Don't Be Shy

[sumrluvin66]

Hi Dmat01, thank you for responding to my post. I will look at caringbridge and your husband's story. I have questions for you, but I'm not sure if they're answered there and would just be repetitive. My primary question is when was it that he contracted meningitis? From what I have read about any form of bacterial meningitis, the severity of progression is a big factor in recovery. With me, I didn't have seizures, I wasn't in a coma (although I barely remember the day I had the spinal and being admitted) and I did not require being put on a respirator when they finally decided to be more aggressive with medical treatment. Mine was missed or misdiagnosed for 4 days, so I believe I have a very tired guardian angle or a team of angles that were with me during that time. In fact, I released from the hospital not knowing I had it. I was released on a Thursday and was informed the following Monday that the cultures came back positive for H. flu meningitis. That is not at all common in adults. It usually affects young children and is the one that they give the HIB vaccine, since the 80s. Well, I'm now in my mid 40's so I was not immunized for this illness.

You said your husband's was flu like at onset, mine was sudden. I spiked a very high fever, which was followed by a killer headache. I had a dull headache for three days prior, and the Friday I spiked the fever I felt very lethargic and crabby. Now I can define "Severe" compared to "Mid" as far as headaches go. My sister demanded I go to the ER that Saturday due to my description of my severe headache. I called the ER who referred me to a nurseline. The nurse asked me a handful of questions and then was quite forceful that I be seen ASAP. The ER did nothing being my white cell count was fine at that time. They told me I had a virus, gave me a pain shot and sent me home. Day 2 at the ER resulted in another pain shot and they sent me home with vicodin. The discharge said followup with your primary about your virus and depression. I was offended with that being I am not depressed. I may have appeared depressed being the pain resulted in me crying, whining, and I was irritable especially when they physically tried to get my head/neck to turn. That hurt! Plus, I looked disheveled being I had no energy to bathe or even brush my hair. I honestly don't remember if I told them on either day that the nurseline was worried about meningitis, but they missed it. A friend that took me to the ER on Saturday thinks I did tell them, but that is not clear in my memory.

Once I was told what I had, I googled meningitis and the type I had. All I know is it can be fatal (all forms of bacterial actually), and that it is not common. I have found varying statistics, so I don't know prevalence rates and life course. As you said is your experience and what I am now learning, I don't know if many professionals even know much about it. From my experience, I have found that medical staff are greatly minimizing what I had even while in the hospital. They did quarantine me for 24 hours. I was told either on Tuesday or Wednesday while admitted that I was septic, and that was minimized too. I live in rural Minnesota, so I am considering accepting a referral to a neurologist but I think I'm going to research for one that has experience with meningitis (if possible).

I SO appreciate this website and forum. I feel like I have whined so much to my family and friends about this, and it being a month later I don't want people thinking I'm trying to milk things for sympathy. Now I am learning the residual symptoms are not in my head, well they are but I'm not making it up! With new perspective, I feel greatly blessed with being alive number one, and my heart goes out to all who experienced FAR WORSE than what I did. I cannot imagine it being worse. I do know that as people we are resilient, and are capable of adapting to what life hands us.

I will now check out your husband's caringbridge page. Thank you so much for sharing. Jo

[sadlisa]

Welcome Jolene

Yes, I would go see the neurologist. The sooner you are evaluated the better. Are your headaches orthostatic (worse when standing, better when lying down?) Make sure to mention this to the neurologist if this is the case. This is a sign of spinal fluid leak. It could even be leaking from the lumbar puncture given to diagnose your meningitis.

Good luck and keep us posted.

Thia

[sumrluvin66]

Thank you Thia. I will search online this weekend to see if there is a neurologist in the Twin Cities that specializes or is competent in diagnosis and treatment of meningitis in its aftermath. I hope it is not a leak in the spinal tap site. My physician warned me it may cause a headache, but I actually found that humorous being I couldn't imagine a headache being worse than what I had when he was doing the procedure. He then said it was a "different" type of headache. I do have some transient discomfort in that area when I bend over or twist. My current headache is very very mild mostly except Wed and Thurs when it was a thumper again (scared me quite badly) and also transient. Here now, gone a minute later. I feel mentally dull, if that makes sense. Like when I am thinking about things or my "to do" list for the day...it is like I have a bowl full of thoughts in there, but there is a piece of saran wrap covering information I know is there. I just can't get to it. This is in addition to off and on vertigo or dizziness. Well, I meant for this to be a short post, and I am again guilty of being wordy. Thank you again for your post. Jolene

[sadlisa]

Hi Jolene

I have now been diagnosed with exertional headache(HA.) It seems my HA gets worse after I have done a lot of physical work. It is always there, but usually mild and manageable. You might want to keep a diary for a a couple weeks and see if there is a pattern to your HA. Your neurologist may find this helpful.

I had problems with words. I couldn't come up with it. A hammer was a banging thing. I also had trouble with math. For a long time I felt like I was outside looking in. Not quite there. I feel now like I have a hangover. The harder I work, the worse the hangover is. The recovery is long. You are lucky your primary doctor is willing to send you to a neurologist early on. It took 15 months before I got a referral to one.

I hope you are successful in finding a neurologist with knowledge of this disease and the after effects. Not a lot is known. I have had to do a lot of my own research. Very hard when you are trying to recover from this.

