Diagnosed with Viral Meningitis / Still have symptoms 7 weeks later

[John_Madison CT]

OK folks, I need your help.

About 7 weeks ago I had fever, bad headaches, sensitivity to light, nausea, etc etc etc....  Was hospitalized for 4 nights.  

During my stay, I was given IV antibiotics. (starts with a Z) and Doxycyline.  Docs say all Lyme type tests came up negative.  MRI was negative.
Also had a spinal tap, which showed some elevated White blood cell counts.  (I needed a blood patch because I got a Spinal Headache the next day when standing up)

I also saw a Neurologist who seems to think, so far, that I have viral meningitis and it could take 3 months to get better.


Anyway, after getting better from the original symptoms of the fever, profound headache and profound malaise, I got the shakes, weak-knee symptoms, and what seemed to be profound depression and anxiety.

I still get some headaches, ringing in my ears and other malaise of just not feeling well but do not know what component is caused from the depression and anxiety.    I tried Paxil(10mg only) and Buspar for 5 days, but did not feel well after trying them.   I do not know if this was from the Meningitis, or just psycho-symatic from taking meds.


I'm at a loss here really.   I want to know if its normal to feel poorly from viral meningitis so long after the initial strong onset of symptoms, nearly 7 weeks ago.

Is it normal to get into depression and have anxiety from such a dramatic change in life.   I have not been able to get back to "normal" really with work and fun.

I've read some horror stories about things like Paxil which make me very concerned.  Should I be?

[CCF-Neuro-M.D.-SH]

First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes. I agree that the symptoms and history you describe sound like viral meningitis (viral infection of the covering of the brain).  Viruses can also infect the brain itself (called encephalitis), which generally (but not always) will have lesions on MRI.  The recovery from viral meningitis can be prolonged and some people develop a "post-viral syndrome" that is similar to chronic fatique syndrome.  The mechanism/cause of this association is not well understood.  Depression and anxiety and even cognitive problems are possible after an episode of viral meningitis/encephalitis.
   Given your symptoms I would recommend that you get a repeat MRI with contrast at the 3 month point.  A small focus of scarring or old/chronic encephalitis may be present. Another possibility is that an area of your brain was damaged from your immune system reaction.  I would also recommend an EEG (electroencephalogram or "brain wave test") to ensure that you are not having sub-clinical seizures (often associated with viral meningitis/encephalitis).  If the paxil does not work for you, try another drug with a slightly different mechanism, such as effexor, Wellbutrin or Elavil.  Your recovery is going to take some time, some complications of this disease can be life long (cognitive problems, chronic fatique syndrome), but most people recover fully in 3-6 months.
I hope this has been helpful.

[John_Madison CT]

Sorry.   So in conclusion, GP says probably Viral Meningitis and it could take many months to heal.  Neurologist seems to think the same, with the possibility that I have "partially treated" Lyme because I was on Doxycycline for 4-5 days, but was taken off by GP because he is sure its not Lyme. (again, all tests came back negative.

I guess I just want to know if its normal to still have a general "sick", crummy feeling, with headaches, ear ringing, some shakes after 7 weeks.

OR, are these problems caused by the Depression and Anxiety that have seemed to come on the heels of my initial very poor health which lasted about 3 weeks.

[shippie]

Unbelievable - I was also diagnosed with viral meningtitis 7 weeks ago.  I am also still not feeling well.  The doctor (GP)keeps telling me it is possible to take up to 8 weeks to feel better. I still have headaches, joint and muscle aches and now the sensation to move my arms and legs.  I keep telling the doctor that I still feel sick. This is very frustrating.  I spend most of my day in bed.  Spinal tap on 7/7 confirmed the meningitis- showed 10 times the amount of cells.  Two weeks ago my WBC still elevated at 16,000.  My groin and underarms ache continously. If anyone has any suggestions let me know.  Dr. has not ordered any other tests since spinal tap in July other than CBC.

