4 weeks ago my husband was diagnosed with viral meningitis. He is a very active guy and has always taken such good care of himself, he is an avid runner and just started competing in triathlons. We have a 19 month old beautiful baby girl and he is afraid of how much time he is going to miss out on due to the pain he is constantly in.
His symptoms started with numbness and tingling that started in his foot and traveled up his body and ended with a headache...4 days later the numbness was back and in 10 minutes he couldn't speak, by the time we got to the ER the headache was so extreme and he couldn't touch his chin to his neck. After a spinal tap is was confirmed...meningitis. 2 days later we knew it wasn't bacterial and we were released. 4 days after that was a rush to the ER after a very scary seizure. Another spinal tap...viral meningitis! He ended up in ICU and has no memory of the seizure or the entire day for that matter. All MRI, EEG, EKG, CT scans, blood, etc..tests are coming back normal...I told the doctor if one more person tells me he is normal I'm going to punch them in the face This is anything BUT normal!
He is still suffering from debilitating headaches, neck stiffness, and muscle/joint pain. The headaches are constant, but at times he gets that numbness and tingling that travels from his foot to his face which is always followed by extreme headaches that causes him to vomit from the pain. We have seen a Neurologist who is treating him with anti-seizure meds and migraine medicine, but we will see another one on Monday for a second opinion.
He does have good days, but they are always followed by horrible headaches, and terrible pain. I search the internet day and night for information, success stories, treatments, ideas...anything. This can't be our life forever can it? I'd also like to ask how do you know the difference between the virus and the "after-effects"? How do you know when this thing has left his body? This has been the most confusing, frustrating thing I've ever dealt with and I can't believe there isn't more medical information on this horrible illness.
I've read some of your stories and any encouraging words, ideas, info, anything would be greatly appreciated. We've already decided once he gets better we're going to run, race, anything to raise awareness and hopefully help people who suffer from this! Thanks for your time!
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dhattenbach
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Life Extension has a good article on Nutrition's Role in Meningitis. Also consider bromelain (an anti-inflammatory) and elderberry (a possible anti-viral agent). Wishing you the best.
Speaking as a 12 year post near fatal VM survivor and coincidentally a triathlete before I was struck with the illness I do understand what your husband is going through. I won't bore you with the details of my experiences, I write a blog on here occasionally so please feel free to have a look, but they were scarily similar.
The key is rest, on the good days he mustn't do too much because he feels good because this will just knock him back again. The symptoms are telling him something and that is he has undergone a brain injury which needs to heal. Doctors will tell you that after 4 weeks he's back to normal because that's what they're told in medical school. They are told that VM is a mild illness akin to flu and has no lasting side effects.
It's an unpredictable illness to predict recovery from I'm afraid because it involves the brain and that will take as long as it needs to come back. It's not like a cold or flu, ironically, when you can say in three weeks it will have left me and I'll be fine, it's very much a case of listen to your body and take it easy.
I had to take 5 years out of triathlon on the advice of my neurologist to let the brain injury settle down so it may not be quick and the recovery may never be total. I have been left with a number of side effects like a constant headache, mild photo-phobia and seasonal affective disorder. I have to have a bright light each day which hurts my eyes so I'm either a grumpy old man or I have eye ache, I can't win.
The good news is though that 10 years after I contracted VM I completed my first half ironman triathlon (1.2 mile swim, 56 mile bike, 13.1 mile run) and just to prove it wasn't a fluke I did it again in 2013. Next year I hope to do it under 3 days
This is the reply I was hoping to get! To know there is a chance he will run, bike and swim again is everything to us! It's just the right now that is so hard to comprehend! He doesn't understand that this is something that won't be gone tomorrow...he wants to get up and go on his good days and as you can imagine the "recovery" days are hell. I'm in shock that the medical community doesn't know more and that the treatment isn't more advanced...this is 2014 right? At this point we can live with side effects it's the pressure in his head and the stiff neck that makes it hard for him to handle. He's a tough guy and he said this morning I don't know how much more of this I can handle. I worry about him every second of everyday but I will read this to him and hopefully it will lift his spirits. Thanks for sharing your story especially after so long and I will definitely be checking your blog.
If it would help to IM me if you just need to talk or you have any questions then please do and I'll send you my email address. My wife went through exactly what you did so we do know what you're going through. One of the side effects of VM is depression (if you go to meningitisnow.org.uk they have a fact sheet on VM which is really good. I took this to my doctor to explain to him what I was suffering from and why it wasn't like other forms of meningitis). For a triathlete being told to rest is like being told not to breathe but rest over time is they key to recovery. Do too much too soon and it will I can ensure you bite back. I am about to write another blog post called 'Men are from Mars, Women are always right. My wife kept nagging me last year that I was doing too much until I came down with four concurrent infections at Christmas and was seriously ill. The doctor lectured me on how lucky I was not to have had another attack of VM, scary stuff. I had to take most of this year off, hence not doing a half ironman this year, because I was just tired the whole time culminating in being diagnosed with complete exhaustion in August. I'm now back in training and not working so hard, even us 'old pro's' get it wrong!
