Meningococcal Meningitis - 4 years on

In November of 2011 I was diagnosed with Meningococcal Meningitis after being brushed off numerous times at the ER, even with my GP writing letters to them requesting a lumbar puncture. By the time I was properly diagnosed, the rash covered my lower legs and hands. I couldn't see, couldn't talk, and couldn't even listen to the doctors, as the noise of their voices made me feel as though my head would explode.

4 years on and I'm suffering debilitating migraines fortnightly, have lost quite a bit of my once 20/20 vision, my hearing is impaired, memory loss is quite severe, and I have blepherospasms (eye muscular spasms) daily. I'm fatigued, get stressed easily, and struggle some days to remember to eat.

When I was diagnosed, nobody explained any of this to me. I was told after my 16 day hospital stay that I would be back to normal within 6 weeks. There hasn't been a normal day since.

Has anybody else had similar symptoms after diagnosis? And ongoing 4+ years?

14 Replies

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  • Hi jobiwan,

    I also had MM but it was 39 years ago. Things really DO get better but it takes a LONG time.

    My first SERIOUS symptom (and the reason I called for an ambulance) was because of the EXTREME pain in my legs and feet. That pain has decreased a little each year, although my feet still hurt 24/7. But it's OK...I've just learned to live with the pain.

    I also used to have 20/20 vision and I'm now 20/2500...but that's ok too. The eye dr doesn't know what caused the 2500...so it might just be good ol' aging, rather than a MM after effect.

    Have zero problem with my hearing.

    I do have daily headaches but I've learned how to control them. Are you in the U.S.? When the headache comes on (never on any kind of time schedule of any kind), I immediately take one Excedrin Extra Strength. If the headache comes at bedtime, I take a Goody Powder instead, because it has much less caffeine. Only about once a year do I have to take a second dose during a 24 hr period.

    From the day I was admitted into the hospital until I went back to work, I laid on the couch and babied myself for 9 months. At that time, when I returned to work 9 months later, I didn't notice any memory problems or fatigue. Stress wasn't a problem either...but remember...I basically did nothing for 9 months after being admitted.

    And NEVER have I ever forgotten to eat. Never.

    If you met me now, you'd never know I ever had a serious illness. Sometimes my hands shake a little from all the nerve damage but it's no big deal and there's no pain anywhere...except my feet. I'm now 71 and I'm MUCH more active than most women my age.

    You're going to get a little better each day...it WILL happen!

  • Thanks so much for your reply! I'm actually in Australia, but would be able to look up what your medications are and find our version of them.

    My daughters and my partner don't understand the headaches. I have them daily, it's just when it becomes migraine stage with the voniting and vision blurring that I really struggle. Before I was ill, I'd never had a headache without a good reason for it.

    I don't really have all that much pain in my extremities, though I do get the shaking hands occasionally. That I can deal with. When my sight didn't return to normal, I saw an optometrist and had photos taken of the nerves within my eyes. There's a lot of damage in both. I've had MRI's and they've shown a lot of lesions on the grey matter of my brain. They say it's scarring from the infection. It may be the reason for the memory loss. Who knows.

    It's good to hear that things do get better though. At 33 I feel a lot older than I should!

  • jobiwan,

    We Americans love you Aussies, you know!

    Are your headaches throbbing or non-throbbing? Like you, before MM I rarely had a headache. When I get one now, they're ALWAYS non-throbbing. They feel like a tight...extremely tight... band around my head. The pain always starts in a different part of my head. Not wanting to medicate, I used to wait until the headache was excruciating before taking anything. I don't do that waiting anymore. Nowadays I wait only about 5 minutes and then take an aspirin if the headache's still there. I always have bananas (or a health bar) with me. Not wanting aspirin to eventually cause stomach problems, I eat half a banana, take the aspirin, and eat the other half of the banana. This has been working for me for the last 20 years and fortunately I haven't had to increase the dosage.

  • The daily headaches are usually non throbbing. Like yours I guess they just feel tight. When they start to throb I know it's a migraine coming on, and they feel exactly like the beginning of MM again.

    I usually take some paracetamol and ibuprofen, but they rarely do a whole lot. I haven't tried aspirin, though that may be an option. When they're bad I take mersyndol. That tends to make me feel like I've been drinking for 2 days straight

  • So your daily headaches are non-throbbing too. Very interesting. (There are so few of us meningitis former patients in our social circles that this website is soooooo valuable.)

    Constantly experimenting, it took me 29 years to figure out the right medicine COMBINATION to stop the headache pain.

    I still get a headache daily...but I've learned how to completely stop the pain within 15-20 minutes.

