Constant nausea for 3 years since Meningitis

[Binguniverse]

My dad affected virus Meningitis 3 years ago and left damage on his frontal lobe. Since then, constant nausea seized him, particularly in the morning after getting up. Sometimes, only small amount of water, without any color, come out of his mouth and sometimes nothing. It affected his eating obviously but doctors only suggest taking food less proportion and more frequency. It seems doctors cannot give solution on nausea.

[SqueakMouse]

Hello there Bing, it's SqueakMouse here😍 (may I call you Bing😋? I actually feel like I know you already😁!--ironically, my last name has "Bing" in it too😉). I'm so so sorry to hear that your Dad has been suffering so much for so long, above and beyond his bout with viral meningitis😢.

And I'm so sorry that you are suffering too, because it sounds like you care for him very very much, and it's always painful to watch someone we love go through such a difficult time, especially when their struggle is severe, long-lasting, and lacking adequate treatment, understanding, or improvement; indeed, I have no doubt that it often feels as though your suffering is a match to his, for when it comes to those we love, their pain is our pain, and vice-versa😢

I'm not a medical professional of any kind, so as dearly as I wish I could, I cannot say that I know the exact cause of the issues your Dad has been suffering from☹️. However, my personal medical history includes numerous bouts of viral and aseptic meningitis over the course of several years, and those experiences (as well as the long and difficult search for the cause of my recurring infections, and the pursuit of anything and everything that could eradicate them, or at least reduce their frequency and/or the severity of my symptoms) have given me a crash course on the subject, which enables me to identify the most likely causes of your Dad's symptoms, and a few of the treatments that have the greatest potential to either facilitate a full recovery, or at least reduce the number and severity of his symptoms😍

There were five unique characteristics about your Dad's experience that you mentioned in your post: (1) The initial meningitis infection was caused by a virus; (2) The infection resulted in frontal lobe damage; (3) It also seems to have left him struggling with severe nausea; (4) That nausea is of long duration, specifically three years in length; and (5) The nausea is usually at its worst in the morning, and often produces bile, small amounts of water/fluid, and/or nothing at all but dry heaves.

In my experience, those five characteristics taken together usually point to a handful of very specific causes, and rule out several more (and they also render a few other possibilities moderately to extremely unlikely). So I'm going to list and describe them to the best of my ability, and hopefully you and your Dad and his physicians will find some answers amongst them--and ideally, some relief from his suffering too😋

I'm sure that you're probably very familiar with the definition of meningitis by now, as well as the various possible causes and the most common symptoms. Similarly, I imagine you're equally familiar with the function and abilities of the frontal lobes, and the symptoms that are most likely to occur when they are damaged by injury or infection.

But in order for my suggestions in regards to the possible causes of his current symptoms to make any sense, I figured I should include a brief summary of the above; please forgive me if any of it is boring or repetitive😳😋.

Meningitis is inflammation of the three layers of tissue that cover the brain and spinal cord (meninges), and of the fluid-filled space between the meninges (subarachnoid space) . It has many causes, but the most common are infection by viruses, bacteria, fungus, or parasites; all of them cause swelling in the central nervous system (made up of the brain, spinal cord, and nerves), which can not only affect every part of your body, but have the potential to cause long-Terri effects.

The most common of these (which can occur in the acute or initial stage of infection, as well as in the weeks, months, or even years afterwards) include fever, stiff neck, severe headache, nausea and vomiting, and confusion or sleepiness. Less frequent (but still common) effects include cognitive deficits and difficulties (memory loss, trouble concentrating, short term memory problems, difficulty retaining information/comprehending a story or conversation/applying the correct name and/or labels to a person, place, or thing); neurological issues (headaches, nausea and vomiting, confusion, excessive sleepiness, tremors, seizures, neuritis, neuropathy, pins and needles, numbness, temporary paralysis, weakness, dizziness, loss of balance/coordination/proprioception, which is the ability to sense where the body and its limbs are in space); inner ear damage (total or reduced hearing loss, tinnitus/ringing or buzzing in the ears, vertigo); speech problems (trouble finding words, enunciating clearly, chewing or swallowing problems); and vision issues (tunnel/blurred/double vision, blind spots, drooping eyelids, photophobia).

You mentioned that your Dad suffered frontal lobe damage, and that his primary complaint post-infection is severe nausea. Frontal lobe damage--regardless of the cause, whether it be infectious, accidental, neoplastic, or auto-immune--is not likely to cause nausea; while it's not impossible (headaches or brain issues of any kind have the potential to cause nausea or vomiting), the more likely effects of frontal lobe damage include changes in memory or intelligence level; impaired judgement; changes in one's values or "moral code"; atypical behavior or loss of inhibition, such as inappropriate or out-of-context laughter, anger, sadness, crying, or comprehension of social cues; and/or clumsy, spastic, or weakened motor skills/spatial awareness.

