I'm going on about a month since being hospitalized for 5 days and diagnosed with VM. I have never experienced something so painful and evil , coming from someone with a high threshhold for pain, hell I gave birth 3 times without so much an asprin. It feels like this thing is ravaging my entire body and being. As each day goes by, sometimes I feel better but anytime out of the blue , the headache , stiff neck , aching back and limb numbness attack. I constantly have blurry vision, confusion, and "heavy head" feeling. Now I have earaches suddenly. Although these thing are all a pain in the ass ...every time I feel better , I feel better than before. I am hoping it is because I completely laid off all pain meds. My sister bought me a bottle of black seed oil , I've been taking it for 1 week now and the improvement in 1 week is much more than since I've had it. Has anyone else experienced ear pain? would love to hear from others who have ongoing effects.
Week 5 of VM...WTF is this vicious sickness... - Meningitis Now
Week 5 of VM...WTF is this vicious sickness doing to me?
Hi, I was diagnosed with viral meningitis in May. I still have not been able to return back to work. It is horrible! At first they thought I had a stroke because half my body was paralyzed but I was in excruciating pain, They ended up transporting me to Chicago IL to a different hospital where they discovered I had VM. I was there for almost 2 weeks. I couldn't walk. Once I was able to walk they released me. I was on bed rest for almost a month. But still today I have severe pain, and muscle spasms in my right leg. Severe pressure headaches, I always feel like I have a hat on my head, confusion, memory loss, and the ear pain/ringing is awful! I am on topomax and gabepentin. I just want to feel better already!! I actually want to get back to work and have my life back! That's interesting about the black seed oil! I will have to try that! I hope you have some relief soon! I wish I had some better news for you but it is a long road to recovery! I'd find a good neurologist if I were you! Mine has been very helpful and encouraging.
Thank you for sharing your experience. I am sorry you are going through this as well. I am obsessed with learning about it since getting it. I am amazed and disappointed at how little awareness there is of this . No matter what type...It can kill and cause horrific damage rapidly. As horrible as I feel sometimes , I know it could have been much worse and am thankful . As for a neurologist , I have had no follow up treatment yet and don't plan on returning to a DR unless something gets unbearable. Right before I fell ill with this, I left a good job of 10 years, lost my insurance shortly after. Although I have new symptoms and sometimes I have bad days, everything is bearable and I will deal with and fight this. I strongly encourage you to try the blackseed oil. It originates from the middle east and has been around for years. I cant say for sure right now its why Im better each day but since Ive been taking it, I feel better each day , and each bad day is not as bad as the last. I'm also learning to pace myself..Im very impatient so when I feel good I think I can do anything...yeah no..now if I do any sort of activity at all , I prepare to stay in and relax the next day. Hope you feel better as well
Hi Becca. Sorry to read about your pain. Goodness that is certainly horrible and yes it is asif VM indeed is a vicious illness.
Did you learn what type of virus it was?
I would like to know as I believe there are many different types and it certainly makes a difference in treatment.
Have you been for your follow up LP?
A follow up LP is of cardinal importance for your health going forward as the Dr should establish if the virus is stil present in your system.
Will keep you in our prayers. Be blessed.
Thank you my VM is assumed to be caused by mosquito as I got sick quickly following a day at a swimming hole..where I recall my sister bringing to my attention blood pouring down my arm after getting bit and its weird because I never bled like that from a bite.
Hello Becca - I was diagnosed with VM in July 2013. I was very very sick as well and had 3 lumbar punctures during the 1st 6 months. All the symptoms you mention here are spot on with the after effects I have felt for going on over 3 years now. I am Much better than I was though and you will be too. It takes a lot of time to heal and everyone is different with their recovery. I did not specifically experience paint as my whole head felt like a brick that had fallen off the side of a building. The best advice I was given here in Arizona was to treat this condition like a brain injury, you have to let it heal. I know this illness is probably driving you nuts but you will get better as time goes on. All the best and take care.
I meant to say ear pain, not paint. Sorry.
