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Meningitis Now
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3 months post viral meningitis and suffering after effects (sensory overload)

Hi there, I was wondering if anyone has experienced photophobia ( sensitivity to light) phonophobia ( noise intolerance) and difficulty being in a fast paced environment? I was experiencing these symptoms slightly in the beginning and could go outside and cope by wearing sunglasses, but it wasn't until 2 and a half weeks ago they became so extreme I haven't been able to leave my home. I also have a constant stiff neck, pulsating in both ears depending on how my head is positioned, and general feeling of weakness ( no energy to do big tasks) I'm scared these symptoms will never go away as I can't function in day to day life in the outside world with them. Is it temporary? Did you suffer from these symptoms, and if so for how long?

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I am at the same stage post VM as yourself and have had these symptoms since the beginning so am very interested to hear any responses you get. In the third month on good days there was an improvement but I have relapsed and with the headache everything has returned.

Good luck with your post & all the best for your recovery.

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Thank you so much for your response, it is nice to have someone to talk to who is at the same stage you are. Sorry to hear everything returned :( I hope you feel better soon!! Sept 3rd and 4th I was feeling good, had mild photophobia but wasn't having any phonophobia and I wasn't bothered by fast paced movements at all. I went and got my nails done, went to a friends place, went biking in the sun, did some shopping, the next day did some more biking, on one of the hottest days went biking all over town, felt great, just kept my sunglasses on and I was good to go. I had also been exercising that following week.. Then Sept 5th all those symptoms came on really intense and I haven't been able to leave my home since...( Also i have never had a headache since the day I got sick, not until recently I have pulsating in my ears...) I read after to rest alot and stay out of the sun. Maybe I overdid and that's why my symptoms came on so intense... I hope we can stay in contact and track each other's progress and do this together. Keep me posted ♡

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I can't manage a quarter of what you did in one day! I think you definitely overdid it. Problem is it's hard to know when to stop as we're used to doing so much but the next day is a killer. That's what triggered my relapse which I am just improving from now 3 wks on.

I've been reading on here about cranial massage, one to research and try as seems amazing and might help speed up our recovery 😁

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When you say relapse do you mean that is when all the symptoms come back? I have been having photophobia, noise intolerance and can't be in fast paced environments for exactly 3 weeks now, this is the worst and longest it's latest... I have heard about cranial massage I think I may look into that myself. Glad you are seeing some improvement now! Seems like it takes forever.

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Hi,

I am 7 months post VM. My photophobia and noise sensitivity started at the beginning and got alot worse about week 3. I couldn't watch the tv or read a paper or book for 3 months. The photophobia and noise sensitivity reduced on some days but by the 5th month it suddenly got a lot worse. I spoke to my neurologist about it as i cannot withstand artificial light which is tricky at work and when you are shopping. After 5 months I can watch 1 to 2 hours of t.v. maximum. I am on a phased return to work and can cope with 4 to 5 hours on a computer before my brain is totally overloaded. After 7 months whilst my severe head pain and stiff neck are subsiding I am still affected by many neurological after effects. I am seeing a specialist optometrist as you can get special lenses for certain lights. I hope this helps and let's you know you are not alone in this. Hoping things improve for you. Sending best wishes.

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Thank you for sharing your story with me ♡.. I have never had a problem with being able to read or watch t.v , awhile ago i had to wear sunglasses to watch tv but I can watch it now without. Sorry to hear for 3 months you were unable to do those things, I find it challenging enough with being able to read & watch tv , I am very glad I can though because I just can't go outdoors now with all the sounds and commotion, I live in a very busy area. Let me know how your appointment goes and if the lenses helped. It is nice to know I am not alone in this, has been a scary time . Thank you ♡

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Read ur response I’m 3 years post VM, wore prism rx for a year to help me read., sunglasses indoors & out, photosensitive to store lighting , I am wearing a light pink tinted rx glasses for indoor store light glare ,really made a difference as my vision would become blurry. I am ordering pink tint constantly with transitional brown for my new eye glasses. I wore fitovers pink, green, brown, gray to see what color helped different situations. I’m just now figuring this out wish I had read others doing this for light problems.

I did try the crainal therapy, felt wonderful but I had a delayed headache that lasted 3 days, I’m not willing to continue trying to push thru the headache pain. I don’t suffer from headaches and reminds me of having VM. Call me scaredy-cat ! Take care

Sonnerkay

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I'd love to know what lenses help in certain lights as my photophobia is unbearable

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Ok, for store glare lighting I used a rose pink, couldn’t find fit over in pink so used a huge hippie oval shape that fit over my rx glasses ($10) just to see if they helped- it was, amazing! The warm brown tint worked for glare inside my house on bright sunny days, outside I used a darker brown on sunny days. The worst for me is overcast bright, I wear a visor or sun hat & cocoons fitover top, bottom, side enclosed to blockout light. It’s been 3 years since VM , I’m just now driving short distances 2 miles in a <1200 population town.

My Natralpathic dr got me to try 7 mg of thyroid rx, a day! My world has changed drastically, I have energy, I’m the happinesst ive been since VM, I’m my old self, started swimming 10 min with ski belt, walking with hiking sticks. Natralpathic dr stated I was slightly low on thyroid test and VM damages a persons thyroid & hormone function pathways. This may not work for anyone but it sure helped me!

Good luck

Sonnerkay

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Thankyou

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Sorry what is rx short for please

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The fact that lights are so blown out and strong means I can't go out at night as can't wear dark glasses any ideas to get rid of photophobia not a phobia it's real it hurts

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Rx means prescription. I wear prescription eye glasses . I recommend you see a eye doctor, find out what’s going on, yes bright lights bother me, shading with sunglasses, & hats help.But I’m not in extreme pain avoiding going outside because of it. I did quit driving at night & day time for three years . I seen movement (cars) coming at me while in the car, looked like they were in my lane? My vision was affected and it was spooky. My hubby drives.I did avoid noises/places because too much stimulation caused tension & tears, for months. Wore ear plugs to help manage but tried to stay quiet, no tv, no computers, one on one conversations, and spent a lot of alone time in my room. It probably took a year to adapt. I did use lorazepam .5mg to calm my overloaded senses. Wishing u the best in your future .

Sonnerkay

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Hello Sunny308, I am a little over 2 months past my 3rd round of VM of unknown cause and still have photophobia (especially with fluorescent lighting) and phonophobia. Both have been progressively getting better though. I also have pulsing tinnitus (ringing in the ears) but really don't notice it unless it is completely silent (luckily). I use white noise at night to help with sleep. Headaches continue as well. Good luck to you.

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Very glad the photophobia and phonophobia have progressively gotten better for you that gives me hope. As far as headahes I haven't gotten any only mild thumping when I have a bit of a cigarette. I had tinnitus last week for a short while but mostly pulsating in my head or ears. I sleep with a fan on. I find the way my head is positioned either makes the pulsating worse or makes it stop... I hope your headaches go away soon for you ♡ And thank you so much for replying to my post, it's nice to hear back from people who are experiencing the same symptoms and can relate

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I forgot to ask , through your first and second VM round did the photophobia and photophobia eventually just go away?

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I read that photophobia is due to meningeal irritation and neck stiffness is the result of inflamed meninges stretching due to the flexion of the spine

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Do u think massage may help

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Hello Again Sunny, I never had photo or phonophobia with my first 2 rounds of VM. It helps tremendously to have a forum like this to know you're are indeed not alone!

