Eosinophilic Meningitis

[MailMe01]

Hi, Sumr:
No, I didn't drive myself, but I had been driving to and from work (4 miles 1 way, very rural, almost no other vehicles). Trust me, it was fairly easy (as long as I wasn't heading into the sunlight, that is!).
How long ago did you have your bout of meningitis? Mine was the end of summer '08. I chuckled a bit when I read about the "helicopter" sensations. I had them too (like a large ceiling fan was going, only there wasn't one), but also, I have to say, the FlightCare helicopter was landing day & night just across the parking lot outside my room. And as I was in there over Labor Day weekend, they were landing a LOT! I don't think the sensations lasted a long time once they started treating me for the meningitis, but they were there a bit in the beginning. But I was also very distracted by my roommate who had had a stroke and hallucinated a lot, bugs on the ceiling, taking to people who were not there, etc. (Made me feel like the sane person stuck in the insane asylum by error!) My problems seemed so very mild in comparison to hers! But the point is well taken that strange things can happen when your brains are inflamed. (My neurologist said my meninges were "lit up like a Christmas Tree" on my MRI.)
I don't think anyone would disagree with me when I say rest, rest, rest!!! I was constantly devastatingly exhausted. No, exhausted isn't exactly right......that implies you have worked so hard you simply have no energy left. This was a whole new level of exhaustion. It's very hard to describe what it was like. Absolutely drained to the point you are nothing but a shell, weak. Please, you have to rest unapologetically, for as much as you need to. Don't feel guilty, and understand it is your body telling you that you must! And it will help you heal. I have the best memories of my wonderful hubby just holding me while I slept (for months!), and that was the best medicine of all! In retrospect, having a whole month off work during a beautiful autumn should have been great.....and I tried to treat it like a gift, but I was just so scared. Worried I'd lose my position at work, worried my vision wouldn't straighten up , worried, worried, worried. But it taught me some things too, about myself, about my marriage, about my family and friends and acquaintances, about the selflessness of Drs and my terrific nurses!

[sumrluvin66]

I spiked a fever on Feb 26 and two ER visits and two clinic visits later I was admitted to the hospital on March 2 of this year. This was after a friend that took me to the clinic told me (I don't remember her telling me, I remember begging the CNP to check me for H1N1 and she said I didn't have that, so I then begged she look for meningitis) to ask about meningitis. I had to ask my friend weeks later how I knew to ask about that, because I couldn't remember! All I knew is I miraculously came up with that idea. =)

I wish they would have kept me in the hosp longer, but they released me not knowing I had meningitis. Being I'm in a rural area the spinal tap fluid had to be sent to Sioux Falls, SD to the lab there, so I didn't find out until March 8 I had H.flu meningitis. Then he put me on a different antibiotic at home. I want to be totally better and have all my spunk back. I have more not so good days (mild compared to when I was really sick), and maybe 2 good ones a week now. Good = not feeling totally exhausted to the point of forcing myself to stay awake past 7 pm. I did a bad thing to myself not knowing the HUGENESS of meningitis, I went back to work on March 10. Hindsight. Had I known how I'd feel today I would have tapped into my disability insurance or something. I was worried about being able to pay my bills so I went back. I wonder if I had taken more time off if I would be over this by now. I'm on week 6 of my recovery. I'm not deathly ill any longer, but my "residual" symptoms affect my work and quality of life yet at this time. I'm optimistic this too shall pass. =)

Thank you for sharing some of your story Mailme. I didn't have an MRI being our hosp doesn't have an MRI, and there are no neurologists in my area. I did have a CT that came up fine I guess. I was glad to know I didn't have signs of a stroke. I do have an appointment in mid June with a neurologist, and I wonder what they'll do at that time. I pray I'll be symptom free by then.

[MailMe01]

Wow, I can't believe you went back to work that fast. I'd like to call you a "Superhero", but I can say I do know how awful you are feeling and what it is taking you to get through the day. Again, it's really too bad the Drs don't know enough about the aftermath of meningitis to say, "You're going to need some time!", and then to make sure you get that time to recuperate. I was off a whole month (only because it took that long for my vision to return to normal) and that was not long enough. If not for the vision, I would have been back to work sooner, and I can't imagine how difficult that would have been. I know I was just exhausted all the time, I blamed it on the Keppra I had to take to prevent seizures (not that I had any....). I couldn't stay up past 7 or 7:30. I was not functioning well at work at all and was very forgetful and way more unorganized than usual. And I hate to say, with residual and increasing headaches (and worrying it was starting up again!) and 5 bouts of bronchitis, I had a very rough winter even last year. It's funny how we both compare how we were feeling as being nowhere as bad as the meningitis.....but admit it, you still feel bad enough to be worried (and I did too)! The good news is that it will get better. I can finally say I feel pretty close to normal, and it's been 18 months now. I just don't know if there is any way to hurry that recovery along. I think when you finally see the neurologist, ask point blank if they have treated meningitis before, and ask about what you can expect in the aftermath and if there are ways to recover more fully and faster. If there is nothing they can do to help it along, it'd be nice to know that up front. Best wishes to you, and please keep us posted! ---Jan

