Hope it's over

[BarbJ1989]

I am currently recovering from my third bout with Meningitis. The first time was Viral in 1998, then Bacterial in 2008 and I spent 3 days over Christmas 2014 in ICU unconscious. I am home recovering. All 3 times were exactly the same for me. Extreme headache onset instantly with nausea. Fever the first two times but no fever or elevated white blood cells this last time. I am 51 years old and no one seems to understand the after effects that I'm dealing with. Has anyone else had it multiple times and if so, have you found any reason as to why?

[StrawberryCream]

Hi. Am sorry to hear that you have suffered 3 bouts of meningitis. I would consider twice to be unlucky but I think like you if I had it 3 times then I would be questioning why. I think there are two or more people on here that have had it several times and have been diagnosed with Mollorets but I don't know what the criteria is for that. Also I think there is also sometime a cerebral spinal fluid leak through the ear but must let infection back in too from a minute hole I think in the skull bone that also has been responsible for some people getting it more than once. But I might be completely wrong!

Why don't you give the Meningitis Now helpline a call as they may have some info as to why?

Best wishes

[JustinP]

Hi Barbj, gosh, what a shocker, and poor you! As StrawberryCream says, twice would be unlucky. Three times, well, I’m not sure I know a term for that, and hope that comfort from this end can help bridge that ignorance. I’m wishing you well and sincerely hope that your trinity is the end of things.

I’m one of those Mollarets guys that StrawberryCream refers to, though my diagnosis is pretty recent and I’m still in the process of understanding what it means for me. Like many, I’ve had to become my own expert as the wider medical profession’s empiric appreciation of this condition, and men’ and post-men’ more generally, is fledging, shall we say. Maybe Jonathan and others can jump in here as they've more years under the belt than I on the recurring VM front.

That said, you’ve clearly had both strains of men’ and I’m not sure if my and other Mollarets sufferers symptoms, history and prognosis is perfectly up your street. However, it may be helpful to exclude things if nothing else, and there may be some more general synergies which translate over. Before I go on, I did read a case study of a terribly unlucky lady on the Meningitis Now website who had BM and VM together, and again as StrawberryCream says, that’s also a great place to start your own research, support and investigations along with the anecdotal feedback from this forum - in the sense of patient experiences, rather than clinical trial data, of which there is very little. The web can help to some extent with the latter but the data is pretty scant, and the web generally is a mixed blessing on the research front. Each time I look I get convinced I have something else!

For me, I got VM first time in Jan 2012 for a birthday present, a ‘present’ which just keeps giving I’ve had 4 or 5 bouts since then (it’s hard to count them as they can merge into each other) of varying severities, the most recent requiring hospitalisation and a carbon copy (bar being far longer in duration to recover from, or maybe I know better now) of the first time on the wards. My nemesis is the varicella virus, or so I think. My two trips to A&E and stay-ins have coincided to the week of my kids having chicken pox, and from past experience of severe shingles as a kid, it’s pretty much all I have to go on. In any event, the odds are (as may be the case for those Mollarets guys suffering from the HSV way of inducing bouts), the virus is within me and it’s about controlling its recurrence and exposure to those with a high level of the virus, which seems to self-trigger the condition. (About as much is known on varicella resurgence as men’ generally. I'm not up on HSV that much though.)

That’s half the story for me – the bug end of it. Overall, my disposition to VM bouts is largely dominated by mental exhaustion. Not the ‘having a hard week’ kind, but the chronic variety which would fall into the category of bad life-style choice. The high end excessive stuff which in hindsight is pretty obviously going to end in tears.

As for original predisposition, I had a serious brain injury about 13 or so years ago which may have left hairline fractures in my skull, kinda like having a breach in the castle walls that the meninges-battlements can’t handle when my nemesis is in full swing, and my defence-soldiers are exhausted. So, it could be a collection of factors working in series, or the virus and exhaustion operate in parallel but both are needed to take me down. Either way it’s all about control for me now, as the post-men’ elements bridge one bout to the next so the defence-soldiers never get back to full strength before the next onslaught happens. Still, at least I know right which is a really good thing.

