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Old 04-03-2013, 02:05 PM   #1
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PHN without the Shingles rash

Hello fellow sufferers,
I first went to the doctor with pain 'under my left rib cage' in Sep. 08. After
the first 3 years and running numerous tests on all of my organs, I was told
that it was "all in my head" and there was nothing wrong, (one doctor even
accused me of just wanting pain medication), then I was sent to a Pain Management Specialist in the little town of Show Low, AZ. It was he who discovered the 'virus' in my body via blood work. It was he who explained to me that the virus simply did not make it to the surface and attached itself to the nerve. While it IS RARE that this occurs, nonetheless, it does. After learning of the excruciating pain that comes with the rash, I must say that I am pleased that I did not have go though the rash stage, the pain from PHN is plenty.

I have been taking Gabapentin, Amitriptlyne Percocet and Lidocaine topical cream to treat the symptoms of PHN. While it does make the pain bearable, this simply means "I am not in tears all day" otherwise, I would be. The pain of PHN is like having perpetual broken ribs. I am unable to cough, sneeze, even to have a bowel movement is a painful task. I am also told there is nothing that can be done to correct this, only can treat the symptoms.

I was glad to see that someone else besides myself have experienced this as well. Here's hoping they will come up with some something to make daily activities more attainable.

 
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Old 04-11-2013, 09:56 PM   #2
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Re: PHN without the Shingles rash

So sorry it's been so hard for you. If you are able to answer 2 questions I'd appreciate it. Did you ever have a shingles vaccine? Also, have you had canker sores on your lips during your life? I am wondering if people who get canker sores on their mouth are more apt to get shingles. I get those sores alot and am very worried I'll get the worst case of shingles!

 
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Old 04-11-2013, 11:36 PM   #3
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Re: PHN without the Shingles rash

No, I've never had the vaccine and yes, I have had canker sores both in and out of my mouth, but has been quite some time since I've had one on my mouth and has been years since I had inside my mouth.

 
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Old 05-10-2013, 05:22 PM   #4
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Re: PHN without the Shingles rash

Shingles without rash is called "zoster sine herpete". The pain is difficult to treat and you need to work with a good neurologist to make sure you are on the most effective dose of the medications with the least side effects of fatigue and dizziness. You usually have to start at very low doses (ie 100 mg gabapentin) and go up very slowly. The max dose of gabapentin is 1200 mg three times daily if you can tolerate this; nortriptyline has less side effects than amitriptyline and 40 mg is a good dose to work up up to - caution with heart rhythm problems. The percocet can have side effect of headaches. Treatments often fail because the dose is not high enough or the doc went up too fast on the meds and the patient doesn't have time to get used to side effects.

If the meds the neurologist prescribes don't work out or the side effects are too bad - last resort is Pain Specialist. They inject a nerve block (similar to lidocaine) to numb up the nerve. If this works, they inject phenol to essentially "cut" the nerve to prevent it from sending the pain signal to your brain - repeat every 3-4 months and can lower your oral meds.

Lastly - make sure you had an MRI of the thoracic spine with and without contrast focusing on left T8-T10 (area between last rib and belly button where you say your pain is) in case this is something other than shingles. Sometimes it can be a pinched nerve which is more obvious on imaging now than in the past. Or even a cyst rubbing on that nerve to cause constant pain. Good luck!

 
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Old 05-10-2013, 05:26 PM   #5
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Re: PHN without the Shingles rash

Shingles and cold sores are caused by 2 closely related viruses - varicella zoster virus and herpes simplex virus. They both reactivate and cause disease when your immune system is weakened (older, chemotherapy, HIV, stree, etc). HSV-1 comes out more frequently to cause cold sores. VZV should only come out once to cause shingles or other neurological disease.

The zoster vaccine is only effect half the time for preventing shingles in a 3 year period after the shot. They don't know how well it protects after the 3 years but it is still recommended by the Centers for Disease Control if you are healthy.

 
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Old 05-10-2013, 06:34 PM   #6
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Re: PHN without the Shingles rash

Quote:
Originally Posted by AllaboutVZV View Post
Shingles without rash is called "zoster sine herpete". The pain is difficult to treat and you need to work with a good neurologist to make sure you are on the most effective dose of the medications with the least side effects of fatigue and dizziness. You usually have to start at very low doses (ie 100 mg gabapentin) and go up very slowly. The max dose of gabapentin is 1200 mg three times daily if you can tolerate this; nortriptyline has less side effects than amitriptyline and 40 mg is a good dose to work up up to - caution with heart rhythm problems. The percocet can have side effect of headaches. Treatments often fail because the dose is not high enough or the doc went up too fast on the meds and the patient doesn't have time to get used to side effects.

