Shingles on scalp
Posted , 9 users are following.
I am a 47 year old woman with long hair and scalp shingles. I can't even touch my hair without spontaneous tears. Has anyone else has shingles on the scalp? I have bumps and blisters all over the right side of my scalp down to my hairline. I also have the rash on my neck, face and shoulder but the ones on my head are exponentially more excruciatingly painful. I am taking Gabapentin and Hydrocodone and they only barely knock the edge off the pain.
I am on day 2 of the rash.
I am wondering if anyone has any advice for relief for scalp shingles. Do I need to keep the wounds clean? I can't imagine washing my hair. As for relieve- anything topical that will work with long hair? Any type of compress? I am desperate so any advice is appreciated!
Thanks!
1 like, 24 replies
Ochio1234 littleowlmonkey
Edited
I went through whole process of registering for medical marijuana once it became legal in Fla.. Very expensive ... private pay to see specialized Dr. and then expensive for the MM itself. Difficult to regulate type and dosage to see if effective. ultimately it never helped my pain. I have post herpetic neuralgia ongoing from it. I believe MM helps many people ... but 1000s of dollars later ... it didn't do anything for me. I was so hopeful. I was on opiates forever ... now Gabapentin is the most helpful ... 600 mg tid. I was on 800 mg at one point.
lisa65143 Ochio1234
Posted
thanks
regarding medical mary yes its too expensive it worked for awhile for me
go the other route but have a reliable quality source so its pure
also i was thinking for EVERYONE
GET A FURRY MAMMAL PET that you can take care of in the house
believe me my kitty is the BEST MEDICINE
SHE TAKES THE PAIN AWAY
i believe that our wrecked nerves touching these glorious creatures, their warmth and purring has a healing effect
they will take care of you too
autumn30875 littleowlmonkey
Posted
i, too, am a member of the scalp shingles club. it has been since MARCH 2019 but very slowly improving. it began with a horrible earache on the right side. no flu, cold, etc so could not figure out why. On the second day went to the emergency room as it was a weekend, of course. it felt as though a knife was being shoved into my ear. in the ER I was diagnosed and started on VALTREX. Fortunately hydrocodone 10mg/acetaminophen 325mg was given to me. I did not develop RAMSEY HUNT syndrome. The neurologist said my extreme ear a d scalp pain was due to the nerve involvement but no actual shingles in ear, only scalp. no face or eye area. what helped me the most in those first few days, besides the opiod which only covered up the horrible pain, was a week of decreasing prednisone. i still have pain and have not had a decent night of sleep in six months as you all know what touching hair can do so would go to bed, try not to move at all...ha,ha..and finally get up after three hours, take a vicodin and sleep in the recliner...carefully. once the acute care at the beginning was addressed, I only needed half a vicodin when I woke up from the irritation of head movement on pillow. i also used SALON PAS, a roll on lidocaine which did not leave my scalp greasy. I also tried scalpicin for itch but did not help but love the bottle. i would keep cold water in it and hit the painful itchy areas. also help was a cold gel pack. Finally, the only shampoo I could tolerate was DHS clear and sensitive or some such name. Got it on AMAZON . if there was wind, I found if carefully cupping my hand over area helped keep hair m ovement and its pain. a scarf was too painful but the wind or breeze intolerable. I definitely have PHN but feel it is getting better. Now down to 2.5 mg. vicodin. Fortunately my doctor knows I dont abuse but drug company optimumrx probably thought I was. they would only fill seven at a time which meant going to doctor every week BUT Walgreen would fill the whole 40 pill rx for $45.00 but found RX SAVER, like GoodRx but better, the cost was $7.00. So, light at the end of the tunnel for me as now use vicodin 2.5 mg once a day when I awaken. so slowly decreasing.
BtW was on the list for SHRINGRIX but not available here yet. Did have the previous ZOSTAVAX about 5 years ago. everyone is different so hope at least something here may be of help.
littleowlmonkey autumn30875
Posted
Thank you so much for the detailed reply. Wow- since March?!?! That is awful! So sorry you have been through this!
Mine started with a stabbing pain behind my ear and then my ear and next felt sunburned for two days, then I woke with a rash on my neck and scalp with swollen lymph nodes. I have the rash all over my ear and feel a bit off-balance. I am hoping the balance issue is related to the medication and not ear shingles! I also now have really sore muscles and burning in my arm down to the palm of my hand. Ugh.
I hate that you went/are going through this, but it's nice to hear from someone who understands how excruciating the scalp shingles are. I really want to pull my long hair back, but it hurts to touch it. This is something most people don't understand. And yes, like you, sleep is elusive. Sigh.
I'll look into some of your recommendations. I appreciate them all.
I still haven't seen anything online about when the pain will peak. Does it stay at the same level till it goes away? Just trying to adjust my expectations and mindset.
Good luck with the SHINGRIX I didn't realize there might be a wait time- that's good to know!
Thanks again for the post. If you have anything else, don't hesitate to write!
autumn30875 littleowlmonkey
Posted
btw see my doctor in six months. hopefully no need for vicodin. and SHINGRIX i am on list at all pharmacies in my area but was on their list before. My Walgreen pharmacist she was told probably available end of year. manufactured in BELGIUM, i think.
Tpar09 littleowlmonkey
Posted
OMG, I can't imagine dealing with all this since March! Although, I have been dealing with shingles since May. The rash finally went away (almost) this month. But then a few weeks ago i thought the shingles was coming up on my right thigh, as I was having horrible nerve pain in my leg. Then last week, i started feeling some bumps on my scalp and my right ear has been very painful. So, Im afraid it has come back again. 😦 Whats crazy is I've been taking L-lysine and vitamin C since June to build up my immunity, but it doesnt seem to be working... Any suggestions. This is so frustrating! I know rest and destressing is a must, which is hard since i work two jobs. 😦
Hope you all get to feeling better!
lizabiz littleowlmonkey
Posted
God help you love. I got shingles almost 2 years ago left me with Post Herpetic Neuropathy.
Had to go to hospital outpatients to get diagnosed. I was so scared body spasming like someone having a fit, all out of control. This is because Shingles attacks the nervous system.
Couldn't even bear the touch of a hair on my chest, neck, ear and neckline between scalp and neck.
My ear swelled up so much I had to get my gold hoop earring snapped to get it out!
Gradually the sensitivity lessened, but the skin on my neck and behind my ear all on right side still sore, but bearable.
I have been on 600 mgs Pregabalin and tried coming off but ended up on again.
I am supposed to take co codomol as well, but to be honest I walk like a drunk already without that.
GP just said , "I don't know what else to do." Very confidence inspiring!! No wonder we all turn to the internet for help!.
Your question about scalp.
I found just gently massaging China Gel into, then upward from hairline into scalp , has helped when I get the desperate urge to scratch, which must be resisted!
It nips a little bit, then cools to a comfortable rest.
I have at times soaked a cloth in bicarbonate of soda, wrung it out and placed on scalp,
or alternatively soaked in Apple Cider Vinegar .
Sometimes I spray Dry Shampoo, Batiste I like best, all over hair surface, then bend over and massage it through scalp. It gives a temporary relief.
If I hear of anything new and effective I will post again.
Good Luck and Best Wishes LittleOwlMonkey for your speedy recovery.
lizabiz littleowlmonkey
Edited
I really just noticed how long ago this was posted...so this is really history:))
I sincerely hope you have fully recovered and if so, leave a post that will give hope to others.
All the Best,