Good luck, Thia

[sumrluvin66]

I researched neurologists in MN and found one at the Mayo clinic in Rochester, MN that specializes in neuro-infectious disease. I filled out a form online with a request for him, but I assume they will need an official referral from my physician. Thia you mentioned difficulties with words and math. I've never been good with math, but it's rather ironic, but I was thinking this morning that I do struggle more with simple math concepts. I thought about going to a neurologist and having cognitive tests done with the math scores being very low. The hangover comparison is excellent. Sums up the feeling perfectly! I wouldn't have thought of that, but yes I agree!

Also, thank you for the suggestion of keeping a journal of symptoms. This will be good not only for the neurologist, but for me to be more aware of what triggers symptoms and to be more in tune to my body and when I need to slow down. I think I went back to work way too soon, but I used up all of my sick and vacation time with this illness. It was not my work that pressured me to be back, it was finances and concerns about folks I work with. I have noticed I require much more sleep than I used to, and I also take long naps on the weekends, which is so not me. On work nights that I'm off at 5 it is not unusual for me to be in bed by 7:30 and I have to force myself to stay up even that long. Now that the weather is getting nice, it bothers me a little that I have no get up and go to putz around in the yard. I hope this gets better.

I am losing weight without trying. I did have plenty to lose, but I am wondering if this is common. The antibiotics did mess up my system and two weeks after being done with them I still have intestinal issues. They tested me for C-diff, it was neg, so it is just my system trying to get back on track.

I need to go before I write more. Thanks, and happy Easter weekend to everyone.

[sadlisa]

Rest as much as you can. I too returned to work soon after and feel it is the reason I have not completely recovered. My work requires physical exertion. It is also seasonal. My season started one month after meningitis. It is really hard work for about 3 months. I was not warned about a spinal HA being possible after LP. I just know I always had to lay down after working a bit and neutralize. This would help me deal with the lightheaded feeling and HA. I was/am a very strong person physically and mentally. I thought I would just work through it and it would get better. You know how it is. The more you workout the stronger your body gets. Well , it seems different now. The harder I work the worse I feel. This is very frustrating. I love to work in the yard too. It is my escape. Good for the mind and body. Now when I do work, I pay. Listen to your body. If you need to rest, do it.

I was also very nauseated after and had to force myself to eat. It took a long time before the nausea subsided. I still get nauseated when I work too hard.

Let us know how this neurologist works out. If he/she has any suggestions to help with symptoms it would be nice.

best wishes, Thia

[sumrluvin66]

It's been over two months since I had meningitis, and I am wondering if it is normal still to have headaches and moderate back pain. Three weeks ago my doctor said he wants me to stop taking Darvocet for pain, but any simple activity (household chores, mowing) still causes a great deal of pain (moderate to severe) and increased ringing in my ears. I am wondering if I'm just being a whiner about pain or if others had ongoing pain for over two months after being ill.

Anyone, how long did you take pain medication to function day to day?

Thanks! Happy Spring to everyone!

[MailMe01]

Hi, Sumr:
Trying to recover from a hard drive crash! Yikes, talk about painful.....everything's gone!
Anyway, well over a year after meningitis, I was still feeling awful, getting more & more frequent headaches, and taking ibuprofen for them. When it got to the point of nearly daily headaches (again!), I started getting really nervous that I would end up back in the hospital with my brains fried for another go at meningitis. I started doing a little online research about headaches and imflammation and related topics, and pestered my doctors ovr & over. And despite what they told me (that ibuprofen did not cause my meningitis), my own nagging doubts coupled with an article I read about a study fnding evidence of ibuprofen increasing imflammatory markers in marathon runners, I decided to try a little experiment, and stopped using all NSAIDs (aspirin, naproxen, and especially ibuprofen), and after several rather difficult weeks, I STOPPED GETTING HEADACHES! And now, (6 months after stopping), if I do get a headache (not a frquent occurance), it's what I would consider a plain old "normal" headache that I usually don't even need to take anything for it! If I do, it's a minimal dose of regualr-strength Tylenol. I was never a Tylenol fan (cheap generic ibuprofen did the trick beautifully for me), but I think I choose to blieve I should never take it again! It's interesting that eosinophilic meningitis can be caused by ibuprofen, it's right there in the literature, but everyone insisted that was not the problem for me. And now that I've learned what I can about meningitis, my type seems very similar to viral meningitis. So who knows?
There is really no manual on how to recover from meningitis. I think everyone's experiences are individualized.....but maybe it's worth considering your pain relief choices.....

[sumrluvin66]

Mailme, I was wondering if my short-term memory would improve being off Darvocet, but it didn't. Now I only take it on the weekends when I'm doing a lot of yard work or have a lot to do in the house. I mowed for the first time last week and I could barely function when I was done, so I had to take one. Today, I did too being I had to do some heavy work outside. Being outside is my therapy! Kinda bums me out being I can't do what I used to. During the week my headaches are so, so and my back pain is moderate, so I just live through it. I did try Tylenol, but it didn't do a thing for me either.

That is the weirdest thing about Ibuprofen. I'm glad things got better once you stopped. Did you use it often before meningitis?

Sorry to hear about your car accident.

[MailMe01]

*giggle* Not a car accident, but a computer accident! I'm trying to rebuild my files, and am glad I had used an external hard drive to back up my music & movie files about a month before. Still, it's not as easy as they make it sound!
You have only recently had meningitis, so please don't rush yourself. Really. It took about a year and 1/2 before I felt reasonably normal again. And I've noticed with extra stress (work, these doggone sinuses, and on top of it, we recently lost my Dad), I feel worse, (weaker) and my ears ring louder, and my stamina is a bit less than what it should be. I've just learned to expect it and adjust accordingly. Give yourself a break! You can only do what you can manage, and don't feel bad about that. You will feel better than you do now, but it will take time. Hang in there! ---Jan