Post VM a year ago anyone suffer with anxiety from it?

[Jess2032]

So I contracted vm a year ago this month still scares me that it might come back! Have had loads of infections in the past year and now been diagnosed with anxiety 😞 has anyone else experienced this?

[Starry]

Big hugs xx

I developed anxiety then panic attacks a few weeks then months after mine.

Looking back, I think I had signs of PTS as I had a traumatic stay in hospital and it was only 4 days after major surgery.

I was prone to mild anxiety to start with though so it was an exacerbation/intensification of a pre existing personality tendency I guess.

Have you thought about seeing a counsellor? VM is a very traumatic experience and it might be worth getting help processing the feelings you get left with be it helplessness, fear, anger whatever.

Take care of you

[Jess2032 in reply to Starry]

Thanks for your reply

I’m currently on the waiting list for a counsellor it could take up to 3 months before I’m given one😞

Just wondered if there was anything else I could try?

[Gnugoo in reply to Jess2032]

Hi Jess! Well done for actively seeking help for your anxiety - you thus already have one foot on the road to recovery. Three months of waiting would otherwise provide plenty of opportunities for your anxieties to grow and affect your overall well-being, so best use this time for a bit of mental First Aid.

Your anxiety is rooted in your own thoughts and then in your responses to your thoughts, and in your subsequent analyses of those responses and so on until “pouf!” - you probably aren’t even thinking of stuff anymore but just being anxious. But go back to the beginning of that sentence and remind yourself that anxiety is rooted in your thoughts. Your anxiety is your brain’s reaction to its circumstances. You can’t change very much at all about the external situation you are in, but you absolutely CAN change how you think about it all. Your thoughts are your own. How can we coax our thoughts out of the vicious circle and into a virtuous cycle?

There are many tips and tricks you can easily incorporate into your life. Here are a few that I’ve found over forty years of dealing with anxiety and depression:

Look up “relaxation exercises” - your basic lying on your back with your eyes closed, take your awareness to your toes, wiggle ‘em, clench ‘em, clench really tight AND relax - move to ankles, wiggle, clench, relax (keep aware of how each bit feels) - move up your body in stages, all the way until you’ve done your eyelids and wiggled your ears. Then relax with counting four as you breathe in and blow out.

Also:

Smile. If you’re near a mirror, smile at your reflection. Scrunch your eyes closed and your face up tight, then open wide and relaxed with, maybe, jazz hands for good measure. Try it. Scientifically proven - honest. Then, later, when you think back about how daft that all was, smile again.

Then there’s Laughter Therapy. You can do it alone but it’s better with a friend or some random stranger you talk into it whilst waiting for a bus. You basically start out faking it, trying on a whole suite of different styles for several minutes, until you can’t help but quietly giggle to yourself. If you don’t reach the quiet giggling stage, don’t worry. Just go and have a rest because you’ve done the important bit.

You see that kind of forced jollity is an easy sort of mindfulness meditation coupled with breathing exercise. Which brings us to “When in doubt, breathe out.” I’ve forgotten who wrote this so I can’t give credit but, “When we experience pain - be it emotional, mental or physical - we inevitably hold our breath against it.” Just as we physically brace our muscles and hunch our body if we feel vulnerable. So “when in doubt, breathe out - let go, and soften.”

And speaking of breathing, remember all that fresh air outside - the stuff that smokers get to enjoy when they just “step outside for a quick fag.” Don’t let them have all the fun. You don’t need an excuse to stand out in the cold and rain snorting up the good stuff. But if you can cope with a little walk, so much the better. Can you venture further afield (or even a beach, or a forest?) Brilliant! Get out into nature, away from streets and screens and adverts, and spend time in nature. Most cities have parks or other bits of wilderness if you can’t travel too far. Seek them out and gawp gormlessly at the grass, the mud, the bushes and the berries. You don’t need to be a hippy to get it. You will get it, just be open to it - remembering that you are taking control over what goes into your head, and this fresh air and nature stuff is very easy to feel good about. And feeling good about stuff can become a habit. You might even go as far as feeling good about the shit that’s happened to you in the last year or so. You can do, it’s your head, they’re your feelings and you’re not under any obligation to feel anxious and crap. With any luck you’ll be just about ready in time to do counselling with a positive attitude of openness, honesty and clarity - making the encounter a whole lot easier and more productive.

One last thought:

An acronym reminding us how to approach dealing with traumatised youngsters is PACE. Stands for Playfulness, Acceptance, Curiosity and Empathy. Remembering to think this way when faced with a shouty, stress teenager is hard, so to get in the habit I’ve found it helpful to also use it on myself. It does help. Google it and learn more.

Stay cool, Jess. 😎

[Starry in reply to Jess2032]

There is a lot you can do by way of self help. Lots of good tips by Gnugoo. Below a few things I've picked up.

7:11 breathing is the simplest reliever. Breathe in for a count of 7 then out for 11. This is because it increases the amount of carbon dioxide in your blood stream. Or even just counting and focusing on your breaths. Www.calm.com is a simple website.

I am finding listening to nature sounds good and have combined it with diaphragmatic breathing. I got an app called nature sounds by relaxxio.

Guided relaxation app

Withandrewjohnson.com has a free relax app and a pay for panic one.

Headspace is meant to be good.

Also meditation or mindfulness. Some sites my occ therapist suggested include meditationaoasis.com, fragrantheart.com, franticworld.com, the-guided-meditation-site.com.

Basic Cbt

Rational self talk which is identifying then challenging anxious thoughts by replacing the worrisome idea with a more realistic thought. Eg, i know tgis food is safe to eat because my husbamd is eating it, so and so probably didnt mean to snub me, they dont hate me but were just having a bad day or whatever.

You could explore the emdr technique if it is distressing memories, which is a way of processing them.

Website nopanic.org.uk is a charity for anxiety disorders with lots of info.

There are depression and anxiety and a ptsd group on health unlocked for peer to peer support.

