shingles treatment question

Hello. I started having pain in my right forearm appox 5 days ago. As the days went by it radiated down to my fingers, the entire arm, my back shoulder, right side of neck, right side of face and my ear. It was burning, tingling, neuropathic pain and muscular. I could barely move my arm. I'm a nurse and would have to rotate my patients and the pain wold radiate like nerve pain especially at my wrist. Yesterday I had a patient with shingles too but was very careful not to touch her blisters. This morning I woke up with 2-3 blisters on my right forearm where the pain began...I knew what I had. I ran to the MD and got my Acyclovir. I also remember having shingles at the age of 18 when I kept getting strep throat, and again at 28 in my last month of pregnancy with my first child. I'm now 50. Shocked that i could get this again. Yesterday I started with the headaches. I do have migraines all the time, and I also have fibromyalgia so I know my immune system is shot. My question is why does shingles cause headaches? Also, I'm more concerned about working in a hospital with this. If I keep them covered, wear long sleeves, take my Acyclovir, and stay home for 3 days, after that can I still pass this along to my patients? Any answers can help...thanks.

Hi Christina,

First, I am sorry for the pain and suffering you are experiencing. As long as the vesicles-blisters are all covered, you are not considered contagious.

Should you be working with the amount of pain you are in? I also wonder as a fellow nurse if you have cervical and lumbar stenosis. I certainly developed it lifting and moving patients in the hospital. Have you had MRIs done? Many of my friends are given the diagnosis of fibromyalgia, but they really have severe stenosis from work related injuries.

To address your headache issues. Herpes Zoster-Shingles starts out with a pre- eruptive phase lasting up to two to three weeks. The symptoms are the following: headache, fever, chills and sweating, aches and pains, malaise, fatigue, and occasionally photophobia. These symptoms occur because the virus is circulating in your bloodstream. Then the pain begins which is usually a burning or lancinating pain. The vehicular rash ensues, coming in over a period of up to five days. These can take up to a month to crust over. When the last one has crusted over, you are no longer contagious.

I hope you were given a strong analgesic, ie. Opioid. Recurrent Herpes Zoster-Shingles occurs more frequently than previously thought. Most clinicians/physicians are abysmally ignorant regarding Herpes Zoster-Shingles, do not give out appropriate analgesics, often miss the diagnosis, and are unaware of the entire spectrum of the disease.

I have been getting it in my right ear every 3-5 weeks for the last 20 years and twice in my right eye. As I am also a migraineur, I take Topamax prophylactically, and haven't had a migraine in over ten years. It is a good thing, as my migraines were always right sided, and so is my Herpes Zoster-Shingles, It was difficult to ascertain which was which, although the Zoster-Shingles is infinitely more painful.

I am a Nurse Practitioner in the States. Please let me know how else I can help you.

Best wishes.

Merry Juliana

Hello Merry,

I was just reading this and the part about your rigfht eye. It is now 4 months since I was diagnosed and the itching has never gone, I get it every day esopecially first thing in the morning, I'm surprised that there are no drops that can stop the itch, and cream can only be applied elsewere, forehead etc.I think you said (in previous posts) that you didn't suffer with the itching, but if anyone else on here could comment or suggest  anything that might help,I'd be grateful as it's making my eye so sore and uncomfortable, I still attend the eye clinic regurarly but the dr just says put face cream on it, which can't be used as it stings, Creams that soothe still do not help the itch!! I tried antihistamines but they don't work either, Cold compresses help for a while but  they are not practical. Will I have this forever?!!

Jane,

Is it the actual eyeball or the eyelid that is driving you to the point of distraction? I am quite empathetic to you as I suffered with itching all over my body (l had staph infections) with all my allergies until I figured which medications, foods, and preservatives I was allergic to.

What eye drops are you using now?

Merry Juliana

it is mostly in the eye socket, and eyebrow, forehead area, but the actual eye does itch too. It isn't all of ther time, worse when there is nothing else to focus on. When I am with people i don't notice it, but as i live on my own it isn't so easy to always have company. I use Lanacane on my forehead and that helps. The eye drops are now down to one a day of maxidex, then I use Clinitas morning and night, and Carmize drops throughout the day. I have an appointment on 15th Aug at the eye clinic. It's just so uncomfortable having this every day, and no help available!!

Jane,

I have terribly dry skin and use this product even around my eyes. Otherwise, I am a very itchy and rashy girl. It is expensive, but a little goes a long way. It healed my face when nothing else would work. I also used it on my breast to cope with radiation dermatitis when I had radiation for breast cancer last September-October. My twin felt it was the only product that helped her with the effects of radiation on her breast, as well. (Nothing like being an identical twin diagnosed with the identical breast cancer at the same time, same breast, same area of the breast, same size tumor, same tumor markers, same everything!)

