therefore, I have to believe I can dial it back. Hope at least.

I don't believe vitamin b12 can help, but I am going to order some from Amazon. Can someone recommend me a reputable brand? Someone was also saying this one vitamin for the gut can help. Does anyone know of this?

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Acesheart

The one for the gut is a Probiotic Asphydolpholis that puts good bacteria into the stomach. I use one from Dr.David Williams, order from Amazon, the b12 also from Dr.Williams. My husband uses Power Buffer Vitamin C, the more supplements and vitamins I can get from just one company, I try to keep it this way. I also use their Vitamin D, since menopause I was put on this one too. It's prolly more expensive then regular pharmacy, but to get everything delivered every month at regular times is well worth it. I've used Lifeextentions.com as well, but they didn't carry the Small Probiotic beadlets we like. They have a hard shell with allows it to get to the stomach intact and start to work/dissolve there.

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Sufferingfriend

Thnx, I am ordering it now. I'm feeling really stressed. I want to deal with other issues that need my attention, getting back into a relationship, spending time doing work more effectively, continue getting into shape. But this just holds me back. Hmmm, perhaps these supplements and being back in shape will bring me back in balance.

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Acesheart
Thnx, I am ordering it now. I'm feeling really stressed. I want to deal with other issues that need my attention, getting back into a relationship, spending time doing work more effectively, continue getting into shape. But this just holds me back. Hmmm, perhaps these supplements and being back in shape will bring me back in balance.

Yes friend having body and mind in sinc will help you regain that amazing person you already are. Using the vitamin b12 over decades has really helped me in BOTH those aspects of getting balanced. Good luck. Keep us posted. Hugs Aces xo

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beyonce47

Hi there, I was previously going through a similar situation in terms of my symptoms up until recently, and I totally understand how emotionally taxing it can be. For me, my constant prodromes stopped when I started on suppressive therapy, however it did take some time for it to kick in. How long have you been on the suppressives? If it continues, don't give up hope! I remember the utter terror I experienced when I thought that I may never be rid of these irritating symptoms for the rest of my life. But I kept pushing, and found something that works for me. I feel totally confident that you will too, even if the suppressive therapy isn't the best route. Read through some of the other posts on here, many people who have had problems with neurological symptoms have been able to alleviate their suffering using a range of different methods, from anti-depressants to accupuncture, and theres something out there that is going to work for you too. Do not give up hope. One day, hopefully sooner rather than later, you will be symptom free. Keep your chin up, and God bless.

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Bluevibes
I have never found anything in 12 years. Burning as I type this.

What else do you feel just burning? I have burning irritation feels like a constant rash..driving me crazy

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Kurdt01

My burning radiates throughout my legs pretty constantly. My urethra burns intermittently has well. Sometime I have muscle and joint pain, though the joint pain could just be from getting older, I'm not sure.

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Bluevibes
My burning radiates throughout my legs pretty constantly. My urethra burns intermittently has well. Sometime I have muscle and joint pain, though the joint pain could just be from getting older, I'm not sure.

Oh I see I just have a rash type feeling from around my anal to my genitals ..a nurse practitioner was the one that diagnosed me with H type 1 she swore it was type 2 however the results were type 1 and been having everyday day discomfort for the past like 3 yrs everyday..5 other drs say it's Not H including one Dermatoloslgist and 3 OB gYn and one General Dr ..

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Kurdt01

My Ob's switched to my rectum after two years. At one point the OB's were so chronic that the skin never completely healed...I still have OB's there but I can get the skin healed and keep it from getting worse. SITZ BATHS...it's about the only thing that ever helped me in any way. You can get one at the drug along with some Epsom Salts (which I get at the dollar store) just get straight up Epsom Salts (Magnesium Sulfate) with no perfumes or additives. I did this twice a day for months and it really helped. I still do it regularly, it helps clear out irritations. Use the timer on your phone and do one morning and night for 15 minutes.

This is kind of gross but something else that has helped is wiping with purell after Bowel Movements. I just put a couple pumps on the TP. I think one reason that area is so problematic is all the potential bacteria. Keeping it clean and dry with sitz baths and purell has actually helped me. At least my a-hole heals now.

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Bluevibes
My Ob's switched to my rectum after two years. At one point the OB's were so chronic that the skin never completely healed...I still have OB's there but I can get the skin healed and keep it from getting worse. SITZ BATHS...it's about the only thing that ever helped me in any way. You can get one at the drug along with some Epsom Salts (which I get at the dollar store) just get straight up Epsom Salts (Magnesium Sulfate) with no perfumes or additives. I did this twice a day for months and it really helped. I still do it regularly, it helps clear out irritations. Use the timer on your phone and do one morning and night for 15 minutes.

