Over half the 194,000 people with shingles each year (that’s the number for England and Wales) are affected by post herpetic neuralgia (PHN).
PHN is the name given to the shingles pain when it has been going on for a month or more after the shingles sores have healed.
Shingles is not something that other people will catch from you.
PHN can be felt as itching, irritation, stabbing, burning, tingling, supersensitivity, numbness or soreness but to simplify our text we will always call it “pain”. If this happens, it will be in the area (dermatome) where you had the shingles – not elsewhere on your body.
It may begin as the symptoms of shingles subside and can last a few weeks, months or occasionally years. It can appear several weeks or even months after the shingles has gone.
PHN happens when the chickenpox virus damages a sensory nerve during the shingles outbreak. The damaged nerve sends abnormal messages or even stops sending them so there is numbness. Sometimes there can be changes in nerves in the spinal cord – this is why cutting the affected nerve does not stop the pain of PHN.
As you get older, your chance of developing PHN increases.
It is difficult to treat this kind of pain. Your doctor can prescribe strong pain killers, but often these have little effect on PHN, although Tramadol has been shown to help. Other strong prescription painkillers (opioids) have helped some people, so they may be worth a try.
Other forms of medication that your doctor may prescribe can be surprisingly effective. There are pills, plasters/patches and creams – so don’t give up hope:
1. Antidepressant drugs: If your doctor has prescribed one of the tricyclic drugs to combat PHN, you may find it causes drowsiness and/or a sensation of ‘dry mouth.’ The most commonly prescribed drug is amitriptyline. You should start off at a very low dose, probably 10 mg, and gradually build it up. ‘Dry mouth’ can be alleviated by sips of water or fruit juice, or by sucking a sweet or mint. (NB you can buy sugar-free or diabetic sweets if you are controlling your weight.) These side effects will wear off when you’re used to the treatment. As Mrs S. reported: “… it did ease the dreadful pain. I had one or two side effects when taking the pills but I could cope with them – to ease the pain was the main thing and amitriptyline did that.”
2. Anti-epileptic drugs: Gabapentin (which was developed to control epilepsy) has been shown to be an effective way to block PHN and has been licensed by the Medicines Control Agency for treating PHN and other neuropathic pains. (In the US it is now used more for controlling pain than epilepsy!) Start with a low dose, probably 300 mg twice a day, and increase over the next weeks/months. It does not interfere with other medication you may be taking and has remarkably few side effects even with dosage as high as 800mg three times a day.
3. Axsain cream (made from chilli peppers or ‘capsaicin’) has been proven to be effective at stopping the pain. You rub it on, or near, the place where the nerves are itching/painful, that is, in the same dermatome region. If the pain is near your eye or under your hair, you can rub the cream on your cheek well away from your eyelid, or on your forehead. Use a small (pea sized) amount 3 or 4 times a day for about 3 weeks. It stops the pain for seven out of ten people. Since Axsain cream can ‘burn,’ some people rub in an anaesthetic, or numbing, cream about 15 minutes before applying Axsain. This is ‘lidocaine BP’ which can be bought, without prescription, as a 2% gel or a 5% ointment. If your chemist doesn’t have it in stock, s/he should be able to get it in for you. Lidocaine 10% spray can be bought under the brand names Xylocaine or Stud.
4. Versatis plasters are large ‘patches’ which can now be prescribed for PHN. These are made with a special gel allowing the active ingredient, lidocaine, to seep into your skin. You wear one for 12 hours (day or night as you prefer) on or near the painful area and leave the skin open to breathe for the other 12 hours. They are particularly helpful for people who don’t want to take pills.
5. Chilli pepper patch – “Qutenza (capsaicin) 8%” is a new treatment that medical personnel at specialist pain centres around the country are being trained to use. It is a skin patch containing a synthetic equivalent of the naturally occurring capsaicin compound found in chilli peppers. A doctor or nurse will numb the area using an anaesthetic cream and the patch is then applied for one hour. This treatment should reduce or eliminate the pain of PHN for three months, after which the treatment can be repeated if it has helped.
The Shingles Support Society’s 17-page information pack includes 2 pages of ‘Readers’ Tips’ – you can see some of them here. These are suggestions from others who are living with PHN. These are alternative ways of dealing with pain. These have not been proved scientifically, so we cannot endorse them but people have told us that they find them helpful. Send a small donation to the Shingles Support Society. Or you can buy it here.
Transcutaneous electronic nerve stimulation (TENS) machines give tiny buzzing sensations and these prevent the nerves from sending their false pain messages to the brain. You should be able to try a TENS unit before you buy it to see if you are one of the people who benefits from it – or make sure the company has a money-back guarantee.
There is a vaccine provided by GPs for people who are 70 to 75 and 78-79 on September 1st, 2018. In September 2019, people who are 76 will also qualify for this vaccine. It prevents half the cases of shingles and lessens the severity of the cases that do happen. We recommend, therefore, that you have this vaccine if you are in the age group.
The Shingles Support Society’s 17-page information pack includes a list of patients like you with PHN who would like to hear from other people. Often communicating with someone else who knows what it feels like can be helpful and reassuring. Please let us know if you would like to be added to the list. Send an SAE with a small donation to the Shingles Support Society; or you can buy it here.
Your doctor could refer you to a pain clinic: either NHS or private. Look for one on this website: http://www.nationalpainaudit.org/
If you send your postcode to British Pain Society, Churchill House, 35 Red Lion Square, London WC1R 4SG ([email protected]), they will send details of your nearest clinic.
British Pain Society has patient leaflets on treatments and self-help that you can download.
The Shingles Support Society is a sub-group of the Herpes Viruses Association (HVA) a registered charity, offering support to patients. As a voluntary organisation, we depend on your donations to enable us to continue to serve the community – we rely on your generosity.
Please would you make a donation? Any amount will help, no matter how small. Cash or postage stamps, cheques or postal orders (made out to ‘SSS’) will help to ensure our work continues. Click here to find out how to donate. Or you can click through to the shop area here and go down the page to where you can order the full 19 page “Shingles Information Pack” as described above.
Perhaps you would consider making a legacy. Thank you!
Marian Nicholson, Director
We know that many people leave money to charities in their wills. We would really appreciate it if you would consider this kind of donation. If you already have a will, you can leave something to the Shingles Support Society in a codicil, that is an addition to your existing will. This is easier (and cheaper) than getting a whole new will.
We were left money by Mr Stone, whose son informed us: “My father found the information that you supplied made such a difference to his quality of life in his final years that he wants others to benefit as well.”
Mrs Scott’s church arranged a special collection for us in her memory and donated it to our charity. We were very touched.
Mr Goldman asked the Rotary Club he was very involved with to send the money raised after his death to us. “The Shingles Support Society is my favourite charity” he told them.
As a registered charity (no. 291657) we submit details annually to the Charity Commission so that it can ensure that we are fulfilling our constitutional ‘statement of aims’. You can be sure that your legacy would go to help spread information about treatments for shingles and PHN to everyone who needs it.