Eye Drops and Eye Ointment are lubricating OTC drops, but much better than others in that they are formulated to have a hydrostatic property, that is, adhere to your cornea. Other eye drops, you just blink out the tears. Usually, with Zoster-Shingles, the issue is excessively dry eyes, with poor quality tears, causing the itching.

Also, you should be taking a Q-tip, wetting it with warm water, and rubbing the eyelid margins gently of any debris. This will also stimulate the meibomian glands to secrete tears.

I hope this helps. If not, you may wish to consult with a superior eye clinic, than the one you are with.

Best regards in healing and health

Merry Juliana

Emis Moderator comment: I have removed product/company names as we do not allow repeated posting of these in the forums. If users wish to exchange these details please use the Private Message service.

Jane

I sent you a response.

Let me know if you get it.

Merry Juliana

I mentioned two products that were helpful,

and specifically named them. Now the response is moderated. I was not trying to advertise.

Merry Juliana

Hi Merry,

I'm so sorry for your long time suffering. That's crazy that you've been getting this attack for so long. And with my reading on here I noticed that those who get it in the ear or eyes it is more recurring. That's so interesting to me.

I've had my fibromyalgia for 21 years and have not been a nurse for that long, so the spinal and cervical stenosis I'm hoping is not an issue. The arm pain just started as with this issue of shingles.

I'm interested in knowing about the Topamax you take for your migraines. Is it a prescription (I'm sure) so that I may mention to my doctor so that I can get on this as well. I have migraines on both sides of my family and with the fibromyalgia I have a double whammy.

It's nice to have this forum and speak with someone with regards to this issue. Being in the medical field helps with the knowledge, but having you here is a great bonus. Thanks for your advice and caring nature . You are a blessing to many.

Dear Christine,

Thank you for your kind words...it means so much to me. If you are healthy with no medical problems ie bone marrow cancers, renal or hepatic disease, etc, Topamax might work for you. As a warning, in some, but not all individuals, it can cause cognitive impairment (AKA Dopamax or the Blonde Effect) & Mood swings, depression. For me, it stabilized and boosted my Major Depression and PTSD that extra 5%.

It is prescription only and is not considered a "dirty drug" as far as causing a lot of side effects. You have to taper up on Topamax ie 25 mg per week, until you reach 100 mg daily. I take 100 mg BID to block some of the neurogenic pain of Herpes Zoster-Shingles during each episode. If you are on Lyrica for the fibro, he may not prescribe it. Topamax may help your fibromyalgia, however. Off label use... Just food for thought..

Best regards

Merry Juliana

Michelle, I also had excruciating pain at the back of my head one side, 5 days before the rash which was only two red marks on my forehead and then i saw the dr on the 6th day and got aciclovir, but i am now in the 10th week and unfortunately it didn't stop the complications i now have, My head is still tender ( although not as bad as at first) and I keep getting a pink eye which I am told is dry eye and am given drops, it itches like CRAZY  so it's very hard not to rub it, but that just makes it worse. I also get awful itchinbg on my forehead where the rash started, it didn't look too bad but as it healed i realised that a lot of it was under my hair, as it was agony to brush my hair for ages. I am also getting double vision mainly when I wake up but sometimes later in the evening, it is all so worrying that shingles has caused all this and i have no idea when it will end!! The eye dr has said my eyes are fine now and the vision is, but I never got double vision before i got shingles!! Good luck!!

Michelle, could you let me know what dosage of antivirals you take as a prophylactic?  My doc has given me the 400 mg dose of Acyclovir to be taken 5 times a day but I see there is also a 200 mg pill.  At the very start of my shingles just over a year ago, I was prescribed this, and also cortisone. I started early before the rash occurred and perhaps it lead to a smaller number of blisters, but I am still suffering from PHN in the form of an almost unbearable itching. It is constant, but I have flare-ups when it is extra bad so want to see if acyclovir will help make them milder. Thanks and all the best, Pamela

Pamela, I am still taking 400mg but just 3 times a day, my dr doesn't seem to think I still need them but the eye dr said I should still take them, Sadly it makes no difference to the itching for me, you poor thing still suffering after a year!! my eyelid is the worst, but I have just put som,e clinitas gel on it, as i was told I could use this even though it if for putting in my eye at night. maybe my eye is pink because of the scratching. so hopefully the gel will help and once I don't have itching maybe the redness will go. Lanacane  is very good to stop the itching. I use that on my forehead. good luck with whatever you try,

Jane,

Ask your ophthalmologist for collagen plugs to stop the drainage of your tears in the bottom tear ducts. I have silicone plugs which do not dissolve and work wonders for dry eyes! Do not use any eye drops with preservatives as they cause more problems with irritation. If you can, buy single use plastic ampules, they can be recapped for rest of the day for reuse.

