What after-effects have you suffered from f... - Meningitis Now
What after-effects have you suffered from following meningitis?
MNClaireDPartnerMeningitis Now152 VotersPlease select all that apply:
Other effects include numbness and tingling sensations in my right hand side (face, arm and leg), chiefly when I'm very tired. I have difficulty getting the right word sometimes too, or get the right words in the wrong order.
It's been 18 months since I had what was apparently a bad bout of viral meningitis.
Foot pain (nerve damage)
I had menococal meningitis June 13, lost hearing in 1 ear an severe in d other ear, severe titinus, did hav balance problem but now that's ok, I'm finding it hard to believe that I will never enjoy my music again
Do you have a hearing aid?
I play a musical instrument. I had VM in Nov 2015. As a result of it I had lost a hearing in one ear. I tried to play my musical instrument, but it sounded really bad, not in tune. I was so dissapointed, but... Now it is April. I can hear very well, I enjoy listening to music again. I don't have much desire to play music, but when I do play it sounds normal.
My main complain is... My personality has changed. I get very irritated with my friends, I want to avoid all of them. I see everything in a negative light. I have headaches, but it got so much better. It's been 6 months. Other than that I am very lucky to recover complitely.
Nov 2015 - shingles and VM.
5 days with IV in hospital. 14 days at home with PICC line.
I now get regular spells of tinnitus and amusingly (for others) jingles and theme tunes tick and I find myself singing/humming them!
*stick not tick
Change in personality; feeling isolated; sensitivity to light & sound; M.E. (diagnosed after 3 years).
My Personality changed complete.i cry more easily. also a bad Limp
i have aphasia since, both anomic and expressive. Reading aloud in chosen language helps to make language connections stronger in my head and make it easier to speak as desired.
i know I am going to my limit if the words mess up or don't come or getslurred, and it is not from using alcohol as i rarely drink.
i have mood lability that is greater than before having been through bacterial meningitis.
i had appendectomy within the first six months of healing from bacterial meningitis because of a infected appendix. happy surprise birthday to me. it was the eve of my first bday after meningitis.
i had thought I had a religious vision in the hospital that inoculated me against suicide but that seems to have worn out. now, i have no hope. no belief in god, because a loving one wouldn't let me go through this. no longer have any concept of continued health. so why the heck not die? i am so sick of being sick. and after four years, it is not going to change.
Hi There, it has been four years for me also and i am also sick of being sick, but glad to be here. Sounds crazy doesn't it, that i would want to be here. I am a Christian that regulary reads the Bible and goes to Church when i can, and if i feel well enough. I was a Nurse and loved my job,but cannot do this job anymore as i have been left with many disabilities. It was through doing my much loved career that i became sick, but i don't regret that either. This was my second bout of Meningitis, and discovered that i now also have a brain Tumor on top of a dysfunctional thyroid gland which has left me Hypothyroid and we can't seem to get it balanced. I also have memory probs, and many other disorders, but i don't blame God for any of this its nothing to do with God and everything to do with life as we would understand it. We all get a shot at life and its up to us how we decide to live it. Sure, some of us suffer more than others, and i feel at times as though i do, as i dont have much that is right with me, hahahaha . I have also just lost my Mom, she died in my arms 5 months ago, 8 months prior to this i found my friend of 32 years dead in the shower from a massive Heart attack. Hope this isn't depressing you more, just want you to see that there are people worse off that are making the most of what they do have and not what they don't. No matter what the disability we can alway's find some joy in our life if we look hard enough. Look at what you can do in helping somebody else, this will take you out of yourself. Depression is a self centered problem so taking yourself out of the picture by looking for some way to offer help to another will really help you, especially when you find others worse off than yourself. Get involved with your local church and find some way to fit in, and sit in on some of there ladies meetings, they are so inspiring, and you would receive much needed Prayer. This my dear friend is what helped me the most, Prayer. Now i love nothing more than praying for others, it gives me a real buzz. I also do self help with, "Lumonosity " brain training games. This really does wonders for your overall Cognitive Function, and brain health. God is real, he does Love you, you are not being punished. He sent me to encourage you, there is light at the end of the tunnel. Hope this was not to hard on you, just want to encourage you and let you know that time is the healer . Blessings to you, and much needed prayer also. xx
you are enttitled to your beliefs. but you are not right to tell me that you know better than i about my situation with whatever universal spirit may or may not rule the cosmos.
i cannot believe that you have the gall to tell me how to live my life.
you are wrong in your response.
Sad that you feel i am trying to tell you how to live your life. Just offering a solution that has worked for me and others that i know. We all have choices in life, and i am so grateful that we do have the right to that. I would never force my opinion on anybody, and yes, you do have the right to be angry, i would be also if somebody did that to me. Just offering a positive solution.
I do so hope your situation turns for the best very quickly. x
please tell me you're still here ...your words are exactly how I feel..
