Recovery after bacterial viral meningitis

[Lauraburns000]

Hi everyone,

I’ve found it really helpful reading this forum and it’s really helped me not feel alone.

I had shingles which caused my meningitis, initially told it was viral meningitis but because the infection was too high, I was told it was bacterial viral meningitis. This seems uncommon. Is there anyone else that had this too? This happened at the end of November ‘17. I was in hospital for 2 weeks.

Obviously the headaches were excruciating, I also was unable to walk unassisted, couldn’t handle any light or sound, was unable to be upright. At times no pain medication would relieve the pain in hospital. A lot of my stay in hospital I cannot remember but what I do remember has traumatized me.

After effects now are problems with my memory, my eye sight has deteriorated, at times my eyes go blurry if I’m reading, still have awful headaches and neck pain and my immune system is so low, I am fluey almost all the time or coughing. I also struggle to pronounce words I never had a problem pronouncing before and sometimes sound like I cannot speak, jumbling up my words. Because I am resting almost all the time, I don’t spend much time with other people and I was always an social, busy and active person so it’s left me feeling isolated and I am depressed too.

I have 2 young children who are amazing but I can’t handle much sound and activity and it just makes me feel guilty and even more depressed because I should be happy hearing them laugh and have fun but I find myself constantly telling them to keep the noise down.

I just want to be well again, want to feel like myself and stop getting sick. But then feel guilty because I know how lucky I am to be alive and on the road to recovery.

What have you done to boost your immune system?

As I write this, I know my story isn’t really different, I just feel desperate to be well and I’m so weepy and emotional all the time. I wish I knew how long this would take.

[Roselmck]

Hi Laura,

I just want to share. Honestly don't know how to comfort you & your young ones.

My husband contracted ACCUTE BACTERIAL MENINGITIS by inhalation while vacationing in the Philippine (Binondo, manila area). On our 20th day of stay he had high fever, consulted a local Dr & ordered blood test. As the night progress he felt nauseous, could hardly walk to the bathroom. We were told to check him in ER. Next day neurologist confirmed its MENINGITIS,but could not ID which type. Then he went into coma for 20vdays. At that time we were raising time & age (he is 71 yrs old). Drs decided to give him coctail of antibiotics. With all these events + worried of pneumonia we spent 30 days at ICU, 2 weeks at regular hospital room & 6 weeks in a friends house prior to returning to LOS ANGELES, CA. To top all these we hired a off duty paramedic to pick us up & escort us to a nursing home. Rehabilitated 6 weeks at nursing home near our residence. When relished from rehab, at home we hired a caregiver for 6 mths to bath, teach him to walk again & use different light the muscle to activate muscles. Eventually decided to go gym. Prior to MENINGITIS we go 6 days a week to the gym. So we thought this step will integrate him to normalcy & it has. His outlook to get better was challenged, moral was boost, he accepted that his life has changed & adopted alternative ways of doing his excercises by seeing other people doing it. We developed the lymph muscle first. Then he returned to swimming. From 10 laps of 25 meters to 20 laps today in 4 mths now. We added 30 minutes thread mill. Speed of .8 to 2.8 at this time. All in all we found going to the gym, library, change of environment helped divert depression. Yes he also have down days. But our SPIRITUAL BELIEF so far - STRONG. Thru all these, GOD had a plan. We just obey, pray for His guidance, mercy, ,intervention & listen to His message. Yes, he has his side effects which we are still working on.

1. Inbalance walking 2. Rocking sensation, which goes away. 3. Off centered on right eye (its returning to the center now.) 4. Slight involuntary movement during sleep. 4. The worst among all is URINE RETENTION, he is now self characterizing.

However, we are forever grateful for the ff:

1. His brain is intact (considering that it got swollen to the point he had 3 lumbar punctures & creamy sticky liquid were hardly dripping out on 2 punctures.)

2. Appetite is excellent. 3. Bowel movement returned to normal now. 4. Deppression is minimal. 5. Socialization has improved. 6. Sleeping & hygiene is acceptable. 7. Moral for self betterment is high & much more.

To me. All these are GOD'S plan & with His intervention & our belief He can make things happen.

Hope this sharing could help you & others somehow. I'm also thankful to have this forum. I'm getting educated many folds.

We are not out of the woods yet.

IF ANY BODY HAVE SIMILAR SIDE EFFECT OF URINE RETENTION AFTER MENINGITIS PLEASE PLEASE SHARE WITH US.

APPRETIATE IN ADVANCE.

[Chozen8 in reply to Roselmck]

Thank you for sharing, my fiancee had meningitis,it affected his brain, memory loss, lost for words, I just want to learn all I can so I know how to help him

[Roselmck in reply to Chozen8]

Hi chozen8,

My husband memory is not perfect, but he remembers a lotnif things.

During the early part of recovery (few days from the hospital) part ofnhis PT was flush card for young kids. But when I found that he could remember actors, singers etc name. I quickly upgrated him to read newspaper with big titles. His eyes were blurry at the time. That helped him get back his words in chinese & english. My point in his therapy is as a caregiver, we observe their ups & down better than tge PT or drs. Once I see he can do a task, excercise or activity, i quickly jump into it & monitor itbtgen upgrade with modification.

Hope that could help.

PS. STILL WAITING FOR SOMEBODY TO SHARE WITH SIDE EFFECT OF URINE RETENTION POST MENINGITIS. WHAT TREATMENT OPTION WAS USED.