Becca823 :
1 year post VM , ear pain pressure, loss of hearing left side, ENT, Says hearing fine, put sensors on head used vibration & puffs of air, says my ear is hearing but brain signals mixed up, not getting messages straight ! Some days I'm normal (almost) other days sensory overload from a crowded store,or noise, hearing immediately affected. I wear an ear plug left side to tune down in crowded environment. Some days can't hear my husbands sentence ? This is a traumatic brain injury, I'm coming back slowly, and I'm a fighter, but this is the hardest thing and doctors don't have answers, infection specialist, nuero, been there, they just don't know. Have numbness, fatigue, headaches, confusion, I'm retired, no small children thank goodness.
Wishing you the best, take care. Sonner
Thank you..Wishing you the best as well...its amazing we all have the same or similar symptoms and I see most say recovery is one to two years with after effects but yet Drs and specialists dont know diddly about this and the lack of awareness is baffling.
Sensory overload is the description I have been looking for to describe the feeling for three years! Managing it is the most important thing. Some days I am well rested and not stressed I can tackle anything, but others 3 background conversations at once confuses me and I get anxious. It's such a strange thing to describe to anyone else.
Thanks for sharing that, it is difficult to explain to others, sitting in a restaurant & suddenly I'm near tears, the talking, dishes rattling, a crowded store the same, escape to car just to be in the quiet again, to recoup. Other times I can't hear , how can it be overwhelming extreme sounds, then difficult to hear my husbands conversation? My brain just doesn't absorb sounds correctly , if I'm rested it is better, I do get anxious trying to sort thoughts , there's a lot of emotions I no longer have control over, that is difficult to explain and no one has any answers. I am changed since VM. This is the new me, have to adapt best a person can, it's not at all easy. Take care, keep your stress down, rest is the best medicine.
Sonnerkay
Today is a very bad day...no pain physically really but overwhelming feeling of sadness and alone...blurry vision and numbness on one side. My emotions are so out of control, its affectting my relationship .Im seriously considering breaking up with my boyfriend who lives with me as I feel he is frustrated and expects me to be fine now. I even have terrible thoughts of "giving up" .
Wow, hang in there girl ! U need some medical help i.e...anti anxiety rx, at least call the meningitis help line, they can offer some short term advice to get u thru the hour/day. Good luck wish u the best, I try to get thru the minutes until the hour passes hoping that time in hours leads to a better day sometimes it works, sometimes sleep is the only relief.
Sonnerkay
Mecca I had BM 47 years ago in the Army, I was in a coma for 2 days and an army hosp for 48. I have lived with migraines for 37 years. Hopefully you won't but for now kick back and roll. There is nothing you can do
Steven
Hello.
I had viral meningitis a week before my 30 birthday back in 2013. And was also hospitalised for a week. I'm afraid to say that it takes a lot of time to recover. You really have to rest and not push things. I was signed off work for 3 months and then worked part time for three months as I still had dizziness fatigue and co fusion.
Read through the stories on meningitis now website and you willfind that different things can help. But for the first six months take your time as every day you feel stronger, it tricks you into doing too much. And by doing too much I mean trying to return to your normal life. 6 weeks in I had lost two stone and a walk a few hundred metres left me in bed for the afternoon.
It's a horrible illness that doesn't get the coverage that bacterial meningitis has, and the doctors leave you with little info. I still get headaches, and a little anxiety and do not like rooms with lots of background noise, or bright lights. What I find helps is managing the symptoms. Taking naps, making sure that I avoid getting over stressed. I bought drive wear lense sunglassss which change with light, which help me imensely. I also signed up for cranial osteopathy through meningitis now which was a great help for the headaches. But 3 years on I am still learning to manage this. I feel I will have these symptoms for life and accepting this was important. My family and friends are also very supportive, as after 6 months when most think your fully recovered is when you have to remember that you have been through a serious illness and it may still affect you.
Hi Becca. Sorry to read about your pain... i can imagine little how it was horrible..... my brother whose suffered from VM with encephalitis 2years before....
You had mentioned about Black seeds oil which helped you a lot........ could you advise me how to use that.......