I'm sure your husband will get back to being a triathlete but it will take time, difficult to say how much, I had to take 5 years our of impact sport (I could swim but cycling and running were out as they could cause my brain to move by running or falling off my bike and cause more damage).
I wish you well and please feel free to contact me any time and as many times as you like, knowledge is power as the saying goes :-). Jonathan
I am 7 months post VM and still almost as I was at the start so it is a very long slow recovery. I try to keep positive and I am trying to do nothing exherting which is hard because I am very sporty too. I take lots of vitamins and minerals and drink kale juice to help fight the virus and boost my immunity. No easy answers I am afraid. I now feel generally well in myself, my hair and nails have never looked so good! But I still can't do much due to the constant severe head pain. I don' t call it "headache" as the pain is totally different from a usual headache. My pain feels like the membranes are in spasm and crushing the brain. I find this is important to say this to doctors because if I say headache they think along lines of migraine and then supply incorrect medication. Usual headache medicine does not have any effect. I take 20mg Amitriptyline which helps the most and prevents me having painful relapses. Other than that only complete rest helps.
Reflexology also helped the head pain.
Not a very motivational reply, sorry, but I hope it helps.
I hate to hear that you are still suffering as my husband is with the head pain...and you are so right we should stop using the word headache...it is not that at all. We generally eat good foods but I've ramped that up and have been researching vitamins and supplements to take. If you could share what you use I would appreciate it. I will also mention the meds you said you take and hopefully it will help him. What a terrible thing to go through and what in the hell is the medical community doing...it's 2014 for heavens sake. I'm in disbelief that there isn't more treatment out there. Keep fighting and that positive attitude will take you a long way. I will continue to post any info, meds, anything we find that works. Thanks again
All the above posts sound as if I could have written them. The advice to rest is exactly right if not I have relapses and days of head pain and fatigue. The vitamins and minerals I take are Tesco menopause vitamins...so I don't think your husband will be brave enough! I make green drinks by blitzing up kale, spinach, cucumber, carrot, lemon juice and ginger.
I think the worse part, at the moment, is that I feel like the village recluse. I am usually a busy teacher, doing lots of sport and dog training. Currently following a recent relapse (due to coming off Amitriptyline) I am having to completely rest again, no exercise, no reading, music, limited TV. This is quite depressing and I am so grateful for this site because friends etc don't seem to understand why I am not yet recovered and out and about.
I think it is better to try to accept that this illness can take at least 12 to 18 months to recover so not to push it too soon or relapse is likely to occur. The brain needs to rest.
I wish I could help you. My meningitis was bacterial and I was 13 weeks in intensive care. I dont remember what happened to me all that time and im now left with profound deafness ( I have 2 cochlear implants) but noises are loud and speech and language is not good. I have tinnitus and am permanently off balance. I have to use a wheelchair an crutches and going out by myself is something from the past. I have lots of pain in my body and had to have a heart operation because of fluid surrounding it. My temperature goes up and down like a yoyo. When I ask professionals why have I got these symptoms and all I get is everyones different. It looks like I have to accept what ive got for ever now and I get depressed. Ive been told my illness could come back so im on lifelong antibiotics now. Im 68 now and that was 2 years ago. I worked part time and looked after my baby grandson three days a week. All I do now is stay at home and rely on family and friends to visit and take me out. Sorry ive not been much use to you. Im not much use to anyone these days.
I am so very sorry for your pain. I hope you are able to dig deep and find some meaning in all of this for you. Coming from a family member who is watching a loved one suffer it would break my heart if I knew they felt the way you do (although im sure all people suffering from this do at some point). Please talk to someone and make the absolute best life you can with what you have. You are here for a reason and a purpose you just may have to fight a little harder to find it. I can assure you that little grand baby is happy you are here and I'm sure he needs you for a lot of things! My heart, prayers And thoughts are with you.
Dear hattenbach, I was so very sorry to read your post. What a horrid time your husband has had and you too.
I had a severe case of viral Meningoencephalitis three years ago and I am still suffering with many after-effects. I wasn't even referred to a neurologist until eighteen months after I'd been discharged from the hospital!
Now, first things first - have you been in touch with Meningitis Now? Ask them if they can come out and see you and your husband. Explain your situation; they are very understanding and are able to offer advise and all kinds of valuable help.
Your husband has been through a very serious illness and it is going to take time for his brain to heal - remember, the meneges surrounding his brain has been attacked and it will have sustained damage make no mistake.
He will have good days but he mustn't overdo these or he'll have to 'pay them back' (as I discovered) and then he'll need to spend several days resting up to regain his strength again.
Your husband needs to learn to pace himself. Perhaps doing small tasks for half a day is enough for him, at the moment and then build up from there. See how it goes. Everyone is different but one thing that isn't different is that this recovery takes time.
As you've probably read on here already, there are many of us who are still feeling the after-effects a long while after having had the illness so, your husband certainly won't be alone.
Many of us seem to have been left with severe Migrainous attacks since having Meningitis. My neurologist has put me on Topiramate, which has helped me.
