Post herpetic Neuralgia HELP!!

Infections
1

i had shingles in October 2013 followed by what was assumed to be post herpetic neuralgia. I have tried all the various medication prescribed but appear to be allergic or react to all of them and none take you pain away.

i dont know what to do next, seem to go from pillar to post. 

I had an xray done about a year ago as, (because I was involved in a car accident 3 months prior to the attack of shingles) it was thought the pain could be due to something else. It wasn't but the radiologist said that if I had a certain nerve 'snipped' in my back (left hand side) all should be well. Has anyone else heard of this. My doctor said they didn't have anything in writing from the radiologist to confirm this. I really feel as if nobody is much bothered about this sort of pain.

I do know for a fact that having nerve ends burnt off can stop pain. I had this done (privately when I was covered through work) in my neck which stopped the migraines I had suffered badly with for years. I no longer have private medical cover unfortunately. 

I can can only sympathise with others who have suffered following shingles. The pain is HORRIFIC but the advice seems to be to take pill after pill and then If that doesn't dork have another ruddy pill.

2

Hi Barbara,

I can understand your pain.  I'm going through that now.  I'm sure the virus has cleared up but the pain it has left in the wake is, at times, unbearable.  I have learned to be very still and take short breaths until the worst part subsides.  Just when I think it's almost over it flairs up again.  I had a CT scan to make sure there wasn't something going on at the same time.  That came back normal so I just have to ride it out.  The pain meds he gave me didn't really do much and I didn't like the way they reacted on me so I just do what I can to minimize the pain.  I try my best to not stress since it seems to aggravate the situation even more.  Sometimes it seems like the medical world doesn't completely believe us when we try to describe the intensity of the pain. I have a very understanding doctor but he's done what he could. I do hope you find relief for your pain.  Hang in there!  You're definitely not alone. 

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Hi Barbara,

I am so sorry you are suffering. I have a few questions for you. Where exactly was the Herpes Zoster-Shingles? What type of pain exactly are you experiencing, ie burning ?constant vs intermittent? sharp, dull, pins and needles, etc. What medications have you tried, with what dose, for how long, and what reaction?

Is the post herpetic neuralgia in the exact area as the shingles was?

How old are you?

Where do you live?

I have had Herpes Zoster in my right ear every three to five weeks for the last 19 years. I understand your pain

Merry Juliana

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I have twice tried to reply but each time have lost the page!

i will try again later, but thanks for your swift response.

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sorry to hear that you too are suffering. Should I hear of something that works I will definitely let you know. I'm considering seeing a back doctor privately but wonder will it be a waste of money again, I've tried so many avenues.

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Hi Merry, 3rd time lucky!? I will be 67 next month, 65 

when I had shingles first time. I live in Essex in the UK.

ive had so many prescriptions that I can't recall all the names, although

Gabapentin was one as was Duloxetine. Also tried anasethic patches which irritated my skin and made me physically sick.

The pain, like being knived in the back with umpteen knives at the same time, Is mostly in the same  place, left hand shoulder blade and rib cage but not round to the abdomen. I've had 3 milder attacks since. Same pain. But less rash although my husband can see it under the skin. taken Acyclovir each time, although doctor appears doubtful. But I don't want the dreadful symptoms with the awful pain if I can prevent it a bit. It's a horrifying thought. I jerk and distort my body so much it as if I duffer from Torets.

Hope this helps you in your analysis of this awful condition. It has sucked the life out of me. 

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the doctor prescribed the Lydoderm patches to see if that would help.  When I went to the pharmacy to pick them up I was told it would be $199!  That's WITH insurance.  I don't do well with the adhesive on skin patches.  I tried hormone patches before and I break out in blisters from the adhesive.  Not what you want with already sensitive, painful skin.  I declined them because there was no guarantee it would even help. If he said it's 99% that it would help I would have gladly paid it.  Someone, some day, will figure out a great treatment. Someday.  Until then....we just have to do our best to get through it.

 

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Barbara,

If you live in the UK, don't you have National Health Insurance?

I am an NP in the US, so I am used to diagnosing and treating diseases. I am 63 years, by the way.

It sounds as if you are getting recurrent Herpes Zoster in the same dermatome. That is not the same as post herpetic neuralgia. You don't always get a rash with the reoccurrence. How long does the pain last each time?

I would ask the physician to be placed on Valcyclovir 1000 mg 3x daily for 7 days or Famcyclovir 500 mg 3x daily for 7 days , at first onset of pain! instead of Acyclovir as they are more efficacious in treating the Zoster-Shingles. It is very important to take the antivirals the moment you suspect you are getting another bout of Zoster, as it only gets worse. I have a stock supply on hand

Forget the Lidocaine patches for now. If you are paying for your meds, shop around . When I had to pay due to no health insurance, I ordered from Blue Sky Drugs online in Canada. It's by prescription, but alot cheaper than the states.

I am also on Topamax, an anticonvulsant for migraine prophylaxis, but I know that helps lessen the excruciating burning pain I feel in my ear and middle of my head.

With the pain, do you feel achy, feverish, fatigued as if you are coming down with the flu perhaps 5-10 days before the onset of the pain?

I do use Auralgon ear drops which has Benzocaine, a local anesthetic, which helps lessens the pain topically.

Are you allergic to Opioids?

When I get a Reoccurence, I take oxycodone 10 mg every 4 hours until the antivirals kick in in 3 days. Ask your physician for an opioid to help ease the pain. Shingles or Zoster, is known to be one of the most agonizing conditions there is. As it is neuropathic pain, it is the worst to treat. I stay on Topamax 100 mg 2x daily continuously to prevent the post herpetic neuralgia. Lyrica is also supposed to help with that.