Baths, massage, aromatherapy genfle walks in nature under trees etc all help.

Basically anything that switches off your sympathetic nervous system (fight or flight reflexes) and switches on your parasympathetic nervous system will be helpful to recovery amd healing.

There are also meds. I'm on pregabalin which helps my anxiety and sleep. Also sertraline Amytriptyline etc. Lots to try depending on your sensitivity to side effects. Pregabalin is the only one I've managed.

Hope some of these ideas helps

Xxx

[Binks84]

It’s a year post my first infection. I have really struggled with anxiety. I was traumatized from my experience and then got it again. I freaked out but gained control over myself and as much of the situation as I could.

For example 1 Dr failed maybe 8 times trying to do my lp the first time. This time I refused to let that Dr touch me. The hospital insisted that same Dr would perform the lp and I refused insisting on another Dr, given what had happened. In the end they had to listen to me.

It’s a terrible thing to have to go through but we have to make peace. It’s given me insight into myself. I’ve had to be extremely assertive and not so trusting of Dr’s.

We have to listen to our bodies. Rest. Boost your immune system. I started seeing a natural Dr about a month ago. Helped me so much. Except I felt so good, I pushed myself and now I’m back in bed, serious headaches, body aches. So basically it’s a journey.

[Keely-S]

Hello Jess

I had bacterial meningitis almost one year ago and I have been getting very anxious indeed recently, I too am very scared of getting it again. As it’s getting darker and colder and Christmas things are around I am recalling it all over and over, which I think it’s only natural to do tho given how traumatic an experience it was. So I try to be very kind to myself, I try to look after myself but not do too much as I still experience awful dizziness and severe headaches .

I talk about my fears to people close to me and that helps though it can be difficult for some to really understand, only those that saw me so ill can grasp it. I saw that you are on a waiting list for counselling which is a good thing. I recently completed a series of sessions with a therapist and I found it really helpful. I’m hoping once I have got past the first Christmas since meningitis I will feel a bit better. I was hospitalised for a week before Christmas and then continued 2 weeks of IV treatment at home though I remained very poorly for a long time. I do feel so absolutely thankful though that I am as well as I am.

Perhaps try some complementary therapies to help with anxiety, reflexology is great, acupuncture, I have had great benefit from those. Also I walk every day somewhere nice, woods or parks, I find that helps clear my mind a bit and keep perspective.

Take good care of yourself warmest wishes

Keely

[SqueakMouse]

Hiya Jess😍❣️ It's an honor and a delight to "meet" you😋😉, although I dearly wish we could have met under different circumstances than through a forum for meningitis patients😳--and saddest of all, meeting you in this forum because you continue to suffer such severe distress and disability that you were forced to send an S.O.S. through cyberspace, hoping against hope that someone out there would hear your plea and have some useful advice and effective remedies to offer😬.

I can't express how sorry I am that you're suffering so acutely; truly, my heart goes out to you😍. As a fellow meningitis patient, I can empathize with the pain you've endured (and that you continue to struggle with), and I would give anything to have a magic wand straight from Ollivander's shop--one that we could use to not only dissolve your current symptoms (on all levels, from the physical and emotional to the psychological and spiritual, because as you know from all too intimate personal experience, viral meningitis rarely skips a level on any and all people so unlucky as to be infected with it😳), but to erase all memory--again, on all levels--of the entirety of your experience with it (for as other posters in this thread have stayed with such wisdom, eloquence, and accurately, long-term effects like anxiety or fatigue are usually the result of injury/chronic inflammation from the virus itself, as well as the trauma of the illness and your experiences associated with that, from the onset of symptoms through treatment/testing/hospitalization to the havoc it can wreak upon your body, relationships, self-esteem, capabilities, etc. in the days, weeks, months, and even years post-diagnosis). Alas, Google Maps failed to locate Diagon Alley in any of my search efforts, so much as it disappoints me to say so, I fear we are going to limited to dull and (oftentimes😉) dysfunctional Muggle medicine in our attempts to discover an effective, affordable, and manageable treatment plan for you😍n

[SqueakMouse in reply to SqueakMouse]

Oops!, I'm so sorry Jess😮! It looks like I need that magic wand even more than I thought😋--somehow I managed to Send my post before I had finished it (and worse, before I had proofread it😳; even a casual read-through exposed several typos that may render the whole thing virtually illegible😬😉)

Here is a list of the most glaring offenders, all found in the second paragraph and beyond😋: "...for as other posters in this thread have STATED (not Stayed") with such wisdom, eloquence, and ACCURACY"(not "Accurately"); "...I fear we are going to BE limited to";

OK, I think those are the worst offenders (as far as I can see at 4:30 am, anyway😬). Speaking of which, I think I should try to catch at least a wink or two of the commonly allotted 40😉, at least before I try to finish typing up the information I have for you, lest it all become more and more illegible by the paragraph😋

I just wanted to reach out to you the moment I discovered your post; bleary eyed and disoriented as I may be at this hour of the night, I wanted to reassure you that yes, yes yes A Thousand Times YES, the symptoms you described are completely normal manifestations of viral meningitis, both during the initial acute infection and in the days, weeks, months, and even years afterwards. But that doesn't at all mean that you are doomed to suffer indefinitely, or to be forced to make peace with this "new normal" (because honestly--who in her right mind would be at peace with symptoms this distressing and disruptive, unless and until there were no effective interventions or promising treatment plans left in the tool box😋?). And I promise you--there most absolutely ARE effective interventions and promising treatment plans available to you, right here and now, that are well worth trying😍 I can say that with such certainty because I've had meningitis countless times (Don't worry, that won't be the case with you😉; i'm that one-in-a-million, super rare exception to the general rule😉).