[MailMe01]

Another thought, have you been treat with steroids for the inflammation? I was treated with IV steroids (I forget, maybe every 6 hrs??) round the clock while in the Neuro unit, and with a steroid taper when released, and then a taper once or twice during the following 6 months or so when it seemed likeI was having symptoms again. Maybe something to ask your Dr about. And I think it's intolerable that you have to wait so long to get in to see a neurologist......what can they possibly do for you so long after the fact?

[sumrluvin66]

No, as far as I know I had no steroid treatment. He prescribed Aleve several times for inflammation but that was only for 5 days at a time. Currently, I am only on PRN Darvocet. I was prescribed Toradol in pill form, but was too afraid to use it due to all the warnings.

[dmat01]

You wrote a book! I would like to read your book if you could possibly tell me how to obtain a copy.
Although I am the cargiver, I am so glad the site is taking off, and we are all there to help each other. It seems like so many of the stories have the same threads throughout each story. Those threads are bonds we all share and need to share with others in the same circumstances we have been through.

Yes, most Physican do not know a lot about mengingitis. Most nurses don't either. Today, my husband talked with a nurse while visiting someone else. She was amazed with his progress. SHe said he must have some "will power" and "Determination" to have gotten as far as he has. Tomorow, is the sixth month mark since he was diagnosed. He does have a lot of both, as does so many others whom have faced this disease and lived through to. All of you whom have written on this site have been a great inspiration to me, and have affirmed our need to educate others concerning this disease.

My husband had a seizure.( within the first six month period) It scares me. This nurese today, stated that she lost her twenty year old son due to a seizure within six months from having bacterial mengingitis. Makes us realize how we have been blessed to still be facing this journey we are on. I don't have a clue what the seisure means for my husband or the future since the neurologist isn't concerned with the first seizure. Does any one have any experiences with seizures since thier onset of mengingitis and any information to pass on? As a matter of fact, this neurologist does not display any concern at all regarding anything concerning my husband, since I am being truthful.... that really hurts me!

One word of encouragement to others.... don't let the meningitis take it all. Whatever there is left that is under your control.... keep it. Mengingitis does take and take and take, but if you are fortunate enough to live through it, give life all you can..... keep that determination and will power as overcomers and let the world know what you know so that others will not go through what you did in the dark and without available information.

[sumrluvin66]

dmat
I've read your entries on caring bridge and I read your husband's story. I really feel for what he went through and continues to struggle with. You're doing very well with keeping such a positive attitude and I'm sure doing so helps him more than you might know. I think you ought to pat yourself on the back for being an unwavering support. BUT as a caregiver don't forget to take care of yourself too. That is a priority. =)

I'm sorry about your disappointment with his neurologist. I have yet to meet with mine. I could have gotten in with a general neurologist much sooner, but I searched for one that specializes in neuro infectious disease. I will be seeing a resident who graduates this year, and he is supervised by the specialist I originally wanted to get in with. I guess it's my opinion by seeing the resident I am actually getting two drs for the price of one.

I hope he has a good bedside manner. It sounds like your husband's either lacks that or maybe he just isn't well educated or had a lot of meningitis cases come across his plate. That has to be frustrating. I get that from my regular doctor, but I attribute his taking everything lightly as possibly lack of experience with meningitis. I do greatly thank him for acting aggressively at first by hospitalizing me even when he said he doubted I had meningitis. When I was released he said he was pretty sure I didn't have meningitis, but four days later the lab results clarified I did. As I've mentioned before I think if he had been better educated on how nasty this illness is and how it affects people's ability to think, process, remember things, track things mentally, and the ongoing discomfort/pain he would have told me not to go back to work within a week of getting out of the hospital. He didn't tell me to go back, he left it up to me and I thought I was being generous by saying I needed another two days to rest. Had I known then what I know now! I would have taken several more weeks off. Maybe then I'd be much better than I am now. I have to give him credit because after my contracting this it was clear during our last conversation he is choosing to become better informed. I appreciate that. =) Well, plus we have case number 4 in this rural community I live in. That is 1 in a smidgen over 1000 people s have come down with meningitis in the past 6 week.

I apologize being I tend to repeat myself. =)