Eosinophilic Meningitis

[MailMe01]

Hi, everyone:
I spent most of last summer with increasingly severe headaches (and my family Dr had moved away!). It got to the point that my head wanted to explode. I went to the local walk-in clinic and was taken into the ER and told I had the flu (no labs or testing done) & sent home with a prescription for Flonase (which I did't even bother to fill). The one good thing they did was give me a shot for the headache which helped for a few hours. A few days later I developed spots of light in my vision, so my daughter (an RN) took me to her ER, where they did labs & a CT scan and found a small brain bleed just to add to the fun and games. Because of that bleed, the ER Doc thought I had a stroke, which bought me the fastest ride to the nearest hospital with a Neuro Unit 2 hours away, where they finally sorted things out and diagnosed eosinophilic meningitis. I had many MRIs and 2 spinal taps during my time there (and really, I've heard all the horror stories, but mine were not bad at all! Thank God for skillful Drs!) After 2 weeks and lots of steroids, and Keppra to help prevent seizures, I went home to recover. It took nearly a month for my vision to return to normal (caused by the brain bleed), then I had to go back to work. In retrospect, I needed much more time to recover, but could not take it. My neurologist finally took me off the Keppra almost 2 months ago, and I'm thrilled because it made me so sluggish and tired (10 hours of sleep a night was not enough!) Now I can stay up past 7:30 at night!
I'm wondering about everyone else's lingering side effects. My hearing was affected. At first it sounded like "listening to a seashell", but then progressed to ringing, for the last 10 months non-stop. It gets louder when I'm tired or stressed or not feeling good. Nobody seems to have any answers about it, but I guess I can live with that. I know it's notoriously diffcult to treat anyway. I still get headaches (sometimes feelng faintly nauseous), but they're not like the ones I had then. My head just feels "different", I'm a bit foggier, I'm occasionally a bit clutzy. My memory is not as sharp as it was before. If you tell me 3 things and distract me, I'll forget one or 2 of them before I can get them written down. I also seem to be very "scent" sensitive. Strong perfumes & air fresheners bothered me before, but now they REALLY bother me, to the point that we had to switch to unscented laundry soaps, etc. Anyone else have those problems? I'm having trouble getting much relevant info on "my" form of meningitis, and no answers about why it happened in the first place. Looking forward to hearing about anyone else's experiences. This website seems like it should be THE place to go to for honest peer support and info without some of the "junk" you read on other boards. Get it going and keep it excellent!

[sadlisa]

Hi MailMe01,

Some of your after effects are very similar to mine. I can relate to the foggy brain. Kind of a lightheadedness that never goes away. Headache is usually slight, but there behind my eyes and sometimes migrates to the base of my skull. I also have the ringing in the ears as I did lose my hearing in the right. I was nauseated all the time for a while. Now it only is bad when I exert myself too much. In fact, all my symptoms get worse with exertion.

Did you lose any hearing at all? Any neck/shoulder stiffness? My doctor is now thinking of removing my right inner ear to see if it will relieve my symptoms. He feels the nerves in my ear are still sending signals to my brain. Since I lost all the hearing in that ear, I've really nothing to lose. I am hoping he will also be able to check for a csf (cebral-spinal fluid) leak with the use of fluorescein during surgery.

Do you remember any injury to your head or neck before your meningitis? I am not familar with eosinophilic meningitis. I think I will google it and see what I find out. I wish you continued healing.

