excruciating pain attacks after rash disappeared
Posted , 7 users are following.
Hoping someone can tell me if what I' m feeling is typical. My shingles rash appeared three weeks ago and was centred behind my ear and on my earlobe, lower cheek/jaw, neck, also spread into my lower skull. I had no itching, some pain and discomfort and started taking valacyclovir at first appearance of rash. Six days ago I went outside (cold air) for first time in 2+ weeks and within the hour, experienced 2 attacks of sudden deep excruciating pain in my cheek. Next day, I touched a scab on my skull and triggered the most sickening deep pain I've ever felt. Later that night I had another attack this time from the area of my ear. that day I started taking Gabapentin 300 mg 3 times/day. Two days later Dr increased to 400 mg. In the last 4 days I've had 4 attacks each day, all from the ear and neck area. All these pain attacks last about one minute of horrible pain. The rest of the day, my ear and cheek/jaw area feel either numb or tingling pain with occasional pain in the ear. My stress is waiting for the next attack to come.
Why is this pain happening now, the scabs are mostly gone. How long might these sudden onset excruciating pain attacks continue? Since this is only Day 5 with Gab, I can say I don't see how its helping but probably needs time to kick in? and maybe higher dosages?
Weird as it may sound, I have the feeling that the Gab triggers an attack but that's probably my imagination. At this point, I haven't had any relief from extra strength tylenol or advil. If I can't stop the nerve attacks, is there something that will make them less severe? My doctor is not knowledgeable other than basic textbook info, when I asked her about a lidocaine 5% patch, she said lidocaine patches are OTC. She wasn't aware of the patch used for PHN. So she's not going to be a great resource with this. Any feedback, please share. There must be something that can help subdue these pain attacks.
0 likes, 7 replies
Merry19451 DeaDea
Posted
Hi Dea,
It sounds as if you have Ramsay Hunt Syndrome, in which the Herpes Zoster-Shingles has affected your ear canal. The agonizing pain you feel with a slight breeze, out of proportion to the stimulus is called allodynia.
I would suggest that your Physician prescribe Auroguard, ear drops which contain Benzocaine. The Benzocaine will help numb the over stimulated nerve endings in the ear canal.
I would also request that he prescribe Oxycodone for those severe spasms of pain. Herpes Zoster-Shingles and Cancer pain are the most painful conditions of mankind, and Physicians need to continue treating shingles with Opioids. When Shingles affects the Trigeminal nerve, which in your case, it has, the pain is most severe. The pain continues often after the rash resolves, trust me. You need to get it under control now, before it becomes chronic pain. Gabapentin-Neurontin is not meant to help acute pain, but help deal with neuropathic pain.
I am going to send you my comprehensive plan on dealing with this, as I have had this cursed disease every 3 weeks for almost 24 years in my right ear, mouth, and throat, and more recently, my right scalp.
My heart goes out to you.
I am a retired Nurse Practitioner in the States.
Merry Juliana
judy64258 Merry19451
Posted
Merry, Thank you very much for posting your comprehensive shingles plan. My husband came down with it Feb 3, 2020 and we caught it immediately and was on the acyclovir. It is exactly as yours on the right side of the face with excruciating pain. it feels like a knife is always there and it twists every 15 minutes. I am not a health care professional but have had to become extremely knowleadgeable with all his health issues. He has a concierage doctor with his acute illness and it is nice to have daily access as needed. I met with their pharmacist and we now have him on oxycodone which helps and lets him sleep but makes him too loopy during the day. Also gabapentin. The ear drs office said there was nothing for the pain in the ear but I am going to inquire about the auroguard. We put vagisil in there it helped some with numbing.
We use a lot of acupuncture alternative medicine with chinese medicine doctor along with chinese herbs for neuropathic pain.. Our acupuncturist uses deep laser light. While getting treatment my husband was without pain and said he could see the pain near him but when the needles were pulled out the pain was back.
At this stage I can't tell what is happening but it is very difficult to watch my cheerful positive husband in so much pain and he is 76.
I just want to say thank you for taking the time to post such a helpful piece of information.
Judy
Merry19451 judy64258
Posted
I am so sorry your husband is still suffering. Could he see an ENT physician regarding the Auroguard? Where do you live? If you live in the UK, it might not be available, but the ENT might be able to prescribe a suitable numbing alternative. It truly does help. I am going to look up alternative names for AUROGUARD. One is Auralgon. I will post it in a different post.
Also, as your husband is over 70, he is eligible for Shingrix, no matter where he is. You can try Shingrix 6-8 weeks after onset of the initial symptoms.
I still get Shingles, but not as severely. I have it now in my right ear.
Best Wishes
Merry Juliana
ronna DeaDea
Posted
DeaDea I'm so sorry about the pain that you are having. It's called postherpetic neuralgia. Unfortunately, this can go on for years. The more times you have a new outbreak, in the same place the more damage you're doing to your nerves.
an outbreak is not pain. An outbreak is blisters. . Many people think that when they are in pain, it's a new set of shingles, but it's not it's just the post herpetic neuralgia. You need to find a doctor who is up-to-date on shingles. Many old-school Physician's only believe you can get it once. That is not the case. If you're lucky you only get them two or three times. But many people get them over and over and over.
The Dose of Gabapentin. I am is much higher than yours. The pills are 600 mg each. I take 6 pills a day along with Lortab for pain and my Acyclovir. are 800 mg and I take them twice a day. Your doctor also might prescribe. You muscle relaxers of some kind.
Please know that your life is not over and will not be taken over by neuralgia. There are ways to deal with this. But you need to find good help.
Best of luck! Ronna
Merry19451 DeaDea
Edited
Dear Dea,
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.
I had my first episode 23 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%
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
Merry19451 DeaDea
Posted
Dea,
By definition, the pain you are having now is allodynia. Post Herpetic Neuralgia is not a diagnosis until one month after initial onset of rash. It is important to get the pain under control. That means you need to rest and sleep and sleep and rest. Any activity, exercise, or work, breeze will exacerbate the Shingles and I am very familiar with those paroxysms of pain. I suggest the Auroguard, then a cotton ball in your ear. When my entire right scalp was on fire, I would spray it with Bactine, which contained Lidocaine, then Flonase, which contains a potent corticosteroid. This combination truly helped lessen the inferno on my scalp. I had to use Oxycodone.
The first couple of times I had Herpes Zoster-Shingles, I was not diagnosed accurately , and suffered enormously, to say the least. I had no analgesics.
joseph_73900 DeaDea
Posted
Hi sorry to hear you are going through so much pain ,it's sounds really bad
I will tell what I know. First of all the Versatis patch help. I was on them for a long time. My doctor suggested them as I have PHN . I stopped using them when the pain eased. The pain for me never actually goes away, but I have learned to deal with it much better. Be careful what you eat Google I and you find lots of information about the food to avoid, such as legumes, any seeds, lentils, peanuts,.peanut butter and lots more. Avoiding these help and funny enough these are all the foods I like. I also take Valtrex and Arapudanal which doctor put me on. I hope this helps in a small way and wish you all the best .