Most patients with a history of a single bout of viral meningitis can be comfortably certain that they will never suffer a second bout (unless one of several very rare circumstances are a factor, such as a severe immunodeficiency; physical depletion due to medications like steroids, ongoing treatment like Chemo, surgical procedures, or radiation therapy; or a co-infection like lupus or a "comorbid" condition like cancer; the existence of a congenital or acquired "flaw" of a sort that increases one's vulnerability to infection, such as having a puncture through the inside of a sinus cavity, allowing bacteria to be in close proximity to the brain and to infect it by traveling through the puncture, and shall continue to do so until the hole is located and repaired; or a problem with the immune system's ability to recognize a virus and therefore to defeat it, and/or limits it's ability to successfully create sufficient antibodies to prevent re-currencies of a given infection; an allergy or sensitivity to a certain chemical, medication, food additive, etc. that results in a kind of "allergic reaction", sometimes the result of a mast cell dysfunction, that includes inflammation of the meninges called "aseptic meningitis"; and a rare sort of pre-disposition to viral meningitis that manifests as a "chronic meningitis", with nearly constant low-to-mid inflammation of the meninges, called "Mollaret's Meningitis" or "Chronic Meningitis").

In other words, it is not an easy or a common thing to come down with meningitis of any form from any cause, (including viral), unless a very unusual circumstance exists (such as those described in the examples listed above) to artificially effect such an outcome.

And that being the case, the distressing symptoms you are experiencing now are far more likely to be residual effects of your initial viral meningitis infection, and not evidence of a relapse or a secondary infection. Studies have shown that these residual effects (which can mirror pretty much any symptom you experienced during the acute phase--I.e., the first days of symptom onset and after diagnosis is made--of the infection, usually to a lesser extent or extreme than that which you experienced in the first week of infection, but not always....it's not at all uncommon for some of those residual effects to feel just as terrible as they did in the beginning, especially if you've inadvertently added physical or emotional stress to the mix.

I can attest to the truth of this phenomenon due to personal experience (I have several of those unusual/rare risk factors, and often come down with meningitis a couple times a month, year round😳), but also due to familiarity with the research on the subject. There are plenty of studies published in plenty of reputable medical journals that prove the existence of residual effects, and that prove that one of the most common residual effects is a disruption in mood, such as anxiety, panic, or depression.

I've gone ahead and tracked down several of those studies for you, so you can have the proof that you and/or your doctors and/or your friends and family that what you're experiencing is a very common and very real disease presentation for meningitis cases of all kinds, including the viral meningitis that you contracted. I've just got to type up the links for you so you can easily access them; I promise I'll get that done for you as soon as I can😍

Several of the published papers I've pulled for you give recommendations for how to effectively treat each of the more common residual effects (and I pulled suggestions that give you a choice--meaning, some studies suggest medications, others suggest milder interventions like cranial-sacral work, and there are enough choices and price points that you can find options that are a good fit for you as a unique individual, rather than forcing you into a little box with a super expensive experimental drug that causes other unpleasant side effects of its own😬, which is hardly a comforting proposition😋😉).

The suggestions that these articles make are in support of treating each symptom and every possible cause, from the physical damage (inflammation of the brain caused by the virus) to the emotional (PTSD caused by the trauma of being so sick for so long with such a serious, disabling, and potentially devastating disease, and by the trauma of medical "assistance", which can cause harm in its efforts to heal--there is trauma from procedures, faulty IV access, extreme physical pain, loss of control over one' life, medical treatment, sense of infallibility, etc. Together, these approaches will address the symptoms holistically, rather than emphasizing one or two of the more disabling symptoms such as headaches and nausea, and ignoring less obvious ones like anxiety. In my experience it's the best way to make permanent and measurable progress, slowly and steadily increase your sense of well being as a whole person that needs care and love to return to wellness, rather than a mere conglomerate of negative symptoms😋

I'll get those links to you later today as well😍. For the time being, hang in there as best you can; you've been through SO much--body, mind, and spirit--and your entire being is needing and wanting (and deserving😍💗) validation and comfort and acceptance. You know more than most just how difficult and disabling and disruptive and devastating viral meningitis is, despite the unfortunate fact that mainstream media, medicine, and society by and large dismisses this truth out of hand, which only serves to increase our sense of shame and grief and loss ("The hospital said that viral meningitis runs its course in 10-14 days, and so they insist that these awful anxiety attacks I'm suffering from three months later can't possibly be residual meningitis effects, and must be stress or caffeine instead; I don't understand it, I never reacted to stress or caffeine this way before the meningitis..."; "It's been five months and I'm still virtually incapacitated with symptoms. The doctor and Wikipedia say that viral meningitis can't possibly be the case that many weeks afterward. So am

I crazy? Lazy? I always loved my job and being active, so it's not like me at all to lay in bed day after day, month after month; I know this in my heart, but my doctor was so adamant, so maybe I really am in denial, maybe I really am just a quitter, lazy, weak..."😳). Honestly, is it any wonder we get PTSD with this disease😋? If we weren't crazy before, we will be once the fun house mirror that is most modern medical theory and practice distorts our reflection beyond all recognition😬. The real truth is that you're immeasurably brave, indescribably strong, and very, VERY inspiring to those who have eyes to see❤️😍❤️😋

I'll be back with those links as soon as I can☺️ Be good to yourself, treat yourself with the care and respect and compassion that most of the medical system so grievously failed to express. You deserve it💗💕💗💕💗💕💗💕💗💕

[Kitsismimi1]

Hi Jess2032,

I’m can completely understand how you are feeling.

I believe this is normal, having VM is a very traumatic experience.

But you WILL get through this!

I had VM in April of this year, and I struggle with many ups and downs, this is normal

too!

I have had crippling thoughts of fear of getting it again, never recovering, and I have had to seek Counseling help to help myself so I could cope better.

I just wanted to share 2 things that have helped me immensely..

1. Our fears are NOT facts.

2. Possibility versus probability.

It’s extremely rare to ever have VM again.

Trust that fact!

Sure, you could possibly have it again, but the probability is very unlikely.

Most importantly, pray!

I pray many times a day for help with bearing this burden.

Our loving God may not take the burden away, but He will help you carry it.

We are not meant to go through they alone!