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I have these symptoms mild to moderately except the stiff neck and am month 14. But did have a major relapse a month ago after stress triggered a head virus. However i have just been diagnosed with ME and it appears it had been dormant and then triggered by the viral meningitis and preceding surgery. So in my case it is quite hard to unpick what is causing what symptom as vm after effect list and ME symptom list are very similar.

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Is ME caused by viral meningitis? I was doing some reading on it. Sorry to hear about your relapse I hope you feel better very soon

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It can do, so can other viruses. They seem to think in my case actually it was initially caused by Glandular fever at uni 20 years ago which i appeared to recover from. Buy if that set the bomb, viral meningitis pulled the trigger. Surgery can also trigger ME and i had that too so I had no chance.

Action for ME specifically references viral meningitis.

"Common viral triggers include glandular fever or Epstein-Barr virus (EBV). Other herpes viruses such as herpes simplex, VZV (causes chickenpox/shingles), HHV-6 and CMV, may sometimes trigger M.E., as can viral meningitis or labyrinthitis, commonly caused by enteroviruses, gastroenteritis, Hepatitis A, B and C infection, and in Australia, Ross River virus."

actionforme.org.uk/what-is-...

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Yeah i had it.These were the earlier symptoms of having meningitis. Along with this i had severe headaches.

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You had all those symptoms I mentioned? Did you feel very unwell also? How long did it last?, for me it will be going on 4 weeks in a few days. I'm very scared because their is no improvement and I feel very ill. I thought I was getting better than boom so sick again. No headaches but my head doesn't feel right

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For me it lasted for more than two weeks i tried to tolerate it but atlast meningitis also affected my spinal cord.I got paralyzed and i couldn't walk and urinate.Then my family admitted to an hospital there they took mri and ct scan of my brain.And said it is due to hydrocephalus and to treat that they had placed vp shunt and i was monitored in icu for two weeks then i got well.Please consult a specialist doctor before it gets worse.

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Hi I ended up going to the hospital tonight and had a MRI and blood tests done. MRI came back negative but the doctor said to book an appointment with my home doctor saying it's a viral problem. I told him all the symptoms I was experiencing too. Still don't feel right was hoping to get more answers because I have felt so unwell. He ended up discharging me from the hospital and we didn't do a lumber puncture.

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Hello there Sunny😍❣️ I'm so so sorry you're having such a rough time; the medical professionals say that viral meningitis is benign (and it technically is, compared to bacterial and fungal versions), but that doesn't mean that it can't be terribly disabling, extremely distressing, and quite disruptive as far as your normal activities and abilities go, not to mention the immeasurably upsetting fact that your physical, emotional, and psychological "baseline" (meaning, how you're used to your body feeling/performing/responding in specific circumstances and events, as well as how you normally experience and manage your thought process and your emotions ).

I can definitely empathize, because I've had meningitis more times than I can count (viral and aseptic versions; viral is just like it says--caused by one of countless viruses--and aseptic means inflammation of the meninges caused by a reaction to an irritant, such as medication). So please forgive me😢!--I have to warn you in advance, this is an extremely long post....I swear to you, I didn't mean for this to be even remotely this long when I started typing, but since I've had meningitis so many times over so many years, with so many treatments and medications and procedures and surgeries employed in the effort to heal the infection and manage the symptoms, I've ended up with a lot of experience with both the disease and with what works/doesn't work when treating it😋

I happen to have an immunodeficiency, which makes me both more vulnerable to viral infections, and less capable of fighting them off once I contract them😳. In addition, I don't make antibodies to the zoster virus, so my immune system is very poor at recognizing and addressing VZV, and all the illnesses it can cause, including viral meningitis😢

One of the details that few doctors ever talk about is the fact that meningitis of any type (bacterial, viral, fungal, aseptic) share the same symptoms and presentation, so even though the bacterial and fungal versions are more serious in that they progress very quickly, are extremely difficult to treat/cure, and can have a high fatality rate--and the viral and aseptic versions usually have a good outcome and complete recovery with symptom management and time--all of the meningitis versions can be equally disabling, equally painful, and equally symptomatic; furthermore, these distressing effects and symptoms can take an equally long time to recover, no matter what the cause.

In other words, the fact that you are suffering so much on so many levels is not at all unusual, nor does it mean that the diagnosis is incorrect and you need a spinal tap to confirm it.

In fact, just as you experienced in the ER, spinal taps are often contraindicated for cases of viral meningitis, so long as the more dangerous bacterial and fungal versions of longitude have been inarguably ruled out; since the treatment for viral meningitis is the same with or without the spinal tap (antivirals, rest, symptom management, and time), many doctors choose to forgo that test unless symptoms change or worsen, because the spinal tap itself can cause a brutal headache (which can result in the need for an anesthesiologist to do a procedure called a "blood patch" in order to seal the leak at the puncture site, thereby relieving the headache), which seems especially pointless when treatment won't change regardless😳.

The tests you received at the ER basically ruled out other possible causes of the symptoms you described, particularly stroke, aneurysm, tumor, and encephalitis (which would very likely cause changes in the brain that are significant enough to show up on an MRI), as well as brain infection, vasculitis, systemic infection, and a series of auto-immune conditions (if those were the cause of your symptoms, your blood work probably would have shown things like an elevated white blood cell count--a sign of infection--or elevated inflammatory markers, which can be a sign of many autoimmune processes.

Your ER doctors probably did a basic neurological exam too, to see if the symptoms you're having are affecting your reflexes, vision, motor skills, hearing, temperature and touch sensitivity, balance, swallowing, etc., which will either validate the impression given by the blood work and MRI, or suggest that something else is likely going on, and further tests need to be done in order to diagnose the cause.

Since the doctors ultimately discharged you, it sounds like the results of all those tests and the neurological exam ruled out the aforementioned diagnoses, ruled out the likelihood of bacterial and fungal meningitis, and supported the likelihood of viral meningitis being the cause of your symptoms. That's a good thing, in the sense that life nor limb are being threatened😋--but that's not to say that you aren't feeling extremely poorly, and experiencing some very disabling and distressing symptoms, and that those symptoms might well require weeks to months of time to fully resolve. Remember, viral meningitis can look and feel just as awful as bacterial meningitis, which is very often a fatal disease; in other words, try not to get too down on yourself that you're feeling quite sick for quite a bit of time--that's completely normal, and nothing to be ashamed of or to worry about😍

That being said, it's not any easier to go home feeling just as awful as you did before you went to the ER, and the very thought of feeling this badly for an interminable amount of time feels utterly discouraging at best, and terrifying at worst (quite justifiably, I might add😋!). So I'm deeply sorry that you're having to go through this ordeal; as I said, I've had meningitis more times than I can count, so I empathize with how you must be feeling and thinking😢

However, I did find a silver lining in the experience of all these bouts of meningitis--specifically, what interventions, mindsets, activities, and treatments gave me the best symptom management😋. Every patient is different, and I'm certainly not a medical professional😉, so you should pay close attention to what makes YOU feel better, and disregard the rest😊

The current medical consensus is that viral meningitis will eventually heal on its own with time and rest, and because of that (in addition to the knowledge that viruses cannot be eradicated with a specific medication like bacterial infections can; like the flu, the only thing to do is watch and wait, and address any particularly painful symptoms with whatever makes you most comfortable), most doctors who diagnose you with viral meningitis send you home with the above recommendations, with an order to return to the ER if symptoms worsen and/or change significantly.