Therefore, your Dad's residual frontal lobe damage is not the most likely cause of his severe nausea. However, meningitis of every kind can very often cause nausea and vomiting, both during the initial infection and in the weeks, months, or--more rarely--years afterward. This is commonly the result of the "toxicity" of the infection itself, which basically means you feel really really ill while that infection is active in your system; the headache (and the severity of the pain it engenders), fever, and inflammation that accompanies most meningitis infections are more than sufficient to trigger disabling and unrelenting nausea, so if the inflammation of the meninges and the swelling of the central nervous system persist beyond the average 10-14 days of acute infection (as it often does, for many many weeks or months afterwards), the nausea and vomiting will likely rise and fall in response to fluctuations in that swelling, and cannot dissipate or disappear unless or until that inflammation is gone for good😳

Beyond that inflammation, there are several other side effects of a meningitis infection that have the potential to cause nausea and vomiting, and some of those effects can become permanent damage, the nausea cannot disappear unless those effects have been addressed.

One of the most common of these is a problem with the cerebellum, which governs coordination of voluntary movement, balance and equilibrium, proprioception, and muscle tone. Therefore, when or if meningitis causes inflammation in that area, it can make a person feel like they are on a wildly tossing ship, even if they are sitting or standing on a perfectly flat surface; indeed, the disorientation and dizziness brought about by this sensation can trigger symptoms akin to sea sickness, due to the sense of instability and constant motion (and the consequent lack of coordination, grounding, and spatial awareness).

A primary care doctor or most especially a neurologist can usually determine whether or not your Dad is likely to be suffering from residual swelling in his cerebellum. If that is indeed the case, treatment mostly focuses on reducing the inflammation and managing symptoms until that occurs, which commonly includes anti-inflammatories like steroids or NSAIDS; anti-emetics like Compazine, Phenergan, Reglan, or Zofran; motion sickness preventers like Dramamine, Antivert, or a scopolamine patch/Transderm-Scop; and/or benzodiazepines such as Klonopin, Valium, or Ativan.

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Meningitis can also cause damage to the inner ear, which can result in symptoms very similar to those caused by inflammation in the cerebellum. This is because our vestibular sense (the sensory system that provides the leading contribution to the sense of balance and spatial orientation, in order to coordinate movement with balance). Therefore, the patient can experience the same sort of dizziness, vertigo, disorientation, feeling of being in constant motion, and yes, nausea and vomiting as that caused by cerebellar inflammation

our inner ear and can cause issues with balance and the feeling of vertigo.

An audiologist could check out the inner ears and determine whether there's an issue there, and if that's indeed the case, they often prescribe the same sorts of medications listed above (anti-inflammatories and steroids to reduce swelling; anti-emetics to control nausea, benzodiazepines, and drugs like Antivert, a scopolamine patch, and Dramamine to manage dizziness.

With medications on board to address the inflammation that's causing the dizziness, nausea, and vomiting--as well as some that can manage these unpleasant symptoms until the swelling that's causing them dissipates, the patient is better equipped to tolerate the next (but equally important) key to relief and recovery: A referral to a physical therapist. Through a variety of simple tests that they can perform, they are able to determine if the vestibular sense is disrupted (in fact, some physical therapists are trained to specialize in disorders of the inner ear, and in the evaluation and treatment of any vestibular problems that might exist). Based upon those results, they can often prescribe exercises that may help restore balance to the inner ear and alleviate the dizziness, thereby reducing or even eliminating the nausea.

The results of this treatment can be utterly miraculous.😍 For instance, a friend of our family suffered from such debilitating dizziness and nausea that he could barely stand upright, much less work or drive; much to his frustration and discouragement, he suffered in this state for nearly three long years, without an accurate diagnosis, effective treatment, or adequate symptom management , despite countless hospitalizations and visits to all manner of medical professionals😢

Fortunately, the day came when the fairies of the Universe delivered him to the doorstep of one of those highly trained physical therapists I mentioned above, who happened to be specially trained in the evaluation and treatment of vestibular disorders, and was uniquely gifted in this work--for not only did she accurately diagnose our friend's vestibular issues, but she also reduced his dizziness and nausea to half of what it had been for three whole years in the space of one session, and only needed one addition session to eliminate the symptoms completely😁

And I can add my own personal testimony to the list as well😍; when I was referred to a vestibular therapist after a particularly severe bout of VZV meningitis left me with nearly destroyed equilibrium and constant uncontrollable nausea, I too experienced a nearly immediate improvement in my symptoms, and a return to normal a few sessions later😉

