Post herpetic Neuralgia HELP!!

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.

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.

 

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

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

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. 

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

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

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

 

My pleasure, as always.

Perhaps you could change the GP.

Merry Juliana

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 😊

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.

Hi Alexis

Apologies for the delay in replying. I decided to go 'private' and had the follow up appointment this morning. Ive had an MRI scan done to rule out another cause for the pain. Although there is wear and tear down the spine he didn't think it severe enough to wholly cause this pain. However is suggesting to my GP that I have a thoracic epidural injection to relieve mw of some of the pain.wont hold my breath in GP agreeing to do this! Im also taking Solpadine tablets but thwse canonly be taken for 3 days and the leave off for a day asthey are addictive. The pharmacist told me this NOT the GP who suggested them!

So the PHN goes on. I completely understand how you feel. Im amazed tho that nobody medical has a remedy and as far as im concerned getting anywhere fast is a no no. Im noq going to start taking Lysine as other suffers seem to find this of help, so off to Hollans & Barratt in the morning.

Thank you for getting back to me. I tend to have a healthy diet - thank you to my partner. However I will investigate Lysine in more detail . At the moment I don't care what is addictive, I will try it!! 

Got to say, the couple of comments I have received from this site has helped me realise I am not on my own, but being fortunate in health, PHN has really pulled me up. 

Please keep in touch with your outcome.