If you sought medical attention within three days or so, you might receive an infusion of antivirals (like acyclovir) or a prescription for a PICC (a semi-permanent IV access line that is placed at the hospital, so you can infuse IV antivirals at home for the duration of the treatment period), or most commonly, a prescription for oral antivirals (such as the brand name Valtrex, or the generic valycyclovir). Occasionally the doctors simply recommend ibuprofen (an over the counter anti-inflammatory, in hopes of reducing inflammation of the meninges), aspirin or Tylenol to reduce fever and body aches, and ice packs for your stiff neck and severe headache.

There's one additional possibility I should mention here, which is a treatment that is relatively new and therefore not well known to most medical professionals; however, it's been very promising in multiple drug trials and praised in more and more medical journals. In addition, it's very simple to do and very inexpensive too: Just add the antibiotic called doxycycline to an antiviral like Valtrex. For some reason the combination of the two has been surprisingly effective at preventing relapses of viral illnesses like meningitis or shingles, and if you do happen to suffer a relapse, the literature (and patients' experience) suggests that symptoms won't be as severe or last as long when taking those two medicines together. Furthermore, it has been successful in lessening the symptoms and shortening their duration if you've already contracted meningitis; if your doctor is willing to give it a go, it can't hurt to try😍 Your doctor can look up the published studies to research the medication doses, etc., but the most common amount of doxycycline is 100mg tablets, twice per day.

In reference to your symptoms, everything you listed--as painful and upsetting and dysfunctional as they are--are completely normal for viral meningitis, especially since you just got diagnosed, which suggests that you're early in the disease process. Photophobia, stiff neck, nausea and vomiting, headache, loss of appetite, dizziness, weakness and exhaustion, fever, vision changes, noise sensitivity, hypersensitive skin (like one gets with the flu--the feeling of road rash in the absence of actual road rash😬), sleep disturbances; stumbling and falling; having difficulty engaging in conversation and/or listening to conversation--even if it's watching a TV program--without becoming sleepy; irrationally emotional; confused; "dull"; nauseated; overwhelmed; proprioception difficulties (balance; your body's ability to know where you are in space, and how to correct it if you're off target/out of sync/in danger of falling), and less often--but still possible--things like numbness and tingling in the extremities and/or face; ringing in the ears, tremor; forgetfulness; difficulty remembering things/finding words/retaining information/doing a task, even if you've performed it a thousand times before your illness, etc.

Another important aspect that influences what symptoms you experience, how severe they are, and how long they last is where the inflammation is located in your brain and spinal cord. This is a bigger factor in cases of encephalitis (swelling of the brain/brain tissue itself) than meningitis (inflammation of the membrane covering the brain and spinal cord, as opposed to the brain beneath it), but it can be an issue with meningitis as well, particularly if you have an infection that affects both the meninges and the brain called "meningioencephalitis" (quite the tongue twister😋!, but a most excellent Scrabble word, too😉).

For instance, when I contracted meningioencephalitis last summer, I experienced all the dizziness, disorientation, lack of balance, and tendency to fall as you described in your post (and I'm so so sorry that you've been going through that; it's a super scary experience, and it makes the most basic tasks--standing upright, walking down a hallway, getting dressed--extremely challenging, and more than occasionally dangerous😬).

With further testing, the doctors discovered that the infection/swelling was localized in the cerebellum, a part of the brain between the two hemispheres that controls balance, stability, knowing where your body is in space, coordination, accuracy of movement, and how the limbs are positioned.

For that reason, I experienced the above symptoms at the same time as the headache, fever, stiff neck, and nausea that is more commonly associated with meningitis. In fact, the unsteady gait and lack of coordination (called "ataxia") is typical of problems in the cerebellum, so

it was a significant clue that the meningitis I'd been diagnosed with at the time was either a rather unique and very severe case, or something else was going on in addition to the meningitis (in my case, it was encephalitis combined with meningitis). But again, it's not uncommon to experience ataxia, balance and coordination problems, etc. with a case of viral meningitis, with or without other brain issues.

(FYI: There is an Ataxia group on this site if you feel like you'd be interested in chatting with other patients who share that experience. Many of them have been diagnosed with what my doctor called a "pure Ataxia" (Ataxia as a primary disease rather than a symptom of another illness); however, since they experience very similar symptoms, it offers a wonderful opportunity to connect with people who know what you're going through, and can give you guidance, instruction, and ncoping techniques that aren't commonly found in textbooks😍)

You might notice that every symptom I just listed is also a symptom of a TBI (traumatic brain injury), and that's absolutely true; you might not have hit your head or injured your brain, but both conditions can involve inflammation (in the case of viral meningitis, it's inflammation/irritation of the meninges, which is a membrane around the brain and spinal cord), and therefore, both conditions can have a similar presentation and cause similar problems and symptoms.

The reason I mention this is because many people (doctors, patients, friends, and family alike) understand, recommend, and even insist upon resting the brain and body after a TBI, and to accept that progress may be slow and erratic, with large fluctuations in symptoms and abilities from week to week, day to day, or even minute by minute. These characteristics of a TBI (and recovery from them) are well known and widely accepted, so the patient doesn't often feel shame, self-recrimination, denial, and/or the need to push oneself beyond their capabilities because they "shouldn't" be feeling this way/feeling this way for so long/doing so poorly/not feeling up to past activities like school, sports, socializing, or even getting out of bed, changing out of pajamas, leaving the house, turning on the lights, carrying on a conversation with housemates , cooking a meal, doing anything that uses large amounts of brain activity like reading, watching TV, having a conversation, studying, doing a hobby that requires focus and fine motor skills like painting or sewing, etc.

That previous sentence is extra important, because many things "use a lot of brain activity", even (perhaps especially) the things you used to do on autopilot before your illness. Therefore, we viral meningitis patients often think along the lines of, "What's wrong with me, why am I so tired? And why are my symptoms worse? All

I did was lay around all day, I never even left the house! I must be unacceptably lazy; that makes me so ashamed. So tomorrow I'm going to force myself to get up early, get dressed, get out of the house and do grocery shopping, and maybe clean the kitchen when I get back--it's an intolerable mess!"🤣

But our brains are like cell phones--powerful computers that only carry a limited amount of battery life. And whenever that energy runs out, it's dead. Unusable. Incapable of any activity whatsoever. Depending upon the specs of the phone itself and what you do with it throughout the day, the battery will drain quickly or slowly anywhere in between--but regardless, that phone WILL die if it's not charged regularly, or only used lightly throughout the day.

The problem is, EVERYTHING uses energy, so everything drains the battery to some extent. That includes breathing, sitting up, composing a text, answering the phone, getting dressed, or walking from your bed to your closet--all things that you did on autopilot before you got sick, without any trouble or any awareness of fatigue whatsoever. But meningitis causes you to be hyper aware of just how much battery life each of those seemingly insignificant activities cost (so just imagine the drain that "bigger" things like going out with friends , talking on the phone for a long while, holding down a job, driving in heavy traffic, etc. might be😳).

