Don't Be Shy

[sadlisa]

Hi all,

It seems we have a few members, but no one is posting. It would be nice if you let us know what is on your mind. Anyone have any questions we could toss around? We are here to support each other in this. I have been suffering after effects for quite a few years now and have had some testing to try and find out why. It seems after a bit of research and testing I realized I had an injury pre meningitis that may have cause me to get this. None of my doctors had even considered the idea of Post Traumatic Meningitis. Anyone else suffer an injury or had head or neck surgery before they got this?

Just trying to get the ball rolling. The best to all,

Thia

[dmat01]

My husband was diagnoised with bacteria meningitis caused by Steptococcus Pneuumonia on OCtober 20, 2009. Our live has not been the same since. Yes, He has numeous ongoing side effects. He has fainlly gotten past the days of the severe migraines, but still continues to have reaccurring headaches. He has difficulty with concentration and short term memeory laspes. He continues to walk with a walker due to the balance issues, which isimproving. He has tinnitus in his ears. He has hearing problems. The speech therapist says it is mainly a rare cogitive skills iussue concerning his central nervous sysem. The Audiologist said his hearing loss is due to 70% damage to the nerves in his ears.
I think that both may be right or both may be wrong at different times. Sometimes I want one to be right and at other tmes the other to be right. We have been told to consider coclear implants, then told that the implants would not work. He has Mood swings. He is childlike but not childish. We are not seeing any doctors due to lack of insurance - so that means we are utlizing the Emergency Room only. He has been in physical, occupational, and speech therapy since Novemer 16, 2009. We could not have gone through all this without them- as they are all that we have had through most of this journey. The therapist say that he can't work, and probably never will again. I agree, because any little energy he uses leaves him exhausted. He requires two hour or so naps after two hours or so of exertion. He can not hear what you say, but if he does, he does not remember what it is you said. He can not folllow 2 step or 3 step instructions, so just forget any real detail instructions. He says he have forgotten twice as much as he will ever remember again.

We get through each day at a time, and I am glad to finally have found this site with the forum. I need it. He needs me to have this access to talk and gain some knowledge and confidence about this disease. Thanks for asking not to be shy.
Our Doctors say most people do not live through what my husband did- and I know there are not peers within my area to befriend to give and recieve support from each other. Again, thanks.... I will talk, and please ask questions.

[stew301]

i also had steptococcus bacterial meningitis in 2005 i am 32 now. im very lucky im still alive. i was in the hopital for 3 1/2 weeks, i was in a coma for 4 days. when i woke up i was seeing double vision, was completly def, couldn,t walk was just like being born again. anyways i was also told that i would never return to my job which is road construction. it was a year in a half before i went back. i have titnitis in my left ear and my right ear ive got most of my hearing back. i also had balance problems which has got a lot better. the biggest problem for me was my vision, it shakes whenever i move it like looking in a mirror on a truck. which it has got better. there are side effects that will never go away, u can only improve. im not sure how old your husband is, it might make a difference im not sure. i can probably write about 5 pages of stuff but , if u have any questions feel free to ask

[dmat01]

thanks for your input. Yes, it is always helpful to talk with others whom have walked the same path we are on.
My husband is 57 years old, and fortunately considered young enough to heal. But, they say we have years ahead of us concerning the issues he has. I am glad to hear of your progress, that gives me hope. I journal on caringbridge. com concerning out daily lifes, and others think it is trival what we go through compared to other diseases such as cancer.
But truly, this issues are not trival at all. Expect to a future post from me with questions. I appreciate your post.

[stew301]

u are only the second person i've talked about meningitis. i talked to a lady named eilein who also had meningitis and she was around 55 to 60 i think, but shes had a lot more other things besides meningitis. she hosts a forum monday night at meningitis angels.com. maybe she can help u with qeustions to. i went to theropist for my eyes and balance and they both helped. i hope i don,t come off as self centered, but i did alot of my own rehab. i started working out as soon as i could, even if it was 2 pounds, any kind of exercise that requirs balance or what ever will make your mucles stronger and hopfully give u more energy. i just did what ever i could do without my brain feeling like its going to explode. i remember it took a long while before i got more energy. having balance problems makes it 3 times harder to try to do anything. you probably think im crazy about talking about working out, but it helped me, it takes a lot of time to heal feel free to ask any questions.

[dmat01]

Oh, no... I do not think you are self centered. You are the only person whom I have found that is willilng to talk about the aftermaths and trials of getting through this experience. It helps to communicate with someone that knows what you are talking about when it seems like a trival issue to most. My husband self rehabs also. Numerous things we have stared because we thought it would help incease eye coordination and balance. Later, the therapist made a recommendation of something we had already been doing awhile. My husband is very dedicated ,persistent, and commmitted to his recovery. I know what you mean, about 3 times ( at least!) being harder with the balance issues.
The last three days, my husband has been "really under the weather", running a low grade temp, no energy at all, and his hearing has deteroriated again. I am hoping that this will pass and we will be on the upward path of recovery again.

