Shingles symptoms afrer 7 months

Infections
1

I had shingles last July until until November 2015

It started on my shoulder and went up the left  side of my face.

I was in bed for 6 weeks, could barely walk. I had anti viral tablets, but did not reach the 72 hour timeline for Prednisone .

The second week I developed Bells Palsy on the same side, my eye and face dropped.I could not close the eye .

By November i was pain free and  was almost  back to normal.

I was very slow walking with balance problems and by Christmas had a fuzzy head and memory problems. I kept thinking it would pass but it hasn't. My doctor did not know what was wrong.

I looked up symptoms on the net, which all said it sounded like Vestibular Neuritis, and it could be Ramsay Hunt Syndrome .

I had no pain or ear problems. They sugested it might be the 8th nerve connecting the ear to the brain causing the vertigo, my head is still very confused. My doctor has just started me on Prochlorperazine two days ago, I am hoping it will work .

Has any one else had these sort of compications ?

I am getting quite depressed with it all., and can't wait for it to go away.

2

Mine feels all internal, I had a small area on my back that blistered and under my breast no blisters but itchy rash.  I'm still on the meds, but I hurt.  I already have fobromyalgia and rhumatoid and osteroarthritis.  I have so many bills and have alredy missed so much work, but I just want to stay in bed.  I'm lost and confused already with the fibro fog and memory problems, this is realy compounding things.

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Christine,

I am so sorry for your suffering.

It sounds like Ramsay Hunt Syndrome as you have Ataxia or balance problems and Facial Drooping. I do not know if you had pain or vesicles-blisters in your ear or mouth.

I have had Ramsay Hunt Syndrome-Herpes Zoster Oticus in my right ear every three to five weeks for the last 20 years. I am a nurse practitioner in the States. The first time I had Ramsay Hunt Syndrome, I saw two ENT physicians who thought I was narcotic seeking as they could not see the vesicles-blisters as yet. The third one believed me and diagnosed me, even though the vesicles-blisters took three weeks to appear. I was in agony. I become ataxic, have facial drooping, severe ear pain, headache, fever, malaise, fatigue, chills, sweating, muscle aches. I take Famvir 500 mg 3x daily for 7 days and an Opioid. I try to make the most of my life , but when it hits, as it certainly does for several days every three weeks, usually, bam, I am down for the count! I become hazy in my thinking.

I would recommend your seeing someone for your depression as it has gone on too long. You might benefit from an antidepressant. Sometimes they help remove some of the cobwebs from your brain and help you to think more clearly. I am on an antidepressant, so I know.

Let me know how I can help you.

Best Wishes

Merry Juliana

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Thank you Merry for replying to me. I can see you really have had a bad dose, I didn't know the the symptoms could be so bad.

I did not have the blistsers in my ear, just up the side of my face to the ear. I did read, it can just affect the nerve from the ear to the brain, I did have a very sore neck and suppose it is the cranial nerve causing the dizzyness and balance.

All your other symptoms I did have for a month before they started to get better. My doctor too cant see anything in the ear, and really doesnt understand what i am trying to tell him. The head is very hazey, and starts as soon as I get out of bed, even after starting the pills .

I had no medication at all from November until now.

I started the pills three days ago, and am not sure if they are helping yet. It is frustrating . I hear what to are saying about the depression ,

I was trying to avoid going down that path but will if I have to.

I forgot to tell you I live in New Zealand and our health service is not as good as yours. I dont recognise the Pills you have, they are probably better than mine. I am 72 this year, so mine is probably age related.

I am so sorry you have to put up with all this so ofren, I dont know how you cope.

Thank You again

Christine

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I understand Andrea, I could not get out of bed without help for a month or more. It really is the best place. to be. I got through 200 Paracetamol in 6 weeks. I hope you have something stronger than that. My memory is still not very good .

I wouldnt think you will be ready for work for a while yet.