I know this part of the illness feels particularly unfair, upsetting, limiting, and infuriatingly long-lasting; when you have been a high achiever, a "go-getter", a social butterfly, the life of the party, and in love with the world and everything and everyone in it--and unused to anything limiting your ability to engage in these things, or to make you worry that you might never be able to do these things in future. And you would be right--it IS unfair. And seemingly unending. And discouraging, upsetting, heartbreaking, confusing, and worrying. I myself have been bedridden for most of the summer (partly due to the "meningioencephalitis", and a few other unfortunate medical issues😳), so I can empathize; the job and friends and hobbies I once loved are beyond reach at the moment, and that's been devastating, especially since I don't know for sure when I'll be recovered enough to get my life back , and to feel healthy when I do😊

But one thing I DO know for sure is that YOU will most DEFINITELY get back to your life as you once knew it, and that you'll ABSOLUTELY be healthy and happy when you do😍. Since you didn't mention any other medical issues, I'm going on the assumption that you do not have any "comorbid conditions" (medical-speak for "other illnesses occurring at the same time😋) with your viral meningitis, so we can be confident that once that infection heals, you'll be as good as new😉

But it order to do that--and to do that as quickly and comfortably as possible--you're gonna have to embrace a counterintuitive idea, and that is: The slower you drive, the faster you'll arrive😂 Corny, but true😋 And also very simple. All that means is that from the moment you open your eyes in the morning to the time you go to bed at night, your only job is to preserve as much battery life as possible. It will be hard at first (for instance, you'll notice you've been ruminating on worries for quite a long time before you became aware of what you were doing--and since the computer that is your brain uses a lot of energy to think, and most especially to worry, you're going to have to sacrifice some other battery drainers later in the day in order to finish it with energy to spare, rather than overdrawing it as you might be tempted to/used to doing😋 That might look like limiting yourself to two episodes of a Netflix series instead of binging on the whole thing, or ordering takeout to be delivered to your door rather than preparing a meal yourself😊

There is a wonderful website/international group called "Spoonies", and their main page explains this concept much better than I can (it's well worth a Google search or two😉). The basic idea is that we're all given a handful of "spoons" at the beginning of the day--some folks get fewer spoons than others, like for example, an illness or disability--and you need to give one spoon (or more, depending upon the activity and the expenditure of energy that each one requires) in order to go through your day. For instance, you might wake up tomorrow morning knowing you're going to a friend's birthday party that night, which will cost you twenty spoons. Since you only have thirty each day (because you're ill; when you were healthy, you had 60 spoons at your disposal every day), you're going to have to plan very carefully, or you'll overdraw your spoon account and have to cancel your party plans.

So you go through the list in your head: Shower, 8 points. Getting dressed, 3 points. Engaging in a minor disagreement with your Mom as you're going out to your car, because she's worried you're still too sick to go anywhere, much less a party, 3 points. 6 points left. You still need to drive to the party (2 points), do your hair (2 points), walk the dog (1 point), walk up the stairs/change into pajamas/get in bed after the party, 3 points.

As you can see, if you do all of those things, you've overdrawn your account--and you will have to pay a price for that, which could be anything from increased headache to double vision to worsened dizziness, or all of these at once😢. You've got two choices: Either engage in all the activities you want/need to do, and accept the "punishment" that results from overdrawing your "account". Or scan your list of things to do and prioritize , settling on those things that you need/want most. In the above case, walking the dog and driving to the party are non/negotiable; you absolutely have to do those.

So the question is: What activity on that list can you eliminate or do without, which will keep you under the line that represents an empty battery? Say you decide that eliminating "Doing your hair" wouldn't be that difficult; a ponytail would do just fine, and also save you two points.

Now you're done, with one point left to spare--so you can go about your day doing the things on your list, knowing that you're successfully protecting your allotment of energy (and therefore your brain/meninges, and leaving it sufficient fuel to heal).

In addition, you can do a few things that put extra points/energy IN your "bank"--rather like charging your phone by plugging it in to an outlet. These include napping, meditating, petting your dog or cat, taking a bath, going for a short walk, listening to your favorite music, eating a nourishing meal or snack, etc. Sleep is the number one "point getter" on this list😋; with viral meningitis, there is no such thing as too much sleep.

That's because the "itis" in "meningitis" means "inflamed", which signals the fact that the meninges around your brain and spinal cord are irritated, swollen, and sore. So it's important to do what you can to calm things down, to relax/rest/restore, and to comfort or soothe your mind and body in whatever way works best for you.

For instance, your photophobia brings to mind images of excessive brightness, resulting in increased pain in your head, blurred vision, squinting your eyes to lessen the amount of light getting in and causing you pain, shielding yourself with your hands or a blanket to block out the harsh, hot, blinding rays.

That whole paragraph reads as "painful, hot, off-putting, disabling". Therefore, your body is telling you that it needs quiet, coolness, darkness, calm, protection. And by the way: Self-criticism is "hot" and "painful" (you know how when we're ashamed, our face goes red and our cheeks burn and we want to fall through a hole in the floor and disappear😋? That sensation of pain/heat/burning and the impulse to retreat/protect oneself is a clear example of a "hot/inflamed" circumstance, which means it is not useful for healing your viral meningitis--and in fact, since it further irritates your already inflamed meninges, it's causing even more pain and more irritation and more swelling and therefore increasingly worse symptoms, and prolonging your recovery.

But by deliberately letting go of those behaviors and habits the moment you notice them, you help create the ideal conditions for your brain to heal. It might take practice, but learning to take it very very easy, and taking it even easier when you notice the slightest increase in pain/fatigue/weakness/etc. (and equally important, giving yourself positive support, especially in response to any self-doubt or self-judgement, e.g., "Even if it seems like I'm not making progress as quickly as I'd like or as well as I should, I choose to trust that I'm recovering at the perfect pace for me"; "Even though I can't see or feel the proof yet, I'm confident that my meninges are healing more and more with each passing day"; "Although it's hard for me to rest and relax, I'm willing to try"; "I don't have to be perfect in order to heal perfectly; my body knows exactly what to do in order to recover, and it's doing it now"; "I was born with healthy meninges and grew up with healthy meninges, so perfect health is their default mode; therefore, I don't have to do anything but rest, which will provide the space for my meninges to reclaim the perfect health they are programmed to have"😋. These are just suggestions off the top of my head; feel free to use statements that resonate most with you😄

A few more tips that you might want to try:

(1) Again, I'm not a medical professional, so I certainly can't diagnose anyone or recommend any specific treatment or medication; I can only speak from experience, which has grown quite extensive now that I've had 20-plus bouts of meningitis, and several more of meningioencephalitis😬

The anti-viral/antibiotic combination I mentioned earlier (specifically, Valtrex and doxycycline; FYI: In my experience--and that of many other patients--though it's not always the case, the brand name is more effective in this instance than the generic) is prescribed to treat the virus causing the symptoms, either in times of active infection (to address a current illness) or in between active infections, when the virus isn't activated (to prevent future infections, particularly in a patient who is immunosupressed or has a history of or a tendency towards regular activation of the virus, and therefore repeated active infections). I don't know your history so I can't say whether or not a prophylactic protocol of daily Valtrex and doxycycline would be beneficial for you, but just in case you are a candidate for preventative treatment, I wanted you to know about this unique drug combination, and its good reputation for healing stubborn viral infections (including but not limited to meningitis, especially those cases caused by the zoster virus) and preventing recurrences in immunologically vulnerable patients. As I mentioned earlier, it's not yet a widely known treatment; however, it has been featured in several impressive published studies, and I know from personal experience how truly effective these medications can be😍