Some people swear by the following that I will put in my next reply in a few moments. ...

how frequently are you getting these attacks and how long do these last?

MerryJuliana

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Barbara,

I must confess, I am not into homeopathy, (I come from a medical family) but some individuals swear by this.

Look on the Web re taking the amino acid Lysine and avoiding foods with Arginine. The scientific research controlled trials have refuted these claims that Lysine helps and Arginine worsens Zoster, but many people believe this to be true. Some people also like to encourage the B vitamins, but I know my Vitamin levels are high already and I get Zoster too many times to count! If you

eat nutritiously, you need not worry.

Are you immunocompromised or have an autoimmune disease such as Rheumatoid arthritis, Lupus, Psoriasis, ITP, Psoriasis, Sjögrens Syndrome? Are you satisfied with your physician?

I hope this helps!

Zoster can drain you, but please know we are here to help you so it doesn't drain your soul!

MerryJuliana

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Hi Merry Julianna

once again, many thanks for your reply.  I have taken on board everything you have said and will make enquiries when I next attend the pain management clinic and my GP.

yes. I do have National Health Insurance, but this only covers medication prescribed by the GP or pain management clinic. Private medical investigations are not free. Requesting a particular drug from the GP isn't easy, their attitude is they know best!

i will keep plodding on!

oh by the way, vodka and diet coke is a wonderful Pain reliever but I only resort to this now and agin!!!

bye for now

 

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My pleasure, as always.

Perhaps you could change the GP.

Merry Juliana

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Hi Barbara. Please excuse my techy ignorance during this discussion, I am desperate to speak to someone who understands this such debilitating pain.  Never used a discussion website before. 

I live in UK, healthy, active 60 year old. Fifth week withPHN. Medication started at 8/500 cocodomol, then 15/500, then 30/500. No joy, then tramadol- ga ga within 24 hours, now liquid morphine with 30/500 cocodomol. Still climbing the walls. 

Trying to be patient, but last night patience ran out and a few tears flowed. 

When friends and work colleagues pop in  , it takes my mind off things . I sit straight and still. As soon as I move the pain reminds me it's not ready to leave!!

Apart from Dr visits not been over the door. Please any words of wisdom ? Many thanks

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Hello Alexi,

I suffer from Zoster-Shingles every 3-5 weeks for the last 19 years in my right ear. I understand the debilitating and excruciating pain that post herpetic neuropathy is. I am also a compassionate year old Nurse Practitioner in the US.

The cocodamol will do nothing for the pain, as you have found.

Where was the shingles rash?

Do you have any other diseases? Do you take other medications?

As Zoster is a neuropathic pain, eminating from the nerve root, it is the most difficult to treat. Therefore, you need to take a multifaceted approach.

Switch to Oxycodone 10 mg every 4 hrs. It often works better than oral morphine tablets as a central nervous system opioid analgesic.

Next, you need to take either Lyrica, Neurontin, Topamax, any medication that dulls the neurons firing, and thus dulls the neuropathic pain. You often need to titrate up on this medication.

I hope this helps. I too understand agonizing pain as I have rocked back and forth on my bed, wanting to cut my entire ear out the first time. It took 3 ENT doctors before it was diagnosed.

I am not a believer in homeopathy, but some followers of this site swear by my second post.

Merry Juliana 😊

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Hello Alexis,

Some individuals take Lysine, and avoid Arginine in their diet. If you Google shingles and Lysine, you will find Web sites filled with information regarding this. I naturally eat foods high in Lysine, and avoid foods containing Arginine and it has not prevented my recurrent Zoster.

Best wishes.

I am sorry you are suffering so.

This too shall pass.

Merry Juliana.

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Thank you Merry Juliana, I will research your recommendations and write back. 

My rash was round left hand side of torso from middle to back, 5 - 6 inches in depth. 

The only other ailments I have is high blood pressure- taking medication for this and a very itchy scalp. Stress definitely makes this worse. 

Thank you again. For info just taken another 2 cocodomol sleeping in the day but not at night , loss of appetite and constipated. Drinking plenty of water.

16

The codeine can cause scalp and skin itching. All Opioids cause constipation, which you probably know. You can ask your doctor for a stool softener. Also, you can eat bran flakes daily for constipation.

Merry Juliana

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I didn't know codeine can cause scalp itching. I leave a trail of snow dust on furniture, car - although too painful to drive at the moment and bed linen. Hair falling out - evidence in the Hoover. Never felt such a wreck. How do older folks manage to put up with PHN especially if they are living on their own? 

Thank you for the chat !

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Did the itching start AFTER you started on codeine? I have severe drug allergies and had to become a detective to discover what was causing extreme generalized itching. Are you on a Statin for high cholesterol? Do you have dry skin, or been diagnosed with eczema, hayfever, or asthma? There are reasons I am asking. Also, did you start any other medications recently and when did the itching start. The itching can drive one mad, as well.

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I have itching for 6 years or more. I use bettamousse cutaneous foam. Also coco is coconut oil compound ointment. I generally have dry skin and moisture regularly.

high blood pressure started nearly 11 years ago after a family tragedy.

i always thought I didn't have chicken pox during childhood. My granddaughter who shares her birthday with me and is 7 this year also hasn't had chicken pox, despite epidemic at school.

Just has 2 cocodomol today, considering taking 5ml morphine now, to see if I can get some respite from this pain, my partner is with me. 

Normally I would take it at bedtime. Instructions on bottle say when required.

 

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Are you using coconut oil on your scalp. Do you have Psoriasis?

Do you have food allergies that you are aware of?