Postherpetic Ophthalmic Neuralgia (PHON)

My life when i was 33yrs old, was turned upside down in 2011, due to Shingles, that extended from the top of my head, down the right side of my forehead, eyebrow, eye and right side of my nose. Almost 11 years later and the struggle to adapt with life goes on. "HZO" Herpes Zoster Ophthalmicus, shingles that affects all of the above area's i mentioned above.

Adapt is the key word, when all so called remedies and pain killers, legal and some not so legal, fail to resolve underlying pain and allow myself to still function (like going to work, keeping a relationship intact, maintaining close relationships with family and friends, being able to pursue goals without being inhibited by a mysterious "PHN" side effect of an illness like shingles.

I'd be lying to myself and others if i said the pain is non-existant and goes away, it subsides, but the tingling and burning and desire to rub and itch my head, forehead, eyebrow and eye is unbearable at times. And extremely hard to put into words, without sounding completely insane at times or all the time for that matter.

Anti- Depressants, Anti- Seizure Medications are worthless for moderate or extreme PHN Pain relief and curing the underlying conditions. Drugs like morphine provide pain relief but life is seriously limited when taking opioids or morphine, serious side effects in the short or longterm are evident when using these treatments for long durations. I would highly advise against this route. Besides it just masks the pain and does nothing to diminish what is causing the pain, so you become a voluntary or involuntary drug addict.

These options are highly suggested and prescribed through physicians, of course they love prescribing medications that barely treat an illness, keeping you coming back for more, most likely for the rest of your life. They usually do not care about the side effects and base treatments on what works for less than 25% of the cases of PHN. If these options work for you, then in my opinion you do not have a severe case of PHN. A mild case which i can tolerate and have been tolerating for over a decade now. Level 2 pain or below in my world, is probably Level 5 or worse in most humans, who exaggerate about pain levels, not being used to any chronic serious pain in their lives before PHN..

I've tried alot of the recommended on and off the first 3yrs "so called pain killers", that did not help one bit, in fact affected my mood and pain more so. I'd rather feel pain and recognize myself, than be a zombie with no ability to function at all in society or be propelled to enjoy things i've always enjoyed doing..

Your dealing with an intelligent and caring doctor, when he or she admits they do not know what to provide as a solution. I wasted 2yrs trying everything they prescribed. THC is the best treatment for pain relief without serious side effects like dizziness, nausea, etc, etc, but it has to be certain strains to provide neuropathic pain relief. Otherwise its worthless and will affect your mood or even make you paranoid or have anxiety attacks, CBD on its own solutions are terrible and a waste of time and money. no effective pain relief after trying this route a few times over the course of 2yrs.

Pretending not to feel the pain is the common struggle i've felt and got input from others who suffer from the same thing. PHON i like to call it (Post Herpetic Ophthalmic Neuralgia), far different to treat and far different in pain lasting for yrs if not forever after having shingles.

Pain Management is simply in my mind, a way of pretending not to feel pain, especially if your going the route of therapy without any pain killer prescription drug medications. It works wonders for people who have no imagination before suffering from a chronic pain condition. But it helps none the less, no matter how much it might sound like a cliche "Be Positive" while living with extreme pain.

Homeopathic formula's in different combinations for 2yrs on and off, to no avail.

Creams and Ointments(Nsaid's, or steroid) are hard to use in the region around the eye, eyebrow and forehead, without extreme irritation and horrible results, tried all different types of medicine. Herbal varieties, even tried acupuncture for over a year with slim to very little pain relief. Years of research, experimentation, listened to all types of recommendations, western and eastern based herbal supplements, etc, etc No relief and worse pain from trying methods that supposedly work for others with PHN, Proceed with caution when listening to people whom you don't know or people who said they have had PHN, which they confuse with shingles. They don't understand the difference between the 2, due to poor education on certain conditions.

THC, brewed as tea form and or smoked, is the best option to qwell extreme pain and discomfort for me personally and had more benefits then negatives when compared to GABA and similar prescribed medicines by doctors and so called professionals, who have never and hopefully will never have PHN in their lifetimes, they have no idea what it feels like, the experience of it. Sure they treat a lot of people with all types of PHN but nothing they prescribe works for most if not everyone i've met and talked with who suffer from PHN.

Gallixa "Gallium Maltolate" Cream is decent at relieving pain quickly while at home, when applied to my head, forehead and eyebrow, but make sure with any cream or ointment not to let it drip around your eyelids(skin is extremely thin and anything penetrates through this area quickly, extreme extreme pain for days when this happens. Aspercreme works wonders for people suffering from PHN and can be bought over the counter. But does not work well through bouts of extreme pain for longer than 30-60 minutes after applying in my case. So Gallixa Cream is the best and only solution i've found that works for 3-4hrs after 1st application. It takes away severe stinging, burning and electric like shocks or stabs around my affected area's, its non-expensive and far superior to anything i've tried, its not a cure, but has no side effects and works wonders for me.

Anything can trigger the pain, emotional outbursts, bad diet, lack of sleep, irritation to certain scents, laundry detergents, excitement ("good or bad"), which is trivial at times when your suddenly enjoying yourself and then you can't seem to be able to function like you are used to doing.

There are good times and bad times, that come and go with changing of the seasons. But when the pain becomes intolerable i distance myself from everyone and everything, this pain is not something anyone close to you can understand. You almost surely will get the impression that most people if not everyone, thinks its in your head and your just making an excuse not to be responsible.

This is a condition when tried to be put into words, "Words Diminish the Actual Feeling Experienced"

If anyone out there struggling to cope with life, suffering from, Post Herpetic Ophthalmic Neuralgia wants to just talk or ask any questions, feel free to respond.

Regards,

MVM

1 like, 4 replies