(2) I always say that once you've had a spinal headache, you will never ever EVER fail to recognize one when it shows up😋. It's unlike any other type of headache, regardless of severity; unlike tension headaches or even migraines, the entirety of one's brain and spinal cord with a constant, pervasive, all-encompassing ache, and characterized by such severe pain that no anti-inflammatory, aspirin, migraine drug, or narcotic so much as touches it😬. Therefore, the experience of contracting meningitis--already disabling and distressing enough--is made that much worse by the fact that you're drowning in unrelenting pain 24/7, for at least ten days (the short end of the duration spectrum); in addition, the pain makes you so nauseated that you can't eat, so light sensitive that you spend all your time in a darkened room, and so desperate that you can't focus on anything on the agony in your head, and simply curl up in your dark room and cry😳. With pain like that, even a small amount of relief is a blessing; unfortunately, none of the aforementioned options do much good, so we're more or less doomed to suffer until the illness runs its course. However, my doctor and I stumbled across a very effective, very inexpensive medication while we were trying to manage some troublesome IV side effects--in my experience (and I've been on it for over a year, each time I have an infusion or contract meningitis), it is the only thing that can manage the pain of a spinal headache, and the only thing that manages it reliably, significantly, and quickly. It's a steroid called Decadron (occasionally the nurses use IV SoluMedrol for infusions), and it comes in IV as well as oral form, so you can take it at home as easily as getting a shot at your doctor's office. Just thought I'd share that with you, since it's so distressing and difficult to be crippled with such a vicious headache, and have nothing on hand (even the traditional options like aspirin, Tylenol, Advil, migraine medicines, and/or narcotics) to manage the pain😢 In my experience, starting the Decadron the moment that unique spinal headache and fever begins; it's so effective that I can get by with a very low dose, and can even skip a few doses and only take it as needed, as opposed to the round-the-clock dosage that other less effective medicines😄 It's particularly effective when combined with Benadryl (also available in both IV and oral form, with the tablets available over the counter), even at the average--and relatively low--dose of 50mg.

(3) As you probably know quite well by now (thanks to firsthand experience😮), those spinal headaches can cause such severe pain that sleep is impossible, sometimes for days or weeks on end--something that is hardly conducive to healing, and often serves to magnify pain, fever, and fatigue. Surprisingly, one of the most effective treatments for this problem is ice packs--many many ice packs😉. It's a seemingly primitive treatment, but there's a reason why it's still widely and consistently recommended: It works😋. I make sure to prepare at least four of medium to large size (about the size and shape of a standard letter), and preferably relatively flat (and ideally, more or less solid, made of gel or some other substance that can freeze without lumps or malleable like a bag of ice chips; those melt too quickly, and are uncomfortable to lie down on, which defeats the purpose😮). I use one ice pack under my neck, one under my mid back between my shoulder blades, one under the back of my head, and one over my forehead or over my eyes (I wrap each of these packs on a thin towel so the cold doesn't burn my skin, but he towel isn't so thick that it prevents any cold from getting through). I do this every night throughout the duration of any meningitis infection, and it's one of the few things that soothes the pain and fever enough to let me sleep😋

(4) Most people only get meningitis once in a lifetime (if even that ), but a few end up getting it repeatedly, for a variety of reasons. One of those reasons is exposure to and infection with a virus (viral meningitis), as it sounds like you're experiencing. Another is a reaction to an irritant (aseptic meningitis), usually medications or a class of medications.

Since all forms of meningitis share many symptoms and tend to present in very similar ways, it's very hard to discern the difference between viral and aseptic meningitis unless a spinal tap is done. But if you happen to experience another bout of meningitis, it would be worth your while to think back to the day before you fell ill, as well as the day symptoms first appeared. Firstly, you're looking to record any and all medications you took in the 48 hours before symptoms began, including any you take regularly and those that may have been newly prescribed. Be especially careful to write down any medicine you took during that time that you either never had before, or had taken in the past without obvious side effects. The most likely culprit is any medicine you took that you've never had before, and that you took very close to the time your symptoms began--especially if you notice that there is a pattern, i.e., each time you developed meningitis, you happened to take Drug "A" within hours to a day before your symptoms started. However, it's not uncommon for a medicine you've taken for years without adverse effect to suddenly become toxic to your system, and your body's response to the irritant is an inflammation of the meninges. Depending upon your unique make-up, as well as the unique formulary of the medication, it's possible that you're either "allergic" to the main ingredient/active ingredient of the drug, or you're reacting to what they call "excipients", which are more or less the fillers, coatings, capsules, and dyes that every medication has in greater or lesser amounts. That can be the reason why a drug that you've always done well with--say, Tylenol--suddenly triggers aseptic meningitis every time you take it; often you come to discover that the manufacturer changed the delivery system (putting the medicine in a capsule rather than a pill, which means there are ingredients included in the gel that forms the capsule that were not in the formulary of the pill form--and unfortunately, there is something in that capsule gel that your immune system is reacting to, so

If you want to stop getting meningitis, you're going to have to stay away from Tylenol capsules), or the pharmacist gave you the generic form this time because your insurance company refused to cover the brand name like it used to, and the company that makes the generic uses an excipient that the brand name doesn't have.

The reason this is important is because there's not much you can do to protect yourself from three of the four main forms of meningitis; beyond basic hygiene and common sense protection measures (and in the case of bacterial meningitis, getting a vaccine; if you're someone who gets viral meningitis easily/regularly, you can take the prophylactic protocol I described earlier, which includes daily doses of the antiviral Valtrex and the antibiotic Doxycycline), you can't really protect yourself from a rogue virus, bacteria, or fungus.

However, aseptic meningitis is often avoidable, if you are lucky enough to have a specific trigger, and to correctly identify the trigger. It's the difference between taking an aspirin that you're highly reactive to--so you develop aseptic meningitis--and choosing to take a steroid instead, because you know you're allergic to the active ingredient in aspirin, and avoiding getting sick in the first place😍 There are several excellent websites that list every ingredient in thousands of medications, foods, and drinks; just type "dictionary of excipients in medications" or "dictionary of excipients in fast food products", etc. in your search engine. As you look through all the lists and note which items you have reactions to, circle any ingredients that those items have in common; you might well discover that it's a specific dye you're allergic to and not so much the drug itself.

In that case, you can search that excipients list for a form of the drug that doesn't contain that toxic dye; if there aren't any such options, your doctor can write a prescription for a compounding pharmacy to make the medication without that excipients specifically for you; there are many of them in the metro area.

If you can't get the medication compounded without the excipients (say, because it's an IV medicine) but need the drug for an important reason, there are some things you can try to ward off a meningitis outbreak--primarily, it includes a pre-med protocol of Benadryl and Decadron, with more doses of Benadryl every few hours for as long as you're taking the offending medication.

If you discover that your current case of meningitis was likely caused by a medication (and therefore a manifestation of aseptic meningitis rather than viral meningitis), treatment with antivirals, antibiotics, or antifungals won't be of any help, so don't worry about taking those. In order to address the pain and reduce inflammation, it's best to consult your doctor about taking a steroid (either as needed or on a schedule), Benadryl (ideally the dye free version), and Tylenol (if you're not reacting to it). My doctor has also prescribed an anti-emetic medication to take as needed to address any nausea that accompanies the meningitis at its worst.