    1. Excedrin Extra Strength (not for children under 12)

    Aspirin...250 mg

    Acetaminophen...250 mg

    Caffeine...65mg

    2. Goody's Powder (if after 6pm)

    Aspirin...520mg

    Acetaminophen...250mg

    Caffeine...32.5mg

    The key is to take it within 5-10 minutes of the start of your headache. Don't wait...that's when the pain sometimes goes out of control.

    Notice that when the caffeine dosage goes down, the aspirin dosage has to go up. That reminds me...every morning I also drink 1 and 1/2 cups of NON-decaf coffee. I think caffeine helps a lot.

    I hope you're able to find an over-the-counter combination similar to these 2 possibilities.

  • Hi Jobiwan,

    I also contracted MM in January 2012. So I am almost 4 years from diagnosis. I never had a rash. My infection came from a surgery. I had visible "tracking" on my skin along my spine. The doctor diagnosed me in about 10 seconds. The LP confirmed. I could barely see. I was in and out of consciousness. I hallucinated for at least five days. I still have migraines often. I have short term memory problems. And I have trouble comprehending sometimes. I have improved a lot. I think the brain injury from the infection is different for all us survivors. The important thing to focus on is that we ate survivors. My central nervous system will never be the same as before and it shows. But I'm ok with that. I lived. So did you. Do I think you will improve? Yes, to some degree. I've accepted that I have a new normal. I don't have the vision or hearing problems. But I also never went back to work. I was already disabled before MM. So I take the good days and thank God for them. I wish you the very best.

  • I was diagnosed early November 2011, so you were right behind me. I guess we're pretty much at the same stage of recovery.

    I went back to work about 4 weeks later. I still couldn't be upright for longer than 30 seconds before I'd have to lay my head down again. I'm a nurse, and at that stage I was working in recovery of day surgery. It made it difficult to do my job for around 3 months afterward. Luckily I had very understanding coworkers, thought they weren't so understanding when the headaches were still around 6 months down the track.

    I've recently gone back to an office job after breaking my back at the beginning of this year. Standing for hours on end is no longer an option for me, and there's not too many nursing jobs around that you can do from a seated position. The career change has made my symptoms more noticeable, most probably because I've had to learn a new job and start over. The memory loss, vision and hearing problems, and the headaches seem to stand out more than they used to. I just get on with things and try to pretend they're not there, but some days it really get to me.

  • Your fellow survivors are here for you! I hate it that you broke your back! So sorry to hear that. Oh she is right, we Americans love the Aussies😊. I have to take migraine meds more often than I want to. I'm glad you are able to work at all. As a nurse, I'm sure you understand how to take good care of yourself. Please let your family and any questioning coworkers know that these ongoing headaches are the most common after effect of meningitis. At least we are not all having seizures all of the time. Please let us help you if you are having "one of those days". I will be here for you.

  • Sorry to hear you are still suffering. I had bacterial meningitis (don't know which type) in early 2012. My GP probably saved my life by spotting it quickly and sending me straight to hospital. You did amazingly well to get back to work so fast. It took me 6 months to return to work 2 days a week.

    I had daily headaches and regular migraines and it wasn't until I saw a neurologist earlier this year did they get better. He has put me on a high dose of amitriptalin (might have spelt in wrongly). I don't like taking such a high dose but it has helped and the migraines are down to a couple a month and usually when I have over done it. I have been told to take dispersible aspirin when the migraine starts as if I leave it until things are bad my body finds it hard to take tablets and I'm sick. I also have Maxalt if it is really bad.

    He also said I have chronic fatigue ( he said not ME as it is because I have been left with a bran injury) but knowing that has helped me understand why I get so tired and I now try to manage the tiredness rather than pushing myself and then getting ill.

    My letter of discharge from the hospital said I was fully recovered however my hubby pushed me out of hospital in a wheelchair and I haven't been able to walk unaided since. I don't think all doctors really understand meningitis. I also have memory and speech problems.

    Looking back at the last few years I can see improvement but it is like watching a baby grow - things change so slowly it's hard to notice them at the time.

    Sorry I haven't really got any answers for you but maybe it helps to know that you're not alone.

    Take care

    Blim

  • Thank you Blim. I absolutely understand where you're coming from.

    My GP knew what I had and did send me to the hospital, though the ER kept sending me home saying I had the flu.

    I had no option but to return to work when I did. There was nobody else around to help with the bills at the time, and my daughters were still young and required mostly constant care. Now they're a little older and becoming more independent, I can rest when my head gets too bad.

    I sometimes stutter and forget words mid sentence, some of my speech is slurred, but it's not bad enough that I find it something to complain about. Usually anyway!

    I was also diagnosed with chronic fatigue about 18 months ago, though in the last 6 months, I've found its a lot better. I can cope, but am finding it hard to sleep at night now.

    I completely agree with you about doctors not understanding it. I think a lot of them think if we've survived it, we're past it. They don't want to listen to how we feel afterwards, or tell us any way to treat the after effects. They think their part is done and that's that.

