shingles question

[gardenmom5]

I haven't done the shingles vax because having EBV has made me very reluctant. . 
now - I may have it. Around my eye and temple . .(the crown of my head on that side feels like someone yanked my hair hard)  there are two possible rashes (could be something else.), with a third (non-painful) hinting at erupting within the brow line.
I have a rx for an antiviral (when I previously did valacyclovir - it put me to sleep for the many months I was on it. she gave me something else.) - saw my dr on Thursday for blood work before any rash was noticeable - just pain like a pimple or boil was trying to erupt.

 

Is it too late for a shingles vax?   and I'm supposed to be traveling out of the country next week . . . . not.  a. happy. camper. . . .

[Catwoman]

Oh no! I don't have any info on the vaccine, but I know you need to start taking those antivirals immediately and that should help a lot!

I hope you get the mildest case possible, Kristen!!! 

[Catwoman]

I was just thinking -- is there any way for you to reschedule your trip?

It's horrible enough to get shingles, but the timing is awful, too! 😞 

[gardenmom5]

14 minutes ago, Catwoman said:

Oh no! I don't have any info on the vaccine, but I know you need to start taking those antivirals immediately and that should help a lot!

I hope you get the mildest case possible, Kristen!!! 

I've got the rx now . . . taken my first dose (4x a day.  sigh.)

If I don't see improvement by tomorrow (or tonight) - I may end up in the ER as information I'm seeing is if it's near the eye you need IV antivirals .  . great . . . . 

I don't even know if it is shingles! It could be something else.

Edited June 15 by gardenmom5

[KatieJ]

So sorry, it sounds miserable.

FWIW, my sister was treated for shingles for weeks before a second opinion Doctor said it was impetigo, 

[gardenmom5]

5 minutes ago, KatieJ said:

So sorry, it sounds miserable.

FWIW, my sister was treated for shingles for weeks before a second opinion Doctor said it was impetigo, 

was it around her eye or on her body?

as the rash increases in size, I'm starting to leaven towards shingles (which is only on one side.)


But I don't have a fever, and I'm not really more tired than normal. . . . 

Edited June 15 by gardenmom5

[Kassia]

I hope you don't have shingles.  I'm sorry about whatever it is and hope it clears up soon.  ❤️ 

[KatieJ]

8 minutes ago, gardenmom5 said:

was it around her eye or on her body?

as the rash increases in size, I'm starting to leaven towards shingles (which is only on one side.)


But I don't have a fever, and I'm not really more tired than normal. . . . 

It was on her face, arms, and her belly. 

But I seem to recall it was not just on one side which led the second doctor to rethink the original diagnosis.

She was fighting colon cancer at the time so there was lots going on.

( she passed in January. 🥲)

Edited June 15 by KatieJ

[Catwoman]

35 minutes ago, gardenmom5 said:

I've got the rx now . . . taken my first dose (4x a day.  sigh.)

If I don't see improvement by tomorrow (or tonight) - I may end up in the ER as information I'm seeing is if it's near the eye you need IV antivirals .  . great . . . . 

I don't even know if it is shingles! It could be something else.

Do you think it would be worth going to the ER right away just to be safe? Or since it's so close to your eye, is there a good eye hospital near you?

 

[gardenmom5]

17 minutes ago, Catwoman said:

Do you think it would be worth going to the ER right away just to be safe? Or since it's so close to your eye, is there a good eye hospital near you?

 

No eye hospital I know of, not even in Seattle itself.
It's not on the lid - it's on the brow bown close to my nose . . . possible small one at the top of the brow
i've had pain in the ear (my dr looked at it on thursday and nothing was visible)

I've got one really painful area behind my ear - I'm really hoping I don't get a rash there.  But the type of pain is changing . . . 

[KeriJ]

It's a very unique type of pain. I had a hard time describing it. Kind of a dull pain that sometimes feels surface with a type of numbness, sometimes sharp that feels deep in the nerves. 

Edited June 15 by KeriJ

[Carol in Cal.]

This is way too close to your eye to wait.  Go see someone right now.

[LLucy]

My mother has shingles (torso) right now . It's bad.  She is in her 4th week of it.  But she is 86, and she had knee surgery in February.  She didn't realize it was shingles right away -- she thought the low back pain was from overdoing her exercises -- so she was later in getting the antiviral.   She had put off getting the vaccine and is so rueful now.  

