4 weeks later

Hello everyone, I am new to this site (just signed up about 5 minutes ago after seeing it pop up on a google search), on September 30th I woke up feeling odd, as the day went on I had the worst pain I'd ever felt develop in my head. After talking with my parents (I'm a teenager and still live at home) they reassured me it was a migraine and I would be ok but something wasn't right. My father and I had gotten into a huge fight as he called me a baby, said I overreact to everything and said I am a hypochondriac. So I had my friend take me to an emergency room locally (has TERRIBLE ratings, quacks) and they said it was also a migraine and sent me home. Three hours later I drove back begging for help, they pumped me with some pain meds and again sent me home, quite rudely telling me to "suck it up". I made an appointment with my doctor later Thursday morning, she took overlooked it and said it must just be an intense migraine. As time went on I got worse and worse. My doctor had given me Vicodin (which we found out I am allergic to), Immitrex, Benedryl and told me I would be ok. But I knew it wasn't. I had begged my dad to drive me over an hour away to a city hospital and he did, as soon as I was wheeled in the nurses slapped a mask on me stating "oh dear lord, we think she has meningitis". At this point my dad had realized I wasn't a baby, I wasn't faking, and I was not ok. The doctors and nurses had a very hard time getting blood and IV's, as I naturally have tough veins to find, and I was so dehydrated. My temp was 103.1 and my BP and HR were through the roof so they were the first focus. Then the doctors marched in saying they were going to do a spinal tap and I about passed out. This hospital is a teaching hospital, so the tap was done by a doctor and also a student doctor. The told me what was going to happen and that I would be just fine. The put the needle in me with the numbing medicine then said they'd draw the fluid and it'd be done in a snap. Yeah, ok. They got the medicine in, went to get the fluid and I heard "oh no, shit" which of course I FLIPPED out. My dad had to stand outside of the room but was looking in through the curtain, at this point he was also curious what was going on, and starting to get a little antsy with waiting around. The docs explained that they had drawn out blood instead of spinal fluid and that they needed a smaller needle. I made them give me a five minute break so I could get sick, then they once again stabbed me to numb me. This time when they went in they had hit a nerve on my right side and the whole right side of my body jolted. At this point I was a wreck and wanted this to be over with, so again they tried and 3rd time was the charm because they FINALLY got spinal fluid. After that the nurses got an IV in me with some pain medicine, drew some blood and I fell asleep for quite awhile. A few hours later the doctor came in to wake my dad and I up (by this time it was 2am October 2nd, my dads birthday, god bless) and he explained that I had meningitis and I would be transported upstairs to the neurology floor for a few days. I had never stayed overnight in a hospital, so that itself scared me, and being so far from home. But thank goodness the nurses and staff were 100% amazing, I honestly credit the nurses to me being here. The docs went back and forth for two days whether I had bacterial or viral, the test results were not back. So they gave me medicine for both. I was on a 24/7 IV drip of antibiotics, pain medicine, and fluids, on top of shots to the stomach every 12 hours to prevent blood clots. I threw up, cried, screamed, had anxiety attacks and thought I was going to die. But on the 5th I was released back home. The nurses, doctors and I didn't see eye to eye. The nurses and I thought I should've stayed longer, as at home I am typically alone 24/7, on the second floor, with no neighbors. If something were to happen or I needed medical attention I would be in trouble. But, the docs assured I would be fine so I went home. I took a week off from college and a week off from my 2 part time jobs then dove back in. A month later I am having quite a bit of troubles. I can't remember a day with headaches or without having to take Tylenol/Advil. I'm tired, ALL THE TIME, although I slept a lot before, nothing compares to this. And also I seem to have a lot of emotional issues since this whole ordeal. Going back to college my skin was peeling/rashing from all the medicine pumped into me while in the ER, so the gossip and rumors ran wild. And of course I put on like 10lbs (I'm already a BIG girl, so that just made me feel even worse). I don't want to complain to my family because I'm sure they'll tell me my body is recovered and I'm fine and etc. They felt bad when I returned home because of how they treated me, the docs said if I would've waited another day to come in I likely would've died, and my family had thought I was crazy and overreacting, so they apologized and whatnot. I guess I just wanted to share my experience, and I wanted to know if anyone else has had lingering meningitis effects? Or if my body should be completely back to normal? Thank you all for listening/reading,

Shannon

21 Replies

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  • Shannon.

