Chronic Meningitis? Anyone know much about it?

[NMC70]

Hi all,

I am very fortunate to be recovering from chronic meningitis, which I had late 2011. Most of 2012 was a tough slog, but I've been fortunate to improve throughout the year and head into 2013 very optimistic. Had some complications that delayed my recovery, but seemingly mending well now.

While I ask my doctors plenty of questions, Chronic Meningitis seems to be a fairly rare type of meningitis and there isn't much I have learned. I haven't yet seen any posts anywhere about fellow patients, I really hope to do so through this post.

I have lost my sense of what it is like to feel 'normal' but my headaches are much less frequent now and I am gradually building up some strength and fitness through regular visits I the gym. I do have neck pain, which extends up the back of my skull and I always wake up worse than the night before when I've gone to sleep, but then gradually improve each day.

Very interested to make contact with anyone who has had, or has chronic meningitis, or who knows more about it and could steer me towards some resources. I am seeking to better manage my issues, understand my longer term prognosis and generally get a sense of where my experience lies relative to others.

Thanks for reading this post and I hope you or your loved ones make a full recovery from meningitis. I'd be happy to share my own experiences with anyone who is likewise seeking knowledge on related topics, ie Viral, Aseptic or other types of related Meningitis.

Cheers

[Jeffery]

Hi Cheers, I have never heard of Chronic Meningitis, however any symptoms that last longer than 6 months are considered chronic. I, too, had bacterial meningitis in Feb. 2011. I was in a coma for about 5 days and finally had aggressive therapy including 2 surgeries to the brain up through my nose. I am left deaf in my right ear and with bilateral vestibular imbalance and I still have some infection up in the sinuses. Apparently I had had the infection, which was a streptococcal in nature, for a lengthy time as it was all through the facial bone and lead to a hemorrhage of the brain. The neurosurgeon and a surgical ENT together scraped away the infection and patched the bone with cartilage from my thigh.

I still get neck pain and headaches. I still have to rinse my sinuses daily with sea salt solution and antibiotic ointment. My dizzy Dr. sees quite an improvement in my gait from where I started from. Is it perfect? No. It also worsens on fatigue. So I don't stay out too late. I also rest when tired and I don't over commit myself. I still am able to drive and I am helping my husband to raise a grandson who is 8 and full of beans. I have many limitations due to the balance disturbances and other chronic health issues but I really try to focus on what I still can do and not on activities that are no longer an option for me. This has been quite a humbling experience as I have always strived to be independent and now I have to ask for help. I still struggle a bit with that and sometimes I feel down about it. It could have been much worse. God Bless you Cheers! Kind Regards, Jeffery

[NMC70 in reply to Jeffery]

Hi Jeffery,

Thanks for your reply. Looks like you've had a very tough time and you sound inspirational in the way you have responded to your illness. I wasn't in a coma and didn't require surgery so admire greatly your strength and courage to get through those additional challenges.

Interesting that you mention your sinuses as that is something that I have some issues with, particularly in the morning but haven't really sought to do anything about as for me my head and neck are more dominating my thoughts at this time but will raise at my next appointment.

Good luck with the 8 year old, I can relate, we have 3 kids age 6 and under and for me that has been the main motivator to get better and was particularly hard when for some time I couldn't help my spouse for some time with simple things like picking up the crying baby.

Thanks so much for sharing your experience as I am sure that in addition to me, that the will be a number of other people out there in cyber space who will read it soon or in the future and your experience will help either with some missing knowledge or seeking inspiration.