  • Yes! I know exactly what your saying. I myself was taken to the er NONRESPONSIVE twice and was sent away by the hospital. I had no idea what was happening. No memory of it. I was trying to open the car door and jump out. My family had to rally and drive me to the nearest hospital. 65miles away. I was diagnosed within a short time. And at some point was told I wouldn't have made it another hour. I actually had a near death experience. My doctors told me it was unknown how much I would carry with me but that any symptoms I had after 4years would most likely be permanent. Today, 8years later I continue with dizziness, poor balance, excruciating headaches off and on, poor hearing in my right ear, extreme muscle fatigue, weakness, memory loss, I'm highly emotional and moody, can't handle financial affairs or business easily agitated by bright lights and noise. The of course others don't understand and become put out with me at times. Everything has become a struggle. I hardly exist on social security and have no financial help. At the time of my illness I was a practicing nurse. I was the sole source of support for six people. I maintained my himecthe work and bill paying for all. Ive lost my home my car and I'm living in a home that is falling down around itself. And im grateful to my family and grandmother who passed away and allowed me to habitate in her home afterwards. Poor little thing seemed to be the most concerned and she was two months away from being 100 years old.

    I have went on to long but there's a lot inside that needs to come out. So yes it can be an ongoing thing that doesn't go away but finding this venue to relate to others has been my saving grace the last few months.

    I had to get so upset that I checked myself into a mental hospital where i was diagnosed with major depression and severe anxiety. They are the ones who were able to help me find this connection and begin building a rapport with others who understand what is happening. Believe me no one else does. Please feel free to contact me with any questions or need to speak with an understanding ear. I'm hoping

    To forge new friendships in this ongoing change of lifestyle.

  • I have found it so comforting reading all these replies. I had BM 7 years ago and still have some side effects but have also learnt to live with them and improve as well. I went to Headway and they were brilliant. I had counselling as I was very anxious after and that helped me immensely. I wrote down everything I could remember about my illness and what happened and then we discussed each part every week. It was suggested I should get used to being the new me and then I had everything written down, dealt with and learn to live with things as they are as really I am very lucky as I was about 20 minutes away from not recovering. I have improved on some things and learned to live with others. I worked for a company at the time who were very good as I had 3 months off work and then did 3 months working from home which meant I could pace myself better. During this time my direct senior management were very good but a few others who worked there were less understanding. I guess education would help people understand better as I looked the same on the outside, if a little thinner with a slight limp! Lesson learned you also find out who your true friends are!!

    You will feel better and learn to live with other side effects and also how to manage them.Good luck and best wishes.

  • Another day of migraine pain so bad I've considered the comfort in death. They actually do get that bad. Currently it's still painful enough that I have tears flowing, though it's better than it was an hour ago. No amount of codeine, paracetamol or ibuprofen has touched it. I woke this morning knowing it was coming. I couldn't see the road as I drove to work, but I felt I had no option as there was nobody else around to cover the office. By 11am I had turned the lights out, my eyes were watering uncontrollably, and I just wanted to vomit so badly it was almost impossible to stay at my desk. I called our management office and told them I would have to close our local office to go home. They were OK about it, though I'm sure it annoyed them somewhat.

    So my plan for tomorrow, as I doubt I'll be in working condition, is to see a GP, and hopefully get them to prescribe something to prevent this happening so often. It's just over a week since my last attack, and prior to that was less than a week.

    I used to be an avid horse rider, but summer in Australia with a head feeing this way makes the thought of getting in the saddle absolute agony! I hate feeling this way, I just want my life back

  • Hi everyone , I've read up on some of your posts and so sad to hear so many people are suffering but so glad your hear to tell us.

    I'd like to share my story,

    I had meningococcal septicemia when I was 20 months old,

    My mum took me to see my doctor he diagnosed me with chicken pox and he sent me home, my mum knew instantly this was not the case so took me straight to a&e by the time we got there I was limo and my lip turned blue and I'd actually passed away , the doctors some how revived me and I was on life support for 2 weeks , at the end of the 2 weeks my specialists had told my parents to inform the family I would not make it through the next 24hours so please visit.

    If I was to survive which was highly unlikely I would be serverly disabled.

    So my whole family was at my bedside totally heart broke,

    Miraculously I survived the 24hrs and eventually came out of intensive care

    And got my health back for the specialists to discover after test that there was absolutely nothing wrong me.

    I had fully recovered I didn't loose any limbs and no disabilities what so ever.

    I am now 28 very healthy and have 2 healthy children.

    I have recently been diagnosed with tinnitus which I have read up can be an after affect of meningitis whicg can occur at any point ,

    Has any one else experienced tinnitus after meningitis ?

    Thanks for reading

    Debi 😺

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