He is there to help us!

There are brighter days ahead!!

Hang on, you will feel much better!

Take good care,

Jaime

[SqueakMouse]

Good evening, Jess😍❣️ It's SqueakMouse here (the girl who buried you under an avalanche of texts the other day😉) I'm so sorry--I know firsthand what a daunting and difficult task it can be to read even a few words when you are suffering from meningitis/long-term post-infection symptoms, much less a virtual deluge of them😋

It's just that a empathize with your plight, and have great compassion for your suffering, so I wanted to give you as much information as I could, so you could have a lot of options to choose from (not every intervention/treatment works for every patient, so by providing as many details as I could, I'm hoping that at least a few of them will work for you, and provide some of the relief and healing that you seek, and that you so richly deserve😍😉).

And I'm also really sorry that I haven't been able to text you those journal articles I retrieved for you, and that I hoped to post within a day or two; I had a rather severe reaction to an immunoglobulin infusion, and that rendered me pretty useless as far as having the ability to write coherent or even remotely legible texts for you😋 (if you thought my texts were rambling before, you should see the ones I attempt to write in the midst of a case of acute post-infusion aseptic meningitis😉🤣).

Before I post the articles, I thought I'd give you a few pieces of my post-infection personal puzzle, for they ended up being crucial contributors to my efforts to lessen the severity of my symptoms, and to have an understanding of what makes me vulnerable to meningitis in the first place (the better to avoid whatever re-infection you can; to speed diagnosis and treatment if you ever do come down with something that feels like meningitis, and you have to go to the ER; and to lessen the severity of your symptoms in the acute phase of the infection, and the days or weeks afterward as well😋😉).

In a previous text, I think I mentioned a few of the more common causes and presentations of a repeat bout of meningitis, and since that prospect has been haunting you (which is a completely understandable and justifiable fear, given how inexpressibly painful and difficult the illness is, both during and after active infection; truly, there are no words to adequately describe the experience to others, who very very rarely understand, believe, or empathize with just how challenging, traumatizing, and agonizing it is, if they haven't been through it themselves😢...as if the experience isn't isolating and confusing and terrifying in itself😮😣), I thought I'd share the causes behind my own series of re-infections, in hopes of reassuring you of the infinitely small possibility of coming down with it again, but also giving you some proactive and useful things you can do in those very rare cases that it does reoccur (I've found that being informed and prepared is immeasurably helpful in getting swift and effective treatment, and in relieving, minimizing, and managing any symptoms you might experience after discharge from the hospital--in all the many times I've contracted any form of meningitis, I can't recall a medical professional of any kind ever giving me such tips, even though we invariably suffer with many distressing symptoms, and often for many weeks😬).

There are many helpful articles in many esteemed medical journals and some of the more informative and intelligent websites about the subjects I'm going to share, so I'll try to keep it short and simple here (as short and simple I ever get, anyway😬😉; most certainly, my nickname is no accident--I can squeak squeak squeak for quite an usual length of time🤣🐭. It's just that I've navigated the maze of multiple bouts of meningitis, so I've picked up a few tips along the way...and my heart goes out to you for everything you're going through, so I'm hoping that sharing my own odyssey will spare you from having to navigate it yourself😋😉). And if anything I write seems to apply to you as well, you can explore the subject in more depth if you wish, in the many high-quality websites provided on the internet, some of which are included in the articles I'll be posting for you at the end of this text😍

Okey-dokey then😋...to start with, you mentioned that you've suffered many infections in the last year (beyond of and separate from the viral meningitis diagnosis). That happened to me as well. In fact, I was diagnosed with a second case of viral meningitis within two months of my first experience with it (which is highly unusual in itself), and inexplicably at that time, I came down with it four more times in that first year😳 (which is far beyond "highly unusual"😬😉).

And when my second year after my first viral meningitis infection played out the very same way, I knew more than ever that something was terribly wrong, and since I couldn't bear the idea of living the rest of my life in a devastating pattern of suffering a new case of meningitis, then struggling with all the distressing symptoms that linger for weeks after discharge from the hospital; then coming down with yet another new case of meningitis, followed by weeks of painful symptoms; falling ill with viral meningitis yet again, then enduring yet another stretch of post-discharge symptom management...rinse, dry, repeat😬😋

There were too many medical professionals to count during too many hospitalizations and appointments and tests to list here; one of the things that confounded me then--and continues to confound me to this day--was the fact that so very, very few doctors know much about viral meningitis (including both the patient experience of it, and how the symptoms linger far beyond the "10-14 days" that medical school/textbooks tell them😳), despite the fact that it's hardly a new or rare illness, to the point that any medical school student--much less a resident or fellow--could diagnose it with the help of a few tests and a careful read of symptom history, albeit slowly and clumsily (so many cases are overlooked, minimized, and/or attributed to "stress" at best and "hypochondria/conversion syndrome at worst, especially if the patient is female😢).

And if the patient had the good fortune to be correctly diagnosed and immediately treated via intelligence, insight, and intuition, their efforts tend to be too little too late, and/or too insufficient and too briefly, both during and after hospitalization.

In other words, since every patient is an individual, every case of viral meningitis is individual too--so the most effective and appropriate treatment might go beyond prescribing the anti-virals/anti-inflammatories, and pain relievers that mainstream medicine teaches them, and contrary to the recommendations of that same mainstream medicine, such treatments may need to be prescribed for many weeks after discharge🤒

Given all that, suffice to say that my efforts to pin down the cause of these repetitive bouts of meningitis--and the consequent treatments that could either stop that pattern entirely, or lessen the severity of those infections and manage the symptoms with greater specificity and success😣

I'll spare you the details here😋--no doubt you know the various aspects of the journey all too well yourself😢. Ultimately, there were several contributors to the circumstance of contracting viral meningitis in the first place, and to the excessively rare pattern of continuous re-infection; it wasn't until these contributors had been correctly diagnosed and treated that I experienced a vast reduction in the number of re-infections, and in their duration once diagnosed.