I have to get immunoglobulin IV's every week due to my immunodeficiency, but I'm unfortunately allergic to them, so unfortunately, I get a new case of aseptic meningitis every week, with no way to avoid it😳. It was agonizing and exhausting, until my doctor put me on the above protocol; while I still get meningitis (and the associated symptoms), they are not as severe as they once were, and I am able to address the worst of the pain with small doses of as needed oral Decadron--something I'm inexpressibly grateful for, as I no longer have to go to the ER every week for spinal taps and symptom management, or get stuck at home in the misery of unmanaged pain, fever, and nausea☺️

(5). One last recommendation: If you and your doctor do determine that you're currently suffering from an aseptic version of meningitis, and/or vulnerable to multiple cases of it in the future, it's a good idea to get a prescription for an Epi-Pen. Sometimes you get exposed to irritants you didn't know you were allergic to--and therefore didn't know to avoid coming into contact with it--and it's always possible for the reaction to be severe, and you don't want to be in that situation while you're home by yourself, or without life-saving supplies😉

Also, if you determine that you're allergic to a specific medication, it's important to be very cautious with all the drugs in its class, unless and until you're able to rule them out as potential allergens. For instance, I was able to take NSAIDS (non steroidal anti-inflammatories, such as Advil and aspirin) all my life with no issues, until I suddenly became violently ill from baby aspirin last year. And even though other drugs in that class (like ibuprofen) used different active ingredients and even different dyes/excipients, I still developed aseptic meningitis from every NSAID I took😬.

This is a particularly important tip, because doctors and hospitals often recommend taking ibuprofen or aspirin as needed when you present with meningitis, in order to address pain and inflammation; however, if you happen to be one of the patients who are allergic to NSAIDS, you'd be aggravating and prolonging the symptoms every time you took the medicine--getting sicker and sicker with each passing day, and feeling worse and worse with each additional dose😬

All that being said, based upon my own personal experience with meningitis, I would recommend making that appointment with your primary care physician as the ER doctor recommended. If you have viral meningitis as the hospital suggested (the other possibility is the aseptic form, for while there are indeed two other versions of meningitis--bacterial and fungal--they progress so fast and cause such severe and widespread damage that you'd be very very sick by now, and confined to the ICU😲; thankfully, you're not showing any signs of such severe and sudden decline, though you are experiencing the classic diagnostic signs of all forms of meningitis--stiff neck, fever, headache--which taken together suggests that while the likelihood of your having bacterial or fungal meningitis is extremely remote, it is highly likely that you have viral meningitis, or aseptic meningitis as a secondary possibility), he or she won't be able to do anything different for you than the hospital did; rest and time are the cure for both viral and aseptic meningitis. However, you could ask about trying a course of antivirals (with or without doxycycline; your doctor will know if it's something they think would be a good fit for you); it can't hurt (it'll either help or do nothing; either way, you're no worse off😋). You can always get Benadryl over the counter if you and your doctor want to try that, or your doctor could prescribe an anti-nausea drug and a steroid for you to take as needed, so you can better manage your symptoms at home, and thereby stay home from the hospital😉.

If your symptoms get unbearable at home (as untreated meningitis headaches often can), your only chance at relief is to go to the ER--but since they can't do anything for you there but manage your symptoms for a few hours and then send you home (and ultimately putting you right back where you started, in pain with nothing to alleviate your symptoms; it's a vicious cycle, and I've been in it myself too many times to count, so I can't say I'd ever recommend it😉), you're no better off for all the energy and expense you had to spend😳

Once you have those "as needed" meds on hand, your only job is to hibernate for at least a week (the worst symptoms of viral meningitis usually run their course in 10-14 days, with aseptic meningitis resolving a little bit faster so long as the offending substance had been identified and completely avoided); usually you feel so sick, dizzy, and exhausted that you have no desire to move off the couch for 10-14 days anyway😋, so you're not really at risk for doing too much too soon😉.

Even if you have viral meningitis and your doctor decided not to prescribe antivirals, your body can and will be able to heal regardless; antivirals can speed recovery by two or three days, but not always--and your own immune system will do the job anyway, so long as you don't have an immunodeficiency (which you didn't mention, so I'm assuming you don't?😍).

Just as a head's up (and as reassurance😍): While the worst of the symptoms do indeed retreat within 10-14 days on average, they don't normally resolve in totality for another few weeks. In addition, some of the "lesser" symptoms (fatigue, trouble processing words, conversations, and fast moving pictures like TV shows, cell phone screens, computer programs, etc.) will take longer to resolve--several weeks to several months. I know that sounds scary, and I wish I could tell you that you'll be fully recovered and feeling bright eyed and bushy tailed on Day 10😋, I don't want you to be worried or discouraged if you're feeling better but not necessarily healed on Day 30.

So try to be very very gentle with yourself for the next few months. Sleep as often as you can. Put aside Netflix and TV and that new book you're wanting to read for at least two weeks; if you are so bored that you have to turn on the TV, maybe close your eyes and just listen to the program...if you're watching something on your iPad or laptop or cell phone, turn the screen brightness way down, and consider turning on the warm light option 24/7, instead of only at night. Keep the blinds closed for at least the first week; keep any fluorescent lights off if possible, and use as few natural light fixtures as possible. Tell friends and family (via email or text) that you have meningitis and it's doctors orders that you stay off the phone, avoid texting and email, and stay home from social activities/limit work hours or stay home from work if possible, so they should know that you won't be available for the next week or two, and you'll reach out to them when you're stronger (if you try to do these things too soon, you'll "overwhelm your circuits" so to speak, and set your progress back a few days--not to mention worsen your symptoms and cause yourself unnecessary suffering😢

You'll have bad days and good days, and more bad than good if you push yourself too hard too soon😬 Expect to get a throbbing headache when watching TV or reading. Don't worry about (mildly) blurred or double vision; that's normal, and worsens with fatigue, but resolves with time. You might cry for no reason, snap at someone for no reason, forget your own birthday or call your sister by the wrong name--all normal, and all will resolve with time😄. You might feel sick at the mere thought of any food but Twizzlers, or crave every item on the menu at Domino's; all normal, give in to your body and trust it's wisdom, and eat what you crave and ignore what you don't--you can regain any weight you lose or lose any weight you gain after you've recovered, but for now your top priority is to nurture yourself body, mind, and soul😄. No driving, important decisions, life changing issues, etc. until at least two weeks have gone by--longer if you're still feeling wobbly😋 (if you absolutely have to do one of those things, ask a trusted friend or family member to accompany and supervise you. It's more important than you know; the last time I had meningitis, I myself gave more money than I had to an animal charity during a fund drive; I was thinking I wrote a certain number on the check, and I did--but I actually wrote the number with two extra zeros on the end, which was three more zeros than I could afford😬🤣 I had no idea that I'd made any mistake at all--and no memory of the call or the donation within a half hour of hanging up the phone😋😉. Viral meningitis is no joke, that's for sure😍u

Know that any tremors, ataxia, dizziness, and poor coordination are normal--albeit disabling and disturbing--and they will resolve with time and rest. While you're waiting for that to happen, give yourself some supportive measures--inexpensive canes, shower chairs, temporary shower bars, and walkers can be purchased at any grocery store or pharmacy, and can really be a blessing in the early days of your illness, when you're feeling most unsteady and insecure. You won't need them forever, they are just a means of helping you get around without risk or fear of falling; you've got enough on your plate without having injuries from a fall to deal with too😉