[John_Madison CT]

Shippie:    Can you email me?  My email is:  ***@****


Thanks,

John

[Kalio1]

I had viral meningitis twice in two years( those headaches WOW)both with spinal taps. It just takes forever to recover and slowly, slowly, you do. You have to REST, stay hydrated and don't over do it. Be sure and get some regular exercise even if you are fatigued, try to at least walk every day. By about the 3 month mark you are having a few "good days" in a row hopefully for you it will be quicker. I found if I over did it it would set me back some. Don't drink any alcohol or smoke if yo can help it, don't miss sleep. Eat right. Take vitamins. Rest when you are tired if you can. There is nothing you can do but wait it out. Inactivity itself causes tiredness so push to exercise if you can. The better care you take of yourself and stay rested the sooner you will recover. You might need antidepressants but I found just going through that was depressing! Try to realize how lucky you are that it wasn't worse because it very well could have been. Some ccomplications you guys ( and me) avoided can be life long so just take it easy, realize you had a pretty serious illness and do all the things the doctor above recommends. Hang in there, it is tough but you WILL get back to normal, just not as soon as you want.

[shippie]

I appreciate your post.  It is at least comforting (for lack of better word) to know it can take this long.  After week three  the frustration, anxiety and depression begins to set in and to be "sick" for this long you start wondering if something else is wrong.

[John_Madison CT]

Shippie:   You and I are in EXACTLY the same situation, nearly to the day.

          I find it very hard to face each day, and this means sleepless nights too.

          Facing months on end of this makes it tough, but knowing there is some light at the end of the tunnel helps a tad.

           I'm on day 5 of my Paxil (only 10mg) and I hope this begins to take away some of the depression/anxiety and despair.

John

[John_Madison CT]

I wanted to follow up here.   I am basically at 2 months from the onset of my Meningitis symptoms.

As I suspected, most of my symptoms seem to have been aleviated by Zyprexa (5mg) and Paxil (20mg).   The depression and anxiety that the Meningitis brought on caused me to feel absolutely terrible.

What is left now is some ringing in my ears and sound sensitivity, although not nearly as bad as pre-meds.


What I learned here is just how profound Anxiety and Depression can be on other parts of the body.   I felt as though I was falling apart.

I'll check in here from time to time and update things.

[Probeggar]

I am 11 months into my recouperation from a very serious attack of viral encephalameningitis.  The neurologist said it was among the worst he'd ever seen in someone who lived.  I found that elivil helped a great deal with the nerve pain, and had the secondary benefit of addressing my depression.  I was in the hospital for almost two months, and there was concern that I would never walk again.  

All I can find is that it can be a year before you start to feel like yourself again.  My whole system is still a bit out of whack... my bladder, digestive system, etc. are all different from what they were before the illness.

I have sort of determined that neurology is still a very unpredictable field, and that while I am grateful for all the advice I have recieved from physicians, I usually find myself looking into these issues on my own. I have decided to excercise more, drink less, and sleep more... I actually sleep longer than ever since the illness.  Good luck.  Stay positive and live a healthy life whenever possible.  

[John_Madison CT]

Just another follow up so that maybe my posts help other people.

I have been on Zyprexa (5mg) and Paxil(20mg) for a few weeks.  I fell 100% better !!  (YES !!!)

What this tells me is that most of the symptoms I had where caused by depression and anxiety, NOT Meningitis symptoms.  It is incredible how poorly I felt !!

I also learned that depression and anxiety are quite common after being hit with a virus.  I think it's called post-viral syndrome.

Thank you to everyone for helping me !!!!  Thank god for this forum.

[Probeggar]

Congratulations.  I too have struggled with maintaining a good attitude, in hopes that it would help my overall health.  For what it's worth, I have finally developed feeling in my cheeks, after about 10 months of complete numbness in my face.  This is good news, as it means that nerves are likely regenerating.  

Best of luck to you.