I hope this helps.

Best Wishes

Merry Juliana

Jane,

Also, when your eyes are dry and scorched like the Sahara, you tend to see double as your eye needs the tear layer to see properly.

Are you on Neurontin or Lyrica for the PHN?

Are you taking Benadryl OTC when the itching becomes unbearable?

I understand your suffering...

Best Wishes.

Merry Juliana

Thank you, that is interesting re the double vision, not quite so worried now! I am not on neurontin, is it an antihistamine? i am on one  to see if it helps 

 

Thank you, that is interesting re the double vision, not quite so worried now! I am not on neurontin, is it an antihistamine? i am on one  to see if it helps 

 

Thank you, I am not quite so worried now re the double vision, Actually the eye Dr did also mention that dry eye can sometimes cause it, but he could have told me a few weeks ago when I asked him! I was on Pregabalin but stopped them in case the double vision was a side effect but it didn't make any difference! I take one amitriptyline at night and thsat usually helps me to sleep.

Thank you, I am not quite so worried now re the double vision, Actually the eye Dr did also mention that dry eye can sometimes cause it, but he could have told me a few weeks ago when I asked him! I was on Pregabalin but stopped them in case the double vision was a side effect but it didn't make any difference! I take one amitriptyline at night and thsat usually helps me to sleep.

Thank you, I am not quite so worried now re the double vision, Actually the eye Dr did also mention that dry eye can sometimes cause it, but he could have told me a few weeks ago when I asked him! I was on Pregabalin but stopped them in case the double vision was a side effect but it didn't make any difference! I take one amitriptyline at night and thsat usually helps me to sleep.

 

I was on pregabilin but when I read that a side effect was double vision I stopped taking them, plus i don't need them for pain now, I do take amitrptyline at night and it helps me to sleep. I am also trying antihistamines for the itching but it doesn't seem to be working! I have clinitas eye gel which is quite good.

I do have some eye drops that can be used 5 times a day or more, they are called Carmize and are vials that i can keep in my bag for use when I am out. I think one of the  the reasons for my sore eyes is because i rub them when they itch so badly, although it just makes the itching  worse! Lanacane is good for helping the itching on  my forehead but of course it can't be put near the eyes

Jane, I also have lingering and new crazy symptoms that continue ever since my first episode. It seems like an ongoing battle. My new mission has been to continually work on boosting my immune system. Hoping that my body can fight off this horrible virus!

400mg. My mother-in-law has taken one a day for 30 years. She stopped because she thought she must be over this after all these years. After 2 weeks she started having the all too familiar pain I her side. She is now taking them again daily. I started doing it and I believe it really helped, but then my head for involved and I started worrying about taking a prescription antiviral on a regular basis, so I have been taking 2-3,000mg of lysine and Oliver Eleanor extract. I'm still doing okay. I had a very stressful week and I am feeling a sore throat coming on, so I am worried the shingles may attack!!

Thanks very much for replying. I do hope you are not in for another attack, and that your sore throat has passed. I would be glad if you could ask your mother in law what the strength is of the pill she takes, that is if it is 200mg or 400mg (or more or less than those). You are right to worry about possible side effects of anything we take.  I had an unexpected and almost fatal reaction from months of using Lidocaine on my skin. So I guess the only way out is to try not to use anything for a long period.  Even Lysine can be harmful, so do take care. All the very best, Pamela

 

She takes 400mg dosage of acyclovir. I need to look into the side effects of lysine. I thought that was safer. Yikes!!

Had the flu really bad, so I took 3 lysine tablets at once (500mg each) and vomited.. too hard on the stomach.  But I began feeling better within the hour afterwards.  Now I normally take half a tablet to one almost daily.  I find it helped to alleviate flu symptoms in its tracks as well.  I haven't had a flu shot in 2 years and managed well thus far.  I also give it to my teens when they start feeling crummy.  It's been good.  We don't eat enough high quality rare beef which is a good source of it.

I usually do not get the flu shot, but I thought I should this year. With the shingles this year my resistance has been down and I can't seem to fight off anything that goes through my house. I use to be able to take care of my sick kids, sleep next to my sick husband and not get sick. I've been taking 1500-3000mg a day of lysine also. It seems to help when I start feeling the sgingles symptoms, but I still get run down easily.

Thanks very much Michelle. I have the 400mg dose and will try it in the hope that it helps. I didn't want to scare you with the Lysine.  It probably is safer as it is an essential part of one's diet, it's just that one's body is so complex that its equilibrium sometimes gets upset without our knowing it.  I guess that must be what has happened to us all with the shingles.  GRRR!!   Be well, Pamela

i take valtrex 1000mg 2x a day