I am still here. It just doesn't make sense to do anything drastic and then I don't want to be responsible for the effects of a drastic choice of mine on my family and friends. So despite still being sick and tired of life like this, I am still here.
I actually have a few assessment to see if the neurological rehab center nearby can help me get my functions back. I'm optimistic and also pessimistic about them being able to help me. But we will see.
Well I'm glad you're still here...I'm only 2 months into having VM and it's been the pits. The after effects of this BS illness are worse than the initial pains that put me in the Hospital. I never knew what depression was until now. I am pissed that there is no awareness on this, Doctors have very little knowledge and dismiss all my concerns and family just doesn't get it..I feel like an inconvenience and a hypocondriac because there's always something wrong with me now. It has taken a huge toll on my relationship but then again I just recently realized its not that it took a toll on my relationship, my relationship wasnt strong enough to survive hard times. Horrible thoughts of "not wanting to be here" has crossed my mind many times because I feel so alone and in a completely different world than everyone around me. I am learning to take it one day at a time. I hope things are better for you , thanks for responding
hugs
Diagnosed with CFS/M.E just over two years ago. Headaches vary from mild thumping to extreme searing pain.
Tremors, heart palpitations
I acquired a frontal brain injury with all the dysexecutive problems which have been confirmed in Neuro psych testing.
Collapse because of loss of weakness throughout whole body
I had labyrinthitus plus facial (Bell's) palsy start 3 days after the headache. All from high steroids, in addition to immunosuppressants for myasthenia gravis, and reawakening of previously dormant varicella zoster virus. Extensive abberrant reinnervation of facial nerves is permanent and gives rise to annoying issues eg eye watering when eating.
The physical fatigue has been debilitating. 7 months since the onset of my VM I am still seeing a physio to get strength back in my legs, hips and triceps. I have ongoing tinnitus. Reading and computer screen work is also still very difficult. Light sensitivity is also still an issue on a "heady" day.
I have memory loss (short term and long term) and tinnitus in my right ear. My balance is bad.
greensleevesmaverick, for the first years after being released from the hospital, I had bad balance problems. I remember the TOTAL FEAR when confronted with having to use a "down escalator." That balance problem lasted for about 10 years. But now...almost 30 years since...I have ZERO balance trouble. ZERO. As with so many of our horrible BM after effects, TIME becomes our cure.
After 39 years, my only remaining after effects are:
1. Non-throbbing daily headache
2. CONSTANT foot pain (especially toes area) caused by nerve damage.
Suffer from irritability, noise intolerance and reading/writing word finding difficulties
found I have similar symptoms the noise thing is really bed to the point of driving me nuts sometimes, gives you a real headache.
Since having meningitis last year 2014 I have had headaches 24/7 fatigue body pains .My life is on hold at the moment .The most frustrating thing is trying to get help from doctors they look at you when you tell them your symptoms as if you are making it up .It would be a good thing if they really knew and understood what people go through as you feel isolated.All the doctors should know the after affects so they would be able to help people that have had this terrible virus and a good support system then you would not feel isolated .I am writing this down but it will go on deaf ears. 1251
If anyone knows where there is help would you be kind enough to reply kind regards 1252
Brain & speech doesn't connect when I put in an 8 hr day. I also am experiencing blackouts, I don't drink or take drugs, not even pain meds, but the blackouts scare me. Also can't drive at night.
get checked out for orthostatic stability.
explain how you feel to another doctor, and another, and another until you find the one who listens.
live on even if you want to stop. i think I have a problem with folks telling me that god loves you and yes I hurt too. but, they don't get it. but, find something you can do that is not fatiguing. drawing and writing stories are my outlet. crochet, knit, and spin when able. what ever. computer games. something that is fun and not passive.
long time since i was on here, Posting Having Cared for my Wife for years after meningitis. loss of toileting sensation, hand numbness, couldn't write, personality change, severe short term memory loss never really recovered this, muscle loss due to long term being bed ridden ICU then on a ward rehab never built the muscle back up, a awful condition what it does to you and how it changes people some more than others, Louise never fully recovered it made a real mess of her. RIP Love.
Regards Chris
Fatigue and migraine like headaches are the worse for me after VM in Feb 2015. When I am tired I also experience tinnitus and balance problems (which on a good day is not as good as before but not usually a problem). I also blackout (it is thought this is linked to migraines/headaches) and can't tolerate too much sensory input (supermarkets are still a big issue for me).
I forgot to tick 'other', but anyway: I have severe hearing loss in one ear, and so have tinnitus because of that, though my hearing aid helps reduce the tinnitus. I also had a reactive arthritis in my hip from collapsing on the stairs, so had physio for that and recovered after 1 year. My mood can also fluctuate a lot. I also have circulation problems in my extremities, especially in cold weather. As for the fatigue, it is taking a really long time to get better. I became sick in May 2014 and for the first year had extreme fatigue, sleeping for 12 hours at least and needing to nap every afternoon. It is slowly getting better though.
