Sorry for the poor quality of the photos, if you look carefully, you'll see the red, blotchy rash under the hair. This covers much of the right side and is difficult to see due to my hair, my hair has thinned quite a lot and the red rash itself burns.
Dear Victoria,
What you are experiencing is indeed Herpes Zoster-Shingles Oticus or Ramsay Hunt Syndrome. Ramsay Hunt syndrome is defined as VZV infection of the head and neck that involves the facial nerve, often the seventh cranial nerve (CN VII). Other cranial nerves (CN) might be also involved, including CN VIII, IX, V, and VI (in order of frequency). These Cranial Nerves explain the involvement of your mouth and throat.
As your scalp is involved, on the top of your scalp, it would be C2, on the back, C3. As it only involves the right side of your body and has a burning quality of pain, that is Herpes Zoster-Shingles.
May I ask your age?
Do the scalp and mouth and throat lesions come and go?
Do you have any autoimmune diseases, IBS, cancer, take corticosteroids, DMARDS?
Your neurologist is abysmally ignorant regarding Herpes Zoster-Shingles. You need to find a neurologist who is up to date regarding the disease, diagnosis, management, and treatment.
I am a Nurse Practitioner in the States.
I have had Herpes Zoster-Shingles in my right ear, mouth, and throat every three weeks for the past 23 years and twice in my right eye. Three years ago, it spread to my entire right scalp.
I am going to close this post, as my connection is spotty. I am on a ferry.
will continue
Best Wishes
Merry Juliana
Victoria,
I realize that your NHS in the UK is restrictive regarding shingles. However, I know you can get a neurologist associated with a university. Fibromyalgia and chronic fatigue syndrome, while they exist, are explanations that physicians use when they can't diagnose the pain. You need an inquisitive and sharp neurologist, and also a referral to infectious disease. Often Lyme Disease, Multiple Sclerosis, ALS, and Shingles are given these catch all diagnoses.
In the States, I received the Shingrex vaccine, and while it hasn't completely resolved my episodes, it has markedly decreased the severity of the episodes, and therefore, my quality of life.
Please know that the chronic burning pain takes its toll on you.
Exhaustion and Fatigue frequently are chronic with shingles.
And of course, lets not forget Depression!
Doctors make it worse by denying you have anything wrong!
These are the medications I still take for the Post Herpetic Neuropathy and Acute Herpes Zoster-Shingles pain. Prophylaxis Propranolol 40 mg 4x daily. also for arrythmias and HTN
Venlafaxine SNRI Anti Depressant (Cymbalta is also recommended! ) 300 mgs daily really helps
Topiramate an anticonvulsant, off label use 100 mg 2x daily reall helps
Acute severe pain Oxycodone 10 mg every 6 hrs as needed
Victoria 3rd post Auroguard ear drops with Benzocaine, very soothing!
For the Scalp- My concoction this helped my scalp tremendously!
Bactine First Aid Spray or Lotion contains
Lidocaine to lesion Flonase or Nasonex (fluticasone) nasal spray a cortisone nasal spray to scalp lesions after lidocaine Bactine spray.
Use both 4x daily Also, cool compresses or ice. Avoid hot water, showers, as that increases the pain. I use baby wash on my face and scalp as it is super sensitive. not generics. no scents .
Hi there,
Thank you so much for your reply, it's a comfort to hear a health professional take my symptoms seriously. I'm thirty seven and although I haven't been diagnosed with an autoimmune disease, I highly suspect I have a weak immune system! Yes the legions come and go regularly, I seem to get them every 6-8 weeks, and the pain intensifies for some time. My latest outbreak came a week or so after having a large tattoo, my first outbreak 2 years ago happened a few weeks after having a large tattoo done too. I'm so sorry to hear that you've been through so many years with this awful virus! I have looked into seeing an infectious disease specialist but my finances held me back, I'll certainly revisit this though. I will also look into finding a neurologist attached to a university. I feel like I've been living half a life and have made my world smaller due to depression and sheer exhaustion, I have to work so my social life suffers. Thank you so much for your advice, I can't tell you how wonderful it is to be taken seriously!
