I have been diagnosed with benign recurrent aseptic meningitis (Mollaret's Syndrome). However mine is not caused by Herpes Simplex 2. Therefore, there is no treatment for my illness. I am looking for any advice, specialists, or research studies. I have had 5 attacks in 2 months. Three of which had led to extended hospitalizations. It is impossible to maintain a normal life this way. Please help!
Aseptic meningitis is usually a harmless disease, and people usually have full recovery in 5 to 14 days after symptoms start. Doctors often will recommend bed rest, plenty of fluids, and medicine to relieve fever and headache. More information from the Centers for Disease Control:
You have obviously never had asceptic meningitis. I would never describe it as "harmless." I had it over 150 times over the course of 25 years and every time I got it, it was worse. The symptoms and feeling are the same as if you have the viral or bacterial types. The only solace you have is that you know it will remit. Meanwhile, you feel like you are dying. That, over time, is disheartening to say the least. I lost many days at work, couldn't plan social engagements, and/or many other things that most people take for granted. I would get it twice a month, meaning that there were very few days during the month that I felt well enough to lead a normal life. Mine was caused by a little known reaction to NSAIDs. I hope others who have aseptic recurrent meningitis will examine their own use of NSAIDs. They could be the culprit.
Id' suggest that you contact the CDC with your specific questions. They should know where to direct you and to recommend practitioners or associations that can help. Alternatively, you can request more information from these organizations:
I am four days into my sixth episode of Meningitis. The headache and back pain is bad enough, but the spinal tap just makes it all worse.
My attacks were more spaced out than yours; I have gone from three months to 5 years between attacks. Since there is no treatment, other than pain management, I choose not to stay in the hospital and simply go home with my painkillers and sleep for a few days until the symptoms eventually fade away. They test me each time for Herpes, AIDS and other immune deficiency disorders but the results always come back negative.
In my case, four of the episodes happened during very stressful periods, i.e. university exams and a new, very stressful job, but since the other two happened while I was returning from vacation, I'm not sure there is any correlation.
I have found out more information about my condition from the internet than I ever got from my doctors. In fact, the last two times, the neurologist who was on duty at my local hospital was not at all aware of Mollaret's syndrome until I told them about it.
Good luck with your research on the net. There is not a whole lot of information available, and unfortunately, no one can really tell us what makes us candidates for this syndrome. There seem to be too many variables.
my husband has been suffering with chronic meningitis of unknown etiology since Jan 2008, (1 yr, 2mos). His meningitis symptoms are weekly, He always has a headache, 3 to 4 days a week they are severe headaches, stiff neck and fever/chills. He has the dizzy/heavy headedness, fluctuating hearing loss, hearing sensitive and eye blurriness, auras and floaters all the time. There is no cure, however, the only treatment is steroids and pain management. In repeated reviews of his spinal fluid, his doctor advises he has a text book case for chronic meningitis. Has anyone heard or know of anyone having this type of meningitis?
My first episode of viral meningitis was in the early 1980s. 25 years ago there was very little known about it and hardly an internet on which to research. I continued to have episides once or twice a year for years. More than a dozen total. First one knocked me out of life for a few months. Last episode that I can confirm was in 1997. In 1997, I recovered within a week. My doctor had told me my immune system would do a better job each episode, and it has. I continue to periods of a day or two where I feel very sick, but not much worse than a bad case of the flu. I had some specialists tell me that meningitis doesn't recur. Duh, really? Why have I been hospitalized and been confirmed with lumbar punctures more than once?
During my worst periods, I had a great deal of blood withdrawn and tested. Nothing.
No magic in my recovery, other than a complete change of lifestyle. Must avoid chemicals as much as possible. This means no perfumes, scented products, processed foods, synthetic fabrics, and so forth. My worst period was when I worked in a specific building; who knows what was there triggering me. Once I detoxified, I was able to tolerate some stuff but when I get sick it can usually be linked to an intensive exposure to a chemical.
I continue to maintain a very healthy diet, continue to exercise despite the routine pain, and I continue to take one day at a time. I don't live in a city and we built a healthy house.
This is just what it has been for me. My doctor calls me a canary in a coal mine.
Ok, there are people like us out her who suffer from this darn recurrent aspetic meningitis. I too have had it at least three times. Hospitalized all three times. Went to Mayo Clinic for answers. They told me my recurrent meninigitis is linked to my chronic migraines. There is no specialists out there to help. I do not have herpes, or any known cause for this after many many tests and procedures. There has got to be someone who can help.
