Still recovering from my 2nd bout of Meningitis

[lyn17p]

Hi everyone.

I was rushed into hospital at the end of November 2016 with my 2nd bout of meningitis in 2 years.

After the first bout I was left with a constant headache, fatigue, forgetfulness etc.

Now it's even worse.

I'm 53 but feel so much older.

I also suffer from pernicious anaemia and colitis/BAM .....all auto immune illnesses. My gp has recommended I try to stay healthy ...easier said than done.

Both bouts of meningitis followed infections that were being treated with antibiotics but wouldn't clear.

I was in hospital both times for just over a week on IV antibiotics and pain relief

But I've found the after care really appalling

I was due to have Botox injections for the headache just before I went down with the 2nd bout so had to cancel. But I'm going to go ahead with that again to see if it helps with the constant headache

I'd love to hear from anyone else who has had meningitis more than once!

I'm just scared I'm going to get it again as I've heard that if you've had it more than once, you're more prone to getting it again 😟

[bobbyvere Volunteer]

Hi Lyn

I, like you, had meningitis in my late 50s. Although I have not had it again, it is a constant worry if I get a lingering cold or ear infection. I suggest you ring Meningitis Now (UK 01453 768000) and have a chat to the nurse on duty. I am sure she will be of help.

I do hope you start to feel well again soon.

[lyn17p in reply to bobbyvere]

I rang them when I came out of hospital. The lady I spoke to wasn't much help to be honest. She said she hadn't heard of anyone getting it twice but that it wasn't unheard of. Maybe I'll give them another call. I might have just been unlucky.

[StrawberryCream]

A minority of people do get Meningitis more than once but it is usually viral and can be a condition called mollaretts and it is rare. There are a few people on here who have mollaretts. Did you have viral or Bacterial Meningitis? I assume Bacterial because you mention antibiotics rather that antivirals being given. If you get Bacterial Meningitis more than once it is again very rare and I think it would usually be a different strain because when you had Meningitis the first time, that would have left you with some immunity to that strain. So unless your immune system was compromised so that you lost that immunity (e.g. having chemo) the 2nd strain of bacterial meningitis that you contracted would, I think, be a different strain and you very unlucky!

[lyn17p in reply to StrawberryCream]

Thank you for replying.

I can't have a LP so they treated me for both viral and bacterial. The first bout I also had anti viral meds but they weren't given this time just 2 different antibiotics .

I mentioned Mollarets to my GP but he'd never heard of it. I'm not seeing my neurologist until May but I'm going to mention it to him.

My GP is willing to try anything to help boost my immune system. He's offered me the shingles vaccine and recommended I have the flu vaccine next September ( I've refused it the last few years as I don't think it works) .

My immune system is compromised ....I have other auto immune conditions and my gp is concerned I could contract meningitis again if I pick up an infection.

[Vespalover]

I had VM 4 years ago. It was from the shingles virus which I had at the same time. They assumed the shingles broke the barrier to the spinal fluid. Once any virus can cross that threshold there is a chance it can do it again.

I am on a daily dose of acyclovir to try and keep the shingles virus under control as it is always in the body.

I suffered re lapses for a week at a time but none as bad as the first.

I changed my diet and try to avoid sugar. I notice now when I eat it I swell up so clearly my body is fighting the sugar and therefore not fighting viruses. Same with alcohol. So I reckon that I need my immune system to fight bacteria and viruses and not stuff I give it to fight.

Since my diet change my headaches have reduced and I feel a lot better too!

Hope this helps?

Ana

[lyn17p in reply to Vespalover]

That's really interesting Ana. My gp wants me to be protected against the shingles virus.

It seems no one knows really why I'm susceptible to meningitis. But I'm so scared I'm going to get it again. I'll mention to my gp about the acyclovir.

Thank you

[Kimmie745]

Hi,

I just got home from hospital 2 days and I'm in recovery still from VM. This is my third third time in two years. I can really get no answers on why this all of a sudden started and I'm really scared I'm going to just kept getting it. So, I understand your fear and would like to say I hope you never get it again. It's frustrating because they really haven't told me anything I can do to stop getting it. I hope they can come up with something soon that can like kill VM. Anti viral medication does help so thank goodness for that but the pain and pressure that has to be endured during episode is crazy. My doctors debated on giving me anti-vitals daily even after I recovered to maybe preventing it from happening again but then decided against it and said in the long run that it could be more harmful to take daily. I guess because I could build a tolerance Up to the anti viral medication from how I understood it. I was just told by one of my docs to try and keep my immune system strong. So I'm going to research that. Thank you for letting me share. It is hard for so many reasons to have VM. I just wish you the best. Thank you.

[lyn17p in reply to Kimmie745]

Im currently looking into a link between the shingles virus and vm.

It looks like there could be link.

meningitis.org/disease-info...

[kelpie25]

Shingles is caused by varicella zoster virus - the chickenpox virus. Once you've had chickenpox the virus remains dormant, and can in future years cause shingles. It can also cause viral meningitis - which I had and hence needed 10 days of IV antivirus. At the same time, it caused a facial palsy (Bell's palsy) from which 90% recover fully. I'm one of the other 10%.