Therefore, I highly recommend that anyone suffering with dizziness, disorientation, and nausea after a brain injury or infection to seek an appointment with a physical therapist (and ideally, one that is specially trained in vestibular disorders); it certainly can't hurt, but more importantly, it has the potential to make a significant and positive improvement in the severity and/or duration of these disabling and distressing symptoms--especially dizziness, and the nausea that it often triggers😉

I would also suggest a vision evaluation, as vision impairments are common following a brain injury/infection, and could also be a cause of the nausea your Dad is experiencing. A neurodevelopmental optometrist would be of the greatest help in this pursuit. They can identify any visual issues, and prescribe medications, contacts/glasses, and/or ocular exercises that can address the cause of any dysfunction (such as double vision, partial blindness, etc.), provide some assistive devices that can balance or reduce these causes until the underlying inflammation recedes, and dispense medications that help manage the nausea (and any dizziness or vertigo that have developed as a result of the vision impairments, which were themselves triggered by the central nervous system inflammation brought on by meningitis).

The reason why it's important to screen for any eye problems (when you have a history of meningitis, and chronic nausea or vomiting in the weeks, months, or years afterwards) is because dizziness--and very possibly any nausea that it triggers--may indicate that your eyes are not understanding where your body is in space, especially when you get up from lying in bed, sitting on a chair or the floor or in a car, or from reclining on a couch.

(NOTE: As you might remember, cerebellar inflammation and inner ear damage can cause this too, in the absence of vision problems; that's because the cerebellum controls balance and coordination, as does the vestibular system of the inner ear, so when either or both of these are stressed or damaged by chronic inflammation, subacute infection, or waxing and waning edema, that crucial sense of stability and groundedness is disturbed or destroyed--both of which can and often does trigger severe and chronic nausea).

There are several other diagnostic tests that I haven't mentioned yet, which can be done to help determine whether your vision or the cerebellum or your inner ear is damaged and is thereby a potential contributor to the nausea and vomiting. These tests are known as "VNG" (video nystamogram) and "ENG" (electro nystagmogram) and they can determine your eye movements when you are re-positioning (specifically and most important diagnostically, to stand up after lying down for a while). Usually there are exercises (for the eyes, the inner ear, the vestibular system, and the brain--particularly the cerebellum and the frontal lobes), that may help with this issue.

Be aware that all the aforementioned potential causes of chronic nausea post-meningitis might be "invisible" to the patient, his or her family and friends, and even their doctors; in other words, their sole complaint might simply be the nausea, with no knowledge or experience of vision problems, vestibular issues, or damage in the cerebellum--even though one or all of these might indeed exist, and could also be the root cause of the nausea and vomiting.

Therefore, making an appointment with each of these specialists (primary care physician or neurologist; physical therapist/vestibular disorders specialist; audiologist or ENT/Ear, Nose, and Throat doctor; opthomologist) might well be worth your while; at worst they could find nothing wrong in their area of expertise--and therefore have no answers as to what exactly is triggering the nausea, or any treatments that could fix a probable contributor to that symptom--but at best, there's the possibility that one of these specialists discovers and treats one of these common effects of a meningitis infection, which will not only lessen the severity of the resulting nausea, but ultimately eliminate it once and for all😉

I would also recommend that your Dad see a gastroenterology specialist, given that nausea is his primary complaint; though it doesn't seem likely that his current symptoms are unrelated to his bout of viral meningitis (since you implied that his nausea didn't exist before he got meningitis, but began with and has persisted since the onset of that infection), especially since there are so so many things associated with meningitis that can cause chronic severe nausea.

Nevertheless, the possibility always exists that his nausea and vomiting is a condition or symptom that is independent of his viral meningitis, and the seeming connection between them as a result of the timing of both the meningitis and the nausea is merely a coincidence--in which case, it would be worth it to temporarily put the meningitis aside, and pursue the nausea as a totally unique and independent issue. In addition, a gastroenterology practice would be an excellent resource regarding which medications or interventions would be the most effective and efficient, and how your Dad can best manage his nausea until he's able to get an accurate diagnosis...or best of all, to effect a total cure😍😉

Before I wrap this up, there are a few more details that might be of interest or help to you😍 You mentioned that your Dad's nausea is often especially bad in the morning, when he first gets out of bed; this pattern is typical for a neurological condition called POTS (Postural Orthostatic Tachycardia Syndrome), which is a form of dysautonomia (damage to and dysfunction of the autonomic nervous system, which controls heart rate, blood pressure, digestion, sweating, etc.).

Symptoms appear upon standing (especially from a reclining position, and after being off one's feet for a relatively long time, which is why getting out of bed in the morning is a trigger for the most severe symptoms in POTS patients). They include tachycardia (increased heart rate by at least 30 beats per minute, and over 120 BPM) within ten minutes of standing, in the absence of orthostatic hypotension. The patient might experience nausea and vomiting, feeling dizzy or faint (or not uncommonly, losing consciousness), or sometimes becoming increasingly pale or sweaty.