I know that there are others out there needing to talk, needing to share and be shared with. We are part of a society that this just does not happen to you neighbor. We can't just sit down at the kitchen table, over a glass of tea and get through it together. I really hope that this forum takes off and becomes the source of comfort, help, and encouragement for those that need it. I was totally lost, although I had church family and friends, I had no one with any experience with this disease to encourage, hold my accountable, and let me be me. I feel you have a place in the doing what I am speaking about. Keep talking to me, and others!

[stew301]

im glad you know where im coming from, some people may think im bragging about myself or i didn't have the meningitis as bad as some people. im just trying to say that any kind of exercise requires balance and might lead to a quicker recovery. u gotta remember that the brain is still swollen 6 to 8 months after you had the illness, so it will affect your hearing, sight everything, thats why it takes so long to get better. its been 5 years since i had it and i still got the side affects but their better, if you were ever to meet me you would never even know that i had got sick at one time. you said your hasband was kinda sick and lost some of his hearing, i know when i get a cold or something my ears ring louder and kinda plug up so hopfully thats all that is.

i also went though eye theropy but it really didn,t do a hole lot, i still had 20/20 vision, but my vision shakes when ever i move. so i went down to the ohio state university, thats where i was hospitalized when i was sick, anyways they did a test where you sit in this chair in a dark room and kinda move you around to see what your brain is doing, well they said the mechanical mecingnism in my brain was damaged which controls part of your vision and hearing and so on, thats when they told me i better look for a new career. i paint the lines on the road and thats all ive ever done, so its kinda hard to just try to find another good paying job. at the time my parents were paying all my bills and that was a year and a half so i had no choice, i had to go back to work. they through me right into the mix of everything like running hand grinders to climbing up on paint strippers, whick requirs alot of balance. i just thought to myself thank god that i worked out and exercised or else i wouldn,t of been able to do all those things, but going back to work was the majer rehab for myself thats what realy helped me, so ya please write back i would love to try to answer any qeustions

[Toliver]

Hi.....My grandson (now 5 months old) was diagnosed and treated for viral meningitis at 27 days of age. He seemed to pull through it OK by now is exhibiting signs of developmental delay. He is not able to hold his head up, does not reach out for things or grasps things and he has nystagmus. He was first worked up for OMS (opsoclonus myoclonus syndrome). He had a CT scan looking for a neuroblastoma (which was negative). He has been evaluated by a pediatric ophthalmologist and a pediatric neurologist. I am wondering if anyone has a similar story and what the outcome was. We are very worried!

Update: My Grandson has now been diagnosed with infantile Spasms/West Syndrome and has started on vigabatrin. He will have a follow up EEG at the end of the month. Anyone else with a baby that had viral meningitis and went on to develop IS/WS?

[sumrluvin66]

Hi everyone, I'm new to this forum. I was glad to find a place to read other people's experiences and what to expect after having meningitis. I've read a number of posts and I'm feeling a bit nervous now that I may now be plagued with ongoing headaches and residual symptoms. I received very little information regarding post care and what to expect. I read as much as I could online including info on the CDC website, webmd, etc., but I found little about how to care for oneself after the fact.

I was diagnosed with H. flu meningitis a month ago and am up and down with continued symptoms. I have never had a migraine headache in my life, and now a good day is one that my head doesn't pound. The doctor that admitted me to the hospital said that he was willing to refer me to a neurologist and I'm wondering if anyone here would recommend I take him up on it. I guess until now, I didn't realize that this may be much more chronic than I thought. I thought this was similar to having pneumonia and once treated it was over. I'm feeling pretty sad right now being I do not at all like these headaches, neck pain, and I also have discomfort all the way down my spine. I don't want to think this will not leave me anytime soon.

Has anyone else had bacterial meningitis/H. flu type? If so, do you have any advice for a newbie? Thank you, Jolene

[dmat01]

Hi, my husband had steptocpccis Pneunomia bacterial meningitis. His onset symptoms were flu-like. I have not ever heard of the H. flu type, but would like to know more about it. If you can get a neurologist to take an interest in your case, I strongly suggest you take that step. I, too, never realize the extent of all the aftermaths and potential for the onset of other issues after meningitis. Although I am by far no expert, I am getting fairly knowledgeable due to the varying circumstances of my husbands life since this illness. Knowledge is hard to find, and usually is hard to digest when presented through the physicans and other health care providers you encounter through this experience.

This Illness has the potential to be a long life altering experience as well as some are fortunate and seem to overcome the hold and go on to live very productive lives. I hope the best for all, but unfortunately, that is not the fact for all.
My husband has been determined not likely to improve according to many determinations and doctors evulations. I have seem varying inprovements, some great strives, while other issues have not. AS a team, we put a lot into making the most out of making what we have the best. It is frsutrating and tiring many times, but always worth it.

I have chose to journal his progress with whatever aspect we are dealing with at the time. All of his journal is not about medical treatment and medical help- as that has not been forthcoming in our case. Maybe reading his story, or journalliing your own, might be benifical for you. I journal on caringbride.org. To see his story type in denniemathews in visit site .