Kindest regards and prayers and best wishes for further recovery,

N

[Canada3]

Interesting reading the above blogs, neither have I heard of chronic meningitis but as a former health porofessional, we considered most things chronic after 2/3 months, so I guess by that understanding I also had chronic meningitis. The symptoms do as far as I can tell last a long time, and even if some people think they are recovered, they sometimes have a relapse so maybe they werent recovered. Does that make sense? I too have right sided neck and head pain, also over my face and sinuses. I had my sinuses examined by an ENT surgeon and he said they were pristine, so I assume therefore that this awful pain and horrid sinus liked sensation is referred pain from my neck and head. It is seriously worth seeing a cranio-sacral therapist or a gentle hands on physiotherapist who may be able to alleviate the facial pain,at least then you can rule that out for the cause without doing any damage! The other thing to consider is the roots of your upper teeth, just to make sure there is no problem with them. I know this all sounds crazy maybe but as we dont seem to have any joined up medical system (each specialist dealing with a different area) but no-onewith "helicopter" vision to pull it all together. I feel I have had to rule things out in order to get to the actual problem and maukybe its something the GP. and certainly hospital doctors dont have the time to do.. It does seem to be a pattern that often people talk about pain at night in bed, I guess lying down seems to be the irritant, sometimes just getting up and walking around alleviates the headaches for me without resorting to medication. I am now 3.5 years so I guess I am definitely chronic, but feel I am recovering more and more each week. Thank Goodness. Hope you feel much better soon.

[daffodil]

Ineteresting post -maybe MT could help you learn more.Asw ell as having bacterial Meningitis(jan 2008) I also have ME.I was at that time given a lumbar puncture to rule out chronic Meningitis and had asked what that was - neurologist just said chronic inflammation in brain and spinal chord! Like the others have said,I guess we are all suffering chronic Meningitis if we suffer side effects?It may be Mollarets,which I have read a number of forum members speaking about - ie repeated attacks of Meningitis?

Gald you have found tyhis forum and hope you find support.Take care.

[Canada3]

I recently read a very interesting article when looking up the book Re-booting your Brain" written by a survivor of a brain aneurysm. The article is called "a letter from your brain" and I think was written by [e-mail] and produced by the "Brain and spine foundation". I thought it was really well written and food for thought for those of us who are trying to live life as we did before and not managing terribly well post meningitis I was recently clearing out some CD's to send to the charity shop and having "one last play" of several tracks before dumping the CD I found myself very tearful, the songs were not particularly sad, but they evoked such sadness in me. Does anyone else have this problem with music post meningitis? I know Oliver Sachs has recently done some studies with music in the brain but not sure if that would explain it either. I imagine its a grief or mourning for the life I once had - therefore reading the "Letter from your brain" article was even more poignant, hope you also may find it so.

[Catiuska]

Please, i need help, I have been suffering with continuos headache, every day the whole day for the last 6 months, I also have tingles in my hands and cold sensation in my nose , the headache is not that bad when I go to bed... I did MRI and scan,I have been taking medicines for migrane, I go to the chiropractor and acupuncture every week and nothing work, I have to take every day medicine for migrane to feel a little relief but the pain is there! Do you think this can be meningitis... I feel energy but the headache is so bad that I just want to be in bed... I just want to know how do you realize it was meningitis ?

Helpppp

[NMC70 in reply to Catiuska]

Sorry to hear about your headaches. My understanding is the most likely way to confirm meningitis is via a lumbar puncture. In my case, doctors did not suspect meningitis and it was urging by my wife that a doctor agreed that my symptoms did resemble meningitis which in turn was confirmed via a lumbar puncture. Once a doctor is thinking meningitis there are a number of other tests that can lead them to a proper diagnosis. I would hope you can persist with your doctors and suggest they rule out meningitis. I have found this site useful with my recovery

m.meningitisnow.org/

Best of luck

[Emmajo97]

I THINK I have chronic meningitis. I tested positive for it through a Pap smear a year and my doctors had no idea what to do. Since then my headaches are getting worse and same with my vision. My mind just always seem foggy and I can’t think when there’s any noise around. My body always feels run down and I have the absolute worst back pain for being only 20. I’m just looking for some insight to see if I should ask the doctors to look more into it.

[NMC70]

Hi Emma. Sorry to hear about your condition.

You might check with your doctor, my understanding was meningitis was only able to be confirmed after a lumbar puncture (but I’m no doctor).

My diagnosis was delayed because I wasn’t forceful enough and was dismissed and pushed off. I had stiff neck and was having near constant fevers over a long period - with only the lumbar puncture finally confirming my diagnosis.

Good luck - I would try and get medical help as soon as possible.