But even though this wasn't a cure-all, it most definitely increased my quality of life, and gave me some tools to often manage my symptoms at home on my own, effectively and quickly--an indescribable blessing, especially considering how severe the symptoms can be, and how wonderful it is to mostly avoid repetitive trips to ER and frequent hospitalizations (where we often suffer inaccurate diagnosis, insufficient pain relief, and compassionate care--not to mention the indescribable awfulness of hospital food😂😉).

There were two main causes of my unusual history with viral meningitis: An immunodeficiency, and a problem with some of my cells and their function of "remembering" any virus or bacteria that is introduced to the system for the first time (so it can reliably and successfully recognize and destroy the same viruses and bacteria if they should ever present themselves a second time).

The immunodeficiency was ultimately diagnosed via some very focused and specific blood tests, combined with the patient's medical history and the presentation of current and previous infections. In essence, the body fails to create enough of the cells that are vital to successfully repel, reduce, or destroy invading viruses, bacteria, or funguses, and to ultimately heal the infection and restore the body to full strength and health (and more often, to protect the patient from acquiring the infection in the first place, or to lessen the severity and duration of any symptoms).

If you want to get an idea as to whether or not an immunodeficiency is something you might have (and therefore to take steps to get it diagnosed and treated), I can give you a list of the things that caused my primary care physician to refer me to an immunologist, and to cause the immunologist to suspect an immunodeficiency and to begin testing for it (Note: If you happen to suspect an immunodeficiency yourself, I discovered that it is of great importance to make an appointment with a well-regarded and experienced immunologist and/or a physician practicing as an infectious disease specialist; as I said, few doctors these days know how to recognize such conditions, and even if they do, they rarely run the tests that are most crucial to an accurate diagnosis--and your chances of getting accurately diagnosed are much, much higher going to an immunologist/infectious disease specialist. In my experience, and all my many, many trips to the ER or to the various doctors trained in diagnosing and treating the various symptoms that an immunodeficiency often causes, they never suspected or tested for an underlying immunodeficiency.

Therefore, I wasted several years and a lot of energy and expense on this merry-go-round--a nephrologist to treat the kidney inflammation; an ear, nose, and throat doctor to treat the numerous cases of sinus infections, strep throat, ear infections, and laryngitis; an opthomologist to treat the many bouts of conjunctivitis and optic neuritis; an audiologist to treat ear infections and hearing damage from shingles; a pulmonologist to address pneumonias, pleuritis, and bronchitis; a dermatologist to manage deep skin ulcerations that never healed--even after three years😳!--as well as shingles, rashes from MCAD/Mast Cell Activation Disease, and cellulitis; a neurologist to treat nerve damage from chronic VZV, meningitis, TIAs, and strokes; an ER doctor to treat severe infections like encephalitis, rabbit fever, and hantavirus; a rheumatologist to address Lyme's Disease; a cardiologist to treat endocarditis and pericarditis; a gastroenterologist to treat stomach ulcers, esophagitis, opportunistic infections like candida and mononucleosis, pancreatitis, and appendicitis; and on and on and on😬😋

I know that's a huge laundry list (and that's a serious understatement, right😉?) and I really struggled with the decision to include it here, and to include it in such exhaustive detail. But when I was going through all this prior to my own diagnosis, I had so many infections and so many symptoms (that occurred so many times, in so many rare forms, and that presented in such unusual fashion, such as pneumonias that took months to heal, despite numerous antibiotics, and strict adherence to the treatment protocol) that I always knew that no "normal" person should be going through--especially a young one like me, who had the good fortune to enjoy robust health for my entire life up to that point-- despite the lack of concern or interest displayed by too many doctors to count, and their failure to look into the root cause of all these infections, or to consider such detective work to be unnecessary😳

Given that history, I was convinced that there was something very wrong going on with my health, and something going on that caused all these unusual illnesses in such abundance. And that's why I included that lengthy list in such exhaustive detail; as I said, I eventually sensed that something was wrong with my immune system, but it took forever to get that diagnosis and treatment for it--so I wanted to spare you from going through the same terrible experience, in hopes of getting you that crucial diagnosis (if this is indeed what you suspect you might have), and thereby spare you the distress of being sick for what seems like forever, and never seeming to fully recover or heal, and missing out on so much joy and life and the fulfillment of cherished goals and dreams as a result❤️😍❤️

Bottom line: If the cause of your many infections over the last year is indeed an immunodeficiency, the paragraphs above are the main clues. The primary red flags include: (1) Coming down with infections over and over and over--especially if that is a new pattern beginning in or around the time that you were diagnosed with viral meningitis; (2) Contracting infections that the body normally represses or repels in healthy people, and/or usually occur in childhood and don't reoccur later in life or reoccur multiple times, like mono or candida or CMV or shingles; (3) When you come down with an infection, it often presents much more severely than I does in other people, and takes much longer to heal than other people experience or that general medical consensus expect; and sometimes, these illnesses never seem to heal at all--you have a chronic cough, skin rashes or ulcerations that are as painful, inflamed, and numerous for months or years as they were when they first showed up; (4) Some of the infections you contract are extremely rare, even to the point of requiring CDC notification, such as rabbit fever or hantavirus; (5) Even when you're not experiencing an active infection, you feel "like you have the flu"--aching joints, extreme fatigue, night sweats, feeling like you have a fever when the thermometer says otherwise, pressure or congestion in your sinuses or behind your eyes, etc.; (6) The combination of recurrent infections and experiencing the aforementioned "flu-like" symptoms are severe enough to render you bedridden more times than not, with no desire or ability to do the work, hobbies, social events, or sports that you used to love and/or perform with ease, or had gotten to the point that you've taken a leave of absence from work or quit your usual commitments like volunteer work, "girl's night out" with friends, spiritual rituals like church or temple, going out to get groceries--or going out ever to go anywhere--and keeping up with the care and maintenance of your literal house and your physical house, such as vacuuming or cooking or exercise; (7) Never really feeling or being completely cured of an infection, despite adequate treatment and the passing of time; (8) Feeling listless and exhausted almost all the time--especially if you were active or athletic prior to your decline in health--and either sleeping almost all the time but rarely feeling refreshed when you awaken, or being unable to sleep or to sleep on a normal wake/sleep cycle, no matter how much rest or sleep you get.