The caveats to this are, having been recently diagnosed with Mollarets (by chance I should say) and on anti-virals daily now, I may be able to control it (the bug-end) better going forward. Only time will tell and I’m due from past experience a fresh bout in about a month or so, though have been making serious life-style choice changes recently. Also, I’ve had some cranial x-rays in the past, various CT scans and MRIs and nothing yet has shown up on the fracture front. That could be a red-herring then, too fine to show, in the wrong place...the list goes on. I take solace that my GP who has looked into this out of curiosity has found some small amount of evidence that prior head injuries can lead to harsher men’ experiences (both BM and VM). But, academics and scant data aside, it is what it is for me and management will get me to places that curiosity won’t. That is, able to find a way to live with it.

Please don’t think any of this means it’s not over for you. This is just my story and prognosis (repeat bouts, which I may be able to avoid/reduce with life-style changes and meds). Also, you’ve had both BM and VM which may indicate nothing at all to do with Mollarets, though predisposition has to be up there on the investigation list strongly I'd say. You may find it hard to get to the bottom of why, but maybe easier to understand the when and how, which is really what it's all about.

Despite the medical profession’s general lack of understanding, there are gems out there and that’s surely got to be one of the first places to get busy getting a handle on things. For causative issues, and a degree of management advice (if only for post-men’ symptoms generally), I’d start myself with a neurologist on the specialist front. You may not get much back, but at least then you’ve excluded it. Alongside or after, some (Bonkitty, if you don’t mind me calling you out) have had great success with a chiropractor, and many others swear by cranial osteopathy for treatment. The former may help with diagnosis if you think that you have a structural predisposition, and the latter, or other complementary therapies, could offer ways to handle after-effects and possible recurrence. (I'm due to start my own treatment there soon so have no personal experience to speak of yet.) These are just my thoughts though, and your GP (again, if only to exclude that avenue) is maybe a good place to start medcially, referring you out as you both agree, along with a deeper understanding of what makes you tick physically and mentally, and what balls from left field you may have incurred over 51 glorious years of walking the Earth

The VM + BM side is very interesting to me as an ex-scientist so I’d love to hear back how you get on. Today could be the start of a great journey back to ‘full’ strength. I sincerely hope so. Even better, I hope that you’ve just had some rotten luck and have rolled a 1 three times, without any connection, and that’s the end of it. But StrawberryCream has it right I think. Definitely worth looking into in more detail, and it sounds like you’ve got the appetite too. Good luck, and remember, you’re not alone whatever you find out. There’ll be synergies with others here, and we can all learn from each other and feed that anecdotal evidence that keeps us all going, and which the medics I believe are starting to see as the light in the dark.

Give the Men Now guys a call too if you think it’s for you. Personally I’d say there’s nothing like knowing your defence-soldiers have a back-up team that have seen Humpy Dumpty fall before. (No reference to you personally by the way just the original cannon that gave its name to the nursery rhythm.)

Thanks for posting and be well my friend. Gotta go, the kids are starting to scream and I’ve not yet found a solution for that! 

PS, just seen a Red Admiral flying round my room. That's got to be a sign of a good day!

[StrawberryCream in reply to JustinP]

Hi Justin

Thank you for providing the 'packing' around my vague possibilities! Am pleased to hear that you have now got an explanation for your own repeated VM episodes with the Mollarets diagnosis. Not that it makes it any more tolerable knowing that further bouts can happen at anytime! I did read somewhere that sometimes the hole in the skull can be so tiny that it doesn't show up on scans because if it does then I think they can plug it to try and stop the meningitis repeatedly happening??

I too had VM in the 1990's and then BM & S in 2011 but I at the moment consider that the 'bad luck' situation. Obviously deep in my mind is the - is it going to happen again!

I empathize with you bout the noisy children as I struggle with that too although singly but my head just can't tolerate it anymore!

