I'm newly diagnosed and so fatigued.

Merry,

I REALLY appreciate your post.  I am having a Shingles Outbreak right now and am now at the point where my leions are scabbing over.  During the day, I do not have pain (while I am on my pain meds -- 600 mg of Ibuprophen every 6 hours).  But at night, I just cannot sleep at all . . .and this is when I hurt more.  What do you suggest I do?  I see  that you wrote about using Benadryl.  My outbreak is on my lower face, in my mouth (ugh), and etends up to my left ear.  I am so sorry to hear that you have trouble with your ear every 3 to 5 weeks.  How do you deal with this?  Should i expect this kind of problem as well?  I am 48 and this is my first experience with Shingles.  Would the vaccine still help me once I get better?  

Sia : )

Dear Lisa,

Is this your first post or did I somehow miss you? I am so sorry for your pain. Your physician should have prescribed a stronger analgesic for your pain. If

s(he) won't, there is Aleve, OTC, 220mg which is taken every eight hours. It is longer acting duration 8-12"hours. Prescription strength is 440mg or 660mg every 12 hrs, but I would call your physician to get permission to take that dose. All the NSAIDS must be carefully taken, as they raise blood pressure, and if taken over a long period of time and or in high doses are toxic to the kidneys. They also can cause ulcers, so avoid any alcohol, and take with food. Better yet, ask your physician for a stronger analgesic such as an opioid for the pain at night. As you have already read, Herpes Zoster-Shingles is considered one of the most excruciating conditions known to man. Many physicians are abysmally ignorant regarding this disease. The clinicians should automatically offer analgesics to the suffering patients. You probably have the fatigue and exhaustion, as well. When you have the Herpes Zoster-Shingles in your head, I find it harder to disassociate the pain, than other parts of the body. Do you have other medical conditions?

I hope this helps you.

Let me know how you do.

All my best.

Merry Juliana

Hi Lisa,

Oooops!

Regarding the vaccine. ..

I am not certain where you live. I do not know the UK standards, but the US insurance dictates who pays for what. From fellow sufferer comments, I believe there are bizarre rules in the UK, re the Zostavax.

There is a more efficacious vaccine by GlaxoSmithKline coming in 2017 called Shingrix. It is 97.1% efficacious as opposed to Zostavax which is in the 50-57% range. Usually, insurance will not pay for the vaccine for someone as young as you. By the time you turn 50, Shingrix, the efficacious vaccine, will have been approved by the European, UK & FDA Drug Administrations. I would wait for that vaccine.

I had the Zostavax, and it didn't help me. Unfortunately, the immunity wanes over a period of time. The Shingrix doesn't.

Merry Juliana

Thank you so much Merry!  The information on the vaccine is CRITICAL.  I did not know there was a new vaccine coming out next year -- I will definitely get that one.  By then, hopefully, my body will be ready for it.  I plan to switch over to Aleve . . . I have take quite a bit of Ibuprofen and I am worried about my kidneys.  As for other health conditions, I am diabetic.  At my worst with Shingles, I can honestly say I was ready to totally give up and move on to another place . . . the pain was that bad.  Thank heavens my husband got me on a pain medication schedule.  I had been taking pain meds (hydrocodone) and then not taking the next pill as scheduled . . . and the pain would set in and I was not prepared.  I do not like hydrocodone which is why I moved to Ibuprofen . . . now to Aleve.  As for sleeping, maybe I will take the opoid at night.  It is worth a try . . .because I am only able to sleep 3-4 hours at most and I am getting really tired.  I still have not figured out when to take all my meds.  My doctor told me not to take more than half of my diabetic meds since I have not been eating that well and my blood sugar is good (low 100's).  

Thanks again for the information.  I really like this forum!  Friendly people and regular posting . . . 

Have a wonderful weekend!!

Lisa  : ) ; )

Lisa,

As you are a diabetic, I frankly would use the hydrocodone more and NSAIDS less as the NSAIDS are toxic to your kidneys. You know that all diabetic patients have kidney damage, sooner or later, and you need to protect them. Hydrocodone is less toxic than the large amount of NSAIDS.

You will sleep better, as well.

Hi Merry,

Thanks for your fast response. I've seen that you help so many people here with accurate advice. I live and work in Southern California close to Los Angeles. I am hoping I can return to my Monday through Friday, roughly 15-36 hours per week hours after a two week convalesence. I don't know if that's realistic. I'll ask my Kaiser doctors what will be available once this part passes. I was glad to hear about the new vaccine.