Anyway, my understanding is that once you have shingles, you have to wait a year to get the vaccine.  And I think that getting shingles anywhere on your head is more dangerous and a threat to your eyesight.  It doesn't have to be really close to your eye right now.  I would want a doctor to be keeping an eye on it for sure.  In addition to the antiviral, I think you can get a steroid to help tamp it down. You want to tamp it down early.

[LLucy]

Really, go see someone.  This can get very bad.  My mom has a constant burning sensation that she keeps ice packs on and also electric-like jolts that make her jump a little in her seat.  She is on a low-dose opioid (and tylenol and motrin, just like she had for her knee) and gabapentin now.  You don't want this on your head.  Traveling with this would be a nightmare.  I'm  so sorry.

[gardenmom5]

Urgent care, or ER.   I'm waiting for DH to get off the phone.

[Kassia]

5 minutes ago, gardenmom5 said:

Urgent care, or ER.   I'm waiting for DH to get off the phone.

I'm so glad you are being seen soon.  Please update when you can.

[gardenmom5]

I'm at UC.  he's trying to get an on call ophthal, or send me to the ER.  Joy.

[Kassia]

6 minutes ago, gardenmom5 said:

I'm at UC.  he's trying to get an on call ophthal, or send me to the ER.  Joy.

sending hugs.  So glad you went in and hope this can be treated ASAP.  Thinking of you.

[Garga]

I’m glad you went, but so unhappy for you that you have shingles (if that’s what it is.) 

[gardenmom5]

I've been texting with dd, (pharmD) so I'll update here.   I'll get 2ds to take pix to send to her.

yes, shingles.  Valacyclovir (which had been my drs first choice, so I'll take it and save the famciclovir for afterwards).  they gave me tylenol 3 for pain . . . what part of i can't have acetaminophen do you not understand???  must be too far in the file and he didn't see it, and I didn't catch it until I was at the pharmacy.  oh and because it's a narcotic, you must have a paper copy . . .I had to go back to urgent care and get an updated Rx.  (the antiviral could be sent through EPIC. . . . )  at least they were close.

i've got pain in my left orbital bones (and now my tear ducts itch) - so I'm REALLY hoping we can nip this in the bud and it won't get worse.   If it does, I'm to go straight to the ER.  currently, the only rash near my eye is in the brow - two spots.   and pain, lots of pain.  I've taken a narcotic, and now the pain is worse. . . .

my poor right eye . . . this is the one I had the nightmare of an infection that scared me from ever wearing eye make-up again . . . .

[KeriJ]

4 hours ago, LLucy said:

Really, go see someone.  This can get very bad.  My mom has a constant burning sensation that she keeps ice packs on and also electric-like jolts that make her jump a little in her seat.  She is on a low-dose opioid (and tylenol and motrin, just like she had for her knee) and gabapentin now.  You don't want this on your head.  Traveling with this would be a nightmare.  I'm  so sorry.

Yes! I've blocked a lot of it out. It was some of the worst pain ever.

Edited June 16 by KeriJ

[KeriJ]

1 minute ago, gardenmom5 said:

I've been texting with dd, (pharmD) so I'll update here.   I'll get 2ds to take pix to send to her.

yes, shingles.  Valacyclovir (which had been my drs first choice, so I'll take it and save the famciclovir for afterwards).  they gave me tylenol 3 for pain . . . what part of i can't have acetaminophen do you not understand???  must be too far in the file and he didn't see it, and I didn't catch it until I was at the pharmacy.  oh and because it's a narcotic, you must have a paper copy . . .I had to go back to urgent care and get an updated Rx.  (the antiviral could be sent through EPIC. . . . )  at least they were close.

i've got pain in my left orbital bones (and now my tear ducts itch) - so I'm REALLY hoping we can nip this in the bud and it won't get worse.   If it does, I'm to go straight to the ER.  currently, the only rash near my eye is in the brow - two spots.   and pain, lots of pain.  I've taken a narcotic, and now the pain is worse. . . .

my poor right eye . . . this is the one I had the nightmare of an infection that scared me from ever wearing eye make-up again . . . .

I am so sorry! Praying the meds help!

[gardenmom5]

dd said I could cut the oxycontin in half - and now I've got the buzz/high (do not like) . . . I think I'll try half next time.  But the pain . .