If you can't get assistive supplies (or just don't think you'll need them), make a plan for how you'll deal with dizziness or instability; maybe commit to lying on the floor on your back the moment you feel faint or dizzy, until you feel grounded again; map out routes from room to room that allows you to grip a wall or furniture each step of the way, so you can support yourself if you feel dizzy. Have a friend or family member build you a little "fort" both by your bed and on the couch near your TV--meaning, buy doubles of all the supplies you would need (medicines, food, snacks, water bottles, blanket, pillow, wet wipes, ice packs, heating pad, phone charger and cord, electronics, portable speaker, notepad, pen and pencils, fuzzy socks or slippers, phone, flashlight, books or ideally audiobooks, wallet or piece of paper with insurance information and credit card details on it, list of emergency contacts and their phone numbers; a piece of paper for paramedics (should you need to go to the hospital) listing your current diagnosis/current medications/primary care doctor and anyone treating you for meningitis/phone number for emergency contact/preferences for any pets--who to call about picking them up or taking care of them, what food they eat and where it's kept, veterinary contact info/etc.). Having two "forts" set up with doubles of these items is really useful when you have meningitis, so if you're dizzy for a whole day and get nauseous the second you sit up, you don't have to (a) Crawl across the floor to get to something you really need, like medicine or water; or (b) Try to walk there in your dizzy state, and end up passing out and injuring yourself on a piece of furniture😮😉 Believe me, it's not so unlikely as you might think; I learned that the hard way😉

Okey-dokey, that's all the meningitis info I can think of😋--I hope it's helpful to you😍. I'm really really sorry this is so long😬!; goodness, I've been writing all day😳. But like I said, I have a lot of experience with this disease, so I not only learned a bunch of "To Do" and "Not To Do" tips, but I know how scared and sick you feel in the midst of it😢 If you have any questions or need any help, please don't hesitate to ask😍. In the meantime, I wish you the best of luck, and a speedy recovery😉

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Hi SqueakMouse,

Thank you for taking the time and goodness knows how many spoons of energy to post your info and experience. I’m sure I’m not alone in being both grateful and amazed. VM is not my personal experience, as my diagnosis was septic shock due to Neisseria meningitidis w-7262 (a bacterial meningitis,) but there is much I have learned from you that I might take comfort from and, perhaps, be able to further disseminate.)

I hope you don’t mind that I have saved a copy for reference (as “SqueakMouse’s brilliant, epic post on ViralMeningitis.”) 🤓👍

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Thank you so much for your response!! I would write back alot but it's hard. I appreciate every word and it was very helpful. I was wondering if these symptoms are normal 2 months after, cause I seemed to be getting better after the first time I went to hospital on July 8th and was told it's a virus, go home and rest. After a week or so I was back outdoors shopping and continuing life even tho I didn't feel normal and then Sept 5th boom symptoms intensified and I couldn't leave home, is that normal? Cause I just started getting worse and different symptoms arouse. It's just crazy how you seem to be doing better and fairly normal than 2 months later extremely sick. I have been at home with symptoms for exactly a month, it's unbearable. I have no appetite the last few days now too.

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Hello there Sunny❣️. I'm so very sorry for the delay in replying to your text; apparently it got misrouted somehow, so I had no idea you'd written until Gnugoo was kind enough to inform me of the error😬😋

First and foremost, I'm deeply sorry that you're experiencing such severe symptoms again--a single bout of viral meningitis is more than enough for any one poor soul to have to endure, much less several😬😋! So I would be more than happy to try and do everything in my power to try and get you feeling better😉; alas, I don't have a magic wand or medical expertise to manifest a full and instantaneous healing (though I most certainly would if I could, believe me😋; as I mentioned in my initial post, I've been diagnosed with meningitis enough times to be all too familiar with the experience, so I empathize with the depth of your suffering, and wish with all my heart that I could spare you from it😢), but hopefully some ideas or information I share with you will soothe and sustain your soul while you're waiting for your body to recover its strength😍

But before I try to answer the questions you put forward in your note, I just want to clarify a few details, so I can be sure to give you the most helpful, accurate, and specific information possible😉.

First of all, my understanding is that you first became ill in July; got diagnosed with a viral illness in the ER on July 8th and were sent home to recover; felt slightly better over the next few weeks but never returned to your normal baseline; experienced what felt like a relapse on Sept.5th, and have been going downhill ever since, with no improvement whatsoever--and in fact, your symptoms (including some completely new ones, in addition to those that began in July) are worse than ever.

Do I have that timeline correct?

If so, I have a few more questions based upon that timeline. You don't have to get super detailed with your answers; I know you're feeling awful, and I don't want to overextending yourself😮 Just a brief summary would be really helpful😉

Were you completely healthy up to that day in July when you first noticed symptoms (or at least, were you free of any symptoms similar to those you developed in July)?

What are the primary symptoms you've experienced?

When you left the ER, did they give you a specific diagnosis of "viral meningitis", or did they put it under the umbrella term "viral illness", or did they write some other description entirely?

When you say that "after a week or so" (from your ER visit) you were "back outdoors...but still didn't feel normal", what symptoms temporarily improved?

What symptoms lingered, which kept you from feeling normal?

On Sept. 5th, did things suddenly get much worse, or was the worsening more gradual? What symptoms got worse? What are the "different symptoms that arose" you mentioned?

With the recent loss of appetite, etc., would you say you are worse today than on Sept. 5th? Than on July 8th?

Have you seen any medical professionals since the ER visit in July?

Any medications prescribed for this illness specifically, from the onset of symptoms until now? (And if so, did any of them help at all? Make you worse? No benefit?)

Lastly, which of the most common meningitis symptoms have you been experiencing (stiff neck; fever; photophobia; severe headache; nausea; fatigue; body aches; difficulty concentrating; memory/focus/processing problems; etc.), and which ones are the most long lasting (since July), and/or the most severe?

If you aren't up to answering any of these, don't worry one second about it😍; I can certainly share my own experiences (and my impression of what's going on with you, based upon those experiences) without needing anything more than the information you've already posted😋

In answer to your primary question, it is indeed normal to experience viral meningitis symptoms quite long after diagnosis, and even beyond the "10-14 days" that is commonly quoted as the "average duration" of symptoms. I've seen many cases where people have severe symptoms for up to three months, with lingering issues for three months more😬 Most patients, though, fall somewhere between two weeks and three months.

And in my experience, it's more common than not for symptoms to "wax and wane" (in other words, to "take two steps forward and one step back"😉) for weeks to months before you return to your "normal" state of being, so the details you've described are not unusual at all; in fact, I'd say they are more common than not😮

As I'll describe in my next post, there are lots of factors to consider when determining the most accurate answers to these questions, such as: whether or not you have an immunodeficiency; whether or not you're "burning the candle at both ends" (living a harried life, with lots of stress and worry, but not enough good nutrition and sleep and supportive relationships); whether or not you were correctly diagnosed early in the disease process, and given effective treatment early in the disease process; whether or not you're a "good patient" (making it a priority to rest and nurture yourself for the duration of your symptoms) while you're recovering, etc.

I can give you more detail after I hear a bit more about your current experience, but I wanted you to know that information from the outset, so you don't have to be living in dread, doubt, or discouragement😋

I hope and pray that you've been feeling at least a bit better over the last 48hrs. (and if not, that you've at least remained stable😍), and that you're able to get adequate rest and supportive care while you're recuperating😋 You'll be in my prayers for sure😍, and I'm looking forward to hearing from you so I can give you as much helpful information as I can ASAP😋

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I'm going to get a friend to reply to this soon. In the meantime i am terrified i might have ME

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Dear Gnugoo😍❣️. I forgot to mention in my earlier note how grateful I was to receive this other post of yours as well😋; it is one of the kindest, most thoughtful, and most deeply touching messages I have ever read, and I feel immeasurably blessed to have received it❤️ Your words were particularly meaningful because I have spent the time since my initial post recovering from a recent IV--or more specifically, the resulting aseptic meningitis 😳--which has allowed me lots of time to second-guess everything I wrote ("Oh my goodness, why didn't I do a better job proof-reading before I sent this? And why oh why did I write such an endlessly long post?--no doubt it will serve as an excellent cure for meningitis, because it will put people to sleep😋!"), and therefore to worry repeatedly whether I'd actually made things worse instead of better for any fellow meningitis sufferers who were brave enough to try to read it😬 So I really REALLY appreciated the time and effort you took to let me know that at least some of my ramblings were useful😍

But I was so SO sorry to hear that you've endured both bacterial meningitis and septic shock😳--I've only experienced the latter of the two, and that was bad enough😢!