I take it twice a day 1 teaspoon straight ,although I still have some after effects , I feel better and better every day and I consider myself lucky seeing how long recovery takes for some people. I can understand your brother like a child. Be patient with him, my behavior had change a lot, getting upset, mad etc..meningitis affects the brain and sometimes it has to learn things again and its frusterating, your brother probably feels very misunderstood as he is living in a new world that no one understands but him and those who have suffered this. I am not a fan of modern medication and again I am blessed to be healing as I am only 1 month later. here is a link ,check it out diamondherbs.co/101-black-s...
Hi Becca. Sorry to read about your pain....... my 28years old brother who had suffered from VM with encephalitis 2years before....
who had lost his memory after effecting VM now became like a child,behave like a child........ we are so worry how to deals with this..... Contacted nerophysician they said damages of brain cant be recover but still we are hope and on some day he will get well soon.......
You had mentioned about Black seeds oil which helped you a lot........ could you advise me how to use that.......
I will be great thankful to you
Hi Becca, I was diagnosed with VM on May 2 and was hospitalized for 4 days. I agree with you that I have never had pain like that before, including giving birth twice! (I guess I got something good out of those painful episodes, so maybe that's why they didn't bother me! LOL!) I believe that many of my symptoms became worse after the LP, and none of the doctors I saw- an infectious disease specialist, internist, neurologist- could give me any information. One of the neurologists told me to go back to the ER a week later to have a blood patch done, but I felt it was too late for that. The infectious disease specialist told me it would be 5-6 weeks to feel better and perhaps 6 months to a year to feel like myself again. It seems that he was right.
I was very fortunate that I had a lot of sick time, so I was able to take off all of May and June and most of July and still get paid. I am extremely grateful for that! It lessened a lot of anxiety. But for the majority of the time I was still getting headaches, a stiff neck and that "heavy head" feeling you mentioned. I also developed tinnitus, and have a constant hissing in my head. I have an appointment with an ENT in a week or two, but not sure what he'll say.
The best advice I got was, as someone else noted, to treat it as if you had a brain injury or concussion. No one would expect you to be perfect so soon after either of those.
Now, a little more than 90 days from my diagnosis, I can honestly say I am feeling OK. Some days, like last Friday, I feel really good. Others, not so good. But I can function. Hang in there and know you aren't alone or crazy!!
Lisa
Lisa may I ask where your from ? Most I talk to are from the uk or another country ..Im in the United States and the Drs around here dont know much or take meningitis too seriously..after hospital stay I was told ..oh you'll be better in 5-7 days...yeah umm no
Hi Becca. I'm in New Jersey, about an hour from New York City. I was treated at a very good hospital and I believe the doctors are excellent. They just don't know enough about VM. A doctor I've seen for over 30 years actually told me that viral meningitis is a "benign illness". The look on my face must have made him realize how ridiculous that was to say to me after all I'd been through and he said"unless you have it". Yeah,right! Thank goodness my husband has been so supportive as has my mom. My kids are grown so we could concentrate on me. I've been lucky to have had time off work too.
Just hang in there. Only time will help you. Feel free to email me any time!
Lisa
Thank you Lisa ...as much as I hate to hear other people suffer from this, its good to talk to someone who gets it...my boyfriend , family etc assume I am better and just dont get it...its frustrating ..my only outlet and relief is talking to everyone hear and hearing everyone else stories...it assures me Im not going crazy. I hope you continue to feel better.
I am going to try the Black Seed Oil! I've been reading about it and it is definitely worth a try! I hate taking the Topamax my Dr prescribed for me. I feel like it is making me feel so "out of it" I seen it on amazon.com for an 8 oz jar about $20.00.... Is that about average price? I was going to just get that size to try it? I also seen capsules? Do you have a company you order from? I seen a youtube video of a guy who chases it with natural honey. Which seems like it would be good for you as well. I hope to get back to work In September. I hate being home and want to get my life back to normal. Plus, I hate dealing with the disability company at my job. But I have to get a handle on these headaches. I have been trying to take walks to gain my strength back. I can have a really good day but I think I might over do it and I'm down the next day or that whole night with a horrible headache. I'm praying for relief!