I've consciously avoided prescription meds whenever possible and only take rizatriptan prn for the migraines. My pain management doctor put me on amitriptyline for a month but i was anxious about working safely with the foggy feeling it gave me. Also, I recently weaned myself off of Benadryl, after taking nightly for just over a year, due to recent research asociating long term use with dementia. However, I know that we need sleep for our bodies to heal, so I will take 25 mgs of the benadryl, along with sleep hygiene and see if I can get back on track.

Thanks, Merry and all who commented. Your experiences and knowledge help us all.

Yours,

Lori

I'm sorry to hear of your recent outbreak. I was diagnosed with Shingles two weeks ago and still have numbness and some pain. Like you, I couldn't sleep at night because of the sores on my scalp and face. My Dr prescribed Lyrica to replace the Ibuprofen 800mg originally prescribed and it was such a Blessing. After one week I tried to stop using it because I don't want too many meds in my system and found out I still needed the Lyrica. I hope this helps.

Hello merry,

Could you tell me if it's normal to still get tired much quicker than before, 12 weeks after being diagnosed with shingles? i always had so much energy before but now I notice that after shopping etc I feel as if I don't want to do as much as I get tired more easily. Apart from that I do feel well. 

Hi Jane,

I am happy you are doing much better than before. Exhaustion and fatigue are a huge issue with Herpes Zoster-Shingles that take months up to a year to recover from. Think of it as a process. Most clinicians are unaware of the pre and post eruption phases of Herpes Zoster-Shingles, and fail to educate the patient. Try to go easy on yourself and rest as much as possible. I must say, my standards of cleaning the house have diminished since my strokes and Herpes Zoster-Shingles. I do what I can, when I can, but don't persevere about it.

Be kind to yourself.

All my best,

Merry Juliana

Jane, I was very interested to read that you take amitriptyline at night and would like to ask if you experience any side effects.  It is one of an armoury of medications I have had prescribed for my PHN over the past 13 going on 14 months, but I have never dared to take it.  I am particularly frightened by the prospect of nightmares, and possibly suicidal thoughts, though I realise that not everyone gets them.  Is it possible to just take one occasionally during a particularly sleepless night or is that a recipe for disaster?  Nearly everything one reads tells one never to stop or change the dose, and that makes obvious sense if one takes it regularly.  I am talking about the occasional use of a single tablet.  I wonder if Merry or Lori with their nursing experience can also advise me. If amytriptyline is not advisable, is there any sort of painkiller/sleeping pill that you do recommend for occasional use.  I am woken every night by ferocious itching and usually try to take my mind off by reading.  Sometimes fatigue takes over and I  fall asleep eventually, sometimes I spend the whole night awake and then cannot function at all the next day, so I do need some relief. I confess to being a coward about medications, but I would very much appreciate some advice from someone who has actually had experienced a specific one for our common problem, be it itching or pain. My heart goes out to all you sufferers from this affliction.

Hi pamela,

I only take one pill at night and have had no side effects at all, it is only a low dose, 10mg but enough to help me to sleep, so I don't wake up in the night with the itching, Apart from that I have been told to take the aciclovir just for one more week, I have not had a heradache for weeks, but the itching is the worst thing now, especially in my eye socket and forehead, Since yesterday my eye has gone back to normal and the red has gone at last! I hope something works for you, have a word with your Dr re Amitriptyline, I forgot to take it last night but I still slept ok, Good Luck! 

Pamela,

I saw your comment re Amitryptyline. I have taken Elavil in the past due to chronic pain. In a low dose, usually one does not experience nightmares or suicidal ideation. Actually, in higher doses, one does not usually experience these reactions, either. The Drug Enforcement Administrations in Europe, the UK, the FDA etc are required to place these warnings on all antidepressants as a certain percentage of people who are already depressed are suicidal and will express it more and be more functional as they start treatment with an antidepressant.

Elavil is non habit forming and is great for people who have insomnia and need a Kickstart to get their sleep cycle back in order. I would probably take it for a few days in a row to see if you can maintain a regular sleep cycle. I would also read articles on sleep hygiene as they have been helpful to me. When I have Herpes Zoster-Shingles every three weeks, there is a week or so when I know I will not be sleeping well. The virus is activating my central nervous system and my sleep center. I just accept this.

If you have ferocious itching, and it is from the Herpes Zoster-Shingles, have you seen the dermatologist?

The three medications most helpful are

Benadryl OTC

Atarax Prescription

Doxepin Prescription* best

All antihistamines are weight gainers and dry out your mouth. They are contraindicated in urinary retention and glaucoma.

