Bacterial Meningitis : Hello all, I am 2... - Meningitis Now

Meningitis Now

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Bacterial Meningitis

pinderje008 profile image

Hello all,

I am 25 years old. I had a herinated disc of the L5-S1 that was herinated. I had a llaminectomy / discectomy. Stayed one night in the hospital and was sent home the next day. The day after i was sent home i had severe headaches when i sat up and stood up along with lightheadedness and naseua. My home therapy nurse said that i had a spinal fluid leak. I told my doctors office and they didn't reply with any response. About 2week's of not getting up or moving and getting anything solved i was sent to the hospital abd admitted. At first they thought i gad tension headaches and to drink gatorade and my headaches would go away. Then i was told i had migraines. Doctors did mri's of my head n back and nothing seemed wrong. Doctors tried to send me home day after day. One day i had 2 seizures and a temperature of 104.7. My nurse kept telling my family get her out if this hospital before the doctor kills her. My mother asked the doctor when he was going to do something when I was dead. After a spinal tap n 35 cc of thick yellow cloudy fluid was extracted from my spine was i taken seriously. I was transferred to the ICU and was diagnosed with baterial meningitis. It took 3 days for my temperature to go down. I had to have a second back surgery and my doctor still never said i had a spinal fuild leak. But my nurses all said that is what i had and that is how I got bacterial meningitis. I spent 3 weeks in the hospital. From March 7, 2015 to March 23, 2015. As to this day May 28 2015 i still have headaches. I have pixelated vision at times and blurry vision most of the time. I don't know if I will ever work again because as soon as i step into a lighted room or any type of loudness i get a severe headache that will last hours and no medications seem to help me. I have no clue what I need to do next.

16 Replies

Your story is so similar to mine. Even after more than 2 years post-BM, I still have a dreadfully painful head if I get any sunlight on it, or if there is loud noise or if I try to go in a car. It's so debilitating.

Try to keep positive. It is a very long recovery process and we just have to stick with the good things and minimise the bad. I've tried pretty much everything from diet changes (eliminating all inflammatory foods like potatoes, aubergine, tomatoes...), high-flow oxygen, vitamins, acupuncture, flotation tank, massage, ice-packs and much much more. No medication has any impact whatsoever. I think it's just one of those things that we have to accept and live with.

Be kind to yourself and take it very slowly and carefully. Don't push yourself and make sure to avoid bright light, loud noise and vibration. Remember that you're not alone - others of us are suffering too and although that's not a good thing, it is good to realise that there are other people who understand and are dealing with this too. The forum is a good place to get support :)

All the very best for your recovery.

Shan x

are ypu able to work or anything bc if its anything what im dealing with its going to be nearly impossible to work

Absolutely not a chance that I could work. I got sick in March 2013, was in and out of hospital for the following 8 months and then incapacitated by pain for the next 11 months. I can walk again now (it was too painful when my heels hit the ground as the jarring sent pain shooting up my spine and into my head. I could only tiptoe to the toilet and back). Now I can look at the computer screen for short periods and can walk into the garden. I've been sick for more than 2 years and 2 months and I was super fit prior to this (gym, swimming, kayaking, running, tennis....) I'm a neuroscientist so it's been particularly ironic that I should end up with a brain disorder. I can't even use a phone. I can't listen to the radio or to music and I can't watch tv. I definitely can't go in cars (the vibration slaughters me).

You're in the very early stages - perhaps yours is not as severe and you might recover more quickly. I hope very much that you do. I am very sad that I've effectively 'lost' more than 2 years of my life and I'm still nowhere near better. Let's hope you recover more quickly. At least you haven't lost your vision or hearing (many meningitis sufferers do) nor have you lost any limbs (I nearly lost my right leg). So you've been fortunate so far and perhaps your healing will be faster.

I wish you the very best.

I think that i could be losing my vision. Because i get pixelated vision amd everything goes completely gray. I also have blurred vision most of the time. I hear from my neurologist next week to find out if there is swelling behind my eyes. Everything is just very depressing and my fiance does everything he can to make me happy.

God bless you

DebDog profile image
DebDog in reply to pinderje008

It’s been 1 yr.1mo. since I was diadnosed with BM. Besides the usual headaches, balance issues, hearing issues, etc. I developed blurred vision about a month ago. The opthamologist has referred me to a neurologist-Ophthamologist now because I have damage to my optic nerve. The headaches are become worse & now my vision. Like someone said earlier, I’ve just decided to fight this and do what I can each day.

It will get better, but it takes some time. I think it took about two months for me to feel normal again. You are so lucky to be alive. I'm am sorry you had to go through this. But hopefully your young age will help you recover faster. Hang in there.

pinderje008 profile image
pinderje008 in reply to PRae

I have been out of the hospital since March 23rd and i still have bad headaches and they r so severe i just don't know what to do anymore

Have you seen a neurologist?

pinderje008 profile image
pinderje008 in reply to PRae

Yup he thinks i have swelling behind my eyes and i go back in a week to get the results. I think I am also going blind bc i have pixelated vision and it's completely gray and the rest of the time its blurred vision ... I am still going to physical therapy for my back and hip. I first started all of this in November of 2014 when i first had the pain and it took them 6 weeks to tell me i had a herinated disc .

I am going to continue praying for your recovery. I had to be put on prednisone to "break" the migraine cycle. I sincerely wish your eyesight to return. I believe my recovery went well because I had a near death experience. I would not wish that on anyone, but it helped me. Stay strong.

pinderje008 profile image
pinderje008 in reply to PRae

I know all to well bout the near death experience. I was told that i am extremely lucky to be alive. My neurologist said you almost died. He tokd me in the hospital that i had a spinal fluid leak but my surgeon just didnt listen it took a seizure on the ct scan bed and a seizure in the bathroom, and a temperature of 104.7 and me blacking out for more than 24 hrs to really pay attention. I want to sue him for medical malpractice. No one should go to Dr. James Mills in dover delaware. I almost died because of him.

PRae profile image
PRae in reply to pinderje008

Oh boy. I'm so sorry. I have a question. Did you have hallucinations?. I did for 5 days. Creepy.

pinderje008 profile image
pinderje008 in reply to PRae

Yea i had a lot of hallucinations. They were absolutely crazy. I was talking to myself. My family thought i was going crazy. My parents still laugh at me because I told them what i was seeing. One hallucination was about a lil person in a purple dog outfit and he was being chased by lots of dogs. Every time i closed my eyes i had hallucinations. It last for about a week or a lil longer. I was exhausted because i didn't want to close my eyes because I didnt want to have a hallucination.

Attention attention!!!! After recovering from bacterial meningitis i have had pixelated vision and swelling behind my eyes along with bad headaches. Doctor has just told me that I am going to have a shunt placed in my eyes? Any advice comments or thoughts!!!!!!!

Did you also have a sore throat?

No sore throat

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