Hi becca823
Just seen your message was diagnosed with pneumocooal Meningjitis after being rushed to hospital on May 16th this year I was put in a sedated coma for about 10 days, a few days after being woken up I wandered why I was in so much pain my right hand and arm were in agony aswel as the rest of pains you are on about,I got told I had also had a stroke and a brain absess and then when I had a job walking with the pain in my legs and hips got told the Meningjis had caused a bad flare up of my sciatica. The final thing I had was to loose my hearing totally in one ear and only got a bit left in the other but had no pain in them just woke up and realised couldn't hear hardly also caused by meniningjitis.i was in hospital for about 4 weeks ,the pain still gets me down a lot but I,m getting there slowly,had no warning of any of it was in work which is scary fine one minute then all this,I am still off work don't know for how long and have to have hearing aids after having perfect hearing before,I am lucky to be here so I've been told by people.i have also started on that black seed oil but only a few days ago so will see how I go on it.
I'm sorry to hear you've been in this pain. I had BM (rather than VM) in March 2013. I have been in terrible pain for 3 of the last years. Only in the past 4 or 5 months has the pain lessened. I'm able to walk again and the pain in my ear has diminished. Try anything natural that you feel might help. I wish you all the very best on your healing. It requires huge amounts of patience and lots of help and care from others, but you've survived so far and will recover more over time for sure.
Hi there Becca, I'm so happy to meet you (but sorry it had to be under these circumstances--through a post on a Meningitis site, looking for advice because you're feeling so miserable😵!). You have my heartfelt sympathy and most sincere prayers, and I hope you regain strength and health easily, effectively, and efficiently😋
I was just wondering if you're still checking this thread(?); I noticed it's nearly three weeks old at this point (I'm new to this site, and only just got the chance to read through it😁).
I have had several forms of meningitis and would be more than happy to share my experiences/advice with you, if it would be of any help; if that's the case, just let me know that you got this message, and I'll write you back as soon as possible😍
And oh yes, I was curious about a few details (please forgive me if you've already answered these questions in earlier posts; I looked through the messages you wrote and didn't see them anywhere)?:
(1) I think you mentioned you no longer have medical insurance(?), and if that's the case, are you willing/able to receive further medical care/testing in the future (or are you having to refrain from such options from the time being)?
(2) Do you remember if any members of your medical team described your case as "viral", "aseptic", "fungal", "malarial", or "bacterial"--even if it was just in passing, and/or tentative/theoretical(?)
(3) Did your doctors happen to prescribe any medication for you (anti-virals, anti-malarials, anti-inflammatories, anti-fungals, antibiotics, pain control)? I think you said they hadn't positively identified the causative agent, but attributed your meningitis to a mosquito bite you'd suffered just previous to the onset of your symptoms, so I'd imagine if they put you on any medications at all, it would be one--or both--of the first two categories on the list (?)
(4) If not, are you willing/able to take an allopathic medication (i.e., do you have a good prescription plan, and/or does your system tend to accommodate them with relative ease and comfort)? I noticed you referenced the black seed oil--do you prefer naturopathic options, and is this particular one working well for you?
Sorry for all the questions😋!--like I said, I've had several different forms of meningitis (multiple times over, ugh😳!), and have therefore experienced many different treatment options. However, no one option has ever been the best solution across the board; rather, I've required a unique treatment plan for each unique experience, and the best plan of action depended upon a combination of different factors (such as the causative agent, whether or not I had prescription insurance, how long/how severely I'd been ill, etc.).
That's the reason for all these questions--I want to be sure I give you the information that will be most useful to you, and most in tune with your current needs, abilities, and requirements😍
In the meantime, keep the faith and hang in there as best you can; as most of the previous posters have mentioned, contracting meningitis is a painful and arduous experience (and the recovery is often even more so😫), but it DOES get better😋. Please don't hesitate to let me know what I can do to comfort and support you on your journey😍
Hello SqueakMouse
Thank you for all the questions and concerns. Almost 2 months since diagnosed and I still feel after effects. Was back in ER just the other day with severe head and neck pain. Unfortunately the local hospital here and Drs do not take meningitis seriously at all. Even the ER Dr told me "well its not the meningitis" "you dont get it again" and all that was done for me was pumping me full of painkillers which did not help at all. Upon my sisters insistance we went to a different hospital in which were more helpful, put me on steroids and benidryl and I started feeling better within a couple hours, was inflammation causing the pain. The also have a neurology clinic that have to follow up with. I swear the blackseed oil helped a lot but some damage done is what scares me. I still have very blurry vision, so driving is out. I feel depressed all the time and it is so not like me. I feel very alone in this. other after effects I still have are numbness in hands and feet. Back neck and head pain or "heavy head" still happen sometimes. It is hard for me to follow and seek proper medical care , one being I have no insurance and lost my job of 10 years just before falling ill. Another problem is the lack of knowledge of meningitis from medical professionals around here. I would love to here your experiences (although unfortunate and Im sorry youve dealt with meningitis too) What has worked best for you in recovery ? Where are you from ? Would love to chat
Hello there Becca❤️😍❤️😍!!
