POSTHERPETIC NEURALGIA

Pauline,

I am age 76 years and have been suffering with PHN for only seven weeks.If your husband can do no better than that you should consider leaving him.The pain is excruciating, and I am lucky that my lovely wife listens to me and is totally supportive.

I hope that you can soon start to feel better, and I certainly hope that I do not have to endure this unbelievable pain for as long as you have done.

Tell your husband to be more sympathetic and give you a little more TLC.

Dear Pauline,

My heart goes out to you. I have the same, the last seven years have been so hard. The pain is shocking. I live alone, so I don't have to suffer as you do.

At times though I feel so helpless it makes me weep. Wondering if I must live the rest of my life with a hornet's nest under my skin. I am fifty four, going on ninety. Like you, I am trying to do up my house, but I can only manage about an hour and a half each day so progress is slow.

Still, I am trying not to think about the future.God, this is a cruel illness.

Anyway,just to let you know I am thinking of you and hope that you can get some understanding.

All the best to you, and everyone else in pain.

Shirley

Hello

A relative has suffered with terrible pain for over many months and spasms from the nerve reactions..they have just bought a( back support) which tightens around the area of the back causing the most discomfort and this is providing some relief! Don't give up keep trying ..i thought this might help someone else.

I first have chicken pox and later i discover that am having pain in my forehead..this pain make me feel sad..

So can any one tell the type drug i can take ,that we make me to be relive.

I developed PHN in the last week of July 2012. The lady has my sympathy but I suspect her husband will be unable to understand how severe the pain is, since it really is unimaginable. In my case the pain is so severe with every movement I want to scream.

I have had sarcoidosis since 2001 and because of this I already take 100mgs morphine & 200mgs Pregabalin per hour + others and consequently have difficulty to take higher dosages in a bid to have more pain relief.

Currently I am trying to get advice from the Pain Control team at Barts (who regularly treat me for existing pain) in the hope they will be able to help. If so I will pass on the details via this forum. Meanwhile I am concerned I will become so desparate I might accidentally overdose.

Hi Everybody

Pardon my english, but I'm danish, hope you will understand it:-)

I really feel with all of you. It is a mean disease and really hard to explain to people around you.

I'm 36 years old and have Post Herpetic pains. It startet 3 years ago with pains in my left ear, sometimes in my cheek or throat. Went to the doctor who gave me pills for middle ear, sore throat and sinusitis. The pain got away for a while and then it came back. This went on for over a year and then the doctor suggested that there could be something wrong with my teeth, went to the dentist and yes I was so lucky to have an old inflamed tooth root. Had to have a surgery and the root was good again. But the pains kept coming. Sometimes like an electric shock in my head and burning pains. Started going to the doctors again when my left cheek went "dead", not much feeling and my head started to get a little bigger on the left side, and one of them suggested that I might have Post Herpetic pains. I am born with Herpes, so I started on Aciclovir when I would get an outbreak of herpes. But the pain was still there. Then he gave me some medicin Tegretol (think you know it) the one you give people, who have epilepsy. I didn't work. Then I tried Gabapentin, didn't work either, so I went back on Tegretol again. Killed the pain a little bit.

At this time the pain has also moved to my left arm and leg, But it would sometimes go away completely. Then one day at work, I got a blind spot on my left eye for ca. 30 min, I got really scared and went to the doctor again and he sent me to a neurologist. They scanned me and didn't find anything, but I had a good talk with the neurologist and he gave me some new pills Trimonil. I now take 4 of them during the day, I think they are helping a little bit, because if I miss one it gets worse. But the pain is also getting worse, now it is back in my left arm all the time and this monday I had the worst night ever. The pain came back in the left leg again. It hurted like hell having the blanket on and did not get much sleep.

This is the short version of my story.

My pains are like itches and burning under my skin in most of the left side of my body, they are worst in my cheek, ear, neck, throat and mouth even half my tongue is sometimes feeling like sleeping. Sometimes it hurts like hell brushing my teeth. My left arm feels sometimes annoyed if my clothes is to tight on it.

Do you know that feeling that of you want to hit yourself, because that pain is "better"?

And it is not just the pains, I'm not as social as I used to be, really have to pull myself together

sometimes. Even at work it is hard to concentrate sometimes, and I forget things even words.

The pills I take don't go with alcohol it says in the instructions, but I do drink sometimes, just getting "drunk" faster, give me 2 drinks and I'm happy:-)

Don't now if it is the pills I take or the disease, but I can smell things that other people can't smell and if people have a bad breath I can taste it in my mouth. Have any of you experienced this?

I have tried cranio sacral, it made the pains smaller sometimes. I have been to a Medicinman (homeopath) and I'm waiting for the pills to come from England, still have to take the medicin, but he said that if they help I should be able to get of the medicin. Really do hope they help otherwise I will try acupuncture. Have any of you tried that?

Tiffan

Please let us know if you have a new drug for this, that can take away the pain and that will not come back again.

Second let us cast everything unto God ,because he is the one that can take away all our diseases...let keep praying that he should Heal us.

