Viral meningitis is terrifying!: My husband... - Meningitis Now

Meningitis Now
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Viral meningitis is terrifying!

Llamamama
Llamamama

My husband got his first case of VM in college, 25 years ago. Since then he has had 6 different episodes. The last was about 6 years ago and it has progressively gotten worse every time. The last episode he was diagnosed with BOTH meningitis and encephalitis. He was hospitalized for over a week and after he was sent home he was on anti-virals via a port in his arm for 6 weeks.

I don't want to hear anyone say that Viral meningitis is "nothing"! I've watched this man scream in pain. Beg for help. Everytime we have to go up the ER I have to nearly fight with the staff telling them this is NOT a simple migraine and he needs a lumbar puncture. Every time I come in with him I tell them right away "he has meningitis and needs to be seen asap!" They just roll their eyes at me and all me "is it confirmed?" I tell them no but this makes the 4th, 5th. 6th time whichever it may be, then they really roll their eyes telling me nobody gets viral meningitis that much and its only a bad migraine. It literally takes me forever to convince them to do the DAMN lumbar puncture. Then when it's clear they say. Oh it's fine, the fluid was clear. Yeah, sure Mr. Know it all. Talk to me when pathololgy is done. They think we're stupid and they know more than we do just because they have some degree.

My husband has suffered undo amounts of pain because they only wanna give him either 25mgs of Demaral or like 2mgs of morphine. I have to go through the whole thing again about how he never even takes Tylenol. So if he's saying he's hurting its serous! Give him the DAMN morphine and give him.10!!

He's lost strength, he's lost memory. He can't even remember small things every one takes for granted. One year for Christmas we gave him this really nice electric drill he had been wanting. 7 months later I got it out for him to use and in front of me and our kids He says, hey where did that come from, I've been needing one like that. Who did you borrow it from? We all just stood there looking at him like he was crazy. One of my boys finally said dad, that is the drill we just got you for Christmas this past year! He looked at all of us and said, I mean emphatically "no you didn't. I would remember getting that. Why are y'all messing with me!".

We just stood there shocked!

He has permanent pain from the lumbar punctures, he gets extremely irritated for no reason, is paranoid and explosive if we don't agree with his reality of something that just happened.

It's exhausting.

So do not even think about saying to me. " well, it's a good thing it was ONLY viral. That's just a bad headache for a while. If it was bacterial meningitis it would have been much worse. " yea, right.

9 Replies
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Your poor husband and I feel for you and your family too.I had viral meningitis and 'caught it early' but still damn painful .Even 8 years on I still suffer with a dull headache 24 hrs a day. sometimes it progresses to a migraine .I have lupus as well which doesn't help. I'm still photophobic too so I have to look away when I open my curtains but at least I don't get the horrendous pain like you do with v.meningitis

Hope things improve for your husband and the staff are better as like you say its not just viral meningitis.

X

Sounds like it's been really, really rough. I can identify with having a husband with memory/perception issues. My husband has had strokes, will demand his vitamins which are in plain view by his plate, gets days of the week mixed up, "Is tomorrow Sunday?" "No, that was yesterday." Will single-focus to the exclusion of anything else going on around him (can't answer the phone because he is putting an entry in the checkbook) has to complete a task that he has started (started a new chapter in a book so cannot make conversation with others who enter the room). Meanwhile I am on my 4th flare of viral meningitis since Dec 2016. My pain is controlled with tylenol, I have to rest frequently, cannot vacuum or mow lawn as that requires head and eye movement that produce dizziness and nausea. Loud noises and commotion are out, no big social gatherings, neuropathy affects one arm and my mouth. My vision is affected, very blurred, making reading is difficult, but a back-lit screen such a a computer works well. So... it's not been a picnic, but I am grateful to be alive. I can appreciate the warm sunshine, I feel God's love through the loving support of my family, the comfort of a soft couch to lie on. I realize I am so much better off than many. I am praying that your husbands gets over this episode and that there are no more. morethanks

I am really angry to hear your situation. I went through the same exact situation. My wife had to actually threaten the doctors to get them to do a spinal. And after they found I did indeed have bacterial meningitis I was sent home that night only to be sent back to the hospital by my doctor. My doctor could not believe they sent me home. 16 years later I still suffer from 24 hour a day migraines. Doctors just don't take meningitis as serious as they should. If your not rolling around on the floor in pain they just don't think you have a problem. 3 years ago the same hospital sent me home after I went in with stomach pain. They told me I had gas. Only to find out I had a malignant gist tumor. Sometimes you just have to make doctors do their job. I hope all gets better for you and you husband. I will pray for you.