POTS is often diagnosed by a cardiologist or neurologist, or commonly in an electrophysiology department. The gold standard" diagnostic tool is called a Tilt Table Test (which is just what it sounds like, i.e., being strapped in an upright position on a large table that raises and lowers the patient from a supine to an upright position, while blood pressure, heart rate, oxygenation, and consciousness is monitored); if such testing is not available, POTS can be diagnosed with bedside measurements of heart rate and blood pressure taken while laying down, and once again in the standing up position, at 2, 5 and 10 minute intervals.

Doctors may perform more detailed tests to evaluate the autonomic nervous system in POTS patients, such as Quantitative Sudomotor Axon Reflex Test (QSART, sometimes called Q-Sweat), Thermoregulatory Sweat Test (TST), skin biopsies looking at the small fiber nerves, gastric motility studies and more.

The last possible cause of your Dad's post-meningitis chronic nausea is a unique form of meningitis called "Mollaret's meningitis", which is a recurrent or chronic inflammation of the protective membranes covering the brain and spinal cord, known collectively as the meninges. Mollaret's meningitis is characterized by chronic, recurrent episodes of headache, stiff neck, meningismus, and fever, with attacks that can seem to last (with fluctuating severity of symptoms) for weeks to years, separated by symptom-free periods that are precipitated by a spontaneous remission of symptoms and signs (these symptom-free periods can also last for weeks to years).

Many people have side effects between bouts that vary from chronic daily headaches to after-effects from meningitis such as hearing loss and visual impairment, nerve pain and twitches, nausea and vomiting, stiff neck and fevers, etc. Symptoms may be mild or severe. Some cases may be short, lasting only 3–7 days, while others last for weeks to months.

While herpes simplex and varicella (HSV and VZV, the two most common viral causes of meningitis) can cause rash, Mollaret's patients may or may not have a rash. Herpes simplex viruses (which cause cold sores and ocular herpes, as well as genital herpes) are also the most common cause of Mollaret's meningitis.

Since it is a recurrent and benign (non-cancerous) form of meningitis, Mollaret's is commonly referred to as "aseptic meningitis" In many cases the signs and symptoms of chronic meningitis not only persist for periods longer than 4 weeks, they even progress with continuing deterioration, i. e. headache, neck stiffness and even low grade fever. Impairment of consciousness, epileptic seizures, neurological signs and symptoms may evolve over time.

Recurring Mollaret meningitis attacks will manifest throughout the patient lifespan, so long as the HSV virus is not managed (or the offending allergen is not identified and eliminated). Patients have reported symptoms for as long as 30 years (!😳!) from first episode.

Diet and stress management are key to keeping the HSV virus at bay, for a weakened immune system creates an optimal environment for viruses to multiply unchecked. If it is determined that a patient has a history of and/or a tendency towards contracting Mollaret's meningitis--and testing suggests that either HSV or VZV is triggering the chronic symptoms--suppressive antiviral therapy is recommended.

This is often accomplished by undergoing several weeks of IV acyclovir treatment, followed by a daily prophylactic dose of oral anti-vitals like Valtrex/valycyclovir, which can be accompanied by the antibiotic doxycycline if symptoms persist, as this combination has been proved in recent studies to suppress outbreaks and manage symptoms more quickly and effectively than an antiviral alone. Indeed, patients who have Mollaret's report experiencing fewer attacks when following this regimen.

But if those viruses are ruled out as the cause of Mollaret's, it is of vital importance to consider whether or not a certain food, drink, medication, or environmental irritant (mold, pollen, dust, fabric softener, and on and on, ad infinitum--for virtually anything and everything can be a potential trigger of aseptic meningitis. It could even be a good or medicine that never caused any trouble in the past, but now results in a case of chronic meningitis every time you're exposed to it. The offending ingredient can sometimes be the "active ingredient", such as the caffeine or aspirin in an Excedrin Migraine tablet; however, it is often found in what are called a product's "excipients", which are things like dyes, fillers, sulfates, flavoring, thickeners, food coloring, sweeteners, methods of delivery such as gel caps or coatings, etc.

To begin with, keep a diary of everything you ingest (food, drink, snack, cleanser, cosmetic, shampoo, hair dye, supplement, medication, etc.) for a full week. Right before you swallow it, make a note of any symptoms you're already aware that you're experiencing right then, and write down how severe they are on a scale of 1 to 10. Do the same in the minutes and hours immediately after ingestion of or exposure to any item, including any new symptoms you notice have emerged since before you ate, drank, swallowed, or touched the food/medication/drink/etc., again on a scale of 1 to 10.