Thanks

My Dad who is in his eighties took bad shingles and was left with terrible pain, nothing worked from the doc at all. I searched and searched for something to help with the pain of PHN and found Serrapeptase from

Regenerative Nutrition (ship worldwide) and the pain has lessened by 80%-90%, he seldom complains

now and is much much better. Worth a try.

Hi again :-)

I went to the Medicinman (homeopath), and got some nature medicin and it is working. The pain is to live with now. Somedays the big pains comes back, but at least it is not everyday now. I even have days where I don't think about it. My nature medicin won't work on you, you have to go and see a homeopath, then they can give the right medicin and hopefully it will work on you. I am still on the epilepsy pills, but I see the light now, and I am pretty sure that I won't have to take the pills and the pain will be gone completely someday in the future :-)

I wish you all the best :-)

Tiffan

Hello Tiffan

Can you send me the details of the homeopath, I am also from Denmark and my friend has PHN so It will be really cool, if you could send me the the name and adresse.

She is only 26 years old and have the symptoms inside her body.

You can post it hear or send it to my email

Lasse

Emis Moderator comment: I have removed the email address as we do not publish these. You can use the messaging function to send each other private messages.

Hi. Ive had P H N for about 7 years. I didn't realise what it was at first as my doctor told me shingles lasts about 2 weeks and he didn't mention after affects. I spent a small fotune on chiropractors. I googled the symptoms and found I had P H N. I was under the impression that P H N only affected one side of the body, in my case it's switched sides. I'm now on amitriptyline and tramadol which together seem to deaden the pain to a tollerable level. It's more like electric shocks now.

Hello Lasse

Have sent you a privat message in here.

Steve: I have also had these electric shock and they are not fun at all. My advise is to contact a homeopath. I got to the point where I would try anything and a friend suggested a homeopath. And I have only positive things to say about it. I still have pains sometimes, but it is nothing compared what it used to be. I am more social now, feel more and more like the old me, if that makes sence.

Hope you will get better.

Tiffan

I've noticed lately that my left leg tends to get cold when I'm sitting around for any length of time. I've tried moving to a different position and, as it still occures in the left leg, I can rule out geographic position.

Now it gets a bit complicated. My PHN started some years ago in the left side of the neck and shoulders,but, for the past couple of years it's affected the right hand side neck and shoulders. Could the cold feeling be caused by the Herpies virus?, or is it something unconnected?, or, should I just forget about it as it is , after all, more a discomfort than a problem?. Who would ever have believed that a childhood ailment like chicken pox ( which, incidently I never actualy suffered with ) could make life so miserable in an adult?.

My sympathy goes out to you. I'm at almost a year and a half into PHN after having a left back to chest/navel dermatome shingles infection in July 2012. The shingles was horrific for 7 weeks. The PHN has been a debilitating misery. My doctors tell me that I've been lucky to get relief with medication, notably with amitryptyline and more recently with nortriptyline. Although the acute pain is under control, the nagging, tiring constant low level pain and sensitivity knaws at you and wears you down. To your point about the sensitivity of people around you to something that they cannot conceive of nor relate to, it can be disheartening when you realize that you alone must bear this lonely curse. Hope this note cheers you up a bit. It know it can't but whenever I read about poor souls suffering worse health misery, I thank g-d that I only have to endure my current afflictions. Write back as often as you like. I'll be happy to respond in kind.

I am a 35 year old man who developed herpes zoster opthalmicus about 8 weeks ago. My consultant prescribed antiviral drugs (a tablet version of zovirax I think, could be wrong there), steroids and zovirax cream to put on my eyelids The pain as you all know was incredible, I was glad when the virus was 'beaten' and travelled back up the nerve to lie dormant again. However, my relief was short lived as I continued to experience the pain of shingles after it had been 'beaten', the pain is constant but typically from late afternoon to late evening I am experiencing unbearable pain; it starts behind my right eye and brow as a deep, intense ache, this is quickly followed by 'bolts of lightning' travelling from my right eye, up my forehead, across the top of my head and tends to concentrate at the base of my skull, where the spine meet the skull. I have been diagnosed with PHN and prescribed steroid eye drops, pregablin and tramadol. When an attack occurs the painkillers do take a lot of the pain away but not all of it by a long shot and I still get the 'bolts of lightening' travelling across my skull. I tried this evening to see how painful an 'episode' would be without my painkillers today, so I could get an idea of what I am truly feeling; within 2 hours the pain was absolutely unbearable so I took my painkillers. I have also lost my appetite completely, apart from the occasional craving for sweet food which I don't normally eat. I also have no energy or enthusiasm for anything which, again, is not like me. I am very worried about what will happen in the coming months/years and the amount of time I have had off work is now making me stress out about losing my job, if I do I will lose my house, everything I've built up over the years working hard. I work in a chemical lab so I cannot return to work where I handle extremely hazardous chemicals constantly, until I am 100% fit again. As I've read that PHN can last for years I am so stressed and worried I haven't had a nights sleep since the shingles itself started. I feel like I'm losing my mind, I know that sounds dramatic but it's true