I just wanted to let you know that I got your message (thank you SO MUCH for writing!, it is such an honor and delight to meet you😍!), and I'm working on a detailed response to your questions and concerns--I can hear you're in a really painful place (physically, emotionally, spiritually...aw, heck, it's probably easier for you to identify the places that DON'T hurt at this point, since they're no doubt far in the minority, eh😋?), so I'll get it to you as fast as I can😋.
I'm SO SORRY you're suffering such terrible torment (there are no other words to describe it😢), and that you've had to endure yet another trip to the ER (and worse, that you received nothing but insults and invalidation for return for your effort and expense; talk about adding insult to injury😢!).
But before I continue, I feel I must set the record straight from the beginning, since it sounds like your physicians failed you on that account😫: The "truths" that ER doctor told you were inaccurate; you CAN "get it again" (I've been diagnosed with meningitis myself over a dozen times; while that is indeed an exceedingly rare circumstance, it is far from impossible😁 I'll give you all the specifics in my letter); the viral form CAN in fact often be VERY serious, and seriously debilitating, too (even if it's usually considered the "benign" form of the infection, compared to bacterial); symptoms CAN drag on for weeks and months on end (FAR beyond the "7 to 14 day" period that's commonly identified as "typical"), EVEN IF spinal fluid tests/MRI/CT scans "look clear", ESPECIALLY if the causative agent hasn't been accurately identified, and/or adequately and appropriately treated; and yes, a thousand percent YES, a "minor" viral meningitis can look and feel like an extremely devastating illness, especially if you have an underlying immunodeficiency and/or an unidentified co-infection/comorbidity simultaneously.
I learned all this the hard way--i.e., through harsh personal experience: Being sick, failing to get properly diagnosed, lingering in feverish debilitated nonfunctional limbo for years while bouncing along the cycle of "test/diagnose/treat/wait and see; still sick and/or get sicker and/or fall sick with something else, so back we go to test/diagnose/treat/wait and see---wash, rinse, repeat😋😉).
It's been inexpressibly grueling, but along the way I've the great good fortune to meet a precious handful of incredibly gifted and devoted doctors, who not only properly diagnosed me at long last (with some really rare and unusual illnesses, by the way--so they REALLY knew their stuff, which allowed me to trust them when they identified the "truths" those other doctors told you as the inaccuracies they really are), but who also have the patience, compassion, and devotion to believe me, work with me, assist me, and support me on every last mile of this journey--no matter how arduous, long, or complicated--and that has made all the difference😍.
These doctors are (alas😢) extremely rare, and often distressingly difficult to find (much less access)--but they DO exist, and if you hang in there long enough, I PROMISE you, you WILL find them😍.
In other words, don't give up--as agonizing as your experience has been thus far, that is not an accurate picture of the way your future is going to play out. Your guardian angels are on the job, and they are lining up the perfect doctors for you, who will be in the perfect place at the perfect time to help you in the perfect way💙😇💙.
In my letter I'd be happy to give you the names of the places/people/resources that gave me the best guidance, support, and assistance; best case scenario, they'll be within a manageable travel distance for you (I currently live in Colorado, in the Denver area; but I'm originally from Bucks County, PA.--and I'm very, very homesick😍).
For now, I'd recommend that you validate yourself as best you can (meaning, reassure yourself that you can--should, MUST!!!--trust your instincts, the messages your body is sending you, the legitimacy of your symptoms, the urgency and accuracy of your need to rest/recuperate/take things slow, etc...EVEN IF "the professionals" are telling you otherwise)😍.