Thia

[MailMe01]

Hi, everyone:
Just an update. I sure can't say "I'm all better", but I'm quite a bit better. It's been, let's see, 17 month now, and I function fairly well these days. It's still difficult to keep track of things, and let's just say 'making a mental note' to remember to do something is laughably useless! I don't consider myself handicapped, yet I sure have to make extra efforts to stay on top of things like that. Sticky notes are a godsend and my life is wallpapered with them. My ears still ring and it's actually a pretty good indicator of stress levels or an impending cold. (And actually I never get colds.....it automatically goes to bronchitis!) I still tire fairly easily, but I'm a bit more durable than a year ago for sure. Math remains a continuing problem for me. If I don't have enough fingers, it's off to the calculator. Thank heavens my iTouch (always in my pocket) has one! And it's not only math, but numbers in general, which is difficult because I work with addresses. But it seems to get a little better slowly over time. By the way, I also got an app for my iTouch, called 'Brain Wave' that plays 2 slightly differing tones, one in each ear, and as has a choice of 'cover sounds' (my favorite is Thunder Storm). There are settings to use for relaxation, stress relief, concentration, positive mood, deep sleep, etc, etc, etc. I use it often and found it a great help for headache relief (using stress relief setting).
And some interesting side notes: I happened to read an article about a study done concerning ibuprofen and inflammation (seeming to cause it in marathon runners who took it 'prophylactically' before races) in the NY Times. I mentioned it to one of my doctors, who (probably in exaperation) finally said that he takes much more ibuprofen on a daily basis than I did, so ibuprofen did NOT cause my meningitis. And yet I was getting more frequent headaches (and getting a little worried as I sure did not want another try at frying my brain with meningitis!). My type of meningitis seemed to act more like the viral type, and I'd read that some with the viral type get it over again, some many times! So I did my own little experiment and stopped using all NSAIDS (aspirin, ibuprofen, naprosen). I had some pretty severe headaches, including last fall on the day of my last visit with my neurologist (by then day 3 of the headache). And guess what? Slowly, they went away! I basically stopped having them! I've had none that last more than about an hour and are so very minor and don't even require me to take anything. Interesting! Right or wrong, (clinically proven or not) I guess I choose to think I should stay away from ibuprofen.
I guess what I'd like to say to everyone suffering and wondering, is that in my limited experience, my doctors (including my neurologist) seem to also have limited experience with meningitis, and even less experience with the aftermath. Understand it is a fairly rare thing to happen to a person. Expect your recovery to be slow. Look at me, I never was comatose, but still ended up damaged by the experience. If you were comatose, expect your recovery to be even more difficult. Do what you can to challenge and stimulate your mental processes, play memory games, do puzzles, etc. Use little tricks to assist you, write things down, (use internet resources for memory assist, as there are plenty of them!) Keep working at it and don't get discouraged. You may not return to 'perfect' but you can improve!

[sumrluvin66]

I didn't have Eosinophilic meningitis, but I'm glad I read the posts! In reading about how this has affected hearing really hit home with me. I guess I'm used to the ringing I have in my ears at this point, and someone mentioned noise that sounds like you're listening to a sea shell...what a great way of explaining it! When I was hospitalized, I remember neurological experiences where it seemed I was in a helicopter...it wasn't a hallucination but what I was hearing reminds me of helicopter blades going in slow motion...a swooping sound? It was quite loud and it was hard to focus on the 1001 questions medical staff were asking me. It was scary. I told the nurses but I was quite out of it so I don't know if they didn't understand or if I even made sense. Now I have constant ringing. Thanks for posting how it affected hearing! I also appreciate the great tips on doing mind stimulating games and for short-term memory issues to take notes.

[dmat01]

MialME01- Thanks for your post. I like your attitude. I am sure that your infectious attitude has been a very useful tool in your recovery. In my husbands case, he was comatose- and it is a hard journey. But just like you- we look for the best even in the worse situations. Guess what- it helps! As I was reading your post, so much of what you wrote, I found my head shaking up and down in agreement. It is harder, but not impossible to regain what others see as atotal lose. Many things my husband has forgot how to do, he has re- learned or maybe learned a different way to do it. Is he doing things right, on some things I can say yes, and other things I don't know since I was never a welder, worked on car motors, or other so many other things he is relearning. But it looks right to me and it works like it should- so it must be right! He can not do 2-3 steps, he must keep in very simple. We live with a motto that works for us.... we don't have it altogether but we will get through all of this together.