Victoria,
Often Shingles occurs after a traumatic injury or surgery. A tattoo would count as trauma. My first Herpes Zoster-Shingles episode occurre Ford one year after head trauma (skull fracture) due to a car accident. Guess where the scalp lesions showed up first ? In the dented skull! LOL!
Do you have family support? My family has been supportive, but it is difficult for those who do not have it to understand the disease.
I would strongly recommend your getting Valcyclovir or Famciclovir. Acyclovir often is the least efficacious. I know the UK uses it because it is the cheapest, but the virus often is resistant to it. Everytime you have a new episode, you should start a 10 day 3x daily Famciclovir 500 mg or Valcyclovir 1000mg.
I would ask if there is any way you could receive the Shingrex vaccine. I know the UK is restrictive regarding the Shingrex vaccine, but perhaps there are research studies. (I love the UK, BTW, and but dislike insurance that deprives people of medication/vaccine that would help them.
I'm 44 with it and my son was 14 when he got it (although the Dr did say that was rare) so age is pretty relative with this- its not just for elderly. Your symptoms are pretty different than mine though. I had pain for about 2 days then a rash popped up. My general practioner diagnosed it. The rash follows a specific dermatone path, mine is T1. My sons symptoms were pretty close to mine too. He did have a lot more pain than me and developed a neuropathy after that took a couple months to go away but the initial symptoms were like mine.
I'm 54 yr old male, first diagnosis and have it on my scalp, face round eye, nose - going to see Optician tomorrow as want to be sure to protect eyes - I've read steroid drops are a good idea so hope to get those. Re the scalp treatment Bactine is hard to find here - is it just any lidocaine type spray that I need? - -or is there something specific that you have found helps? Going to look into the Shingrex but will no doubt have to be private as UK doesn't support it despite it seeming to have a better efficacy. Thanks for any advice you can give
Hi Darcy,
It is imperative you see an ophthalmologist, not an optician, regarding your eye. An Hpophthalmologist is a physician with a MD, who treats eye diseases. An optician dispenses eye glasses. An optometrist in the States can treat minor eye problems.I would insist on being evaluated by the ophthalmologist.
Hopefully, you have been already started on an Antiviral 3x daily for 10 days. It sounds like you have an extensive case. How many days have you had it? Are you in terrible pain?
Please ask the pharmacist (druggist) for a OTC solution containing Lidocaine or Benzocaine that can be used on wounds or sunburn. We have Bactine and Solarcaine in the States. Only take cool showers on your head...Hot water makes the pain worse. Ice packs help soothe the pain.
I can send you my entire post, if you do not have it.
Best Regards,.
Merry Juliana
Hi Merry, Thank you, I am contacting the Hospital eye department as soon as they are open to try and get seen asap. I started the anti virals yesterday -though the gp only gave me the cheaper one you don't recommend - maybe the hospital will change that when i go but I'll ask.I took the first antivirals within the 72 hours window. It's interesting the initial headaches and pain behind the eye I thought were due to banging my head so severely it took me off my feet, seeing stars. The doctor even suggested it could have precipitated the outbreak of shingles as a result, which I didn't know was even possible.When I'm out I will get something otc with lidocaine. Thanks fro the advice and support you've given so many on here.
Dear Darcy,
I am so sorry that you are suffering from this disease. Unfortunately, there is a lot of misinformation among health professionals. Many health care professionals are abysmally ignorant regarding the diagnosis, the signs and symptoms of the disease, and the treatment and management of the disease. They loathe to prescribe opioids for the acute pain. In order to prevent the dreaded PHN, POST HERPETIC NEUROPATHY, the pain must be controlled well. (I have had zoster in my right eye twice.) The reluctance to prescribe Opioids for Shingles is ridiculous. Shingles is considered the most severe pain, except for cancer pain.