I'm praying that the personal experiences I'm writing up for you will give you fresh hope and self-confidence, and that they'll inspire you to keep the faith (in yourself, in the Universe, and yes, in the skill and compassion of the medical specialists that I KNOW are being lined up for you as we speak, eager and able to heal you body, mind, and soul with an efficiency and effectiveness that will take your breath away, and restore the self-esteem and self-sufficiency that this whole awful process has stolen from you thus far)😍.
Positive change is on the way. The good is coming. You're almost there❤️😍❤️.
Best wishes and much love!💗💕💕💗
P.S. to Becca😋!:
I wrote a letter to MiniCarly this morning in response to one of her questions, and it just occurred to me that some of the things I wrote might be helpful to you, too...if there's even the smallest chance that that might be the case, I figure I better forward it to you, in hopes that it provides some comfort or reassurance😍 I'll send you the other letter I'm working on for you (the one I mentioned in my previous post) as soon as I finish it😋
Here's the body of the message I sent to MiniCarly:
"I know this thread was started rather long ago, but I am brand new to this site, and only just discovered your questions; I am so sorry for how much trauma and terror you've been through; meningitis is indescribably painful, challenging, and stressful, but words cannot express how much worse it is when shame, invalidation, rejection, and disbelief is piled on top of it by the very people you're giving your whole heart, trust, and well-being to...I am inexpressibly dumbfounded and deeply disappointed that you've had to endure such depths of physical, emotional, psychological, and spiritual suffering, and my heart breaks for you😢.
Alas, dumbfounded and disappointed though I may be, I am not altogether surprised--I too have circled the drain of despair that one can end up in if the illness is rare, complex, and/or has an unusual presentation, and suffered the agony and shock of being diminished, disbelieved, and dismissed by some medical "professionals" (?😉?) that couldn't find a conclusive cause or provide effective treatment.
And truth be told, as agonizing as brain infections are--and having experienced them yourself, you know that's no exaggeration😁!--in my experience, the lack of validation from one's medical team (and often, therefore, one's family and/or friends, who usually take their cues from the "professionals", trained as we are in this culture to accept their word as gospel truth) is often far worse, and leaves a deeper and longer lasting scar😵
Long story short, it is a deeply painful, overwhelming, and isolating experience--so much so that your entire worldview and self-perception can get turned inside-out and upside-down, utterly unrecognizable from who you thought you were and what you believed about the world before the illness began (an experience that I have personally come to count as one of the many soul-shaking traumas that brain infections inflict upon us, in addition to the "usual suspects" like fatigue, headache, and cognitive deficits--albeit one that few doctors know about, much less acknowledge😮).
But I promise you, you are not alone. As I read through the list of responses to your initial post, I noticed how many kindred spirits are here on this site--people who have suffered the devastation of the illness itself, and that of the entire process (getting sick in the first place; finding diagnosis and treatment--or worse, NOT finding diagnosis or treatment; stumbling through recovery; discovering your "new normal" and coming to terms with all the loss and change, etc.😳😫😁😉).
Like the posters mentioned above, I too am a fellow patient who shares a common history and experience with you. The experience is SO common, in fact, that I was commissioned to write a book about it by a national publishing company (working on it as we speak😍!; it would go faster if I had more than two working brain cells to rub together, I'm sure😄. Alas, I'm still recuperating from my most recent bout of meningioencephalitis--I've suffered at least 12, and lost count after that--and several concurrent diseases, so it's been frustratingly slow going😢).
That's actually why my editor was so keen on this particular project. Unfortunately, the experience of severe illness (and even difficulty of diagnosis) is relatively common and well-known in our society, so he really didn't see much of a need for yet another book solely about that.
However, the experience of being shamed/invalidated/punished for being in that situation (i.e., of being severely ill, and having great difficulty receiving a diagnosis) is not nearly so well-known, much less expected; therefore, a great many of us--who submit to our medical professionals with such faith, trust, hope, and childlike innocence when we first fall ill--feel utterly shocked, blindsided, and dismayed if we have the grave misfortune to fall into the category of the dreaded "Triple C's" (No, not an hourglass figure, unfortunately😋; I'm referring to the far less appealing distinction of being labeled a "Complex/Complicated/ Confusing Case"😋😉), and more often than not, interpret that invalidation and disbelief as a sign that we ourselves are somehow at fault, and end up collapsing into shame, self-doubt, and unworthiness as a result😢.