When the week is over, go back over your notes and circle the things that either caused or increased your symptoms; these are the things you need to eliminate from your life, at least temporarily until your body sufficiently heals. You might notice patterns right away (say, you get hives and swelling after ingesting aspirin and ibuprofen, which suggests that NSAIDS are a probable trigger/contributor to aseptic meningitis.

If you can't see any obvious similarities, look up the excipients/active ingredients online (you can find this information quickly and easily by typing "excipients in OTC ibuprofen, brand name Advil liquid capsules", or "ingredients in plain M&M's", etc., and note any common ingredients shared amongst items you reacted negatively to/with bad side effects. You'll often find a handful of ingredients/excipients that fall into the category of artificial dyes, sulfates, and emollients (like the Red Dye 40 in Reese's Pieces, the alcohol in NyQuil, the aspartame in Diet Coke, etc.). Circle the ones that are present in several or all of the items you had a reaction to, and see if you can determine what might be the triggering ingredient for you. By identifying and eliminating these offending toxins, you might well be able to eliminate Mollaret's meningitis from your life, too😋--especially if this food or perfume or medication was something you used or are several times a day, every day. Often within days of stopping the constant exposure to a substance that is toxic to your system, the inflammation in your central nervous system starts to recede, and eventually disappears altogether (along with the nausea and vomiting it caused)--with a greatly reduced likelihood of contracting aseptic meningitis and/or experiencing it in its most severe/persistent/chronic form😉🙂

A final bit of information worth considering: If you've ever experienced a spinal tap, it's unfortunately highly likely that you've also experienced a "spinal headache", which is an excruciatingly painful experience brought on by the spinal tap.

The exact pathophysiology of headache after lumbar puncture is unclear; however, it is most probably related to the “hole” in the dura after the needle has been withdrawn, resulting in persistent leak of CSF (cerebrospinal fluid) from the subarachnoid space. This leakage results in a fall in intracranial CSF volume and CSF pressure. The low CSF volume depletes the cushion of fluid supporting the brain and its sensitive meningeal vascular coverings, resulting in gravitational traction on the exquisitely pain‐sensitive intracranial structures; it may also activate some receptors that cause cerebral vasodilatation (engorgement of the brain's blood vessels) and stretching of pain‐sensitive cerebral structures.

The result of all the above is a classic spinal headache, which worsens when the patient is upright and is relieved on lying down. The headache worsens within 15 minutes of resuming the upright position, and disappears or improves within 30 min of resuming the recumbent position. The headache is usually dull or throbbing in nature, and can start in the frontal or occipital region, and can later become generalised. It is possible for the pain to radiate to the neck and shoulder area, and could be associated with neck stiffness. Head movements exacerbate the pain and any movements that increase intracerebral pressure, such as coughing, sneezing, straining or eye compression, may also worsen the symptoms. Other associated symptoms include lower back pain, nausea, vomiting, vertigo and tinnitus and, rarely, double vision due to cranial nerve palsy.

Post-lumbar puncture headaches are often treated via a procedure known as a blood patch, but even without treatment, they are primarily self-limiting and recede within 2-3 weeks.

Of course, your Dad's last spinal tap was probably three years ago, when he first contracted viral meningitis (?)--in which case, that particular cause of severe and protracted nausea triggered by a spinal headache is very likely a non-issue in his case. For that reason, typing up all this detail about post-lumbar puncture headaches might appear to be unnecessary; however, there was one very important reason why I did.

Remember how the persistent leak of CSF from the subarachnoid space (and the fall in intracranial CSF volume and CSF pressure that results) is believed to be the cause of the spinal headache (which is essentially identical to the headache and other symptoms resulting from aseptic meningitis)?

And remember how the headache (and thus any nausea and vomiting that it triggers) worsens when shifting to an upright position, but improves after lying down?

Well since your Dad experiences increased nausea upon getting out of bed in the morning, but seems to be spared the worst of it overnight while sleeping/recumbent...it's possible that these characteristics suggest that he has been experiencing a slow CSF leak, and the decreased intracranial CSF volume and CSF pressure that results can absolutely be the cause of his chronic nausea, especially since it's at its worst when he gets up in the morning, just as it does when a CSF leak occurs after a lumbar puncture.

The cause of these CSF leaks is often unknown, but can be the result of injury, infection, or even a spontaneous leak with no known cause. Many patients with spontaneous CSF leaks have hereditary disorders of connective tissue (eg, Marfan syndrome or Ehlers-Danlos syndrome), but neurologists may overlook this clue.

Spinal fluid leaks can also can lead to serious complications, including seizures; other times, symptoms are mild or chronic enough to go unnoticed or ignored. Either way, CSF leaks can be easily overlooked or misdiagnosed by medical professionals, even if the patient is suffering severe enough and/or chronic enough symptoms to pursue diagnosis or treatment. For this reason, they may have a CSF leak for years or decades before it is diagnosed😳.