These all cause sedation and should only be taken at night.

I hope this helps!

Merry Juliana

Thank you very much, Jane and Merry, for replying so promptly. The dose I was prescribed for the amitriptyline is the 10 mg and on the basis of your positive experience with it, I think I will venture to try it for a few days to see if I can return to a normal sleep pattern. It is reassuring to know that it is not habit forming, as that was another worry. Yes, I did go to a dermatologist who prescribed a cortisone cream and a moisturising cream, but unfortunately they didn't make any appreciable difference and the process of applying them, itself, triggered the irritation.  The only thing that did give some relief was lidocaine cream, but as I mentioned in an earlier post, I overdid it and ended up with a total heartblock. The dermatologist did warn me but it was already too late. My shingles is on my back and abdomen, and once the blisters dried up, tiny spots remained which are the source of the continued itching.  I do hope your eye is healing at last, Jane, and that you, Merry, will see some light at the end of the tunnel one day. Thank you for your support and valuable information.

Thank you Pamela, my eye has gone back to the normal colour in the last 2 days, it's nice to see the white clearly instead of pink, which I have had for over 2 weeks! I was given some steroid drops on monday and I think these have helped! I still get a terrible itchy eye in the socket, and sometimes on my forehead where the rash was. but the itching head stopped weeks ago so I hope that maybe in time  my eye will not itch! I find it is so much better when I am at work or just out with friends and focusing on something else, it seems to itch more when I am at home alone! Good luck to everyone  and thank you to those who have helped just by their comments, I feel i am not alone.

Hi Jane,

I will have to find out what codrydramol is. I suspect that is the British word for it? I did try amitriptyline for preventative migraine treatment and it made me too dopey to feel I could work safely with my patients. But i'm so glad it has helped you. I will try to keep an open mind about the meds. Thanks for sharing your experience and taking the time to respond. I will keep your words in mind for possible future solutions. I hope your depression is better. I know how awful that can be from my migraine experience. After reading how well amitriptyline has worked for you and Merry, I am tempted to try it gain.

Yours,

Lori

Hi Pamela,

I'm a coward about medications too, even though I am a nurse! Merry gave a very good response to your question and after reading her and other responses I am willing to try it (amitriptyline) again as a trial. My pain management doctor didn't really like that I gave up on it. We all respond differently and have to see what works best for us. I take 3 mgs, extended release melatonin as a regular sleep aid. I also heard of a NASA sleep light bulb that is helpful for cueing the body to produce normal melatonin.  I suspect due to the central nervous system irritation by the shingles virus, the melatonin isnt enough to keep me asleep. Tonight I will start a 2-3 day regimen of 25 mgs. Benadryl with good sleep hygiene (google it, if you don't know what that is, lots of good ideas online). I'm getting pretty tired now and will rest for a bit.

My best to you.

Lori

 

Co dydramol is a pain killer, but amitriptyline was originally used for people with depression but now it is used to calm the nerves, in my case in my head where the shingles was,but it really does help me to relax and sleep, I am no longer feeling depresssed, it was due to all the pain I had and my eye was so sore for so long! I am usually a cheerful person but it's very hard to feel that way when an illness goes on for so long.

Jane and Lori

FYI: Lori

Co dydramol is Tylenol with Codeine in the States.

I certainly have Googled many of the UK medication proprietary names!

Merry Juliana

Lori, I think I'll pluck up the courage to try out the amitriptyline and perhaps we can compare notes, though as you very rightly say, we all react a bit differently, so we may not have the same results.  But it might give us some sort of a guideline.  Good luck and let's hope it helps. I am pretty desperate now,  so perhaps more motivated. My doctor was also disappointed that I had given up on it, without really trying, so here goes!

Sounds like we might have a similar attitude and experience. Im so glad to have found this forum and connect with you. It makes going through all of this a lot better.

I did take the 25 msg of Benadryl also known as diphenhydramine and slept much better. From 10:30 until 7:30, instead of 4 or 5, as before. I need at least eight hours sleep to feel rested. Only problem was feeling really loopy and groggy for about an hour upon weakening.but that didn't last long.

That groggy feeling is what has always put me off taking anything to help me sleep.  I usually feel groggy when I wake up normally!  But perhaps one can get round it a bit by taking it a bit earlier and reckoning to be a bit less active for a while on waking.  It's certainly worth persevering to get that precious full night's sleep. I also have always needed a good 8 hours even when I was much younger, which is quite a disadvantage in itself.  Good luck !