POSTHERPETIC NEURALGIA
Posted , 11 users are following.
I have had PHN for 3 years now and there doesn't seem to be an end to my pain. I attend a Pain Clinic in Oxford and the consultant does his best for me. I now have injections into the back of my head, this has suppressed the electric shocks that I was getting from the damaged nerves in my spine. I take amitripyline, gabapentin and propranolol, these give me a good nights sleep but do not give me any relief during the day. Some days I don't know how I am going to go through, I have so much to do and have a dog to walk. I don't get any sympathy from my husband, if I say I don't feel well enough to do a job he just thinks I am being dramatic! If I remind him that I am always in pain and don't feel well he just says that he is sick of my moaning about my illness. I only 'moan' when he has put me under pressure to do more in the cottage we are renovating. I am 60 now and this is the first time in my life that I have been ill, I wish I had the money to run away and live in a little cottage on my own.
1 like, 15 replies
Guest
Posted
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.
Guest
Posted
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
Magenta
Posted
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.
Captain247
Posted
So can any one tell the type drug i can take ,that we make me to be relive.
paphos
Posted
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.
Tiffan
Posted
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
Captain247
Posted
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
abcme
Posted
Regenerative Nutrition (ship worldwide) and the pain has lessened by 80%-90%, he seldom complains
now and is much much better. Worth a try.
Tiffan
Posted
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
lasse
Posted
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.
steve_1
Posted
Tiffan
Posted
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
steve_1
Posted
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?.
brian58161
Posted
timsin
Posted