    First of all welcome to the forum.

    2nd of all depending on how severe a case of meningitis u had will determine e how log it will take to recover.

    And by the way. ALL cases of meningitis are serious.

    That being said all classes that are not crucial to your degree that you can drop without penalty and drop now.

    Go to your faculty advisor and explain how sick you have been.

    I am 41 years old and 2 and a half years removed from my meningitis case which sounds a lot like yours.

    I am just now getting away from the headaches. My short term memory is shot to hell. Not alzheimers dementia bad but not good either.

    You need to take it easy for a good solid month or til your body says you can do more. So pick one class maybe two and stay with those and drop the rest.

    Lots of helpful people on here. Read my old posts and you can see what to expect.

    Stop taking advil ibuprofen. Take Tylenol acetaminophen as needed. Stronger if the doc will give it to you. I was on hydrocodone for 4 months.

    SilverCharm

  • Thank you for the welcome :) I am seeing this site is full of kind and supportive people, it is so refreshing to know someone understands what I am going through! All of the classes I am taking now unfortunately are needed for my degree, I am supposed to graduate in May so I have to continue on with them to graduate on time, I am very thankful that my teachers have been so understanding and the work load has been quite easy. I was also starting to notice my short term memory has gotten worse, but I thought it was all in my head, I'm glad you know what I'm saying! I'm also so glad to see at some point that the headaches will stop! At my one job I work running a Subway store by myself, lifting heavy boxes and moving 24/7, my other job is at a daycare but I haven't been there very often at all, maybe 8 hours a week. I figured my immune system didn't need to be around sick kids all day, and lifting them and running after them was too much for me. I will ask my doctor this week about what pain meds will help me. Most prescription pain meds like Vicodin or Hydrocodone I'm allergic to, so I'm limited in those but fingers crossed we can find a happy medium! Thank you so much for the reply, I appreciate it!

  • Hi Shannon, firstly glad you're here and still with us :-). I had viral meningitis in 2002 and it was nearly fatal, not helped by the fact that I was discharged from hospital too early. The degree of after effects does depend to some degree on what form of the illness you had. Viral tends to be fatal or near fatal in around 1 in 100, 000 cases which is a lot lower than the other strains of the disease but the after effects tend to last longer. I can only talk about VM but I can tell you that I was off work for nearly 6 months and have been left with a variety of after effects like constant and varying intensity headache, seasonal affective disorder and intolerances to things like cocoa and alcohol. I desperately wanted to be back to normal but I had to adjust to what normal means to me. It isn't a life sentence though and I now run my own business and also have completed three half ironman 70.3 triathlons since 2012. With the painkillers my neurologist told me that they start to lose their effect after three days otherwise you will start to need more of them to achieve the same effect, it's a ever decreasing circle so talk to your doctor about alternatives. Prior to that I was doing shorter triathlons. The key to recovery though is to ignore what other people think you should be like or how you should have recovered. My doctor kept telling me I was imagining the after effects just to avoid going back to work because he had never treated anyone with VM before, we had a bit of a heated exchange and he had to admit in the end that he didn't really know anything about VM. You know you're not a hypochondriac and you followed your instincts about how ill you were. Listen to your body, rest when you feel like you need to rest and own how you feel. If you were a hypochondriac I doubt if you would be at college plus taking on two jobs, you clearly are a strong person. Don't let anyone tell you how you feel because in doing that before that nearly cost you your life. The symptoms and after effects do fade with time and for most people they subside completely but be kind to yourself and as I say own how you feel. Good luck and hang in there :-).