Just a quick question....did any of you had the meningitis vaccine and were you healthy prior to the vaccine if you in fact had it? I ask because my 15 year old daughter had the meningitis vaccine last September and has had recurrent "viral" illnesses almost every 4-8 weeks since. Illnesses always look the same...fever, headache, sore throat and neck stiffness/pain. They resolve in about a week, but knock her out completely when present.
The meningitis vaccine only helps the bacterial Meningitis. It will not help viral or aseptic or recurrent meningitis. I asked hoping too that it would stop the reoccurence. Too bad for us! Momto3girls, did you daughter have spinal taps to verify viral meningitis? What doctor are you seeing regarding her getting viral meningitis after the vaccine? A Nuero or your regular GP?
She has not been diagnosed with anything specific as of yet. We are just starting to develop a theory of what is going on. I took a perfectly healthy girl in last September to get this vaccine, and she has been sick intermentally since. The symptoms and duration are always the same, and she has tested negative for strep, mono multiple times, and CBC reveals nothing of significance. I find the timing of the vaccine and her illnesses suspect and am trying to find a reason why.
Wow, I can not believe that I have VSM again. I am a 45 year old woman, I had VSM 3 times prior to this. So I don't need a spinal tap to know what I have. All the past bouts where within a 6 year period starting at age 16 and my last at age 23.
A life time has passed since then, each bout was less severe than the first, by the third time I didn't go in for a spinal tap, just ibupropen and rest. I do not have HSV, I do not get headaches. I have been under a lot of stress this past year. Another wierd thing I have that I can not find answers to is a chronic, recurring itch on my arms (just my arms). I can't see anything unusual about my skin. This itch went away for 2 years but has returned in the last 7 weeks. It responds to antihistimines.
Are these things related anyone?
I eat a very healthy diet (minus the 1 cup of coffe each morning with a teaspoon of sugar). I prepare almost 100% of our food from scratch. We only consume 100% grassfed meat, diary, eggs, etc all raised by a local rancher we know (animals don't get any healthier than this - totally "beyond organic"). Almost all vegies are local, fresh and "beyond organic". We are thin and get good exercise and are active. I don't use lotions, or cosmetics, no deodorant, no chemical cleaners, no dioxins. My work envirnonment is not too bad and I work in bouts and not very much). I use Dr Bonners Soap.
I do not have any health issues other than the itch and now, apparently, recurrent VSM. OMG. I am starting to get worried. What could all this mean and how do I get better?
A detox would be good start, does anyone know of a place where I can go for a detox program that will not force veganism on me?
I've been dealing with what appears to be Mollaret's for 2 years now. My experience is almost exactly 2 weeks long each time with fever, intense headache and severe neck pain. For almost the entire first year it was 2 weeks of "flare up" followed by 3 weeks off. 2 on, 3 off, etc. I had upwards of 60+ tests (almost 30 blood draws), CT scans, ultrasound, xrays, urine tests and other stuff and out of 8 doctors including 3 specialists, none have ever come close to a diagnosis. All I get is "It's a virus, it'll pass".
Each round is less severe than the previous round. After the 1st year the symptoms started occurring less often. Now I'm at about 2 months in between flare ups.... but the flare up is still 2 weeks long. At first my fever was 103-104, now I rarely hit 101.
Other than 4 hours in the emergency room during the first round I have simply just lived with it. In fact, the first round I spent 2 weeks in bed. The second time I got it my wife's advice was "Just suck it up." As much as I hate to admit it, it was the best advice I've received. I have endured each bout since without missing work or other functions... and now knowing that there is nothing else I could be doing for it makes her advice even more accurate.
I'm currently in a new flare up that started about a week ago and about 4 days ago while researching for the umpteenth time I stumbled across Mollaret's. The clinical description of the symptoms so describes what I have that I consider it a near certainty. Unfortunately I will probably never know as I do not want a lumbar puncture (my grandfather died while getting one). Since the doctors have excluded everything else and have long given up on me I'm going to dump my research on them and see if they concur. At this point I'll settle for a diagnosis by exclusion.
The only unknown is what might be causing it? I've been tested (negative) for all the various viral sources I've seen listed and have never had any herpes sores, nor do I lead a life style that would have gotten be infected with herpes. The only possibility I can think of is herpes zoster... the Chicken Pox virus. Once you have it, it will be (normally) dormant in your nerves the rest of your life. If it does flare up it usually results in a case of shingles... which I had last decemeber. Coincidental? Absolutely. But still something I'm considering.