Interestingly, nausea and vomiting can be the main symptom of a CSF leak, with no other apparent symptoms (including the most common ones like headache, stiff neck, or back pain)--even if the nausea is constant, extremely severe, and/or of long duration.

If a CSF leak is suspected, diagnosis is most commonly achieved by having a medical history and presentation that is suggestive of such cases, and by undergoing special imaging such as a CT myelogram . But even then, a leak can be easily overlooked; some of them are so small that they are missed by the slice thickness of the CT myelogram. Although CSF leaks may not be readily apparent on imaging, a suspected CSF leak is important to consider because it is fixable (but surgery is often the only way to accomplish that).

So if your Dad gets any of the aforementioned work ups (i.e., for vision impairments, vestibular issues, brain inflammation, etc.), and they either fail to uncover an obvious cause of the nausea or persist despite treatment, it might be worthwhile to see a neurologist or neurosurgeon to investigate the possibility of a CSF leak. While they are definitely more rare than the other possible causes of the chronic nausea that has lingered since his bout of viral meningitis, a leak still checks several of the boxes that you mentioned (nausea lasting months, years, or even decades; other symptoms that typically accompany brain or central nervous system problems are not immediately obvious, to the point that nausea might be the only apparent symptom; symptoms are often worse upon standing upright/getting out of bed, and improve slightly to completely after resuming a reclining or supine position), so I thought it was important to include it--that way you'll have multiple options to explore if some of the suggestions don't pan out😋

I sure hope that at least some of what I've written will be helpful to you and your Dad, or ideally a little bit comforting too😍 Please feel free to ask questions if I've left something out or haven't described things clearly enough😉 Meanwhile, best wishes to you both--you'll be in my prayers😇

[Chri5ti in reply to SqueakMouse]

You gave me more things to pursue than any of my specialists! I just thought you should know how much you helped me and I hope you you helped Binguniverse as well. I have had 6 bouts of VM over 10 years. No obvious causes but I also have persisistent nausea. My doctors just chalk it up to the migraines I have had most of my life. Won't even consider it is from VM. I have copied and pasted some of your suggestions above to share with my neurologist. Thank you so much. These boards have made me feel like I'm not crazy or alone. So thankful to be part of this community.

[SqueakMouse in reply to Chri5ti]

Oh, Chri5ti--I can't tell you how much your kind and thoughtful message meant to me❤️. Your words brought tears to my eyes (the good kind😄!--ones of joy and appreciation😍), and I feel immeasurably blessed to have been given such a beautiful and profound gift☺️. I'm so sorry that I only just received it tonight; I've been having some particularly severe and unexpected side effects to some infusions I've been getting, and the increased double vision and tremors in particular make reading, composing, and/or typing anything up (anything that's even remotely coherent and legible, anyway😋😉) virtually impossible😧 But a few trips to urgent care and some new medications has controlled the symptoms a little better, so I'll finally be able to get started on providing the information you requested😋, and I'll send it to you as soon as I can😍

I was heartbroken to read your initial posts, and to hear about the injustice that some members of the medical profession added to the terrible injury that was your viral meningitis infection; given how traumatizing and terrifying and hurtful it is to experience such dismissiveness, judgement, and shaming, I wish I could say that being treated in such a way is the exception rather than the rule...unfortunately, the reality is quite the opposite, a fact that often causes equal damage to that brought on my the meningitis (and commonly even more painful😢).

I too have been made to feel as though I was exaggerating, misinformed, mentally ill, malingering, and countless similar accusations that can break your heart and leave an open wound in your soul😔. Most appalling of all, that kind of "help" is almost always disorienting at best and traumatizing at worst--and it's wholly unnecessary, because it's almost always wholly inaccurate (!😳!); as you know from all too painful personal experience, once you've experienced meningitis, you will never ever EVER mistake it for something else😬.

In other words, as painful and disabling as migraines can absolutely be, they feel distinctly different than meningitis--and to have someone accuse you of being mistaken on that account, and pronounced to be "too sensitive" or "dramatic" or "misinformed" is shocking and hurtful and insulting beyond description...and on top of all that, you are often sent home without help, relief, or support, and thus made to suffer the severe pain, disabling nausea, and overwhelming fatigue for weeks or months or even years on end, with no guidance or answers or support😔

And most crazy-making of all, the vast majority of us that present with these supposedly "impossible" cases of chronic and/or repetitive meningitis symptoms usually turn out to be absolutely correct--it IS meningitis, and we DO have a comparatively rare manifestation of it, so our instincts and interpretations were right all along (when I finally found a gifted and compassionate specialist who ran the necessary tests to correctly diagnose the issue, and every last one of those tests all came back positive, I had to postpone my drive home for more than an hour afterwards, because I couldn't stop crying--it was horrible to receive that permanent prison sentence of lifelong meningitis, but it was a great relief to finally have my experience validated, and to thereby have hope of effective treatment and blessed symptom management🤒😍).