Anyway, the point of all this is to reassure you that you are not alone, as much as it may feel that way; you are not crazy, as powerfully and consistently as some doctors may transmit that message; you didn't "do this to yourself"/"create something out of nothing"/"exacerbate or exaggerate the symptoms", i.e., misinterpret your symptoms as somehow more alarming than they really are, as tempting as that self-identification may be to adopt, when doctor after doctor or family member after family member tries to "get you to accept the truth of it"....😵😫😳😋😍😉
As you probably know all too well, the insidious subtext of the above goes something like this: "We have run every possible test and can find nothing physically wrong with you, so what's troubling you is psychological, not biological-- and that means you're mentally ill, not physically ill, i.e., so flawed and weak as to allow mere emotions to derail your life and drive you to distraction. Now go home and chill out and leave the medical resources for the TRULY sick people who REALLY need them"😋😍😉).
DON'T YOU BELIEVE IT😋. Not for ONE SECOND. I know, I know...it's SO DIFFICULT not to sometimes, especially when you've tried so hard for so long to get answers and help--to no avail--when you're so physically, financially, emotionally, psychologically, and spiritually depleted. It's practically asking the impossible--and it's most certainly asking the superhuman😋😉.
I grew up healthy as the proverbial horse, and never missed a day of class due to illness from nursery school through graduate school; all along the way I burned the candle at both ends (and lit it in the middle simultaneously, much of the time😋) with perfect confidence that I could handle it all with grace and ease, with no ill effects--and I was right about that, until the day that I wasn't😁😉.
Unfortunately, "the pigeons came home to roost", as they say, and literally overnight I fell so ill that I was completely debilitated and irrevocacably disabled, and my life was never the same again. JUST. LIKE. THAT. No exaggeration, my decline was that swift and that sudden; I never saw it coming (well, at the time, anyway; hindsight being 20/20, now I can instantly identify the myriad flashing neon signs and billowing red flags that the Universe hung around every corner as a warning for my benefit, which I could not--or would not--see at that moment😁😵😋). SIGH😮. Ah well, live and learn, eh😋?
A dozen years later, I'm still in the process of diagnosis and recovery (and diagnosis and recovery, and diagnosis and recovery--wash, rinse, repeat😍). Along the way, I've resided at every point along the spectrum of illness (diagnosed and hopeful/undiagnosed and desperate; comatose in the ICU/learning to walk again with my service dog in the park; undergoing surgery/waiting for surgery; being told there's nothing wrong with me/finding out that in fact I have a life-threatening illness, the outcome of which is far less favorable because of the delay, dismissal, diminution, and disbelief I experienced from heartbreakingly many medical providers; and around again we go😋).
Like you, I once had numbness, high blood pressure, extreme fatigue, and a pounding heart rate that was diagnosed as "anxiety" (that ultimately turned out to be a neuroendocrine tumor, in reality😵). Like you, I had a headache that was brushed off and invalidated, supposedly caused by everything from an "infected tooth" to "sinus trouble" to "atypical migraine" (and worse, occasionally I'd get labeled with "conversion disorder" or "PTSD"😋)--in other words, anything but something "legitimately serious" like a viral meningitis; it turned out that one of those headaches was meningioencephalitis, another was a stroke, and a third was sepsis secondary to an infected PICC line (and yes, in fact, several more of those "benign" headaches were indeed viral meningitis after all; fancy that 😫😄😋).
What a world we live in, eh😍?
ANNNNYYYYway....😋
As you can probably guess from the encyclopedic post I've just thrown at you (sorry about that!!; I didn't expect this would be nearly this long when I first began, sometime last year....haha😉), I've experienced a lot of similar symptoms to yours, for which I've received a lot of really rare and unusual diagnoses along the way (The TV show "House" was ruined for me early on, because I'd been diagnosed with so many of the "rare-to-the-point-of-impossible" diseases featured in the plot that I'm usually able to solve the case myself before ten minutes have passed😍)...so perhaps if I share some of the specifics with you, you might be able to take them to your own physicians, and finally get some joy (fingers crossed😄?)?