[Chozen8 in reply to Roselmck]

Thankyou

[Packard]

I know you don't want to hear this, however I have suffered from headaches due to bacterial meningitis for over 10 years. It is hard to explain the pain. Noise or light seems to have no effect anymore. You do get used to it after a while. I found a very good Pain specialist. Without the relief from the pain I would not have a life. The sad thing is because of the attack on pain drugs you are made to feel like a drug addict for having to take them. I will pray for you and yours. Shalom

[Keely-S]

Hello Laura

Reading your post sounds like you have had a really difficult time and I can really identify with how you are feeling now especially. I had bacterial meningitis and went into hospital mid December last year. I am making a very slow recovery indeed so slow that I barely notice any improvement. Someone on here recently suggested to measure recovery in terms of months not days or weeks and I think that wise. When I think back to one month ago I have improved from there a bit.

I was led to believe ‘just rest and it will take time’ thinking in a few weeks I would feel back to myself then I couldn’t figure why I still felt the same every day. Having done lots of reading and being on this forum I realise now that it will probably take considerably longer. Many months I think.

Like you I have young children, two, and two teenagers, it’s really hard as life goes on for them doesn’t it, they still have all their needs and it’s so hard not being able to be the mum we always were at the moment. I have to do small tasks then stop and sit for ages. I think they are used to me saying now ‘mummy just needs to sit I don’t feel too good at the moment’.

I have been left with permanent dizziness and woozy unbalanced feeling, bad headaches and visual problems like yourself. I can’t drive at the moment.

I really hope you start to feel tiny improvements, even like for me it’s that I i can get through the day now with one nap, a month ago it was two or three.

If you want to message me please feel free, it can be a lonely recovery and people don’t always understand

Keely

[Susieny in reply to Keely-S]

Hi Laura,

I had bacterial meningitis in April last year. I became deaf in my left ear and the vestibular nerve ( balance nerve ) has been damaged . I suffer with that rocking motion all the time except when seated or lying down . It took three months before I drove again and when I did , I drove with white knuckles and stayed in the same lane and went slowly . My Dr told me that I needed to retrain my brain and do everything I used to . I took his medical advise and the more I drove ( very local roads) the easier it became . I went back to work in my office as a paralegal 6 weeks after being released from the hospital just 10 hours a week and it was difficult focusing eye and hand coordination . I made a lot of mistakes but I looked at everyone of those hours as physical therapy . At the three month mark , I returned to teaching yoga and Pilates classes . I was amazed how much I was able to do and my memory was in check remembering the names of the movements and the cues for the students .

Thru all of this , I was dealing with the balance issues and being deaf in the left ear . It wasn't easy but anything worth while in life requires sweat equity . Nine months later , the balance issue is much much better . My memory is not as good as it used to be but improving every month . I don't cry as much as I did in the early months and I adjusted to a hearing aid. I do get tired and require more rest . Instead of fighting with my body , I simply rest . Think of everything you do as physical therapy. I used cooking as physical therapy . I read recipes and cut up veggies and prepared meals . When I was done , my brain hurt . Just like PT hurts someone's hip or arm or any part of the body that is processing Physical therapy .

Spend time with kids doing puzzles , reading with the little ones . Take walks practicing maneuvering potholes in the street , cobble stones , stairs it's all PT. Read and prepare recipes . Drive when you think that you can handle going locally . Let someone take you shopping . Walk around the store , buy groceries . Everyday , have a plan for PT. It's tough . You'll be tired but it's worth it. If I didn't push myself , I'm not sure that I would be as far along as I am today . I am not the same person I was before the illness . But very content that I am where I am now . Perhaps in some ways , better for it. More wiser and understanding of physical challenges .

Wishing you well and praying that your strength shall endure you to a recovery that gives you back your life .

Love and Light, SusieNY

[Tupshaw in reply to Keely-S]

I really hate this for all of us. With the headaches do you have pressure to?

[Jackiemerritt22]

As i was only 46 when i got pneumococcal bacterial meningitis i had lots off tests done on my immune system. All the results came back very low i was given 4 inoculations cant remember which ones but 3 months later when they tested me again they was all on the plus side so good result. I have to say its been 8 months now and i still have all the problems you are having not so bad now though. My GP is very good but even she cant tell me when or if they will ever go away completely its just a case off time hopefully soon you will start to feel better. Its also good if you have someone to speak to as i had major problems with not being able to remember what happened i was on a ventilator for 11 day before i was woken up and then spent a further week in hospital thinking crazy thoughts.

[Jaxx72]

Hi

My 18 year old son is still in hospital recovering from BM. He has profound deafness in his right ear and also has balance issues. This is the first post that actually lifted my spirits as you sound very determined to recover and my son is the same. You mentioned you use a hearing aid. I guess I’m asking what might be a silly question but, if it’s profound deafness, can an aid make you able to hear again ? My boy is desperate to get his hearing back somehow, we see a specialist tomorrow, but we have had a harrowing 11 days so far... your story is inspirational, it’s helped me a lot, thanks.

[Susieny]

Hi, I had BM April 2017 and was left profoundly deaf in my left ear . I have a cross hearing aid which is a system that the left aid is a blue tooth which transmits sound to the transmitter in my right ear . It is not a perfect system and takes time to adjust to but, it increases the ability to hear. Also, I have experienced that as time went on without the hearing device on, I manage to hear. In the beginning I mourned for my lost hearing but time has allowed me to accept me as I am. The new me.

Good luck to your son .