Take care

Christine

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Dear Christine,

I feel for you as it is not age related, it is the Herpes Zoster-Shingles, Ramsay Hunt Syndrome sequelae. I have learned how to cope, and my family is most understanding of my issues. I am 64 years old now and never mind saying that, as many people never make it to that birthday. I hope you have a wonderful and supportive family. I had to retire after a second ischemic stroke. Although I had ITP, the clot buster drug, I received it later than I should have and lost some of my neurons. I can still walk and talk, though, and enjoy life. It is difficult to deal with this disease and the ramifications. Please let me know how I can help you.

Best Wishes

Merry Juliana

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Hi Merry

I am so so sorry to hear about all your problems, you really have a lot to contend with.

By age related I meant my immunity must be low, they say it gets less as you get older.

I am writing this in bed lol it is easier to use the

tablet in comfort before the fuzzies start .

I was quite fuzzy yesterday, some days are

better than others.

I read there are rehab exercises that will help

with nerve problems, I just got blank stares from

my doctor , he said that is in America !!

this tablet is playing up I should be on the

computer, I lost my message yesterday so better be quick. So lovely to hear from you, take care

Christine x

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Christine,

Now I understand, re age related. Your doctor must think we are very rich in the US, re therapy LOL. I am immunocompromised, as I have autoimmune diseases and breast cancer, caught early, no lymph node involvement. When I am ataxic, I weave from the couch to the bathroom and back to the couch again... sometimes I write an entire epistle to someone, only to lose it. When the site acts up, I just send without signing and write part 2 continued on the 2nd page, so the person knows I was interrupted.

Merry Juliana

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Hi Merry, I've been following your posts periodically and am amazed at your cheerful attitude with all you're dealing with...God bless you!

I am a 78 yr old female (Caucasian) female in general good health other than environmental allergies (lifelong rhinitis) and Graves Disease

(Radioactive Iodine TX 1980) have taken synthroid/levothyroxine daily since. About two to three weeks prior to shingles diagnosis, I developed severe back pain (very unusual for me) and general flu-like symptoms...I got up with a red rash on chest on

Jan 30, 2016 and went to Urgent Care and was diagnosed with shingles prescribed acyclovir within hours after breakout; I completed the 7 day tx along with naproxen, gabapentin (only took 3 or 4) and tramadol for pain. The breakout rash was mild on left shoulder, arm, and breast; but, the pain was excruciating, unbearable for about 6 weeks.

Since, I have had a few good days, but mostly feeling really bad...overall weakness, extreme fatigue, lightheadedness, brain fog and general malaise. Prior to this illness I was able to function quite well putting in full days. Now, if I get less than 10 hrs restful sleep I can hardly function. I have almost normal 2 or 3 days, and then get hit with back ache and flu symptoms again ... Here it is 4+ months since I was diagnosed and no one understands why I'm not well ... I live alone and do all my own housework, some yard work and all my shopping and handle my own business affairs.

It has become extremely difficult. I am easily agitated which is not normal for me.

I take multi-vitamins and L-Lyseine,

Levothyroxine 88mcg, Zyrtec 5mg, Lisinipril 5mg.

With your training and experience I would like to hear from you.

Thanks, Joyce

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Dear Joyce,

I am so sorry for your suffering. Remember, Herpes Zoster-Shingles is a disease process that literally takes months to a year to overcome. I believe you also have hypertension as you are on lisinopril.

You had a viremia circulating in your body that affects your central nervous system. It causes many people to feel fatigued, malaise, cognitively impaired (or have brain fog,) emotionally labile, irritable, as the virus has attacked your sensory nerve root. It also has caused a true illness with the multiple symptoms that persist long after the rash is gone. You did not say that the pain persists. Does it? If so, then you have post herpetic neuralgia. I truly feel highly irritable sometimes with my recurrent Herpes Zoster-Shingles, and I dislike being this way. It is totally out of character. The virus has caused an inflammation. Herpes Zoster-Shingles strikes the older ones more aggressively, although it certainly can strike anyone with a vengeance. My first episode, I literally wanted to cut my right inner ear out à la Van Gogh due to the agonizing pain. Of course, it took three ENTs before the third one believed that my pain was real, and he diagnosed it after the vesicles-blisters appeared on my outer ear. The first two thought I was narcotic seeking.