[gardenmom5]

The one funny is - dsil just got back from CA, and apparently took off for Oklahoma to buy a highlander.  It's exactly like mine, same year even and about the same mileage.  same color, same color leather, etc.  He rented a trailer to tow it back.  it's just funny.
he wants/needs chilled seats. . . 

not sure which car - if any - this will replace.  dd crashed his solara, but they'd had it repaired, so not sure.

[Carol in Cal.]

Very sorry but I’m so glad you are getting treatment, and I hope they can prevent it from hurting your eye.

[LLucy]

For topical relief, my mom has been using Caladryl Clear,  aloe with lidocaine, and cold packs.  Everything helps a little bit.  Of course you have to be careful what you use around the eye, but the cold pack would be safe. 

[Kassia]

3 hours ago, gardenmom5 said:

dd said I could cut the oxycontin in half - and now I've got the buzz/high (do not like) . . . I think I'll try half next time.  But the pain . .

I'm so sorry.  

[Kassia]

@gardenmom5 check in with updates when you can, please.  Thinking of you and hoping you're getting some rest.

[gardenmom5]

I'm watching my eye.  My upper lid is starting to burn (and my eyeball really hurts), so I'm really hoping I got started on the valacyclovir soon enough it won't go any further.   I figure if I do end up in the ER, it will be today.

[Kassia]

I know you know this, but I can't help myself...please don't wait if you think you need to be seen.  I hope you turn a corner soon and start to feel improvement.  

[ikslo]

Hugs! Hopefully the meds work quickly

[gardenmom5]

It blows my mind that people deliberately take oxycodone to get high.  I can't stand how it makes me feel.  2dd said i could cut the tablets in 1/2 . . .so I'm trying that, if it still works for the pain.

[gardenmom5]

7 minutes ago, Kassia said:

I know you know this, but I can't help myself...please don't wait if you think you need to be seen.  I hope you turn a corner soon and start to feel improvement.  

yeah - it's something I struggle with.

[gardenmom5]

8 hours ago, LLucy said:

For topical relief, my mom has been using Caladryl Clear,  aloe with lidocaine, and cold packs.  Everything helps a little bit.  Of course you have to be careful what you use around the eye, but the cold pack would be safe. 

I may get some - i've got some in the hairline, and places on my scalp that feel "crispy" . . . like it's going to break out there.  'cause I'm not doing anything around my eye but cold packs.

[Toocrazy!!]

I’m so sorry. I hope you get relief soon. And I’ll echo on to be seen at the ER with the eye issue. 

[KSera]

I’m sorry you’re going through this. How miserable. If it wasn’t by your eye, there would be some other pain relief options (capsaicin cream or patches, tens), but those wouldn’t work by the eye. Do I understand correctly you are allergic to acetaminophen so you can’t do the ibuprofen acetaminophen combination? Gabapentin is often used, and is particularly good for nerve pain, but it takes awhile to titrate up, so I don’t think it would start working quickly enough. Hopefully the antiviral starts working well very soon.
 

3 hours ago, gardenmom5 said:

It blows my mind that people deliberately take oxycodone to get high.  I can't stand how it makes me feel.  2dd said i could cut the tablets in 1/2 . . .so I'm trying that, if it still works for the pain.

I’m sure your dd is advising you on this, but you made sure they weren’t extended release before cutting? Can they give you a lower dose? People who get addicted to oxycodone after having it prescribed usually don’t start their addiction because of wanting to get high—it’s usually just to keep the pain away and stop the withdrawal symptoms 😞. 
 

I hope it starts feeling better soon. Nerve pain is always so difficult.

[gardenmom5]

59 minutes ago, KSera said:

 
 

I’m sure your dd is advising you on this, but you made sure they weren’t extended release before cutting? Can they give you a lower dose? People who get addicted to oxycodone after having it prescribed usually don’t start their addiction because of wanting to get high—it’s usually just to keep the pain away and stop the withdrawal symptoms 😞. 
 

I hope it starts feeling better soon. Nerve pain is always so difficult.

I sent her a picture of the scrip itself. (she wanted an actual photo of it.) They're not extended release, and they are the lowest dose available.

[gardenmom5]

dh couldn't find aloe with lidocaine . . . . so, I'll order some from amazon, as I'd prefer that to the lidocaine pain cream he did find (he went to two places.)   I don't care what it does to my hair . . . and that's the only place it's going, is my scalp.  it helps.

eta: For $3, amazon will deliver the aloe with lidocaine before 3pm . . . worth it.