These are the hallmarks of an immunodeficiency such as PID or CVID (or one of my own immunodeficiencies, called hypogammaglobulinemia--don't you love MedicalSpeak😋? That's quite a mouthful😍❣️). You don't have to experience everything on that list for that to be the case; having just a few could signify the condition, as is experiencing only two or three but in great severity. The treatment is usually a series of infusions of IVIG (an IV consisting of antibodies and other important components of a healthy immune system, created from the blood of hundreds of donors), and depending upon the specific immunodeficiency and the severity of it, they might be prescribed for a series of days, weeks, months, or even years (I have to get IVIG once a week for life, as my particular immune system dysfunction is incurable and therefore lifelong).

Many people enjoy a complete recovery of energy and health, sometimes almost immediately and others after a course of several treatments; oftentimes they achieve the reduction or even the complete recovery of symptoms that result from chronic illness or auto-immune destruction, such as neuropathies, lung or kidney inflammation, spleen enlargement, lymph node swelling, and cells damaged by strokes or brain infections, though such improvements often take weeks or months or even a year or so to be significant or noticeable.

The other primary contributor to my tendency to get viral meningitis is a dysfunction in the memory cells (the ones that are created by the immune system to identify and recognize incoming bacteria and viruses, so that after the initial infection, they are able to "remember" what the invading cells look like, how to deal with them, and how to repress or destroy them (some viruses like VZV never disappear; after the initial expression of infection via childhood chicken pox, they reside in a nerve or nerve plexus in low enough numbers to prevent them from causing an active infection, like VZV encephalitis or meningitis, shingles, or optic neuritis. But if the memory cells are dysfunctional or damaged, they can't "recall" what the virus looks and acts like, or how to address it, how to repress or destroy enough of them to prevent active infection, or insufficient/nonexistent antibodies.

The same pattern can occur with other viruses and bacteria, which not only allows them to control their numbers or prevent them from recurring over and over again--which can result in overwhelming or life-threatening infection--but occasionally results in chronic illness of varying severity, such as chronic candida, shingles, or CMV/colds.

The memory cell dysfunction can exist relative to a single virus or bacteria, or to several of them. My own system is damaged in relation to VZV (zoster virus, which expresses in illnesses like chicken pox, shingles, meningitis, encephalitis, and heart disease), and doesn't create antibodies to it. Therefore, I get VZV infections constantly (and those have trouble healing fully or quickly, due to both the hypogammaglobulinemia and the memory cell dysfunction), and many of them seem to be present in varying levels of severity almost constantly.

There are several viruses, bacteria, and funguses that can cause meningitis, with VZV being just one of those that can cause viral meningitis. That's why I felt it was really important to tell you about immunodeficiences AND memory cell dysfunction, and to tell you about them in great detail, because either or both can be the cause of both your viral meningitis and/or your multiple infections afterward.

So if you continue to suffer from constant infections and/or specific recurrent infections like a repeat bout of viral meningitis, I would recommend finding an experienced immunologist for sure, and perhaps a neurologist (most neurologists know about those memory cell issues, especially ones like VZV that can cause chronic nerve pain, long term nerve damage, and symptoms of nerve damage like dysautonomia (autonomic nervous system damage/dysfunction).

Treatments for memory cell issues usually include immune system boosters/healers/balancers like IVIG; chemotherapy infusions like Rituxan; anti-viral medications like Valtrex or acyclovir; and nerve pain relievers like gabapentin/Neurontin. Sometimes an antibiotic might be used to control virus repetition between active infections, like doxycycline combined with an antiviral like Valtrex.

Something worth noting: One of the common side effects of IVIG is a severe headache, but it usually disappears within a few days post-infusion. However, occasionally the IVIG triggers a form of meningitis called "aseptic meningitis", which is an inflammation of the meninges that is caused by a medication or chemical, not a virus/bacteria/fungus. So the treatment doesn't include antivirals as are usually employed in confirmed viral meningitis; instead, the goal is solely to reduce inflammation and manage symptoms (while the goals when treating viral meningitis include suppression/reduction of the offending virus, in addition to reducing inflammation and managing symptoms.

The most effective methods of doing this include antihistamines like Benadryl, steroids like Decadron or prednisone, fluid and electrolyte supplementation (usually via infusions), and anti-emetics (to address nausea and vomiting) like Compazine, Zofran, and Pepcid; sometimes all of these are employed.

If your meningitis is an aseptic meningitis triggered by an IV, a combination of these are usually prescribed prior to the start of infusion, spread out during the infusion, and for a few hours or days (depending upon the severity of symptoms) afterwards. Some people can completely avoid coming down with aseptic meningitis when using this protocol, or experience them in decreased severity, or have the duration of symptoms reduced from the common experience of a few weeks to a mere few days😋

If your aseptic meningitis is caused by an adverse reaction to a food or medicine, this combination of medicines are just as effective. Few people know this, but it is quite common for chronic symptoms/severe symptoms of long or seemingly endless duration after a diagnosed bout of viral meningitis to actually be a chronic aseptic meningitis. It's true that such circumstances are also very common after viral meningitis alone, as the inflammation caused by that virus waxes and wanes.

However, a viral infection can often trigger a heretofore latent tendency to auto-immune disease/process, or a sudden adverse reaction to a food, drug, or virtually any other substance (from latex to dyes to aspirin), even if you never had a reaction of any kind to that particular item before. The trigger might be the active ingredient in a medication, or something called excipients (lesser or inactive ingredients like dyes, fillers, the substances making up the coating or means of delivery or flavoring, like gel capsules or ODT's--Orally Dissolving Tablets--or the technology that causes extended release of the drug.