This is kind of gross but something else that has helped is wiping with purell after Bowel Movements. I just put a couple pumps on the TP. I think one reason that area is so problematic is all the potential bacteria. Keeping it clean and dry with sitz baths and purell has actually helped me. At least my a-hole heals now.

Thanks good info ill def try

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Ihaveittoo1975
Hi there, I was previously going through a similar situation in terms of my symptoms up until recently, and I totally understand how emotionally taxing it can be. For me, my constant prodromes stopped when I started on suppressive therapy, however it did take some time for it to kick in. How long have you been on the suppressives? If it continues, don't give up hope! I remember the utter terror I experienced when I thought that I may never be rid of these irritating symptoms for the rest of my life. But I kept pushing, and found something that works for me. I feel totally confident that you will too, even if the suppressive therapy isn't the best route. Read through some of the other posts on here, many people who have had problems with neurological symptoms have been able to alleviate their suffering using a range of different methods, from anti-depressants to accupuncture, and theres something out there that is going to work for you too. Do not give up hope. One day, hopefully sooner rather than later, you will be symptom free. Keep your chin up, and God bless.

I haven't really had issues with prodomes, just coming and going slight discomfort in lower abdomen, but six months into having this crap I was experiencing basically constant obs. I have been going through a very stressful stretch of my life so that probably has been part of the cause, but I finally decided that enough was enough. I went on daily 500mg Valtrex and it appears to, if not completely prevent obs, at least make it better.

How long did it take for you to notice any difference after going on suppressive?

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reallydepressed

I also have daily prodrome symptoms, it is around my mouth and inside my nose. Literally everyday I feel the burning/pain, it feels like my body is constantly fighting off a cold sore. I've been suffering for 10 years.

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Berliner

Same here- nearly constant OH prodrome for 2 years. Valtrex does seem to reduce but not eliminate it. Hearing about some of you that have had this for 10 or 12 years is really disheartening.

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WilsoInAus

@Berlineryour condition is most likely not herpes. It sounds a lot more like a pelvic nerve issue. Have you attempted to diagnose this?

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Berliner

Have I attempted to diagnose it? Actually I have spent thousands of dollars on testing and doctors, not to mention dozens of hours reading journal articles and forum postings. My only reasonable takeaway is that my symptoms are definitely caused by OH.

I don't know why so little credence is given to people who report having constant prodrome. Even on Terri's forum, when people say they have constant prodrome she seems to always doubt it's something caused by herpes. I am really not sure why.

It's funny how knowledge progresses. Not too long ago the consensus was that you couldn't pass the virus if you didn't have a lesion. Maybe not too long from now we'll hear, "oh yeah, turns out a lot of people have constant prodrome caused by the virus."

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WilsoInAus

This is because there is no such thing as constant prodrome. Prodrome refers to symptoms that occur in the hours before an outbreak. If an outbreak does not occur, then by definition, it isn't prodrome. People who have strong symptoms of herpes around outbreaks experience immense to complete relief from antivirals, they are that effective.

You reading will have told you that most people with your symptoms actually have a separate issue, usually a nerve issue within the back or pelvis.

You have the benefit of testing that suggests you do not have herpes. When all evidence points to you not having herpes, nor is there any additional treatment for herpes, why is it still reasonable to assume you have herpes? Most people will keep searching for a true cause to treat.

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Constant Diplomat

Well I had crazy nerve pain for a month after my diagnosis. Famvir didn't stop it.Three days after trying Valtrex out it was gone.

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Free73

I don't want to sound like one of those doctors that says 'stop worrying, it's just a skin rash'. But i'm convinced that 50% of the battle with herpes is a mental one, possibly more.

If herpes is constantly on your mind, then your mind will play tricks on you and you will take everything you feel in your body as 'prodrome'. I'm not saying it doesn't happen, but what I do know is that the more you think about it, the more you will think you are having symptoms.

When you take suppressives, you are in a constant state of worrying about it because you are reminded every time you take a pill that you have herpes. Perhaps try and get off the suppressives and just go about your daily life. If you get an outbreak, let it come and go. The reality is that herpes doesn't really affect your quality of life from a physical perspective, but it does affect it greatly from a mental perspective.  That's why this virus is more a mental game than it is a physical one.

Please take a look at this video created by Pain Australia. It might give you a different perspective on what you are going through.

 

 

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