Edited June 16 by gardenmom5

[Catwoman]

I'm so sorry you're feeling so horrible. I'm praying that you got the prescriptions early enough to dramatically shorten and lessen your symptoms.

[Kassia]

@gardenmom5 how are you doing?

[gardenmom5]

17 hours ago, Catwoman said:

I'm so sorry you're feeling so horrible. I'm praying that you got the prescriptions early enough to dramatically shorten and lessen your symptoms.

Thank you.  The rash around my eye seems to have stopped progressing.  I hope.  sometimes it stops hurting - other times it does . . 

 

 

1 hour ago, Kassia said:

@gardenmom5 how are you doing?

we'll see.   taking the valacyclovir.  a lot of sleeping. . . 
throbbing headache, a lot of painful lymph nodes, and pain that comes and goes in my ear and my eye/lid/etc/    I hope it doesn't get any worse than that.

the lidocaine lotions are making themselves at home on my scalp . . .

I'd look at that sign for the shingles vax at costco every time I went to the pharmacy, and I'd think -  . . I even asked 2dd who recommended I do it . . but I was concerned how I'd respond with a compromised immune system.  I didn't think my risk of shingles was high.  My mom never had it. (my grandmother did on her torso, and had nerve pain for months afterwards).  I should make sure dh gets the vax.

[TexasProud]

So sorry you are suffering like this.  Note to self get that vaccine!

[Catwoman]

@gardenmom5  Just checking in to see how you're feeling today. I hope the medications are starting to help!!!

[prairiewindmomma]

FYI for the peanut gallery on Shingrix, it’s 90% effective for up to 10 years, 82% year 11…studies are still being conducted to see if future re-boosters will be needed. You can get the shot early if you are immunocompromised—if you have blood coagulation issues, check with your hematologist or coordinating dr first.

[barnwife]

I am so sorry you are dealing with this. My mom had it the summer before what she planned to be her last year in her long career of being a teacher's aide. She was in so much pain from it, she seriously considered retiring a year earlier than planned. She could barely move one of her arms. Thnakfully, it started to improve in time for her to work one more school year.

But just watching that is enough for me to know that I want the vax when the time comes.

I hope you continue to improve!

[gardenmom5]

Saw the Ophthalmologist this morning.   (pain in my eyeball and orbital bones).  I have some small lesions on my eyeball . . . (cornea is fine so far)
I'm sending all the info I have to 2dd as well - especially drugs.

She gave me a steroid drop for the eye, and erythromycin that I can put on the lesions on my lid/in my eye brow to prevent a bacterial infection.

I appreciate everyone's prayers.

I was supposed to go to 2dd's in July, and help with the boys with dsil is in CA - and play with them . . . fingers crossed, but it's not looking good.

[Catwoman]

Ugh. I was praying that it was just the surrounding area and your eye was not affected at all. 😞 

How soon do you have to follow up with the ophthalmologist to make sure things aren’t getting worse (and are hopefully getting better?)

[gardenmom5]

4 minutes ago, Catwoman said:

Ugh. I was praying that it was just the surrounding area and your eye was not affected at all. 😞 

How soon do you have to follow up with the ophthalmologist to make sure things aren’t getting worse (and are hopefully getting better?)

Next week.

[Jaybee]

I had shingles several years ago on one side around my waist/hip area. I first thought I had pulled a muscle, but when the rash broke out, I was pretty sure that's what it was immediately. I was put on the antiviral. I had what I considered quite a mild case, but it still left me exhausted and out of commission for at least a couple of weeks. It seemed to affect me uncharacteristically hard for what it was (the rash part was only about the size of two separate quarters, but the internal pain was what was worse for me). I'm sorry you have it, and I hope you recover quickly. But I wouldn't count on the Texas trip at all--I wouldn't have been able to keep up with my grandchildren for awhile after the onset, as I was so tired.

[Ting Tang]

I had shingles last fall, and yours does sound like shingles, but if it gets near the eye area it can be dangerous. Hopefully,  your meds will kick in. I am so sorry. It’s quite awful. BUT it could start to clear… snd you may feel well enough to travel…I think you just need to be cautious around those who are not vax for chicken pox. Feel better soon! See a doctor sooner if you’re worried about the eye area, of course.