There is not much info out there. Mostly I am told, even from medical professionals, they do not see many cases of any meningitis. We've been told that living through bacterial meningitis at any age is remarkable. Usually they ask more questions of us, getting answers they are searching for- then any questions that they can answer that we ask. It is frustrating at times to hear... only time will time or ... there is really no answer as to when or how much recovery to expect....... but it is what it is, and we have no choice but to travel this outcharted path to wherever our future goes.

Again, thank you for your post. I look forward to seeing more information coming from you in the future.

[MailMe01]

Thanks for the interaction, everyone! (This is more like it!) It's a lttle sobering to think the average Dr really has no answers about the aftermath of meningitis beyond what they may have seen it their practice, or more likely, what they have read about it. So in many cases it's not unreasonable to think we are teaching them. Well, so be it. If I can make it easier for someone else, then some good has come of this strange thing that happened to me! All I ask is a Dr that's not too proud to say they don't know and are learning. And that's a pretty rare quality, I think.

[sumrluvin66]

I agree regarding the aftermath and how much is known by medical professionals. My classic meningitis symptoms were missed two days at the emergency room. It was implied I was faking my symptoms for pain medication. I found that out from one of my friends who took me in on the second day to the ER. I was greatly offended by that.

Was anyone else out there quick to overreact or afraid of going through meningitis again? I feel like I'm harassing my doctor with this and that. When I was really sick I think I minimized things, so I've done a 180. I guess I don't trust my body anymore or my judgment about my health needs.

[sadlisa]

Yes , I do feel as though I did not stress how bad things were in the beginning. I did fear I would get meningitis again. The doctors do not know that much about this disease. When you try to share information about what research you do, some are offended. I am tired of being told I am depressed and anxiety is making my symptoms worse. I am not depressed. I have issues and can't get support from the doctors. It is as if they think it is all in my head. Who wouldn't get a bit anxious.

I think there is a cause for my symptoms. It is cause and affect. I work hard I feel worse. I have had to push for testing to look for this cause. This is very frustrating. We must be are own advocate and we don't feel good.

[MailMe01]

Wow, I can sure agree with your experience of the ER missing "Classic meningitis symptoms"! My head hurt so bad, and I even had to ask them to turn off the lights because they were way too bright! (Duh, has anyone there heard of photophobia?? Talk about a CLASSIC meningitis symptom!) Then they tell me it's just the flu. Bah! If I only knew then what I had to learn the hard way......
Maybe it's just a case of being trained that "most likely it's not the rare thing, but the more common thing". But in the case of bacterial meningitis, that attitude can kill someone. Literally, minutes count! I'm thankful my type was not as serious. But when you take into account that I was hurting for maybe a couple of weeks before it REALLY got bad, then an ER trip, 2 days later a different ER, 4 days more to try some of the meds from my new Dr, and action finally when my head felt like it wanted to explode and the vision problem (I started seeing a spot of light!). I had tried to explain to the 1st ER doc that there was a small area in my field of vision that seemed "funny", that I could look there directly, and could see, but it was also like I couldn't quite "see" there, like it was faintly gray there or something. Yes, vague, I know, but it was the best I could do. And nothing more was ever done about that. One of the ER docs asked why I didn't insist the 1st ER take me more seriously. Well, let's see, first of all, my brains weren't working all that great considering they were totally inflamed! Maybe today I'd be a bit more forceful, but I never was a complainer before. And in retrospect, I "toughed it out" for way too long. But again, I just thought it was a really rotten headache. Not until the 2nd ER doc asked all the right questions: "Have you ever had a headache this bad before?" (No.) "So then you would say this is the worst headache of your life?" (Yes!) Made all the difference in their assessment of what might be happening with me, and in what happened next. (CT scan, and they found the small (incidental?) brain bleed!) And lo & behold, within 24 hours, my vision was totally screwed up, in that very spot where it previously seemed to be gray! The bleed turned out to be in the area of my brain that processes visual images (whaddya know?!).
In the aftermath, I felt so totally scared of every little twinge and ache. Where I was tough before, I was feeling so vulnerable and powerless (why did this happen to ME??), and that was probably the worst, to feel so out of control of your own body. I pestered my Drs with questions probably too much, and got very little reassurance in return. I realize now because they probably had no information to give me. And more important, how to make sure it never happens again? And all I can say is that it takes time to feel comfortably normal again. (Not perfectly normal yet, but almost nearly so!)