I had my first episode 23-1/2 years ago in my right ear, mouth, and throat. It took three ENTs to diagnose it. It felt like I was in childbirth via my ear canal while being tased! I have had Herpes Zoster-Shingles in my right ear, mouth, and throat every three weeks for the past 23-1/2 years. For the past 2 years it has also spread to my right scalp. I have had it twice in my right eye.
Because I suffered so much with the disease, I am extremely active on this forum. My goals are to educate, support, and advise the people. I have learned so much from many wonderful individuals on this forum. I am a retired Nurse Practitioner in the States.
There are three stages to Herpes Zoster-Shingles.
THE FIRST STAGE-ACUTE STAGE PREERUPTION PAIN, often burning or lancinating Itching Patchy redness Swelling, in the dermatomal area of involvement Swollen Lymph Nodes, either at this stage or subsequently Constitutional Symptoms Headache Photophobia Aches and Pains Mild Fever Chills Fatigue Exhaustion
THE SECOND STAGE-ERUPTION Grouped herpetiform vesicles-blisters developing on the red base (the classic finding) The vesicles come in crops or waves over a period of usually 5 days Skin findings that typically appear unilaterally, stopping abruptly at the midline Vesicular involution: Vesicles initially are clear but eventually cloud, rupture, crust, and involute (shrink) After vesicular involution, slow resolution of the remaining red plaques, typically without visible sequelae Scarring can occur if the skin has been compromised by excoriation, secondary infection, or other complications Almost all adults experience pain, typically severe A few experience severe pain without a vesicular eruption (Zoster Sine Herpete) Symptoms tend to resolve over 10-15 days, but can last much longer Complete healing of lesions may require up to a month
THE THIRD STAGE PHN POST HERPETIC NEURALGIA Persistent or recurring pain lasting 30 or more days after the acute infection or after all lesions have crusted (9-45% of all cases) Pain usually is confined to the area of original dermatomal involvement The pain can be severe and incapacitating Pain can persist for weeks, months, or years Slow resolution of pain is especially common in the elderly PHN is observed more frequently after cases ofHerpes Zoster-Shingles Ophthalmicus (HZO) Herpes Zoster-Shingles Oticus (Ramsay Hunt Syndrome) and in instances of upper-body dermatomal involvement
TREATMENT & MANAGEMENT Antivirals The cornerstone of treatment Should be started within three days of onset of symptoms or rash Famcyclovir 500 mg 3x daily 7-10 days Most efficacious Newest Antiviral Valacyclovir 1000mg 3x daily 7-10 days Less efficacious than Famcyclovir Large pill Based on Acyclovir Acyclovir 500mg 5x daily 7-10 days Most resistance to this Antiviral Oldest Drug Cheapest drug Difficult schedule of 5x daily USE THE FOLLOWING of each class together Anticonvulsants Gabapentin-Neurontin Dosages must be tapered up and down Effective as adjunct in acute stage and PHN Pregabalin-Lyrica Dosages must be tapered up and down Effective as adjunct in acute stage and PHN Weight Gainer Affects moods Difficult to wean off due to withdrawal symptoms. Antidepressants Dosages must be tapered up and down Effective as adjunct in acute stage and PHN Difficult to wean off due to withdrawal symptoms. Cymbalta SNRI Venlafaxine SNRI Elavil tricyclic
ANALGESICS OPIOIDS Oxycodone Codeine Hydrocodone
IF YOUR PAIN IS NOT WELL CONTROLLED WITHIN THE FIRST TWO WEEKS, GET IT UNDER CONTROL BY DEMANDING OPIOIDS.
The pain often increases markedly the second week of the disease.
HERPES ZOSTER SHINGLES IS ONE OF THE MOST PAINFUL AFFLICTIONS OF MANKIND SECOND TO CANCER AS IT INVOLVES NERVE PAIN.