If the meds the neurologist prescribes don't work out or the side effects are too bad - last resort is Pain Specialist. They inject a nerve block (similar to lidocaine) to numb up the nerve. If this works, they inject phenol to essentially "cut" the nerve to prevent it from sending the pain signal to your brain - repeat every 3-4 months and can lower your oral meds.

Lastly - make sure you had an MRI of the thoracic spine with and without contrast focusing on left T8-T10 (area between last rib and belly button where you say your pain is) in case this is something other than shingles. Sometimes it can be a pinched nerve which is more obvious on imaging now than in the past. Or even a cyst rubbing on that nerve to cause constant pain. Good luck!
The Neurologist I was seen by told me that there were NO NERVES going to the area where I was experiencing the pain, it was my entire rib cage, even in between the ribs themselves. I could not believe it.

The Pain Specialist that I now have has been able to get me a 'Spinal Cord Stimulation Trial' (SCST) I am so looking forward to this. Actually this will be my second attempt, the first procedure didn't get a chance to work because, I accidentally pulled the 'wire' down from my 6th vertebrae to the 10th, within less than 24 hours. There was excess cord from the insertion area and as I was coming out the door, the loop caught hold of the door handle and yanked it down from the 'target area'. I was devastated that I had done that and being it is an expensive procedure, my doctors had to plead with the insurance company to allow another trial. Thank God the doctors were successful, I go in for the procedure on Monday.

The trial is a 7-day period to determine whether or not the stimulation will help control the pain so I can at least have somewhat of a normal day. After the trial period if the doctor and myself agree that the stimulation is going to work for me they then implant the device permanently. I will have a device about the size of pager attached to me for the duration, it is like a 'remote control'. I pretty much control the pain. I am certainly anxious to see if the trial works and how it will be to have a device attached to my body. It is removable of course, like a phone jack connection, plug it in to activate the treatment, unplug when you are done. Sounds simply enough, lets hope it is.

I will be able to give more info this time next week.

 
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Old 05-11-2013, 01:29 AM   #7
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Re: PHN without the Shingles rash

I do hope you have had an MRI of spine to make sure there is nothing at the nerve roots causing this that might be more treatable. I'd be curious to know how the Dr. diagnosed your PHN other than just "blood tests", if you have that information.

 
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Old 05-11-2013, 08:31 AM   #8
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Re: PHN without the Shingles rash

Yes I received a MRI, 2 in fact, they were by 2 different doctors, 2 years apart too. The first was with contrast and and revealed no signs of anything. As a matter of fact, this was when they began doing every test known to man on each of my internal organs and zip, nada, nothing came up, after all the tests completed they began telling me it was "Atypical", meaning 'a unknown cause' so they began telling me it was all in my head and I only wanted the narcotics. I was beside myself, between the constant pain, being told I was (pretty much) making this up and trying to care for my 80 year-old Mother, it was quite difficult.

I have every test/results that I have had done to me on my thumb drive. I have this thumb drive with me at all times. I also signed for the doctor to receive copies of them from my previous doctors. So, yes, the results are accurate.

 
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Old 07-26-2013, 10:03 PM   #9
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Re: PHN without the Shingles rash

Hi there, I was reading your question and wanted to let you know that I am currently suffering from my second case of shingles that I am aware of. I never had the shot and I have never had canker sores before, however I used to get nerve pain really bad and thought it was just my sciatica and I also have had a lot of pain under my left rib cage which I associated with an ulcer... I broke out last September with the rash and that's when I discovered that it was shingles. In the last few days it has come back, no rash but lots of nerve pain, flu symptoms, stomach pain, headaches and I am sooooo tired. The dr. has me on an anti viral medication which im suppose to take at the first signs of it. I am in my 30's and had been going through some extreme emotional stress, my doctor told me this is the reason that I had my first major outbreak.

 
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Old 03-12-2014, 02:22 AM   #10
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Re: PHN without the Shingles rash

Hello I want to know what doctor are u seeing .. i am a 31 yr old female in tucson and I had shingles twice in 2013 .. Both times being hospitalized as I was 7 months pregnant in the 1st bout .. i am suffering so much .. it is unbearable I get head aches with burning ! Pain in my breast where I got it .. and all thru my back .. The worst thing is I already have slipped disks so at times I confused the pain .. i can't take it anymore ! And even well in the hospital they accused me of just wanting pain meds .. even though I had shingles a second time in 5 months my kidneys and liver where failing and swollen and they still said I was there for pain meds very upsetting I have no history of drug use and further more I left my new born baby and was very depressed and had to stop breast feeding beCuz of this .. it was quit depressing .. Please help give me some advise so I can find some relief the pain is unrelenting I vomit from the pain .. Please help !

 
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