Do you have any good friends that could help you with some chores? I know that I feel confused, mentally foggy with my severe episodes, but just ride them out. I am 64 years old and have had two strokes. I received the clot buster drug tPA each time. I therefore am not paralyzed or aphasic. Regarding the Herpes Zoster-Shingles, I have learned to accept that this is part of life and go with the flow. When I had the strokes, I had to work hard to overcome the deficits, as you always lose neurons, some motor, speech, and cognitive function. I just work hard to get back what I lost and accept the "new" Merry.

Do not worry what other people think! You know what you are going through. Housework can wait. If you need to rest, rest! I have slept 18 hours straight sometimes during an episode. Do what your body is telling you to do. I find I need much more sleep after I have had two strokes, Herpes Zoster-Shingles, and Cancer. So I sleep. (I needed sleep with Herpes Zoster-Shingles) Please yourself. I know what you are going through.

Please let me know if you are still suffering from pain.

All my best, Joyce.

Merry Juliana

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Thanks, Merry..for your response.

I cannot stress enough how grateful I am for this forum. I was thrilled when I happened upon it. I believe it was divine intervention as I have prayed to understand more about what I am going through. You are certainly an inspiration to all of us!

No, I am free of shingles pain other than an occasional twinge (praise the good Lord)!

I do have bouts of itching in the area where the shingles rash was when I get hot or frustrated, irritable and agitated, all of which happens frequently nowadays. So out if character for me...

I failed to mention...my eyes are itching a lot, and even though I have allergies, never had my eyes itch like this before shingles. Also, when I'm experiencing flu-like symptoms my vision is blurred, which is very disturbing...on a good day it seems to clear up, so I know it is related to this post shingles syndrome.

Actually I don't think I have true hypertension. although I had an episode last summer several weeks after a terrible attack by a swarm of hornets...I had stings all over, but did not go to ER or doctor, just treated with home remedies. Several weeks later, my BP shot up really high (my face turned scarlet and I was very dizzy) I wound up in ER, so I was prescribed several meds. After a few months BP was under control with duet, exercise and 10mg Lisinipril...I break it in half now and only take 5mg. When my primary Doctor found out about the hornets attacking me he seemed to think the venomous toxins may have caused the BP episode since I had no history of hypertension at all, it had always tended to be a little lower than normal.

Anyway, I haven't actually exercised per se since shingles diagnosis so I've gained about 25# not happy about that, and although I do everything for myself, I'm like in slow motion.

Before shingles I moved at a good pace and tried to walk a lot...now, I am so low energy that getting exercise outside of what I have to do, is just not possible.

Do you think my thyroid disease (Graves but since RI tx I am hypo on levothyroxine daily) may be contributing to difficulty in getting over shingles or the viremia? I know it is an immunosuppressive disease and so are allergies, coupled with my age is probably why I am having such a hard time overcoming it.

Thanks so very much for your help and advice. ( I have more faith in a good nurse practitioner than most MD's!)

Do you think I need to be on an antiviral? I started taking L-Lysine 500mg daily about 2 months ago after perusing this site.

Again, Merry Juliana (what a beautiful name!)

Thank you so much! God bless you as you continue meeting your daily challenges.❤️

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I failed to express adequately how blessed U am to be free if that agonizing pain that lasted about 2 months; I was a basket case! My family has no idea what shingles are all about and I am normally a strong person emotionally and otherwise. With the realization that I am greatly blessed to be free of the pain, I hope I don't sound like a whiner, but this post shingles syndrome has me bound.

