Post herpetic neuralgia (PHN)

[heapsreal]

Im guesstamating here but had shingles a month or maybe a bit longer. Shingles were on the left side of my head. I have had headaches off and on since and increased fatigue.

The other thing i have had consistently is a slightly depressed feeling but more a feeling anger and even little things piss me off which is very unlike me, i think i understand PMS abit better now. Its sort of an uncomfortable feeling in my head, i wouldnt call it a pain, not sure what i would call it. Its not the typical brain fog either. I am wondering if its a low grade type of a pain because when i take pain killers for this, the anger and irritability go and not the drugged out thing doing it as i dont really feel drugged on it. Also sleep meds help with this head thing whatever it is. But i wake up with a headache and wait as long as i can before taking some panadeine.

So i wonder if anyone else has had something like this and what else they have tried? Im basically taking everything i can going by the book on PHN.

The other thing i noticed is for over a week i have had a rash on both shins that blistered some etc and started to dry up. I just thought it was an insect bite or something until my wife said if i was sure it wasnt shingles. After having another look at it, it has a more consistent shape to it like it may be following some nerves in my shins?? I did use some cortisone cream on it which helped some but rash came back. No pain with it but has been itchy but not unbearable. I was on antivirals this time when the leg stuff happened. I did do a little treatment trial, as i had some acyclovir cream used for coldsores and it seems to have reduced the rash. I will say since having this rash i have felt crappier again. I am on leave from work but if i was working im not sure how i would hold up at the moment.

Since the start of cfs, i have had a brain fog which seemed stronger over the left hand side of my head in the area of the recent shingles. The first few years i had bad pains that stopped me sleeping that i would get in my lower legs that i would say was like shin splints and around the area where i think these current rash/shingles are.

I have had some blood work in the past showing cmv titres slightly elevated and enough to say it was reactivating but now im starting to wonder if VZV the chickenpox/shingles viruses is whats causing all my problems and cmv reactivating is just happening because VZV has crashed my immune system. My cfs started with several infections close together but it was chickenpox which broke the camels back.

Im also wondering if i responded better to famvir than some others with cmv because really the famvir was treating VZV and probably cmv to some extent.

I dont really know?? im just guess and venting and sick of feeling like this.

VZV isnt mentioned much in cfs/me but it does sit in the dorsal ganglion root where they have found scarring in autopsies of ME people, Sophia Merzer being one of them.

cheers

 

[Crux]

It looks like there're many types of PHN symptoms.

My outbreaks are on my lower back and bum. At my worst, they were on the trunk near the liver area on down. ( most painful)

The pain was sharp and shooting, combined with numbness, from the liver down the right leg. The outbreak areas on my lower back and bum did not have numbness and tingling, just stinging pain.

I've never had outbreaks on the head, but I've read it can be very painful, and potentially dangerous if it gets into the eyes. ( blindness)

I haven't correlated the moods with the PHN, but it makes sense. It seemed there was a perpetual ill feeling, but I was having non-stop outbreaks and PHN for some years.

Since nothing I tried really inhibited the virus, ( didn't try antiviral drugs, just herbs and supps.),though I did begin to notice that there was a pattern of triggers.

Now I deal with the triggers to lessen outbreaks. I think some sort of metabolic acidosis is the biggest trigger. Whether it be lactic acidosis, or even taking too many acidic substances. ( the salicylates in aspirin are known to cause metabolic acidosis)

Also, bacteria produce lactic acid, which can be a good energy source for healthy people, but too much can overwhelm, if someone is immunocompromised.

My triggers are : acidic substances like HCL, vinegars, chlorides, etc. ( larger quantities) Other triggers are: fermented foods and drinks, (especially dairy), probiotics, anything with lactic acid producing bacteria.

--The intake of any of these substances,in a serving sized dose, will cause a shingles outbreak in less than 24 hrs.

Foods high in starch can also cause outbreaks. I've been eating a lower carb diet to lower lactic acid producing bacteria in the gut.

I don't understand the full relationship between bacteria and viruses, but the increase in bacteria seems to increase the virus, in my case.

Maybe this can help you?

 

[minkeygirl]

Didn't you say you had just had some labs that showed VZV was ok?

If @Crux is right it seems like we can add bacteria to the list of crap. But don't you take ABX for your chronic sinus infection?

And with all the Av's you were on the damn shingles still got worse. That's what I don't understand.

 

[Crux]

@minkeygirl ;

That's the thing, I don't believe that abx always take out all the bacteria, even beneficials. Plus, there's so much bacteria on all our foods. This would include beneficial bacteria.

I thought of some more triggers,btw. heapsreal, I recall that you are low carb, but do you ever use sweetners like sorbitol, xylitol, etc.? They can feed gut bacteria, and possibly cause overgrowth, which would in turn produce alot of acids, resulting in nerve irritation with shingles.

I've been trying short,pulse, low doses of abx, that have helped reduce the gut bacteria. ( even beneficials) This has helped, but I've noticed the abx can irritate the nerves too.

Caught between 2 rocks.

 

[heapsreal]

Didn't you say you had just had some labs that showed VZV was ok?

If @Crux is right it seems like we can add bacteria to the list of crap. But don't you take ABX for your chronic sinus infection?

And with all the Av's you were on the damn shingles still got worse. That's what I don't understand.

I had labs for vzv 6 months earlier as i was thinking of getting vaccinated for it. Labs came back saying good immunity to vzv, now i can guess i probably had high titres and my dr said maybe sub clinical case of vzv and because my innate immune system is crap, the shingles occurs as the antibodies on their own may not be enough but also require nk cells too?

I recently read that av's for shingles doesnt prevent an outbreak but reduces severity which helps reduce the time one is ill etc there was a percentage of improvement in people who took av's that didnt get PHN, but people can still get it even though they were on av's etc?

@Crux , yes im on abx currently.Mostly low carb and do use artificial sweetners but have been having a few carb mung outs of late, dont know what thats about really. I use probiotics regularly.

I have probably had these PHN type symptoms ever since i had chickenpox, just didnt originate from shingles? Getting the shingles has sort of flared everything up. I always thought there was pain from the shingles rash but i have had very little especially on the head. I had pain deeper under the rash that felt like it was in my head( i didnt realize i had a rash and shingles until i had my hair cut, just thought it was a weird headache on the left hand side) and a generalized headache, then the increased lethargy etc the rashes on my legs are just itchy around it as well as general malaise.

i dont know