Words cannot express how sorry I am that you've been made to endure such unjust and damaging treatment😢, so I was so happy to hear that some of my previous posts ended up having some helpful information for you😍 I'd be honored and delighted to type up some of the things that might help your doctor understand what's really going on with you, and what tests and treatment you need, and that has the best chance of persuading them to rule out migraines, to be open to the possibility that VM is the real issue here, and to consider initiating the recommended treatment (which is usually a daily dose of anti-virals as a preventative measure, with occasional treatment in times of a flare-up with steroids, antihistamines, and/or a specific brand of antibiotic that studies have shown to be more effective in suppressing the virus when taken together with the antiviral than relying on the antiviral alone) while diagnostic testing is being done, since any improvement or resolution of symptoms is just as useful as the blood tests in confirming chronic meningitis😉

Best wishes for improved health and stabilized symptoms😍--if you happen to think of any other questions or concerns that I might be able to answer, please don't hesitate to write...I'd be delighted to do some detective work on any subjects I'm not familiar with, and to connect you with any resources and support you have need of😍 Thank you from the bottom of my heart for your lovely note--I will treasure it always❤️

[Binguniverse in reply to SqueakMouse]

Hello SqueakMouse, I feel so disabled to find any words to say how much I am appreciated for your great efforts in analyzing my dad’s nausea syndrome. Your analysis is far more professional and thoroughly than any doctor did on my Dad’s case. I really hope you are well now since you affected by meningitis.

I read very carefully from the beginning to the end and I found my limited medical knowledge and vocabularies caused some mistakes when I described it.

First, actually, what my dad affected was encephalitis instead of meningitis. Forgive me my first language is not English and my dad’s treatment were all conducted in hospitals in China. So never had chances to know the equivalent English medical terminologies for this illness. When I looked up the dictionary, meningitis popped up and after reviewing the symptoms description I just found it fit my Dad’s situation. That’s how I confused these two.

Second, the damage was done on his temporal lobe part rather than frontal lobe. His MRI report stated abnormal signal intensity in the shape of patch found in both sides of his temporal lobe and insula.

Here I try to summarize all of the after effects of his encephalitis:

1.Memory loss: He lost significant part is memory, especially short memory though he still could recall some of what happened many years ago.

2.Epilepsy: During his second hospitalization, the doctor diagnosed epilepsy and he’s been taking epilepsy medicines every day since then.

3.Nausea: As I described in the last post, nausea seems now is the severest after effect because epilepsy is well under control now.

4.Sensitive to noises: The noises, like airplane noise, public noises can upset him and which can lead to nausea.

5.Strengthless limbs: He cannot walk for long and it seems his legs could not put strength on. Occasionally waggling when walking.

Among those after effects, nausea is extremely annoying. Long walk, cold wind, taking bath, eating a particular food, like congee, are all possible triggers for his nausea. Sometimes, it seems no reason at all.

Although your reply is based on meningitis (deeply sorry for causing this confusion), your analysis and suggestions are so comprehensive, and I think anyone who has nausea without clear diagnosis should follow your advice to examine any possible reason. Here are some of my thoughts and questions to discuss with you.

1.Does temporal lobe or insula damage cause nausea?

2.You mentioned inflammation of the cerebellum could possibly be the cause and advised to consult with a neurologist. This information is truly helpful. If this part of the brain is inflamed, could scanning possibly identify it? As my dad did quite a few scans and I didn’t find description involved with cerebellum in the reports. Or it means should be tested by other methods by the neurologist.

3.Inner ear suggestion is super informative, and I’ll look on it and find a physical therapist. And I’m so glad to hear that your family member and you returned to the normal life after a few sessions.

4.The vision test is very informative too and I’ll look at that too.

Again, THANK you so…much…My name is Bing, that’s my Chinese name also my English name too. So glad I can meet someone who has a similar name to me. More importantly, someone is so kind and love to share. I hope our conversation will help more people here and I’m sure it will.