I could even share the contact information of some of my doctors with you (the good ones, of course😍), especially since I think you reside in the US, as I do (?) If you live nearby I could even meet you for lunch or something😄, and you could meet my seizure alert dog (Guardian angel, private nurse, personal physician, spiritual advisor, counselor and confidant-- all in one convenient cuddly cozy portable package💗🐶💗)!
Anything and everything that you think might be helpful and/or comforting to you, I'd be delighted and honored to share😍. Just let me know when, what, and how (I know I write a lot😉!, so perhaps you might prefer me to send you the longer messages via email?), and I'll do everything in my power to be of service to you❤️
Meanwhile, may you be blessed with all the health, strength, comfort, peace, and clarity that you dream of, and that you so richly deserve😋 You'll be in my thoughts and prayers💙😇💙!
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So, that was my post to MiniCarly😍. I hope it's helpful to you, in some small way at least😋 Thinking of you!
Reply
Thank you so much for all of this ! I have been going out of my mind with being alone in all of this. although through unfortunate circumstances ,its good to talk to people who understand. The very worst part of this whole vicious illness is "being alone " Drs with no knowledge and brush you off like you ave a common cold and family not understanding because they listen to the medical professions and not willing to learn more if not just to really understand how this has changed my life. It has taken a huge toll on my personal relationship with my boyfriend as I feel he is tired of the "inconvenience" of my illness. I have been focused on our souring relationship but now have realized its time to focus on me , my health and my future with or without him. I have a few long term goals and looking forward to reaching them with pride.I would nice to actually meet folks face to face and get to know eachothers experiences. Heck maybe in the future we can plan a weekend getaway/ meet up for those here in the US. thank you for all of your words and support. Would love to talk more and learn of your experiences with your Drs and your life with meningitis experiences. I want to learn and be involved with not only my health but get involved with helping others as well. I live in CT and meningitis is very unrecognized here as everywhere else. So many things to talk about...would you be interested in email? phone? it would be a pleasure to learn from you and your experiences.
I'm new here, and maybe your not even checking this anymore, but this is exactly how I am feeling. I can't get over this...I'm reading all these and this is me exactly
Your in Ct right ? Its rare i find someone from the US nevermind CT ..if you want to chat let me know. I will tell you of my experiences and what made me better or just be there for you the conversation 😊
Hi!
I would like that. My name is Kathy. I live in Burlington. Where about do you live? If you don't want to post it that's fine. Like I said last night I am only a month into this and I have been searching online for more info when I came across this group. I still am just amazed. I went back to my GP today for my check up and I have two things set up. An eye apt tomorrow and an MRI on the 14th. The pain in my left eye is so bothersome. When the doctor was looking at my eyes and standing back she did notice that my left eye is bulging,it feels like it's going to pop right out, no joke.
How long ago did you get sick?
Hi Kathy
Im in New Milford. If you are only 1 month into VM then your most likely going through what most of us have. It only through online support such as this and a fb support group that made me realize I wasn't going crazy . Most people have no knowledge of meningitis until they get it. Because of the lack of awareness and the ignorance from the medical field ( who say you'll be better in 5-7 days , yeah bullshit) , I became obsessed with learning of it. My email is rshaw82366@gmail.com or you can find me on FB facebook.com/rebeccashaw823
My boyfriend is suffering from what they think is tb meningitis and once his headaches started (after his first lumbar puncture..) he has suffered with severe ear pain. The ent dr says there is nothing wrong but he really suffers with pain in the ear.
I can't say I've had ear "pain" but certainly tinnitus (ringing in the ears), and phono phobia (sound sensitivity) have been a big problem. I am 5 weeks post my 3rd round of VM of unknown cause. This round required 2 hospitalizations. Each day gets a little better. My light sensitivity is improving so I'm hopeful my sound sensitivity will improve as well. Best of luck to you my friend. Hang in there. I can so relate to the "good days & bad days". It helps me to see that all in all I'm getting better which gives me continued hope for recovery.
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