2nd outbreak in 5 yrs, but very bad! 3wks and counting!

[Joanne]

Hello

need some advice! how long does the itching last?? i need sleep!!

im 33yr female, very petite and husband gave me virus after he had affair 5yrs ago.

Am 3 weeks now into 2 'attack' - been a week on 800mg aciclovir 3 times daily, can now pee / poop ok ( admitted to A&E 1 week ago with urine retention - they cathed me & drained 1.3ltrs - also gave me 'stool softner' - my gosh they work!!) feel million times better BUT am faced with chronic itching off my poor bum crack, anus, buttocks and my cervix is still v itchy too. also, this area is very 'numb'. weirdly my feet are also mad itchy. its driving me NUTS. Been like this 3 weeks now and showing NO sign of leaving. cannot sleep - worse at bedtime - tried heat (i think it makes worse) cold flannels (5 mins respite then BAM back times ten) - my skin is raw and i am drawing blood. tried topical creams, salt baths, oat masks, painkillers, massage therapy you name it - nothing working. i read that it is nerve damage from sacral region - which makes sense as this is why could not wee and poo - nerves swollen and infected with virus. does anyone have any advice?

[Cedar1122]

Joanne,

 

Oh wow. I'm sorry to hear all of this! Have you tried an antihistamine like benadryl? It would help you sleep at night too. It sounds so simple compared to everything you've tried; but I work as a nurse and it usually solves the problem. I also understand that this is a different kind of itching and it very well may not work- but I wanted to offer it. Also, sarna anti-itch lotion has a really great reputation with my patients.

 

Good Luck!!

-Katie

[Joanne]

hello Katie!

 

many thanks for replying to my comment/thread. i am amazed and feel its a great thing that we all muck in and help understand this 'herpes' disease which seems to manifest itself however it chooses!! sufferers know and hold the answers.

 

yes, i tried piriteze, one tablet a day for 3 days - i was thinking around same thing - anti allergy - but sadly it did zilch! - this is what led me to researching 'fake itchy skin' /nerve damage. been awake all night on google - and results are in! - it sounds like i have Post Herpetic Neuralgia (PHN) - every single symptom described rings true to me - i also think i was borderline Elsberg syndrome - or suffered it - altho it only lasted 3 days with urine retention and complete constipation ( i was totally paralaysed). my other symptoms are also very extreme - my leg ache for example and 'jelly bones' made it almost impossible to walk over 15ft unaided. i had fever, agonising lower back ache and itching/burning/serious genital pain inc. piles! my feet were super sensitive and i felt like death. i would toss and turn every second of the day, was bedbound for 5 days and would have scratched down to the bone if i was stupid enough. i believe i was terribly unlucky and the virus hit me so hard. been on aciclovir 1 week and feel turned a corner but nerve damage is holding me back - a lot!

 

however, tomorrow i have docs appoint at 10.15am. i am going to ask about epileptic drugs and antidepressants - it seems there are couple of these drugs out there that can ''turn volume down'' on PHN although treatment can last anything from 3 weeks to 3 years :( or indefinatly ...... (also googled how to sue bfriend who gave it to me! hahaha - but sadly here in England no one seems to do that)

- to sum it up - AS SOON as you feel an OB coming on - get on antivirals as leaving for 3 weeks like i did has done severe damage to my nervous system in my sacral region/spine and god know how long my nerves will take to recover - in meantime i am a sufferer of PHN.

 

so sorry for typos but not slept for 46 hours and run an equestrian farm so knackered!! (maybe that is why am so affected by this OB?? - rundown/stressed/worn out?? - even tho i take vits& minerals every day)

 

will keep you posted!!! x

 

 

[Cedar1122]

Joanne,

 

I'm so sorry to hear about what you're going through. I wish there was something I could do to help!

Thanks for the information. I'm wanting to use anti-virals more now that I know all this. I hope you've been able to catch up on some sleep!

Let me know how it all goes!

-Katie

[Kristin (breatheandletgo)]

Joanne,

 

I am also sorry you are suffering. :( Sending you a hug...

 

Kristin

[Joanne]

hi guys!!

 

thanks for your positivity - must be working as today for first time in near 4 weeks feel FABULOUS!! Am now on medicine i demanded from doctors thanks to this wbsite and other ones (GP was non-plussed when i arrived in his surgery with list of medicines i wanted!) he finally gave me a huge box of Gabapentin and extra aciclovir (so i can self medicate as soon as feel symptoms in future) he also insisted on giving me high strength anti-allergy tablets as he was insistent the itching was skin and not a damaged nervous system problem -

 

i am now on day two of gabapentin (generic dosage is: 1 tab 1st day, 2 tabs 2nd day, 3 on 3rd day, 3 everyday thereafter) and this drug WORKS! i took tablet walking out of pharmacy and within 20 mins 70% itching subsided ..... after 5/6 hours i could feel itching returning and that night it seemed worse than ever, despite taking strong anti-allergy tablet (it did nothing) it came back with a vengence and i got no sleep, in fact at one frenzid moment at 4am i had to stop myself scratching and gouging my raw skin between my butt crack with a fork .... ouch .... i counted down the hours pacing until reached 8am this morning when took day two 1st tablet - within 30 mins i was in bliss - no itching!! nothing bar the occasional twitch. i slept for 5 hours and woke fine - despite back ache (at bottom of cocix) i had no itching - i could even put on jeans - rather than jogging pants as felt didnt need to get easy access to scratch!

 

i have just taken 2nd tablet, its 10.30pm here in England and i cant wait to get in bed!! The relief from the itching/electric shock/bubble feeling/insect feeling/twitches and jerks is immense. i have felt brilliant all day. focused and positive but exhausted and drained, however life is easier with sleep.

 

I still have problems peeing - it feels like ''will it wont it?" and its SUPER itchy on vulva when you touch it with loo roll - and my poo is still constipated and has a mind of its own - going once a day with laxitives, but v dry and as still completely numb in whole genital region (my ass hole is worse - honestly you could stick a foot up there and i'm pretty sure i wouldnt feel it - no joke) i do not know when a poo is coming either, other than feeling my gut twinge about 3 seconds before a start pooing - and then it just all comes out automatically until its empty. i am like a baby. Yes, i have had accidents, but am lucky in that i work from home. How the hell you would hold down a job when you have an outbreak like this is unthinkable.

 

i will keep you posted with results. i aim to wean myself off aciclovir from this friday, and will give myself a week on gabapentin before i try to wean off that! in meantime i have also booked nutritionist to give me full service and hair sample test to see what body is lacking in. They say Elsberg / PHN only happens really to comprimised immune systems. mine is not - blood tests say so - but maybe i need more vitamins!?

xxxx

 

 

[DrSuz]

Just saw a naturopathic doctor today and she recommends St. John's Wort (herb) as a tincture as well as monolaurin AKA lauricidin which is a supplement derived from coconut in pill form. Don't know how you feel about supplementing with natural substances instead of pharmaceuticals... You can check it out with your doc if you are concerned.

 

You can also talk to your body (sounds weird I know) and tell it that it is super smart and healing itself... Or just say "thank you and I love you" to your body. Bodies love that!!!

 

Hang in there!!!