However, I don't have to have had bacterial meningitis to be aware of how dangerous it is, or to know how rare it is for someone to not only survive it, but to survive it with enough faculties sufficiently intact to write as beautifully and humorously and eloquently as you do😍. I am inexpressibly sorry that you had to go through such a devastating experience, and so grateful that you had the strength and courage and good fortune to come through it😊--clearly you are not only a force for good in this world, but the world needs more of the good you have to offer❤️😍❤️

And if a portion of that good happens to involve disseminating my post as you hypothesized😋, please feel 110% free to do so😍😉 (and of course of course OF COURSE, feel 110% free to save a copy for reference as well😍--though I have to say that I am equal parts embarrassed, humbled, and grateful for the "brilliant/epic" label😋😉).

Best wishes for continued health and healing to you, Gnugoo😍❣️ If there's ever anything at all that I can do to be of assistance or support, please don't hesitate to write--I would be honored and delighted to share whatever experience, advice, or suggestions regarding meningitis that I've accumulated throughout my many run-ins with it😉

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Hi SqueakMouse,

Sunny accidentally replied to my post instead of yours, so you may not have been notified. Please see above post about feeling awful after 2 months of feeling reasonably well. I can’t comment as I’ve not had VM, or 2 months yet. 🤓

Cheers

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Hi there Gnugoo😍❣️❣️ Thank you so very much for your note😋!; you are correct, I had not been notified about Sunny's post, so I'm extremely grateful for the time and trouble you took to notify me about the update😉 Cheers and best wishes to you as well❤️😍❤️😍❤️😍❣️

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Wow, I have never read a more in depth description or solutions/ options that may help with VM, or other causes. This is the best knowledge out there compiled, to help all of us suffering now or in the past. First hand u sound like ur managing the best u can with ur situation,that’s a lot to be said, without the help from medical professions knowing or caring,,,,I e too many Er trips, sent home, then back later, short term care, learned a lot from ur letter Thank U it was a lot to read, but I have lots of time to try to improve.

Thank u

Sonnerkay

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I am scared the photophobia will never go away how long did it last for others

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I got an allergic reaction to a Med and head swelled and now 3 months later still have photophobia as I got heaps of light and sun in australia in first 2 weeks as all doctors clueless to what I had a neurological assessment weeks later after vertigo photophobia photophobia stiff neck unstable blood pressure mind blanks said that's prob what I had but getting diagnosis ahhhh

Thankyou for all your tips🙏🙏🙏🙏🙏🙏

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I had a CT scan done

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Hi I’m now 4 years post VM and I had light and noise intolerance. In the early weeks after having VM I tried to continue life as normal and made all the symptoms much worse so I had to learn to totally rest and avoid stimulants such as light and noise. I couldn’t even watch tv as it was too bright and noisy. Eventually I slowly built up my tolerance and this was a step forward / 2 steps backward process. I found night driving glasses helped for easing the light intolerance when indoors.

I had lots of ear plugs, the decibel reducing ones ( bought in Boots) have been invaluable for many situations .

Now I can walk in the sunshine and I go to rock concerts without ear plugs.

W

The best advice I can give is to know that the after effects can take a long time to settle.. you have had a brain inflammation not flu! The rest and if you avoid brain stimulation now will allow that inflammation to settle. If not you will agitate it and the symptoms , as indicated by the stiff neck , will continue to worsen.

Have patience , take it very steady , learn to enjoy the rest and you will come through it.

I climbed Ben Nevis this year !

X

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I'm can no longer watch tv or use my cell phone. I sleep all day to avoid the light and sounds.an the fast pace environment outside. An my simptoms becàmè worse over time now I'm up all night siting in the dark.i to continued life after I got sick how long did it last for u an what did u do to make your self feel better.have to were eàr plugs an eye covers to sleep as well

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Hello there Sunny!, it's SqueakMouse here😍-I'm the girl who wrote you a couple of super long messages the other day (sorry about that😮! I know it's terribly difficult for you to read or process much information, or to read and process any amount of information at all without triggering increased exhaustion, headaches, and confusion), but I promise you, that's all very VERY normal with a meningitis diagnosis, especially in the relatively early stages of recovery, as you are at the moment😬. I just wanted to let you know that those posts are there in your thread on the subject of meningitis symptoms/how long they tend to last/how you can endure this recovery period as comfortably as possible/tips on what to do and what not to do in order to protect your energy and well-being while you're giving your body time to recuperate, etc., just in case you haven't seen them yet--if I recall correctly (but as a fellow meningitis patient, I can't say for sure that I recall certain things correctly at all😋😉), I addressed most of the questions you listed in your most recent post, so you might want to refer back to those posts for any information they might contain in regards to the questions you posted a few hours ago. However, if I happened to inadvertently overlook an issue you'd like feedback on (and/or you'd like further information about or clarification of certain questions), I'd be delighted to try and be of help, so please don't hesitate to let me know if there are any such issues that you'd like to be more fully addressed, and I'll do my utmost best to support and assist you😊 In the meantime, do your best to listen to the requests your body is making through its language of physical/emotional/psychological symptoms, and try not to feel guilty or ashamed to give in to any impulses to rest, sleep, keep the room dark, etc.; as other people have already recommended in their posts, your body has been through a LOT, and requires a lot of time, rest, quiet, and space in order to recover. Hang in there, Sunny--there are many of us fellow meningitis sufferers you are pulling for you and praying for you, and sending all the good vibes we can muster😁

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Hi Sunny308,

It took 2 years before I started to recover, until then I seemed to get worse if I attempted to push through it. My neck dislocated and so the spinal injury made things much worse.

What I did was: I had no option but to rest and I slept all night. But short , gentle walks kept me moving .

I wore night driving glasses for watching short periods of tv. I had to watch slow paced programmes as anything with fast paced action and a fast changing screen agitated my brain and gave me terrific headache.

Music also agitated my brain and was the cause of many arguments in the household so wore ear plugs if music was playing or in a cafe and for watching tv.

Between the 2 and 3 year mark I slowly built up my tolerance putting myself into noisy situations for short periods of time and building I up. At first it gave me terrible headache but eventually it improved and now I rarely have a problem.

I ate really healthily , green smoothies, turmeric drinks to boost my immunity, raise energy and help inflammation.

I had a lot of acupuncture too and physio on my spine and to correct the vertigo.

Mostly things are ok now.

I still get tired and sometimes noise bothers me in very loud places.

I am trying to return to running but I think the jolting in the neck is causing migraine so I might have to re-think that.

I was told it would take 3 years to recover and it did.

I wouldn’t sit up all night if I was you because I think that will cause sleep problems that you won’t want later. You might have to accept that this is how you are for now and with a lot of rest and gentle movement things should improve over time. Once you start to recover and feel better then you need to build up your tolerance... do it too soon and you might set yourself back as I did.

Take care x

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