[JustinP in reply to StrawberryCream]

Hi StrawberryCream

My pleasure. I’m still working everything through mind you and just got back today from seeing my new neurologist. Well, that was a mixed blessing. Just when I thought I was starting to get somewhere, he’s suggesting I don’t have Mollarets, I should come off the anti-virals (“as there is no evidence they actually work” :S)) and see what happens so I can then have more lumbar punctures to identify if it’s a viral cause or truly aseptic (as SilverCharm says), and no bugs can be identified.

Whilst resisting the urge to question his parentage and suggesting a few anatomical things he may like to investigate (at least one with a nominated parent), I managed to get a referral to an infectious disease specialist and to have a new MRI to see if there is a ‘hole/fracture in the skull’. He agreed that we’re unlikely to find anything as you say, but it’s worth a go and I’ll keep an eye on granmakate’s blog on skull base repair in case I’m headed down that road. Interesting how so many of these lines of experience start to cross over!

But as for giving up anti-virals at this juncture, there’s no chance I’m going there. I’d rather join the subculture under my cooker as they look to be having a better time of it! (Chris – If you’re reading, I’m taking your advice. No ‘drug holiday’ for me anytime soon.)

VM and BM! Sheesh, that’s gonna cause a lot of those recurring doubts. SO hope it’s ‘bad luck’ though I strongly believe that by sharing our thoughts here we’re more likely to come up with routes for us all to investigate from those that know what they’re talking about. (I do really appreciate the medical profession, but today tested that to the limit. Apparently, my repeat episodes could also be migraines exacerbated by ibuprofen resulting in meningeal-like symptoms!! I should coco. I was aware that Ibuprofen can cause a bunch of side-effects but a mimic of meningitis, erh, guess we talking about that other meningits where you go to bed for a spell and return to work two weeks later. Have had those bouts, but they don’t usually result in going to A&E in an ambulance...)

I know, those noisy nippers God love ‘em. They’re why I keep going but crickey, finding another way to make having young kids more painful is not what the doctor ordered for us, right! And one is just as bad. The twins in full stereo can cause a constructive interference wave that rocks my world, but my 4 year old is enough on any day to take me over the edge, and the first knows all the buttons right!

Maybe we should start another post on how to handle the noise of our dearly beloved ones. (Though, they have put up with me on my ‘bear days’ so I kinda figure it’s rough all-round). If we do, maybe Missy, Juanita, Chris and others can help us understand the skills required to handle a room full of lil chaps/chapesses. And if I think I'm suffering, I take my hat off to anyone thinking of going back to work in such an environment. True heros/heroines.

Be well and I’ll keep you posted how that hole-in-the-head thing maps out, though I hoping it doesn't if you get me. X

[BarbJ1989]

Thank you so much for all of the great information. I have an appointment with my neurologist on Monday and the Infectious Disease Dr on the 21st. I will keep updates posted as to everything I find out. My head is still very foggy and still quite weak, but considering everything, I'm blessed to be alive.

[SilverCharm]

Ask your neurologist to put you on Cerafolin NAC. It is a vitamin that has been reconstituted to help heal neurons in the brain. My headache frequency and intensity and location has changed for the better since I started taking it about 60 days ago.

Sorry to hear about multiple bouts and being sick over Christmas is no fun. I did that two years ago. From the 23rd of December 2012 to January 3rd, 2014 with Aseptic Menignigits. (Bacterial unknown)

Good luck.

SilverCharm

[Hidden]

I've now had viral Meningitis 3 times in the last four years.

I have what is called "Mollarets" Meningitis where I can get recurring bouts of the disease.

Each time I am taken ill I have had to spend two weeks in hospital on IV anti-virals.

The first time I was ill, I also had encephalitis which caused some nerve damage which has left me with

a weak left arm, my dominant arm, and speech problems.

I also have permanent head pains which, so far, the medics have been unable to treat.

They have tried numerous treatments, including acupuncture, which did give some brief relief.

I just go from day to day hoping not to become ill again.