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Is there any way to edit what we write here? I made so many typos!

Another thing, the night before I broke out with the shingles rash I had every symptom of a heart attack, all pain in chest left side, yet something told me it wasn't a heart attack so I didn't call 911...(the next morning when I saw the red spotty rash I knew it was probably shingles) ..the chest pain continued for at least 6 weeks, is this common to have so much chest pain? Also, I had chills in the beginning and throughout, and even now when I have an episode I may be hot and have a chill at the same time, very strange ... feelings I've never experienced before... Just wondering if all this us common; I know we're all different and shingles effects us differently, but have others had my same symptoms?

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Joyce,

When you are having chills, sweating, and feeling hot and flushed, those are signs that you were having a viremia or virus circulating in your body. You have been ill, and and would be fatigued. Also, as you have gained 25 pounds, it will make you feel more sluggish. As you are on Synthroid, your thyroid should be normal. If you have gained weight, you might need a current blood level of the thyroid hormones.

An acute episode of Herpes Zoster-Shingles can mimic a heart attack, pleurisy, and many other painful conditions, but I wouldn't take the chance and not go to the ER.

There is no way to edit your comments once you have posted.

If you feel you are having recurrent episodes, you would have similar agonizing pain in the same area, usually with the rash, and the same symptoms as before. In that case, please see the physician and get on an antiviral STAT. However, one can experience fatigue, malaise, headache, flu-like symptoms, aches and pains, before, during, and after the episode. The itching of eyes might be related to spring allergies....I do not know where you live. I hope this has helped you somewhat.

You can take Benadryl OTC for itching.

All my best.

Merry Juliana

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Thanks, Merry...

Recently I saw my endo for bloodwork and it came back normal so she didn't change my medicine. She seemed to think my ailments are post shingles, the virus. I take Zyrtec and use Flonase for my allergies and an inhaler when I have allergic asthma. The extremely "itchy eyes" is something new, I've never had this before!

I meant to ask if your strokes were related to shingles. I read somewhere that shingles can cause strokes and heart attacks. You mentioned you have shingles episodes in your ear every few weeks; when did your strokes occur?

I know you get tired of answering the same questions...but rest assured what you're doing here is a form of ministry. I'm sure you're helping many people. Thanks ever so much.

Peace and Blessings,

Joyce

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The strokes occurred post shingles and I am certain the chronic inflammation helped contribute to the strokes, especially as I had Herpes Zoster-Shingles when I sustained the two strokes. I also have Atrial fibrillation, which is also a contributing cause to ischemic strokes.

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Hi Merry

Just want to thank you for all your help, at last I am getting somewhere .

I found a physio to help with exercises for vestibular balance problems.

She sent me to the hearing clinic to check my ears and I ended up wth earing aids !!  I still have to see an ENT to check there is nothing else wrong behind the ear. My Balance has improved, so maybe it was just a matter of waiting out the 12 months, who knows.

I still have a fuzzy head most mornings. but not as bad as it was.

Joyce seems to have most of the symptoms I had, apart from the palsy

I hope you are better soon Joyce

Christine NZ

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Yes, Christine...I have brain fog most every day, and difficulties with reading comprehension, but hopefully, it's getting better. I have noticed blurred vision on days when my brain is foggiest. I'm not a tearful person, but quite weepy since shingles, maybe frustration and agitation with so little energy...can't get anything done, and I'm normally pretty active.

Hope you're getting better, too. I don't think anyone (other than those of us who have been so afflicted) has any idea what shingles are about; people laugh when you mention shingles! I would love to get folks educated about this disease ...

Peace and blessings,

Joyce

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Hi Joyce

I just tried to reply to you and lost it. I am on the tablet and it doesn't like me. I will try again tomorrow on the computer. All you said is quite right

hugs Christine

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Hi Christine,

No problem. Hope you're feeling better.

Joyce