[ariddle4u]

I was diagnosed with viral syndrome mimicking viral meningitis on 11/5.  I had severe headache that woke me in the morning, developed a fever of 102.1 in the night with stiff neck, nausea and depression.  Today is day 10 and to be honest, I thought I would feel better by now.  I was starting to worry that something else was wrong since I still have low grade fevers and malaise.  Looks like by these posts, I am not in this boat alone and could be a lot longer before I start feeling normal again, if ever??

[Jess2006]

I am so relieved to have found this forum. I too was diagnosed with viral meningitis, in the first week of September 2006. It’s now November, and not only do I seem to have residual symptoms, I seem to be prone to relapse. When everyone else around me gets a head cold, my old meningitis symptoms come back with full force instead. All the sources I consulted say viral meningitis should go away with in 7 to 10 days, but I was seriously ill for six weeks and still don’t feel 100 percent more than two months later. I’ve just made an appointment to see a neurologist, as I was getting really scared that something more serious was wrong. I had no idea there were others out there with similar experiences. That means a lot.

I'd had symptoms for nearly three weeks, but put off seeing a doctor for a number of reasons, namely the high deductible on my insurance. But after seeing my regular doctor and having a round of blood tests done, she sent me to the emergency room for more tests. I'd been getting progressively worse ... It started with a week of intense headaches. Then my neck started getting progressively weaker, until I couldn’t hold my head up. The third week included these symptoms plus lightheadedness and tingling in my arms and hands, to the point where I almost passed out just sitting at my desk. At this point I was downright scared ... I thought I'd had a stroke or a bleeding aneurysm. (I'm 26, female, and in otherwise decent health...)  When I started throwing up my meals and waking in the middle of the night to vomit, something was obviously wrong. I also had a mild fever; neck that was stiff but also weak, like whiplash; incredibly painful sensitivity to bright lights; and disorientation and extreme confusion. Even thinking was painful.

The ER doctor put me on an IV for fluids and morphine. He ran a series of tests including West Nile (which came back negative, but I do live in Idaho, where West Nile runs rampant). He also ran a CT scan, which came back normal. They finally ran a spinal tap, which was incredibly painful due to the position of my body when they were poking me. He kept missing and poking me in the vertebrae. That was intense.

At the end of a miserable night spent in the ER, they sent me home with my diagnosis, armed with drugs. For the next four weeks, I took Darvocet for the pain in my head and neck, Reglan for the nausea and dizziness (which worked pretty well for me), and Ibuprofen 800 for inflammation. I was forced to take two weeks off work without pay, which was incredibly hard. My fiance and I were moving into a new apartment at the time, and I was on strict bed rest/no heavy lifting by orders of my doctor. That also was hard.

Three weeks after my ER visit, I was slowly starting to feel better. I was sleeping 10 to 12 hours a day as instructed, overloading on fluids (I drank quite a lot of Gatorade), and trying to eat food with high nutritional value. I was on the upswing. Then out of nowhere, at the same time my fiance caught a cold, I felt really dizzy and sick all over again. I again went to the doctor, who ruled out strep throat, but gave me an antibiotic just in case, and I started taking Reglan again. Within a week I was feeling better.

But I still have some residual symptoms, including some dizziness and nausea, fatigue, and neck twitches, which I refer to as a "tick," for lack of a better description. Just today I started feeling much worse, which prompted me to seek out a neurologist. Then I found this forum. It’s good to know I’m not the only person who’s taking weeks or even months to recover from this illness.

It’s going to be tough for me in the next few weeks. I’ve been forced to work 7 days a week, in part due to my financial situation, but also because we’re really short-staffed. I work at a newspaper, where I sit in front of a computer for 9 hours a day, under really bright lights. This aggravates my symptoms. I’m also suffering financially, which makes it really hard to afford healthy foods. The one thing I found that helps more than anything else is, believe it or not, exercise. I found that my last relapse was due in part to spending too much time resting. As soon as I started walking a couple blocks a day and doing pilates, I started to feel better.

I haven’t tried any antidepressants, because I generally don’t react well to them even under the best of circumstances. But I have found that the worse I feel, the more quickly I get frustrated, lose my patience, and have a really, really hard time concentrating, and I am brought to tears very easily. With time and rest, the psychological and emotional effects fade.