Mollaret's, intolerances to alcohol, caffeine and cocoa, speech syntax issues when tired
I have reoccurring stiff neck and headaches; cannot tolerate long direct sunlight exposure without developing headaches; left-side numbness; anxiety and fear of recurrent episodes; frequent back and neck pain; stressful events often precursor to headaches and meningitis like symptoms lasting 1-5 days; frequent fatigue; low Immunigoblin test results; memory failure; inability to always recall a specific term especially under stressful events such as board meeting; ringing in l ear;
Light sensitivity, tinnitus, profoundly deaf and now have a cochlear implant, tired all the time, diagnosed with under active thyroid, low vitamin do. Aches and pains, headaches, migraine, forget words or mix words up. Also balance problems which are worse in open or busy places and in the dark. I also have trouble focusing my eyes when moving or on distant objects.To name but a few I'm 20 months after being diagnosed with pnemococal meningitis.
Hi, 2 years on from pneumococcal meningitis & suffer from fatigue, headaches, some hearing loss in one ear, tinnitus & balance problems. The fatigue has improved but when tired suffer quite badly with them all! Also has affected my family life & work life. Hard because people can't see your symptoms so don't understand, they think you're ok. It's hard sometimes but glad to have survived as my husband was told I wouldn't.
Sometimes I don't know what my feet are doing possibly lack of feeling in my feet or co ordination problems. I have word finding difficulties and also sometimes the word I say is not the word I mean. I have been left with a brain injury. I,struggle making decisions some days.
Depression , anxiety and I can very quickly lose my temper
I had meningitis in 2012, was out of work for six months, have been back since. I have started getting sick again. I hurt really bad in my left side, getting really nervous and shaking again. I have bad ballance problems. I am really scared. Don't know if it is coming back. I have neck pain. My side kills me. I am terrified
Hello, It is rare to contract meningitis more than once, but possible. We would strongly suggest that you seek medical advice as soon as possible to rule out any conditions requiring urgent treatment.
Daily back pain, change in personality - mood swings, low moods, anger
Change in personality - it seems like all emotions are gone, constant fatigue. I never liked noise, but now I love being alone even more. I had VM in 2015. I spent one week in ICU, two weeks at home with PICK line, started feeling better in a month. I am almost back to normal. Hearing , vision problems are gone. It took almost two months for headaches to stop. I get easily annoyed with people who were always dear to me and it is scary. Short term memory issues.
Major depression and anxiety.
I've suffered from mild depression and anxiety for most of my life but ever since VM it's been staying with me like never before. I'm 5 yrs post VM and I've spent most of those years coping and recover from my depression. I was only 19 (!!!!) when I contracted the disease so I've had to take time off of school because of my concentration problems. I've also been struggling with exhaustion and irritability. I'm doing talk therapy and on anti-depressants now and I'm happy to finally be getting help.
Tremors, tinnitus
Other - neck ache, fogginess and head pressure (which can feel different to headaches). Also anxiety.
Hi. My best friend contracted meningococcal meningitis 3 weeks ago. He has had the devastating news that he has to have both his feet and his hand amputated. He is also suffering from some hearing difficulties (although the doctors think this may recover). Does anyone have any advice as to what support will be out there for him (he is in his forties), works full time, lives in a flat.
Obviously we are all truly thankful that he is still alive but it would be good to be able to give some hope to him that there will be some support in the coming months / years.
I have very little patience and get angry and frustrated quickly. I'm 4 years from my last Mollarets attack.
Necrosis of the hips, early onset arthritis, fibromyalgia, eyesight problems and severe depression/Anxiety.
Most bothersome is the depression after VM 6 months ago.
Depression, sadness and being in a constant state of Fog and confusion
other effects are pain in my left leg and arm, real sensitivity to touch on my limbs and major problems with numeracy skills.
Other effects are light headedness, no appetite, emotional
I have had immense trouble staying asleep each night and depression-like symptoms.
photosensitivity, needle/pinprick sensations, neuropathies
Foot pain, especially my toes area...on both feet. My original symptom that caused me to call for an ambulance...was EXTREME leg pain. Once in the hospital, I was unable to tolerate the pain from even a sheet! Both legs became gangrene and after 6 weeks in the hospital, my toes were debrided, (with zero numbing...because my system was till so unpredictable.)
Now, 41 years later, my toes area is still painful...but tolerable. The pain dissipated A LITTLE every single year.
Hyperacusis(sound sensitivity often extreme) Brain shivers. Often constant. This started 5 mo. Post vm.immediately after accupuncture and spinal cup. Within 15 minutes severe headaches and renewed brain pressure. Within 1 day sound sensitivity started and feelings like electric shocks in brain. Still continues to this day. Now 11 monthe post
