Bacterial Meningitis after shocks

[Susieny]

Hi Everyone,

I live on Long Island, New York. On April 18 , I was brought by ambulance to the hospital . The ENT from the ambulance quickly diagnosed me and treated me as a victim of BM giving me antibiotics all the way to the hospital . My story is very similar to most of yours. Two weeks in the hospital and then two weeks of IV therapy at home . I returned to work with IV port in my arm not feeling well at all, but it is a family business that I needed to attend to. I make so many mistakes but I do my best . I primarily do the bookeeping and answering the phone, writing bills etc. I also teach yoga but just returned to that a few days ago. It is not easy teaching and I question whether or not I should continue. It has been two and s half months and I am off balance . When I try to concentrate on an easy task, for instance just wrapping a gift, I get pressure in my head. I feel like I am in a dream state . I feel high all the time and I don't take any drugs. I am very tired and I don't want to do much because my head feels pressure anytime I try to think of what I need to do. I am 58 years old and before this, in very good health with the exception of my ears. I have had two mastoidectomies due to no eustation tubes in my ears and had very bad infections in the left ear requiring surgery . That is more than likely, how I got BM. I feel very defeated and I was in need of reading your posts. In the U.S., they are not as knowledgeable about BM nor helpful in their advise. My Doctors never told me that I might have lingering side effects. My memory Is not as good as it once was and I don't feel like socializing much these days. I reserve all my energy for work and taking care of the house.

Thank you for listening . As some of you said, because you don't look sick on the outside , people don't realize what we are going through . The sympathy is not there. My husband is wonderful and he knows my struggles , but everyone else expects me to be 100%. I work with my Father and brother and they want me to do as I used to. My teaching Yoga is not at the level I used to be at but the students ( being yogis) are very understanding. I guess patience is required for us but it seems it takes a long time or perhaps as some of you suggested, accepting a new you.

Thank you for listening and sharing you stories.It is comforting go to know that we are not alone.

Sincerely,

Susan P.

[Bcamron]

Hi to you. Great post! You're 100% right we have all experienced much of the same daily challenges. It sounds like you may need to scale back some activity level. Not to discourage you, I'm 23 months post viral meningitis and life has had to change for me. I have found that rest is much needed for me to cope with residual symptoms on a daily basis. I'm 35 and head pressure is so overwhelming some days that getting a meal is challenging. Don't be hard on yourself, we all hope that life will get easier for everyone of us. Know your limits and remember how sick you were and allow your body the rest it needs. I've learned to "pat myself on the back" daily for achieving simple things that I very much took for granted prior. I make a list almost everyday and for example showering, dishes, fold laundry and easy meals. I take great pride crossing an item off and it's actually comforting. Some days meals is only thing on list and on bad days I add NAPS to list.

I cried reading a lot of these posts when I found this group a couple weeks ago and it was tears of relief knowing that I'm not alone and now only a simple message away from people who understand.

Let's face it we all must look pretty great for people to expect 100% from us. Chin up.

I'm starting yoga for first time soon. Maybe taking a class instead of teaching would be helpful for now. Be kind to yourself

[Susieny in reply to Bcamron]

Hi B Cameron,

Thank you for your post . You are very encouraging and my chin is up! I hope you enjoyed your first yoga class . I have been teaching Yoga for 12 years and practicing for 25 years. It is very healing and creates a peace within our physical and emotional bodies. Stay with it . It is a gift in your life .

[Runnerma]

Hi Susan,

I also live in the US & agree the doctor's don't know or give much advice about the after effects of BM. You went back to work early like I did. Now my energy is low & feel sleepy all the time. It took me awhile to find a knowledgeable & supportive neurologist. PT does help. Are you doing yoga? That might help you build up more stamina. All the best to you. Be patient, it does take time!

[Susieny in reply to Runnerma]

HI,

I think that I went back too soon to work and managing life too quickly ! I had BM in April and I was improving but the last month , improvement has stopped . I am getting very tired and the off balance sometimes is very difficult to manage . I do my own yoga practice which helps a great deal . Thank you for your suggestion and I am making an effect to slow down a bit . My body seems to be doing it for me . Hope you are feeling better and Ibam grateful for this site and people like you 🙏

[kirsty40]

Hi Susan. I live in Nz and I had a similar problem to you I also had a mastoid due to a bad left ear infection. I had a gromit installed to help with equalize pressure in my head. I still struggle and now and again my mood changes for no reason it is almost like a form of depression. I do think exercise helps me with this issue and my new work mates don't know what happened to me. I guess I don't want to be labeled as having a brain injury. I am back working full time and thinking of getting back into running.