So I think it's well worthwhile to do some detective work whenever viral meningitis symptoms linger and/or continue to be very severe or constant. It merely involves being aware of everything you eat or drink, or take as medication, and take note of what your symptoms are/how severe they are (like the Pain Scale chart, i.e., write down in a notebook specifically for this purpose whether or not you have a headache, how severe it is on a scale of one to ten, etc.), and do the same with any and all symptoms that have plagued you after you were first diagnosed with viral meningitis. These include headache, brain fog, nausea, fatigue or sleepiness, lack of appetite or excessive appetite, tremors or weakness, neuropathies like trigeminal nerve pain and spinal pain (because meningitis affects the entirety of your meninges, which encase the brain and spinal cord all the way down your back, and therefore often causes aching or burning pain from your head and down along your neck and between your shoulder blades, and sometimes even to your lower back; it's why those awful diagnostic tests where you have to bend your chin to your chest and endure a straight leg raise while lying down are so excruciating, and cause that sharp instantaneous zing of horrible nerve pain right down your spine😳), etc.

Then you should take another self-evaluation immediately after ingesting that medicine or food or drink, and in the first 30 minutes or hours afterwards too. Use the same measuring stick ("What's my headache on a scale of one to ten", and so on). Also try to notice and measure any new symptoms, that are either an inconsistent or fluctuating symptom you relate to viral meningitis, or a new and unique one that you don't usually associate with viral meningitis.

These can include sweating, chills, fever, rash, redness of the skin and/or swelling of limbs, legs and ankles, face, and/or abdomen; tightness in chest; raised heart rate or blood pressure; itchiness; hoarseness; dizziness; indigestion or heartburn; tremor; weakness; fatigue; "restless legs", feeling faint, and anything else you notice. Measure and record those on a scale of one to ten also. Make sure to record exactly what you ate or drank, what medicines you took (and the dose), and how long after ingesting them that symptoms arose or worsened (if any).

Do this experiment for about a week, and then go back over each entry and see if you notice a certain item that seems to have caused a reaction (especially the severe ones), and pay special attention to when or if your meningitis headache returned or increased or changed from being intermittent previous to ingesting the item to constant.

If you find something that looks to be an offending item, see if there are any similarities amongst any of them (for instance, you react in some way to each and every medication from the NSAIDS--aspirin, ibuprofen, Diclofenac, etc., or every food that has tomatoes in it). If you like, you can then look up the ingredients list online, by typing "excipients in prednisone manufactured by Roxann", or "ingredients and excipients in DayQuil Extra Strength", and see if a certain ingredient shows up in the very items that you react to. These are often sulfates (in cleansers and shampoos), and dyes (Red, Blue, and Yellow are big ones, found in obvious things like Jello, Cough Syrup, candy like Reese's Pieces or Twizzlers; however, it's shocking how many items contain dyes that appear to have none, like white pills or apples or ice creams😬)

In this way, you can reduce or eliminate the contributor to (or even cause of) your meningitis headache, or things that make it worse. Especially if you're ingesting this item every day, day in and day out, week after week, month after month (like cheese slices on your lunch sandwich, the cookies for dessert, a perfume you wear every day, your daily conditioner or shampoo or face wash, the medications you're taking--both over the counter and prescribed--several times a day and/or every day), which could easily explain why the headache never goes away or lessens in severity. It could be aseptic meningitis, or lingering inflammation from your bout of viral meningitis that is aggravated by aseptic meningitis, or a lesser reaction than aseptic meningitis in that it doesn't further irritate the meninges, but that nevertheless increases systemic inflammation, which creates a biological and chemical and hormonal environment that is not conducive to healing an inflammatory disease like viral meningitis.

Something that has worked miracles for me (specifically, the meningitis headache) had been steroids; it's the only thing that provides relief when my headache is unbearable. NSAIDS like Aspirin or Advil don't help at all (they actually make things worse, as I get aseptic meningitis from them😬), and even narcotic painkillers like Percocet or Morphine/MS Contin don't work much against a meningitis headache.

So whenever the meningitis gets particularly agonizing, I take a small dose of Decadron steroid (1 and 1/2 of a 4mg pill) combined with 50 mgs of Benadryl (I'd recommend the dye-free liquid capsules version, as the pink tablets and capsules contain a red dye that often causes reactions, particularly headaches). Just ask your doctor if he or she would give you a prescription of a steroid to take as needed; this small a dose taken infrequently greatly reduces the possibility of negative side effects like a weakened immune system or facial swelling).

Since my doctor gave me this effective combination to provide sufficient relief at home, whenever I need it, without needing an ER or medical professionals to help. That's been a tremendous blessing, because as I said, I get meningitis of either the viral form or the aseptic form quite often, with the symptoms often becoming quite severe; in the past I had no option but to go to the ER, which provided the treatment I needed to gain relief, but the cost was high--it was exhausting, time consuming, stressful, and expensive😢 So words can't express what a relief it is to have these home care options😉

I would also like to add my support and agreement to the terrific advice that many of the other patients added to this thread; they gave excellent advice, from limiting your time spent doing things that tax your brain (which includes the obvious ones like reading, phone calls, composing and writing letters, studying, and ruminating over certain thoughts or subjects; but also some things that are less obvious, like driving, watching TV, keeping the blinds open on very sunny days, sitting in a room floors with bright light or lots of lamps, doing things on electronics like email or texting or reading on a Kindle, visiting with friends or family and having long conversations--anything that requires you to take light or images or words into your brain, or makes you form words in conversation like talking to family you live with or friends on the phone).

