I have been getting shingles on my ear for the past 20 years, and after returning from holiday recently I have extreme flu like symptoms again. I only recently discovered that it was shingles after my last flare up (7 weeks ago), so i returned to the doctors yesterday. The struggle for me is that no one can see the pain you are in before the blisters come out, and it is only when the blisters come up that you can "prove" that you are unwell. I am on sleeping tablets and have experienced extreme weightless over the past year. My doctor has said that it is just pain from the recent blisters, but I know that until the blisters come up I am not going to get any help. I am thinking of going private and wondered if anyone on this group has got a second opinion? Any advise would be appreciated.
Can I say that before you go private for a consultation , think twice, I paid £250 to see a Consultant and I may just as well have thrown my money out of the window. He could tell me no more than my doctor , so I am back with the NHS. Also BUPA and the like do charge a heck of a lot. We must protect our NHS because loads of us would not be able to afford medical treatment if we did not have it. I realise that now. A 15 min procedure, which I had had previously sat in a chair in the doctors , was going to cost just short of £2,000. When I queried it, I was told, oh well you are admitted as a hospital patient for a day, I told her exactly what I thought of their money making machine.
Hi Caddy
oh bless ya .. I know what its like i have had it 4 times this year ( twice in may ) always on my butt cheek, but I do get pain before, intense deep burning stabbing pain.
theres nothing doctor can do anyway, there is no cure, only give you aciviclor cream or tablets, and that doesnt cure it just relieves it or slows it down from a bigger outbreak..
there is a injection for it now but thats not 100% cure either 😣
have you had other blood tests done at all, mine also started post menopause i am 51 .. Also i discovered i had low B12 and Vit D deficeiency etc ..
and having treatment for that now .
stress and anxiety, injury etc and body working overtime due to deficiencies can also trigger shingles .. i had a back injury ( 3 bulging disks) and then i got my shingles reoccurring.
as you may know after we have chickenpox Shingles lays dormant in our nerve roots and things can set it off again
take care hun,
jay x
Forgot to say
the injection is called Zostavax
jay x
Hi Dixieb,
Thank you for your advice I will wait for my blisters to come out, and then return to my doctors. I feel so down and would do anything for this to be gone, and to get back to myself. I have not managed to drag myself to work today as in so much pain, so hoping this is the worst stage of the symptoms before it appears.
Looking at others comments it helps to know I am not alone in my experiences with shingles.
Hi there
I must say I now am on lyrica tabs 100mg once a day and aciclovir 400mg daily and for about a year have had no symptoms
Maybe speak to your Gᑭ
Zostavax is a vaccination not just an 'injection'! I understand that it doesn't 'cure' shingles but can help if given before any attacks happen in SOME people! I don't think it's given during a bout. I was informed that in the UK/NHS it's administered only to patients who are between 70 and 79 on a catchup programme, not to the general public. Elderly people are more at risk due to their immune system being less efficient as ageing occurs! It does not always prevent shingles anyway.
Yes ellie
Vaccination / injection
i dont live in UK we can get such vaccinations here where i live if at higher risk, they do the vaccination when the bout of shingles has passed.
but when its reoccurring me personally dont know if i am clear or not, as we just dont know when its on its way until the deep pain starts
jay
Hi Caddy. Lots of info on here about shingles and on these forums from others who have had it. See my reply to jayneejay. What age are you? I've had it this year, April. Had Aciclovir for a week but still had a couple more outbreaks in the following couple of months. It does tend to linger. I'm now taking L-Lysine daily, (amino acid) which is supposed to help. (Jury still out on this one!)
Hi Caddy
this is some useful info ..
I have been fine since May and been having B12 and Vit C ..
Emis Moderator comment: I have removed the information that was pasted in full here from another site as it may breach other website's copyright and the information could be medically unproven. Please do not paste whole articles in posts. If users want the information then they can ask for these via the Private Message service.
http://patient.uservoice.com/knowledgebase/articles/398331-private-messages
None of this is proven by medical doctors! This sort of treatment could be dangerous if used unsupervised by people who don't have any medical knowledge!