The suggestions here have really helped. My recommendation, after having been through it all, is treating the symptoms as best you can without overloading your body with foreign chemicals, and making sure to get some mild physical activity in a few times a week. And, of course, rest, food and fluids. Please, if anyone has any advice for recovery, don't hesitate. I’ll check back in after I visit the neurologist. Thanks, everyone :o)

Jessica

[josiebird]

Hi, I was diagnosed with Viral Meningitis in October 2006.  I could not get out of bed for 3 weeks my head hurt so bad.  After that my recovery has been really slow.  It truly feels like you are never going to get better.  
I was so happy when I found this website as I truly thought something else was wrong and that I was going to die.  Who would have thought that Meningitis could cause such wierd symtoms.  I experienced vision changes (blurred vision),  the sensation of water running in my brain and just general feeling crummy.
I am now left with very numb and painful hands.  Not sure if this nerve pain and if I should be treated for this?  Any suggestions.  Also, when I put my head down to my chest, I get pins and needles running down my spine and arms.  My skin feels tingly on my back most of the time.  Are these normal post viral symptoms?
Some weeks I feel OK, other weeks I dont feel so great and have to take it easy.
My advice, rest, drink lots of fluid (even coffee and tea help)and try keep your chin up.  You will get better slowly. (note - slowly)
Any other suggestions or advice would be great.
Thanks

[josiebird]

Hi, I was diagnosed with Viral Meningitis in October 2006.  I could not get out of bed for 3 weeks my head hurt so bad.  After that my recovery has been really slow.  It truly feels like you are never going to get better.  
I was so happy when I found this website as I truly thought something else was wrong and that I was going to die.  Who would have thought that Meningitis could cause such wierd symtoms.  I experienced vision changes (blurred vision),  the sensation of water running in my brain and just general feeling crummy.
I am now left with very numb and painful hands.  Not sure if this nerve pain and if I should be treated for this?  Any suggestions.  Also, when I put my head down to my chest, I get pins and needles running down my spine and arms.  My skin feels tingly on my back most of the time.  Are these normal post viral symptoms?
Some weeks I feel OK, other weeks I dont feel so great and have to take it easy.
My advice, rest, drink lots of fluid (even coffee and tea help)and try keep your chin up.  You will get better slowly. (note - slowly)
Any other suggestions or advice would be great.
Thanks

[suellis]

I was diagnosed with Viral Meningitis in 1999 (mid 20's) and hospitalized for a week. After discharge I spent an add'l 4 weeks barely able to walk. Extreme all over body pain, headache, sensitivity to light, greenish skin tone and inability to walk. I relapsed in April 2003 and became ill again with VM confirmed by my 2nd spinal tap. The 2nd time was not as severe and I recovered for about two weeks at home. Since then I've never felt like my old self even developing new allergies especially to alcohol and caffeine. This past November 2006 I visited a new Infectious Disease doc to discuss my problems and address my ability to catch everything my loved ones seem to get. After a ton of tests she found my IGM titer above the highest reference range for West Nile Virus. I'm considered to be in the "recent/convalesent" infection stage. After reviewing the labs from my LP's she confirmed the initial infection to be 1999! I feel lucky to have survived but will now proceed to a CSF Specialist for another LP to rule out early signs of MS, ALS or anything else. We also found Mono, Epstein Barr (Chronic Fatigue Syndrome) and Mycoplasma Pneumonia. Surprisingly ER's are not testing patients for WNV who present symptoms of or are positive for Meningitis/Encephalitis. This is a direct protocol violation of the CDC. If I would have know in 1999 what I now know they could have at least tried anti-viral drug therapy on me. This has been extremely frustrating and litigation envoking. Good luck to all who are still suffering from meningitis. Beware if you don't improve,keep demanding more and more tests :o)

[RobynCos]

A related discussion, Viral Meningits was started.

[kugrrr]

A related discussion, Recovery from viral meningitis was started.