Llamamama
Llamamama
in reply to Packard

OH!! ARRGG!!! What the HELL is wrong with our medical professionals today!!! My father, God rest his soul, worked in radiology for 48 years so I basically grew up in a hospital. Because of my father's association with the other doctors and also his stellar reputation, I never once worried about the medical care I received. However, my father was a very humble man, not your typical "God complex" you see so often today. My father used to tell me all the time, "Cheryle, it's called the PRACTICE of medicine, NOT the PERFECTION medicine!" The only difference between you and a person with an M.D. after their name is that they took a few more classes than you and they have seen a few more things than you have. Thats the nature of any profession, the longer you're surrounded by your choice of career, the better you get at it. Then he would tell me " NEVER, EVER put ALL your faith in the doctor that is treating you". He always said you need to take a very active rolein your treatment. Write down everything they tell you and YOU do the research. Make certain you are involved in every drug they put in you, every procedure they do, never blindly put your faith in anyone but God. Period. If you don't agree with something, tell them. Don't be afraid to voice your opinion. This is YOUR body. And if you do not feel confident in who is treating, fire him! Remember, HE is working for YOU! Not the other way around.

More and more my father's words have given me the strength to follow my instincts. It's saved me a lot of heartache too.

Never ever give up and never let some idioti intimidated you just because his name ends with "M.D.

I'm so sorry you guys are going through this. I too have had VM many times. I was finally diagnosed with mollarates meningitis. So I'm now treated daily forever. It is rough. We are treated like it's not that bad..um, yeah, it is that bad. Have they found out what is causing it ? Maybe ask the Dr about daily antivirals. Sure hope he's starting to feel better.

Does your husband take Acyclavir (Valtrex)? The specialist I saw 2 1/2 yrs ago put me on 800 mg daily (400 mg, twice daily) right afterwards and said that should deter future VM or at least make it milder. I take it every day, because I sure don't want that again.

Good luck, VM is terrible!

My heart goes out to you and your family. I had my first and hopefully only episode of meningitis on June 5 and I am far from normal. I live in fear of getting it again, but I am sure it will happen again because I believe it was caused by herpes. Do you know the virus that caused it in your husband?

Typing is now so difficult for me. I was a smart woman but it is now like I have lost half my intelligence. I can't understand things, or process things.

Your story is what I think we all fear. I love my doctor but I don't have the energy to waste driving an hour each way to see her to end up no further ahead than I am now. I now get car sick, even if I am doing the driving.

Best of luck and good health to your husband. Keep us posted.

Finely someone else that has gone though what I have! I don't want to sound so happy, but to have found you on here and him having it for the first time 25 years ago. Me it's been 21years since I have lived with this. You pretty much wrote what I have gone though, except they have never tested me again when I have gone to the EM room in so much pain, because they all say ONCE YOU'RE HAD VM YOU'LL NEVER GET IT AGAIN! And that's coming from the same Doctors that couldn't figure out why one day my kidneys decided to stop working, luckly my grandson found me in timeto call a ambulance, because a few minutes later I stopped breathing. Woke up in the ICU 4 days later and the Drs. had no answers to why it happened. That's just one of the crazy things that happens to me from a list that seems a mile long and growing longer day by day. Hope I'm making some kind of sense to you for my mind likes to wonder off on it's own alot...lol I stopped going to the Drs. Years ago because of getting treated like crap. Right now, I've been battling a infection in one of my legs for about 4 months. Just one day was sitting around talking with some of my neighbors when all of a sudden a water blister pops out on one leg, about 1/2 hr later one pops out exactly on the same spot on my other leg.

I'm sorry to hear your pain! Hugs!

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