[SqueakMouse in reply to Binguniverse]

Hello there, my fellow "Bing" kindred spirit😍❣️❣️ It was an immeasurable joy and an indescribable honor to read your beautiful message (I know you said that English is not your first language, but my goodness, that hasn't handicapped you in accuracy or eloquence the smallest bit--your posts are beautifully worded, clearly expressed, extremely thoughtful, and incredibly kind❤️...thank you so very much for sending me such an extraordinary letter😍. I was deeply touched, and I will cherish it forever💗

I'm so so sorry that I didn't get your note until now; I've been getting several infusions that have unfortunately been causing some pretty severe side effects, and it's been taking longer than I hoped to manage things like double vision and tremors well enough to read, compose, and type😳😬

But tonight I was finally able to manage some of that, and read through your message very carefully, and I think I might be able to give you and your Dad some more information on the subjects you listed😋

I can't recall if I mentioned it in any of my previous texts(?), but in addition to multiple cases of meningitis, I've had encephalitis a few times too (as well as a highly unpleasant condition that's a combination of the two, called "meningio-encephalitis"; as you can probably guess from the name, it includes inflammation of the meninges--which are the membranes covering the brain and spinal cord--and simultaneous inflammation of the brain tissue itself...so as you can probably also guess, the only good thing about it is its high point value in a game of Scrabble, and it's occasional appearance in crossword puzzles😋😉).

I'd be delighted to share everything I know about it and everything I've experienced, and I'll start typing it up for you right away😍. I'm very familiar with every symptom and test you described, so I can give you some reassurance there as well☺️; even though these side effects can be extremely painful, significantly disabling, and slow to heal, they are all very very common with encephalitis, so you don't have to worry that the negative effects of your Dad's experience are in any way unusual, hopeless, or permanent😊 It is absolutely possible for him to achieve significant improvement in every area you described (and very possibly a complete recovery, too😍).

In my experience, encephalitis has been one of those unique diseases where the severity or strength of the initial infection doesn't always predict the severity or strength of the outcome; in other words, your Dad can suffer a very serious infection, with many severe side effects and extensive disability, and still have hope of meaningful improvement, from his nausea and epilepsy to the weakness and sensory sensitivity😊 I'll be sure to address each and every symptom that you and your Dad have concerns about, and to provide answers to your questions about the cerebellum, the usefulness of MRI in cases like these, and some things he and his doctor can do to get as clear an understanding of his current status as possible, and more importantly, to maximize his chances of improvement and recovery😍

I can definitely empathize with your experiences with the encephalitis itself and the way it's treated (or more often, the ways it's NOT treated😧) in most medical facilities; unfortunately, it seems to be more common than not that patients and their families are virtually abandoned upon discharge from intensive care, with little to no guidance, continuity of care, structured treatment plans, or support in the offing😬

But I promise you, I'll do everything I can to try and fill that void, and to provide that necessary

guidance and support for you and your Dad, regardless of whether or not his medical team steps up to the plate😬😉 I'll send you all the information I can, as quickly as I can type it up😍 In the meantime, don't hesitate to send more questions or concerns if something new comes to mind--they will not go unaddressed, for if there are any subjects that I'm not familiar with, I'll do whatever I have to (call my doctor, pore over research papers in medical journals, or put in extra hours of study at the library😄). The initial encephalitis infection is traumatizing and isolating and confusing enough as it is, without having to have all of that magnified ten times over by being inadvertently or intentionally abandoned upon discharge from the hospital--and in my experience, the need for adequate guidance and sufficient support is even greater in the long weeks and months of recovery than it was when the illness first took hold😳

So don't worry, you and your Dad won't be alone in this anymore; whatever it takes, we'll find a way to get him what he needs, and to manage as many of the side effects as fully as possible while he regains strength, ability, and health😍

Best wishes and many prayers to you both, and thank you again for the gift of your beautiful note❤️😍❤️

[Binguniverse in reply to SqueakMouse]

No worry and hurry SqueakMouse, truly hope you feel better now. Glad to know you live in the States from your profile. I'm living in Montreal

[Rodman21]

Are they giving him anti nausea meds? If so, are they working?

They always work for me? Any fall bladder issues going on?

[Binguniverse in reply to Rodman21]

Hi Rodman. The doctors didn't give any anti-nausea meds. Only advice is eating less in proportion but eat more times. I was told by one of the doctors that in a lot of cases, the causes of some syndromes brought by brain damage may never be known...

[Keep-The-Faith]

I use Tulsi with Ginger Tea...works wonders & no side affects!

[Binguniverse in reply to Keep-The-Faith]

My dad likes tea very much and I'll let him try it. Thanks very much, Keep-The-Faith.

[sdjohnson231]

My neurologist prescribed “prochlorperazine” for nausea for me. It works fairly well.

[Binguniverse in reply to sdjohnson231]

Thank you sdjohnson. Is there any side effect for this med?

[sdjohnson231 in reply to Binguniverse]

Not that I’m aware of. I was told that it’s an “antiemetic” used to control severe nausea and vomiting. My meningitis left me with headaches that will come on suddenly, and that leave me nauseous and vomiting. This medication helps stop that. Once I even begin to get a headache, I immediately take this med. -Susan

[Binguniverse in reply to sdjohnson231]

Thank you Susan for such useful information. Wish you feel much better now and have a good holiday.