IT IS THE PHYSICIAN'S DUTY TO HELP THE PATIENT IN PAIN. OPIOIDS STILL ARE THE BEST OPTION FOR ACUTE PAIN.
Gabapentin-Neurontin or Pregabalin-Lyrica can help decrease the neurogenic pain when used in conjunction with Opioids
Topicals Lidocaine/Benzocaine Found in Bactine, Solarcaine, Oragel, Salonpas Auroguard, etc Numbs the skin nerve endings Corticosteroid Creams OTC Decreases inflammation, soothes topical swelling, pain Cool Compresses/ICE
COTTON CLOTHING
SLEEP AND REST You will experience fatigue and exhaustion and want to sleep. Obey your body. You cannot power through this. Take off from work. If you don't, it will only get worse.
CONTAGIOUS Remember: your exposed rash is contagious to all individuals who have not as yet had chickenpox. This list includes all pregnant women and their unborn fetuses. Many women do not know in the early stages if they are pregnant. If someone has been fully vaccinated, they are protected. The unborn child is never protected. Cover your rash with clothing or a dressing.
You are no longer infectious when every last vesicle-blister has scabbed over/ dried up.
PREVENTION of SHINGLES Get the Shingrix Vaccine, a two part injection, taken 2-6 months apart. The efficacy is 93% 1. It is available in the US at age 50 with insurance 2. If you have had Shingles, and are in the US, it is covered by your insurance. Have your physician write a note stating you have had Shingles. 3. In the UK, it is not available until age 70. ADDENDUM the Shingrex vaccine has helped decrease the intensity of pain of my episodes, but not decrease the frequency of episodes.
High Lysine Low Arginine Diet
Google High Lysine Low Arginine Diet and Herpes.
The amino acid Lysine helps decrease Herpes and Arginine triggers Herpes Zoster-Shingles.
If you binge on chocolate or nuts, and find yourself getting a horrible prolonged shingles episode after,
it is due to the high amino acid content of Arginine in chocolate and nuts.
You can take Lysine supplements, but there can always be issues with drug interactions, adverse reactions, and harm to the heart, liver, and kidneys.
I hope this letter has helped you in understanding your disease and how to care for yourself.
Best Regards Merry Juliana
Hi Merry, thanks for the comprehensive information and advice. I am following the advice re Arginine and supplementing with Lysine and have increased some of my other supplements to try and boost my immune system, in addition to the anti virals and the antibiotic eye drops given by the Opthalmologist at the Hospital yesterday. Had a shock today just walking and the wind direction blew into my face and it felt like my skin was on fire - didn't expect that. I have to say my heart goes out to you for all you have endured and it's more credit to you that you share your experience and advice with others and increase the common knowledge base.
Dear Darcy,
Those sudden shocks of severe pain caused by the slightest breeze is called "Allodynia.". Those severe shocks literally knock your socks off, don't they? That is why you need a strong Opioid the first couple of weeks. You also need to rest and sleep. Don't think about working. The pain often is worse the second week, I kid you not.
I feel for you going through this. Is the Shingles in your eye?
Best Regards Merry Juliana
Allodynia - I didn't know what they called it but I certainly don't care for it lol. Getting plenty of rest which, as I usually exercise frequently, is not easy but I know with a virus your body doesn't need additional strain which could cause serious and lasting damage. I'm medically retired as had an adrenal tumour, which was removed, (with the adrenal gland) a few years ago, so no pressure to work which is good, though also cannot earn anything to help out either until this passes.I'm just about to start the second week so not looking forward to the increased pain but it will be what it is and I'll ask for pain relief to help at that point. It's in my right eye though the opthalmologist says it sits on the optical nerve for good and can trigger in the future at any point.
Dear Merry,
I was wondering if I could ask you some questions please about shingles as you seem very knowledgeable. thanks so much. Kate