- CASE FILE
Recurrent (herpes?) virus causing electric sensations, dizziness, headaches, blood pressure surges. Doctors say “impossible”! Need help.
ABOUT THIS CASE FILE
I had many years of an AI autoimmune illness but on valentines day of 2013 or 2014 I first got what I realized after a few days seemed a lot like shingles and then later thought maybe herpes simplex type 1, but still don’t know for sure. Things have been hell since, especially when virus recurs. Yet docs say “impossible”.
Started with stabbing pains on left chest and I thought uh oh maybe my breast and I need to see a GYN. Right after that, under left arm, there was a burning irritation type pain and I thought maybe the deodorant was irritating my underarm. Then right after that a few blisters on my left chest erupted , 2 of which were particularly angry and oozing. I thought, what a great time to get infected pimples and I carefully put some raw honey on them and a bandaid, which only made it worse. Then middle of night would awaken with stabbing pains there and thought shingles! This sounds like shingles, not infected pimples, breast problem, and underarm irritation! Also then same week got a couple of bumps of same sort on my left forehead and that was accompynied by dizziness, pain on bridge of nose, headaches.
The symptoms progressed:
Things got worse and worse, the headaches would last 3 days, the dizziness was there all day and I had imbalance, and during the night I started getting electric sensations in my head and chest that woke me up from sleep many times per night. Felt like someone attached electrodes to my chest and head and turned on the current. AT first I’d recover form those, but as I got more and more of them, my heart just continued to be beserk from them and started getting symptoms of dysautonomia where I’d get up and heart rate would soar, even up to 145. And head would feel awful from the repeated electric explosions there. I also think this virus lead to a drop in my resting heart rate (from 85 to 62) and body temperature (from 98.8 basal to 97.0 basal) but can’t prove that. Now sleep deprivation added to mix ans months of only 3 hours of uninterrupted sleep and the pure torture of being woken up repeatedly. It then would finally go away, but then there would be a recurrence and it would all start all over again. Then go away, and then recurrence and all start all over. Rinse and repeat, each time same pattern with the eruption in two places (but smaller now) and symptoms that acomponyied it. Was triggered by things that trigger herpes viruses: too cold, too hot, stress (even good stress), other infections.
The reason I say life threatening is besides the agony of it, all of this seemed to have put my sympathetic nervous system in overdrive – or perhaps the virus did damage to cranial nerves – and I go into hypertensive crisis. Not infrequently now 220/110 when doing stuff and baseline now at 170/90. So I think I will get a stroke and already have some symptoms that make me think it has lead to a brain anureysm. Antivirals helped but so hurt my digestion, I finally had to stop them. It was like a sophies choice since the meds were destroying my esophagus and I wouldln’t be able to retain my ability to eat if I stayed on them. Now each time I get a recurrence, the familiar symptoms flare up and always on both chest and head in same spots and always same things- the pains on bridge of nose, the dizziness, imbalance, the electric sensations in head and chest, and everything that follows.
What the docs say:
Docs say “impossible” because I don’t have Ramsey Hunt syndrome (no drooping) and I am not covered in spots. They acknowledge I likely had either shingles or HSV1, but we don’t know which. (I did try to get PCR test done on the lesions but at first didn’t know it would be be important and later, the damn things wouldn’t ooze for long enough to get tested. Now they just sort of come up but then get reabsorbed quickly before opening up.) I”ve been to three infectious disease docs and they all say impossible to have recurrent shingles, impossible to have it two places, impossible your lesions “effervesce”, impossible your electric sensations and dizziness are from this, impossible you still have it. . Some were wiling to give more antivirals anyway (Valtrex and acyclovir) “just in case” but when I couldn’t tolerate them, they were unwilling to work with me to find another solution to the viral recurrences.
I respectfully disagree:
Everything I read in the research literature suggests otherwise. Herpes (either zoster or hsv) can cause heart disease and increases all cause mortality, it can get in the central nervous system, shingles can recur, HSV1 can occur in places other than mouth and genitals, hav1 or zoster (shingles) can get in the cranial nerves. Cranial nerves can cause strange autonomic symptoms. Its’ always the same pattern with recurrence- prodrome of tingling on chest, followed by eruption there and underarm burning, followed 2 days later by the forehead spot or now just tingling followed by bridge of nose pain and the dizziness and the electric sensations and headaches. Symptoms start getting worse at 4pm then by 9 am they are a little better until 4 pm again.
How did I get this:
The cluster on my chest is right where a doc put a stethoscope…I would not be supriised if I got this from those repeated visits I had to a hematologist for anemia for unrelated issues (loads of bleeding from a fibroid). Not sure why she had me keep on coming back- was absurd – and the office is filled with oncology patients. I know youre not supposed to get herpes from physical objects since doesn’t live outside body for long, but there are researchers and hints in the literature that suggest otherwise.
Zoster vs hsv1:
Only thing I know for sure is its not hsv2 because blood test shows never been exposed. Has some features in common with each of zoster (right positions for zoster, and all on same side, and plenty of nerve pain), and some with hsv1 (recurrent, more of a cluster than a line). If it is hsv1, I’m a bit confused because I have had typical “cold sores” since early childhood and I thought that gives immunity towards more new from hell strains of hsv1. Incidentally, when this started also had strong knee pain that woke me up- do not know how that fits. I have my results on IgG sublasses (immune system) if anyone would like to see that. Have enclosed a pic of initial eruption.
Am I missing something?
Is there some other virus that’s doing this – another nerve virus I’m unaware of? What can I do if I can’t take the antivirals? Is it too late since now I have damage in critical nerves that control the autonomic nervous system? Happy to hear other perspectives since I’m stuck and desperate. Thanks to anyone out there…I just had a recurrence starting 3 days ago after nearly 2 months w/o just when I felt I was making a bit of headway on my health (which is very poor – recall lthe AI condition too).