  • Thank you so much, I'm very glad to be here :) your message helped me IMMENSELY, thank you so much! I'm glad things have gotten better for you and you are getting back to the things you love; that gives me hope! I'm really starting to think I pushed myself too soon to get back to work and school, and I also think I was discharged too early from the hospital as well. I really really liked how you said " I desperately wanted to be back to normal but I had to adjust to what normal means to me" I actually wrote it down, I think that will help me a lot to remember there is no set normal, no set date that my body should snap back to normal. I guess I really need to be kinder to myself and cut myself some slack and just ignore all the nay-sayers. I will call my doctor this week about my headaches and see if they can refer me to a neurologist, as I've never been to one. As of right now the only pain medicine I can take is advil/tylenol. The doctors had given me Vicodin at one point but we learned that I can not take narcotics, as I'm allergic which is quite a bummer because I just want these headaches gone! Hopefully me and my doctor can find a happy medium. I've seen her since I was 3 months old so she knows me really well, hopefully she'll see I'm truly in pain and won't jump to conclusions. Thank you so much for your kind words, you're right, I need to start trusting my own instincts and owning how I feel. My body feels the way it does for a reason and I feel the way I feel for a reason, I need to start accepting that. Hearing someone say those things and call me strong made me entire day, I needed that! It is how crazy how I was so set on listening to everyone before when I almost died from it, I will definitely start trusting my gut more! I cannot thank you enough, thank you for being so kind, it's very appreciated! :)

  • Happy to help, I write a blog on here so please feel free to have a read and see if it helps. I am also happy to support by email as and when you need it, I can message you my email address if you would like and you can contact me as you need. I'm in the UK so there may be a time delay in replies though!

  • Thank you so much! I appreciate it a lot, I check my email quite frequently so that would be a good way to contact me! :)

  • No problem I've sent you my email address via IM 😊

  • First of all - I am glad that you did not listen to the doctors who told you it was only a bad cold or migraine. It sounds like the doctors and nurses in the city hospital knew you were much more serious. I had VM diagnosed on the 4th of July weekend in Phoenix, because like yourself, I knew there was really something wrong. I spent 6 days on and off in the hospital, 5 weeks off from work which was stupid of me because I went back WAY too soon and it has probably been one of the reasons why it has taken me so long to recover. After 3 lumbar punctures and trying prescriptions of dozens of medicines, I am finally feeling like I have turned the corner for good. I am so glad you found this website as these folks on this blog are awesome and helped me a great deal with getting a better understanding of what I am dealing with. Fatigue was a real problem for me, and like yourself, could not understand why I felt so sluggish even after sleeping for many extra hours than my norm. You will feel better in time and things WILL get better for you. As Jonad724 and the other fine folks will tell you, you must give your body time to rest and recover, especially sine it sounds like you had a very bad case of VM. You will also find that many doctors really have no idea of how to help with the after-care symptoms. Many doctors thought I was just stressed over the illness and did not really have a lot of the issues I tried to explain to them.

    The best thing is that YOU did not give up when the doctors and family members thought you were not that serious. Always listen to your body because only you know how you are feeling. It takes time but you will feel better, Take Care

  • The doctors and nurses at the city hospital are angels, everyone around where I live RAVES about that hospital, it's nationally rated too, I don't know if anybody here has heard of Strong Hospital in Rochester NY but it's amazing. I'm sorry that you also had VM. Sounds like you and I both rushed our recovery and went back to work entirely too soon! It gives me hope to see that you feel you've finally turned a good corner, I am very happy for you! :) This site is so amazing, I've only been on here about 24 hours yet I've had so many kind words and helpful advice be given, I am so very glad I found this site! . I've always been a sleeper, but lately everything exhausts me, even eating! After dinner or any meals I've become so sleepy I NEED a nap, I just get so sleepy I can't function. I have depressed so my dad keeps chucking it up to that or that I'm lazy, but I know better. I don't WANT to be sleepy or sleep a lot, my body just won't work like it used to. Thank you so much for your reassurance saying things will get better and I will feel better, at times it feels so endless and like a cycle, I needed that reassurance that it WILL end. I will see if on my upcoming winter break from college I can take some days off from work and just rest. Unfortunately my parents will not let me not work, as long as I am in their house I must be working, so between work and school I have no time to just heal. Hopefully since I have the month of December off from school I can rest and sleep my heart away, although I'm sure I'll get hell for it from my family, BUT like you all have said I need to focus on myself and getting better and ignore the nay-sayers, I need to remember that. I'm hoping to get into my doctors this week, and that she will understand! If not, I'll look for a new doctor, I know my body is right and the feelings and symptoms I'm having are valid, not in my head. I am glad I trusted myself as well, I never typically do so I'm kind of proud of myself for having faith in myself and arguing until I got treatment! Thank you so so much for your response, your kind words have made a huge difference and have shed light on my situation and given me hope, thank you again :) I am glad things are looking up for you, you deserve it!