There is a leaflet on Zostavax here https://patient.info/medicine/shingles-vaccine-zostavax
Dear Caddy82;
I have had reoccurring Shingles for 35 years. About 5 or 6 years ago, I went on Valtrex, daily, to prevent Shingles. Do you have any other doctors besides your primary? My neurologist has taken care of it. Also, infectious disease specialist are the real key to help. I have so many experiences, it would be best if you looked at my comments to other people on here. Just use my username to find them. Also, I still get occasional outbreaks,and for those, I double up on the Valtrex for 5 to 7 days. It's better than getting Shingles very 6 to 8 weeks. Been there done that!
Take care, and if you need to talk, just let me know.
1Roswell
Dear Caddy,
First of all, I am so sorry you are experiencing excruciating and debilitating pain that could be lessened if your physician were experienced in treating Herpes Zoster.
May I ask a few questions first? How old are you and do the blisters come out through the
ear canal to the outer ear and onto the Pinna or outer ear or do they show up more behind the Pinna?
Are you immunocompromised with autoimmune diseases such as SLE, RA, Psoriasis ITP, or taking Prednisone etc? Do you have Cancer?
Herpes Zoster starts with the predromal symptoms of flu like symptoms of fatigue, joint and muscle aches, low grade fever; if you have Herpes Zoster Oticus, you start with an excruciating headache that is often worse than a migraine, localizes to one side, and takes a week to ten to fourteen days before the blisters appear on the other side of the eardrum. The pain is agonizing.
Is this what you are experiencing?
My suggestion is changing your physician, of possible. I am an NP in the States, have Herpes Zoster Oticus in my right ear every three to five weeks for the last 19 years.
I take an antiviral at the first hint of pain. This ameliorates the pain immensely as the virus doesn't replicate to the enormous degree that waiting until it shows up on your Pinna. Most physicians are abysmally ignorant re disease processes and arrogant to their patients.
You need to find a physician willing to prescribe antivirals to take at the first hint of pain. You also need a supply of narcotics on hand to take. I find I only need narcotics three days if I catch the Herpes Zoster virus in the early stage. It is when the illness has dragged on that the disease is unforgiving, more painful, and the head is one of the most agonizing locations to have it.
I am also on
Topamax 100 mg 2x daily which helps and use Auralgon ear drops which has Benzocaine, a local anesthetic to soothe the excruciating pain.
Hopefully this will help.
Good luck.
Merry Juliana
Hi Ellie,
I am continuing to look through as much information as I can , and others comments
I am 33 years old, and have a family history of shingles.
My doctor seemed sure that it would not reoccur following the Aciclovir i was given, but from your experience and others I am reassured that I am not going mad!!!
Thank you for sharing your experiences.
Caddy x
Hi Jay
I thought it was bad being on my ear it must be very painful being on your butt cheek.
I have not had any blood tests just given a course of aciviclor tablets, but I will request one following your comments.
I am 33 years, and have family history of shingles. An immediate family member has had shingles go to her brain, which she will not recovery from due to the damage to her nerves.
I have a high pressured job, and have also had a death in the family. I am looking at ways I can cut down stress, but being unwell is also putting a lot of pressure on me.
I hope that I can get some further help once this episode has come out.
Thank you for your reply
Caddyxx
Hi,
I wasn't aware that there was medication you could take daily. How many occurrences did u have before being prescribed these?
Thank u
Hi Merry,
I am 33 years old.
The blisters appear on the outer ear always on the same side. I am experiencing all that you have stated above. It starts with fatigue / / very bad sweating, and then feels like really bad flu symptoms. The headache comes closer to the blisters coming out, and I can hardly move from joint pain.
I will speak to my doctor about prescribing the antiviral tablets, as I certainly can't continue to feel this pain. If not I will look to change my doctors as you have suggested, I need someone who understand as is willing to help me get this under control.
Thank you for your comment, and sharing your experiences.
I will keep you updated xx
Hi Caddy, I suggest you do see a diiferent GP as so many of them don't have much if any knowledge about shingles or PHN! (Neuralgia after shingles). Maybe phone your surgery and ask to see a doc who does understand and explain to doc what you have been reading on here. The NHS docs here where I live in the UK use Patient UK for reference, mine did when I was diagnosed to check before prescribing. As Merry said, it's important to get a correct dignoses as soon as possible especially for the ear or eye. The NHS does operate in a different way to the US and other countries so best to find out what's what and get the correct treatment. Best wishes, Ellie
There isn't! I was severely affected by shingles in my facial nerve that gave me Ramsay Hunt Syndrome after about 4 more attacks my gp thought there had to be away to combat this. So we are trialling daily aciclovir 400mg and so far so good ☺️