I too ran across Mollaret's and proposed it to my doctors. But still, I spent years trying to find the cause. Three years ago, I found an article that mentioned that NSAIDs can cause recurring aseptic meningitis. I had always taken lots of aspirin, ibuprofen and other NSAIDS (non-steroidal anti-inflammatory drugs) for back pain. I won't go near an NSAID now and have not had a recurrence since stopping them three years ago. If you are taking any, stop, and see if this my be the answer.
don't be so reliant on CDC.Gov these guys don't even care about bacterial development in soil by the average gardener using organic but un-natural amounts of bacteria for composting and soil conditioning which leads to anti-biotic soil types that let bacterias like Strepococci Bacilius become antibiotic resistant as well as a host of other bacterias. that is why we have seen and increase of E-coli resistant bacteria, Salmonella Resistant Bacteria and others that even eat you flesh off. Why these unwitting chemist are using manure from Cows, chickens, goats and pigs which is part of their soil conditioning which leads to mutations of bacterias found in these animals.
I've told my doctors and even they don't seem to know of this dx
OMG.Thank you for all your inputs. I've finally found other people who have same problems. I had viral meningitis 10 years ago and for every year now, I've been getting these symptoms 2-4xs a year. I'm 8 weeks pregnant and not sure why it started other than maybe my immune system is down. I just wish there was a way to stop them or to relieve some of these symptoms. And I really thought I was losing my mind, but I now know there others that are suffering too.
Reading the above posts it's the first time that I've heard other people talk about something that has also happened to me.
On at least 6 occasions dating back over 12 years I have had occurrences of Viral meningitis.
The first three times culminated in week long stays in hospital and the enevitable lumber punctures which simply confirmed what I already knew from the first experience.
Whilst the occurrences are less severe each time they are still debilitating and extremely unpleasant.
There have been generally at least year between occurrences and I have taken lots of steps to improve my lifestyle including weekly acupuncture and yoga. Also initially cutting out caffeine and eating healthily.
The one common factor for me with all episodes has been a hectic work like with too much adrenalin induced stress.
I must say that it is comforting to hear for the first time that there are others out there with the same issue.
Hi. A year ago I was hospitalized with viral meneangitis. Every 6 to 8 weeks it seems I get hit with a flu like ilness that feels just like my first bout with with VM, only it is not as acute and does not lay me up for as long.
I m writing this as I just spent my memorial day weekend in bed with the same symptoms.
My question is do any of you ever expeience lower abdominal pain during this. I can usually tell when a bout is coming on because my very lower abdoman and lower back start to ache and burn. Hurts so bad I cant bend over to put shoes on. My bowel movements are normal, but there is a persistant sharp pain, that usually goes away in a bout 4 days. In a week my headach and body aches and weekness go away too.
This is happening too much like clock work to believe that I am catching the same flu bug over and over.
Looking forward to your comments and feedback
Hi. It may be a long shot but maybe my situation is similar to someone elses.
I was diagnosed with aseptic meningitis 11 years ago. I had migraines for over a year, every day and have lived with challenging side effects that seemed similar to Fibromyalgia. I have never been quite the same since the infection.
I ended up being tested for a co-infection of Lyme disease even though I didn't remember a tick bite or rash which is typical of up to 50% of patients. If you have a Lyme infection and do not get appropriate treatment, it can cause lots of problems including neurologic symptoms. The co-infection called Ehrilichia chaffeenosis or human monocytic ehrlichia was the cause of my meningitis and crazy symptoms. The trick to getting tested for Lyme is that most of the current tests are not accurate enough, so getting the right tests and through one of the three labs the specialists recommend, is essential.
If anyone is getting recurring symptoms, don't give up looking for answers. You may also want to consider antivirals and looking into supplements to increase your immune functioning. You might want to find a doctor who looks at the overall picture, including if you are low on certain vitamins or have other deficiencies. If a doctor can't help, find another one that can & keep moving forward to find answers. Best wishes
Hi , thanks for all your stories, I to have had aseptic meningitis 3 times. real bad like 8 years ago. i was told i would never get it again. Not true. 2 years ago in October 2010 I got it again, than again a few months ago. the second time in 2010 i had went blind shortly after i arrived at the hospital it was so bad I spent 3 day in ICU, TOTALLY knocked out because i became a mad woman destroying everything in site, I was told. This last time i caught it in time, but still spent 6 days in hospital. i dont think i will ever be 100% i have bad memory loss,literally feel , well for a lack better words i feel slow. each time this has happened there has been an extremly high amount of stress in my life, i really believe it has something to do with it.Just dreading if and when it will happen again!!