[sumrluvin66]

Depression? Yes, I was pegged as depressed before I was hospitalized. The ER dr told me to follow up with my primary dr about my "virus" and "depression." Ok. Yes, each time I was seen at the ER I was crying, moaning, irritable and begging for help. Once they gave me a toradol shot I calmed down and they sent me on my merry way. Well, except the second day when I begged for some pain medication to help once the toradol wore off. Like you, Thia, I'm not depressed. I think right now I am clearly anxious and fearful like you. I filed a complaint with the hospital for my treatment (lack thereof) and missed diagnosis. On the first day I did inform them that the nurseline I called said she was very worried about meningitis, and was quite forceful that I go to the ER. In the past 6 weeks there have been 3 cases of meningitis here. One died a week before I got it, and one 3 weeks later is now on life support and has swelling on his brain. Goodness. When I hear things like that I feel truly grateful, but it also makes me fear getting it again worse. The guy in the hospital has encephalitis as well.

Photophobia. Yep, had it. I had a winter scarf tied around my eyes and also when I went to the clinic the day I was hospitalized I had them shut the lights off each time they left the room. When I had to walk I'd cup my hands over my eyes like I was on a beach. It was no beach tho! The first day in the hospital I kept my coat on my head because of the light. They asked me on all days I sought help if I had headaches or migraines, and I'd say, "no." Then they'd change the way they'd ask, so you must get headaches often, "ahh, no." I've had sinus headaches, but never a migraine type headache.

Wow. All I can think is that most physicians must not ever cross paths with meningitis because as I read others posts we all seem to have so many things in common.

I do have to say that the dr who admitted me called me Thurs when I spiked a 99.9 temp (which is a little high for me, not the 103.3 when I had meningitis tho) and he chatted with me for 30 minutes. He had told me that if I spike a temp he would be very aggressive with treatment. He clarified temp as over 101. He then gave me some words of hope in that it is very common for residual symptoms to last for 8 weeks or so. In June I have an appointment to see a neurologist, nothing like waiting a long time but they're booked out that far. My dr said he wants to see me for checkins more often now until either my symptoms go away or until I'm seen by a neurologist. I do have good days, but what I mean by that is I don't get a pounding headache or stabbing pains. Right now I have to struggle to stay awake most nights and often am in bed by 7:30. Ugh. It's getting nice out and I want to walk, and putz in the yard but I am so tired I don't have the energy. In talking with my dr he didn't know that when I had my spinal tap I had taken two does of antibiotics. He said, "Oh, well that explains why" the culture suggested I had "mild meningitis." He then said, "ohh, you had classic meningitis, but the antibiotic was already working when we did the LP." I think what bothered me with the word "mild" is that I can't imagine the pain I was experiencing could have possibly been worse. I in all honesty wouldn't want to know.

Mailme, did you drive yourself to the ER? If you did, my goodness! I don't know how you did it. I was fortunate that each time I sought medical help I had friends take me. The one that took me the day I was admitted said she wouldn't have allowed them to let me walk out of the clinic. How can you demand or advocate for yourself in that condition??!! It causes disorientation and in my opinion all of my focus at that time was pain. How long ago did you have meningitis?

I did it again. I wrote a book. I'll stop now. I hope everyone has a safe weekend.