After Bacterial Meningitis

Hi I don’t know how old you are but please read my entry about my experience with Bacteria Meningitis…. Your not in this alone… (Mothergoose) May God Bless you and love you always!!!!

@mothergoose1
I’m very sorry to read that you have suffered with the after effects of bacterial meningitis.
When I was a pediatric resident in the mid 1970s we saw plenty of bacterial meningitis. The vaccines for this had not been developed. In the 80s there was one new vaccine that that removed most of our meningitis cases. In the 90s another vaccine was developed that removed almost the rest of cases.
I’m glad you are here to talk about it. When you were a child the schools didn’t give you extra help and training the way they do now.
It’s good to see that you have and have had a good life.
I’m not surprised that your parents didn’t say anything. They probably were very afraid of losing you.
I hope members that have experienced bacterial meningitis will see your post and make contact.

Thanks for your kind words… Yes I’ve been looking all my adult life trying to find information on this subject but it’s rare to find another person of my age that has lived with the side effects for this long…
I have a question for you now if somebody comes across my post and sees this and would want to talk to me about a similar issue , will they contact me in the same way you did? Thanks again and have a great day.

@mothergoose1
Yes, if someone sees your post under this subject they would respond in the same way.
The post you responded to was from 2019- that person may not be active now.
I found your post because there was a notification that there was a new update on the subject.

I was 23 years old when I became severely ill with bacterial meningitis. Over the past 31 years I have never fully recovered and my symptoms are getting worse as I get older. I have had a constant headache and at times a headache is such a relief because I get frequent migraines. I suffer from hearing loss in my left ear and more recently I’ve noticed that my vision is getting worse. My doctor says this is age related changes but I think otherwise.
Over the past few years I have lost my ability to have a restful long lasting sleep. I average about 3-4 hours a night. But it’s not lack of sleep as much as it is restful sleep. It fogs my brain more so than I’d like to admit. I am in constant pain. My body either hurts throughout my muscles or my bones/joints hurt. There is no amount of medication that I have been given seems to help. I gather the energy to do for myself or my family. I can’t even get a doctor to understand what it is I’m going through because the doctor wants to prescribe medication and that doesn’t help. I’m overwhelmed and tired. Honestly when I got sick many years ago, the migraine was all I could remember and telling the doctor I wanted to die just to have relief from the migraine….this is how I am back to feeling today. I’m just so tired of feeling so sick and in pain all the time. I wish someone would understand this and not make me feel like I’m a psych patient.

@april4170 - Welcome to Mayo Connect!
You have had a difficult life recovering from bacterial meningitis. It’s a very serious infection since it causes damage to the central nervous system and recovery is different in all patients. Hearing loss is not an unusual complication. You should have an eye doctor examine your eyes to determine the cause of your vision problem.
Since you also have difficulty with sleep as well as constant pain it would be a good idea to see a neurologist.
You are definitely not crazy!
I understand very well what it’s like living with chronic debilitating illness- I have some experience myself as well as my children. The illness may not be visible to others but it’s definitely there.
Did you check some of the old posts? There are also links to more information.
Hang in there- get a full neurological evaluation first.

Thank you. I have seen a neurologist a couple times but he recommended me to a psychiatrist and said it is depression causing these symptoms. I’m also an RN and during that time I was a psych nurse, so I knew it was not depression related. Yet, I still took the meds prescribed hoping those would help—it didn’t and some symptoms ultimately worsened. As for the ophthalmologist…I see him once yearly but no significant changes that he can see through my exams. I’m scheduled to see him in December, so I hope things will change.
I will look at past posts and see what else I can do. But I just joined the site and I had no idea this platform existed. I’m glad I have found a safe place that have people just like me—I’m less anxious now.

@april4170
Regarding your pain- has anyone considered fibromyalgia?

Yes and I don’t fibromyalgia.

I had bacterial meningitis of my brain may 2014. Access in my left temporal lobe was removed via craniotomy. The cause was chronic sinusitis. I had sepsis multi organ failure was in medically induced coma intubated. I was coded as well. It has been a difficult and transformational journey. I had a seizure risk from the craniotomy. My eeg now shows a breach rhythm which is abnormal but non epileptic. I too was an RN. I also did psychiatric nursing. I had 5 years of treatment by an allergist- immunology because I had environmental allergies and some immune deficiency. I am 64 now. Married again. I drive walk 3000+ steps daily. I have 2 dogs who are my legal ESAs. I am bothered by too much sound . I have ptsd so I can get easily overwhelmed. The neuroplasticity that began after the craniotomy will continue the rest of my life. I had trauma therapy domestic violence therapy. It took awhile to re obtain critical thinking skills. I do not like bright lights flashing lights which are a seizure precip. Another change was I do not like scary or violent movies anymore. I like more quiet time. Boundsries are important to me now. I am not the same person I was prior to may 2014. All of this was a positive life changing experience but it took a long while and I will working on me the rest of my life. I take levothuroxine escitalopram and lamotrigine. Plus some supplements tylenol ibuprofen. That is all. I am overweight but still fairly healthy. I have very dry eyes vaginal atrophy. The illness plus all the antibiotics and other drugs used during my 4 week hospitalization caused almost immediate menopause. I was very determined to do what my health care providers said after this so I could regain my health . I did have very thin hair. It regrew and is now thicker.