I was told by my doctors that fish is good for the brain and also fresh veggies and fruit. Believe in yourself and take your time. I am sure in time your body will follow😊

Take care of yourself

[sdjohnson231]

Susan, I had a ruptured ear drum, which is how I ended up with pneumococcal bacterial meningitis. I was on iv antibiotics for a total of 12 weeks, and was off work for 6 months. It was still a struggle after returning to work. The headaches are a constant after-effect, two years post diagnosis. I am now working with a neurologist who is trying to get the headaches under control with a variety of different medications. My primary care physician really had no clue as to what to do for me. I still have concentration issues and balance problems, in addition to the headaches. My neurologist has suggested that I try to get at least 10 hours of sleep a night, as that is when the brain repairs itself. Good luck to you. You are very early in your recovery. Sleep and rest when you can. An afternoon nap is also good for you. Your brain lining needs to heal! Susan Johnson, Wichita, KS

[LMains in reply to sdjohnson231]

Hi Susan, I just wanted to mention to you that I, too, has post meningitis headaches, but I was helped by acupuncture. It was an elderly Asian man, here in my small town- not sure how easy/hard it is to find somebody you trust. And yes NAPS for sure! (-:

[Susieny in reply to sdjohnson231]

Hi Susan,

Thank you for your kind words. I'm sorry that you are suffering from headaches . I am having difficulty in concentration and comprehending . Lots of pressure in my brain especially when I am trying to concentrate . My balance is not very good . I often feel like I'm in a dream state . But we are very fortunate that we escaped the throws of this terrible disease. I also had an ear puncture from a very bad ear infection . That resulted in having a mastoidectomy . Then I had a cholesteatoma in the same ear and had another mastoidectomy which resulted in my ear becoming deaf . In April when I contracted BM, I had an earache in that ear and the rest is s familiar story to all of us as we have all walked down that road. Be well and take care of yourself .

Susie NY

[sdjohnson231 in reply to Susieny]

Please take care of yourself as well! Susan in Wichita, KS

[LMains]

Hi Susan, I just want to send you a hug through the Internet. It seems to me like it is way too soon for you to be working! BM is so, so draining and life affecting! I am 16 mos post and it definitely took at least 6 mos to get back to myself. I, too, had lots of ear surgeries (congenital cholesteatoma) and then BM. My BM started as an ear infection (I tried to get it treated!!) but it left me profoundly deaf. Do you still have your hearing?

I live in Northern California, BTW.

[Susieny in reply to LMains]

Hi L Mains,

I had a cholesteotoma as well and a terrible earache in my left ear (cholesteotoma ear) when I had bacterial Meningitis. The Doctors do not think the ear is the source of the infection site but I totally disagree. I had terrible pain in that ear and continued during most of my hospital stay. I just went for a very long and grueling test to see if i had CSf leak in either the ears or sinuses. It's called a cisternagram. It takes 12 hours and it requires a lumbar puncture to inject radiation in your spine, a series of cat scans and MRI s and sticking cotton like gauzes in your nostrils and ears for six hours. I had to come back to the hospital the next day for more scans. The Doctor called me today and said that they don't see a leak but however, if I get a cold or earache or sore throat in the future, to go get antibiotics. Did your Doctor tell you that also? I am deaf in my left ear as a result of the cholesteotoma and my right ear does not hear well. I just got hearing aids but my brain still feels swollen and wearing them is very uncomfortable to my brain. Everything is too loud andwhen something is too loud, it sends like a ripple effect thru my brain. Do you get that' too?

I am sending you a hug back , thank you for your response. It's nice to have someone to talk to that understands.

Susie ny

[LMains in reply to Susieny]

Wow Susie! You are the first person I have found with a similar story to mine. Very, very nice to connect. BTW, my email is [e-mail]- maybe we could become pen pals? Just re-read your first post, and it sounds like you are plenty busy enough with just trying to live and work. NAP!!

My ear doctor says yes, the BM started from my left ear (both ears have had surgery for cholesteatoma). I had terrible pain on Monday; went to an Otologist (one level above an ENT) on Tuesday at 1pm (he just said I had a blister on my left ear drum and sent me home with drops); by Wednesday at 6am I was unconscious. My sister lives in upstate NY and I got the name of a NYC ear doctor for her- will find it if you are looking for a specialist??

I now know that cholesteatoma puts you at higher risk for getting meningitis and we should have had the pneumonia vaccine every 10 years. There are 2 of them; I got the vaccines post meningitis. I have two cochlear implants now- one in each ear, although the left ear has not been activated yet.

Do you know what type of bacterial meningitis you had? I had pneumococcal bacterial meningitis. It matters because that type of BM makes your cochleas ossify as part of a lingering side effect.

All the best! Write back if you can- [e-mail]

[Runnerma in reply to LMains]

Hi LMains & Susieny,

Very interesting conversation regarding ossification of cochlea due to pneumococcal BM. I too have hearing loss that seems to be getting worse. I was told that hearing aids wouldn't help & that I really didn't want cochlear implants. I haven't gotten my pneumonia vaccine yet but plan on it. Sometimes the roaring, ringing noise makes me crazy, other times I can tolerate it. Stress definitely makes it worse. Rest is key but almost impossible when you struggling to work full time. I found a person trained in craniosacral massage & in one session the pressure around the back of my head is gone. I was told she didn't know how long it would last but so far so good. At this point I will try just about anything to get some semblance of normalcy in my life! Hope you both are doing well.

[ICUBMcoma]

BM is a mean little monster who sneaks in when you least expect it! Nibbling on your brain function wires. I was medically induced into a coma, the results of witch was total muscular atrophy which I've been in the process of hard core rehab. In patient treatment from 12/26/2016- 4/13/2017. Continuing outpatient OT/PT 3x a week. Almost 8 months into this full body project still have some muscle weakness, confusion, slow reaction time, not really up to driving yet. I've been taking it day by day on this long journey.