And as these wise people said, it's crucial to remember that you've suffered a severe and serious illness, and so it's important to keep your activity level low, to schedule rest time in your day EVERY day, to cut yourself plenty of slack and forgive yourself for being sick and having limitations at the moment, and to give yourself the blessing of total acceptance--not critiquing yourself no matter how long you've been recuperating or how little you can accomplish on a given day. It's a very challenging thing for someone who worked and played hard, was a high achiever, had a lot of stamina or strength or activity level prior to viral meningitis to surrender to the unique rhythms of our recovery journey, and no matter where we are on the path to healing😍

Keep in mind that meningitis is classified as a brain injury, one that's caused by infection rather than a blow to the head, with the former being just as life-changing, debilitating, painful, disabling, and frightening as the latter. You wouldn't judge or criticize a friend (or even a stranger) that suffered a TBI (traumatic brain injury) in a car accident, or push them beyond their limits too soon, too often, or too much. You would accept them and love them and give them the honor and kindness of accepting them just as they are, just where they are. You would never see them as lesser, as worthless, as deserving of punishment and shame and scorn, and abandon them in their time of need, just when they are suffering the most with fear and self-judgement and frustration and pain. I have no doubt that you would bestow this love freely and naturally and unquestioningly, so why would you deny yourself the same?

A wise friend once gave me life-changing advice that helped me in that very challenging task of "surrendering to the unique rhythms of my recovery no matter where I was on my journey to healing or how long it was taking". I have a service dog that is my doctor, priest, counselor, bodyguard, and best friend all in one incredible little dog😍 I love him more than anything in this world, and would do anything and everything necessary to ensure his health and happiness❤️

So you can imagine that when my friend said to me, "If your dog had viral meningitis, would you force him to do more than he could manage? Would you ignore any signs of pain and force him to work anyway? Would you punish him for sleeping more, walking slower, getting sick after dinner? Would you give up on him and blame him for how long it seems to be taking to recover, berate him for failing to live up to his potential, assuming that because he's "slow" to heal from this illness, he's missed his chance to be extraordinary, to make a mark in this world, to make a difference, to live his purpose, to be a worthy and wonderful being? Must he now be forevermore denied my love, my admiration, my praise, my support, my encouragement and uplifting words and adequate pain relief and healthy food and sufficient rest and good medical care? No? So why is it OK to place yourself under such harsh demands,

[SqueakMouse]

P.S. A few last things that I forgot to mention: If you do have to use your electronics for any length of time, and you happen to have any Apple products like an iPhone iPad, their Night Shift feature has been an immeasurable gift for my poor headache😋.

It's in the Settings app and on the swipe-up window you can access at the bottom of the screen. The feature allows you to change the screen light from cool to warm, along a percentage scale (so you can shift it to just a little Cool or a lot Warm, and you can set a specified time for the phone to do that automatically--say, from 5pm to 7am--and I often just set it at 24 hours, because I can almost hear an instantaneous sigh of relief from my inflamed meninges the moment I switch over to Warm😋).

The feature was created because researchers found that the Cool light keeps people awake longer (even if they are exhausted) because it stimulates the brain and stresses it with the innate brightness of the tone, even if the Brightness setting has been turned way down. If you have extreme headaches (or even one that's less severe), this feature is just wonderful; I can't recommend it enough😍😉

I would also recommend finding some podcasts and/or audiobooks that you can download to your phone; listening to something is less stressful to your eyes and brain, and if you're having a particularly bad day--feeling down, experiencing a lot of pain, drowning in fear or self-criticism or worry, unrelenting fatigue or aching or nausea--having something I look forward to listening to is the most wonderful distraction😋 I try to make an "appointment" with myself and the Universe for a certain amount of time at a certain time a day, and I work hard to avoid skipping it😉. I lie down in a darkened room with an ice pack wrapped in a fleece cloth under my neck (I can wholeheartedly recommend that as well😋; I keep two rectangular medium sized ice packs in the freezer at all times, so I can switch over to a cold one as soon as the one I've been using loses its cold temperature. Somehow having it under my neck soothes the entirety of my brain and spinal cord very reliably and effectively, so much so that I even use that ice pack when I go to sleep at night, and I find that my morning headaches are less severe as a result 😄), and then just close my eyes or cover them with one of those eye marks or a small fleece towel, and try to turn my focus on the words I'm listening to. Much to my amazement, I found that I am often completely absorbed in the story, even if my mind chatter or headache was overwhelming before I started😍

I suppose it's a kind of passive meditation, which has been proven to have measurable and reliable benefits, with positive influences on mood, outlook, pain, and mind chatter, and gives the eyes and the brain a rest from the excessive strain they're under from the inflammation❤️😉

I often try to extend this habit to other activities, such as closing my eyes and listening to a TV program rather than watching it, and closing my eyes when I'm talking on the phone (as long as I'm not driving😋😉). Besides the strain on the eyes and optic nerves (and therefore the brain, which responds to the strained ocular muscles and the effort of processing all the excessive sensory input that keeping one's eyes open invariably requires; there is no sliding scale with regards to the amount of sensory input and the strain it puts on the brain--when the eyes are open the brain is working hard on the processing of sensory input, no matter what you're looking at or not looking at😬).

And it's a simple yet profound fact that listening to stories you like--especially if they are uplifting or inspiring--is good for the soul, and the act of committing to this gift of rest and quiet has powerfully positive effects on for the body, mind, and soul, which creates an ideal environment to heal, inside and out😍😉

In general, light is kryptonite for headaches😳😋, so it's a good idea to wear sunglasses at all times when outdoors, and whenever you're in a particularly bright environment indoors. It's remarkable how beneficial this can be in managing headaches; though we don't notice it because we've been so conditioned to it's existence, it's quite surprising just how often we're in a brightly lit environment, and the strain it puts on your eyes and brain to do so is significant and cumulative. I was pleasantly surprised when I spent a couple days wearing sunglasses virtually 24/7 (but not a pair with lenses that are too terribly dark; you don't want to be walking into walls or off a stairwell like Mr. Magoo🤣).

I know these tips are hardly earth shattering😋😉, but as simple and unimpressive as they are, they're easy to employ and do indeed offer valuable benefits--and when you're dealing with crushing headaches, every little bit of relief is something worth trying😁😉