Has anyone had meningitis more than once? How do you cope?

[ahsatan89]

Hi, I was wondering if anyone has had meningitis more than once? I had meningococcal disease when I was 4 years old and lost most of my hearing in my left ear . I also had it when I was 9 years old due to having the vaccine, this form was viral meningitis but I was still hospitalised. I also lost my twin sister to meningococcal meningitis when we were babies. It sounds silly but this disease terrfies me as I have children of my own now. I guess what I'm asking is has anyone had it more then once? And has it affected you mentally because I feel like this is one disease that I know everything about but I'm still terrified itll get me in the end. Probably sounds stupid.

[Trabre]

Doesn't sound stupid at all. I have had meningitis 6 times. First time in 2005.

I cope the best I can. I have 3 daughters, they have never had it. Just keep you and your children as healthy as possible. Good diet, suppliments, exercise and outdoor time for natural vit d.

[Veba in reply to Trabre]

I get it in the flu seasons. I always know when it's coming on and sure as eggs the test proves it. My go to now as it's pathetic being in hospital I reach for anti viral and it seems to help somewhat, (along with pain killers and anti nausea medication). Maybe it's luck, but instead of the out of action for weeks it's lessened it. Ask your doctor. My first affliction of Encephalomyelitis affecting both the brain and the spinal cord was thought to be a mosquito bite or flu virus. I was out of action and in a coma for part of it with the pain and paralysis for 6+ months I don't advocate taking it without advice from a doctor, but do ask. I just advised my Dr and he didn't disagree.

[peechesgirl in reply to Trabre]

Wow! 6 times! I’ve had it twice and hope that’s it but it is always in the back of my mind. Do you have a specialist who understands? Do you see a neurologist or pain management doctor? My general practitioner doesn’t get it. Also anyone else here in the US? I know most people on here are from UK.

Thanks!

Anne

[Trabre in reply to peechesgirl]

I'm in the US. Not many of my doctors understand. I have one some what willing to help but not intrested in learning much about. I've been to neurology and infectious disease but they were pretty clueless. I dont have any pain management. I guess I've just learned to deal with it. I try to keep my self as healthy as possible through diet, exercise and suppliments.

[peechesgirl in reply to Trabre]

Same for me. I did see an infectious disease doctor who said my post meningitis pain is just normal aches and pains everyone gets. I did see a neurologist too who said he had never seen a viral meningitis case with after effects. I had the disease twice with the first time being a case of encephalitis as well. My infectious disease doctor said I wouldn’t get it again, but 3 years later I did. I am like you and do what I can to stay healthy. I’ve had pain in my back since my last bout which makes exercise more difficult but I try. I’ve been very worried about the covid virus too possibly being a trigger. It is frustrating not having a lot of understanding about the pain and after effects. Stay safe and healthy!! Btw I’m in southern CA. Where are you located in the US?

[Trabre in reply to peechesgirl]

Are you in the mollarets meningitis group? We have all had it multiple times. Two times ago I had sepsis with it. I'm not overly worried about covid.

Do you take daily antivirals or keep some on hand just in case you feel it coming on ?

I'm in Florida by the way.

I've also had shingles 3ctimes in a year.......

I'm in the process of being seen by an immunologist to see if there is anything wrong there. I asked my dr to give me a referral.

[Keely-S]

Hello, am so sorry to hear what you have been through especially losing your sister too. It’s completely understandable why you feel the fear you do. But I understand too how hard it is living with fear. I don’t have any great solutions, I’m struggling myself. I recently had meningitis and encephalitis for the second time, I’m 44 now, first time was nearly 3 years ago. It was bacterial the first time and viral the second time. Both times I was very ill and in hospital for weeks. I am home now and trying to recover but I am feeling far from better to be honest. But at the same time I am thankful, because I know things could have been a lot worse. I couldn’t believe it when I became apparent in hospital that I was ill with it again, it was very scary and of course because of covid I was there alone. I am feeling very anxious a lot of the time and I have a deep fear that now it’s happened twice it can definitely happen again. I guess all any of us can do is take one day at a time and be thankful for each day and take care of ourselves as best we can, sometimes I find it harder than others to keep that in mind. Yoga and meditation has always been a massive help to me. I can’t do yoga right now but am trying to make time for daily breath work.

I hope you and your family stay well and take good care x

[Veba]

You are not at all "stupid" for posting your experience, it's horrific. I lost my nearly 2 year old sister to bacterial meningitis so it was scary for me in 1986.

In 1986 from either an influenza virus or mosquito bite, I contracted - " Encephalomyelitis is inflammation of the brain and spinal cord. Various types of encephalomyelitis include: Acute disseminated encephalomyelitis or postinfectious encephalomyelitis, a demyelinating disease of the brain and spinal cord, possibly triggered by viral infection" - this sent me into a coma the pain was so bad I was 3 months out of action, perhaps I just got used to it. I have never fully recovered (constant paresthesia and pain) and since then I've have had a severe bout of measles in 1992, then it was discovered I had autoimmune - Sjogrens and all the lovely things that it brings, then I had a hideous rash from sun exposure and it was biopsied to reveal I had cutaneous lupus and all it's annoyances, then every so often I know when it's coming on now, recurrent aseptic meningitis generally during the flu season. The last bout left me with the most debilitating paresthesia far worse than ever before and now I can't wear heels of anykind, I have to watch carefully where I put my feet so as not to trip over. The last lumbar puncture they broke the needle off in my spine and let all my spinal fluid spurt over the operating theatre as they refused to allow me to lay down even with the excruciating pain in my head and neck. They tough it to be funny, I didn't think it at all funny as that doubled down the headache I wanted to rip off my head as I did in 1986. I deal with the viral meningitis by myself now so as not to have those registrars practicing their needle skills on my person. Oh to colours they left trying to get my blood gas and still failed.

I would rather have a bout of influenza any day in place of meningitis. (I had Hong Kong flu in 1968 and was out of action for over 6 weeks not in hospital just at home and Mother had it too and life just went on as usual but was never in the pain meningitis gives.)

Wouldn't it be fabulous if the medical field made a huge effort and started gathering data and working together to solve this disjointed but very prevalent affliction on inflammation of the brain and spine and the nerve demyelination.

I have precancerous skin areas on my face that get more attention than the encephalitis and meningitis that has ruined my life. It is the worst pain imaginable so going into semi consciousness is the only way to escape or indeed a full on self induced coma.

[Earthfox20]

I had viral meningitis in 1994 when I was 48 and made a full recovery which took 6 months. At 72 I had Bacterial Meningitis which has been devastating and hasleft me deaf, immobile, with impaired eyesight and doubly incontinent. I also have extreme neurological discomfort in my legs and body. It’s over two years now and I do not anticipate any recovery. My mental capacity has also declined and my short term memory has got worse.