  • I am glad this site is helping you. Remind your parents how serious this illness is about the fact that they will require you to work if you are living there at the house. Going to college and doing homework is a lot in itself, then having to work. I forgot to put in my post that I was diagnosed in July of 2013 and had a real bad case of it. The younger you are the better recovery you have I was told. Make sure you follow up with a neurologist as well. Take Care.

  • Thank you, I am calling my doctor first thing Monday morning for a referral to a neurologist :)

  • I have had many hospitalizations, and it is because I pushed to hard. Being tired, sleepy is part of the recovery, take care of yourself. I had 17 hospitalizations since 1994, and always pushed back to work within days of getting home from the hospital. Believe me, it won't work. You will just relapse. Take care of you, and realize most doctors don't understand this illness.

  • Thank you so much for your kind words, I must start focusing on myself more.

  • Hi Shannon,

    I was diagnosed with VM on the 4th June and I am still not back at work as I am still suffering from the after effects. I would say I am 70% back to "normal" so I would say it is early days for you.

    The best advice I was given was to rest and allow my body time to recover.

    I would suggest you seek further medical advice and talk to the people at Meningitis Now, get as much advice and support as you can!

    Look after you!!

    Sharon

  • Hey Sharon, I am glad you are getting better and starting to feel more normal. I'm sorry you're not back to work and are dealing with the side effects, at least you're not alone! I have to find time to rest. My parents won't let me stop working, they refuse to give me money. So if I don't work I have $0 and no way to get to my college classes. And my boss will not give me time off. It seems I will never be able to catch a break :( if I'm not at work I'm at college, it's a cycle that's draining me. I will call my doctor on Monday to set up an appointment to talk about what's been going on and to see if they could refer me to a neurologist! Is meningitis now a organization? I'm still getting used to this site and the communities and how it works lol. Thank you so much for your advice and kind words, I hope you start feeling much better soon! :)

  • Hi Shannon,

    Yes, Meningitis Now is an organization. If you follow me you will find them in my communities. They sent me lots of information and where very helpful.

    All the best with it!!

    Sharon

  • Your very lucky. You need to take as much time as you can to relax you body. Secpnd ypu a neurologist. Get an mri done of your brain and make sure there's no swelling also if your headaches continue you may need another spinal tap.

  • Thank you; I'm working on finding a good neurologist, my primary doctor has been 0 help at all and claims the symptoms are in my head.

  • HI sboehm

    It can take a while so be good to yourself and take care. Get rest and eat well, don't over do, and I suggest you avoid direct sunlight for a few weeks. Good luck and keep us posted.

  • Thank you! :) I'm doing better, fewer headaches which is awesome. I'm still looking into finding a neurologist. My primary doctor was on vacation so I saw another doctor in the practice I go to and she basically said I never had meningitis because she only believes there are two types of viral meningitis. When I stayed 4 days in the hospital and have paperwork and the hospital both stating I had meningitis. This doctor said I needed to meditate and pray more, what a joke! It really hurt that she belittled all I went through and tried to act like she knew everything when she wasn't the one treating me while I was going through it all.

  • I am so sorry this was your experience! Sadly many of us on this site have had like responses. I am not sure what it will take to change this type of experience. I believe you, and you will find most if not all on this site do understand what you are dealing with. Rest, avoiding stress, especially the type of stress you just had to deal with, can help. I truly wish I knew how to reach out and help you! For me I have resorted to taking literature with me to the doctors, and I have even tried to share this site with the doctors, so they can see that for something that doesn't exist, a lot of us seem to be dealing with this nonexistent thing that resulted after being diagnosised with meningitis.

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