Anyway, I won't write more as I don't want to over-load you. I think you're doing an amazing job supporting your husband and looking after a little baby as well. I hope you're finding some time to nurture yourself though, that's very important.
This is a good site and everyone will be offering something to you. Take care and keep well.
Thank you for your reply and suggestions. I will follow up and explore everything you suggested. He does tend to think he can "will" this away and he has set himself up for failure by pushing it to fast. He just wants to feel like himself again and unfortunately the doctors don't seem to know or explain the severity of this to him. It has been a trial by error for many of us and the payback for the error is horrible! I am going to read him your response and hopefullt he will feel better knowing he isn't the only one. It's hard to wrap my head around the fact that there isn't more the medical community can do. thank you again...
Hello, I am 61 years old and 2 years post viral meningitis. As stated above, give it time. I found that if I was too active mentally or physically my body would let me know and it would be 2 steps backward. The long recovery can be very frustrating and depressing. My doctor perscribed nortriptoline 20 mg taken at bedtime, and I think that really helped with the headache. I can say that after one year I was feeling fairly normal and even more so now.
I understand your concern that he is missing out on your lives. Yes, he is. It's a unavoidable fact. However, his best chance at full recovery is REST. Very difficult, he needs time to heal. My husband was understanding and supportive, and I am certain that's part of the reason for my recovery.
You have a young family so you have those challenges but you can do it. It will be worth it in the end. My best to you all. Take care.
Thank you for the encouragement! I will discuss the medictation you mentioned with our doctor. It is nice to hear that there is a light at the end of this very dark tunnel and I am so very glad to hear you are on the mend.
It sounds exactly like what he is going through 1 step forward 2 steps back. It just seems cruel. I worry about him every single minute of every single day and I just hope for some relief for him. Thanks again!
It sounds exactly like what he is going through 1 step forward 2 steps back. It just seems cruel. I worry about him every single minute of every single day and I just hope for some relief for him. Thanks again!
Hi , I have had VM three times now over the past three years , hospitalised for 12 days each time. and have since contacted numerous virus . . I suffer with chronic fatigue now and most of the side effects others have mentioned. There is light at the end of the tunnel but it takes lots and lots of rest . He will have good days and bad days as ŵill you . I know this illness has taken it's toll on my children but we cope. I am back at work on a phased return . It is very frustrating but as he is a sports man I am sure he will recover his strength.The worst thing is the lack of understanding from other people. You have to remember you are not alone . I wish your husband a speedy recovery . Good luck and take care. Xx
I was diagnosed and hospitalized with VM in early March of this year. It completely took me by surprise. Although I had been under stress prior to that, I was a pretty active and healthy person. After 4 days in the hospital on IV anti-viral meds (acyclovir?) I was sent home with the impression that I would be back to normal in a few weeks. I too was shocked by the lack of information and support about the illness. In fact, it has only been on this website that I have found information that has been helpful and heard stories from folks with experiences similar to my own. No one prepared me for the continued headaches, dizziness, tinnitus and fatigue that I continued to experience after I left the hospital. I must say, hearing how LONG it can take for one to recover from VM is a double-edged sword. While it is comforting to know that others have suffered with the same symptoms for months, even years. It's also a very scary prospect. Clearly this illness and it's recovery is not well-understood.
After feeling as though I'd exhausted opportunities for help from the medical community I started to explore other healing modalities. I think there is much to be said for acupuncture, energy medicine, Reiki, massage and other non-traditional forms of healing. I have seen a practitioner who has helped me immensely after hearing an interview with Donna Eden (innersource.net/em/about/en.... It may not be for everyone, but I truly felt I had nothing to lose and certainly the western medical community had nothing more to offer. I have to say, after 6 months I am doing so much better. I am almost back to my previous activities. I couldn't do yoga for months without getting sore and aggravating my headaches and dizziness. I am finally able to slowly begin my practice again (although I am avoiding inversions still). But I am swimming and walking and feeling so much more energetic in general.
I also recommend the following book, written by an M.D. about how we can play a bigger role in our own healing process and how much our minds and our attitudes can contribute. It's called "Mind over Medicine: Scientific Proof that You Can Heal Yourself" by Lissa Rankin. It makes a lot of sense to me and has offered a new perspective on my health.
I can almost say, that as devastating as this illness has been for me (and I'm STILL dealing with my medical bills that were astronomical!) - there has been a gift in it as well. It has made me realize how precious my health is, and how we take good health for granted. It also forced me to take stock of my life and restructure my priorities. It has also been incredibly humbling. I am so sympathetic to those here trying to make sense of what has happened and how to move forward with your lives. It's not an easy path.
Best wishes and thanks to all for sharing...it's great to have this online community.
I have read from many people that acupuncture has been their saving grace and I am seeking one out in my area as we speak! We are willing to try anything and everything as this has turned our lives upside down and inside out. Thank you for the material and I will be looking into those and I'll let you know how it goes for us. I'm so glad to hear you are on the mend and I hope we will be too very soon! Thanks again
Hello - I was diagnosed on 7-6-2013 as having Viral Meningitis and have been recovering ever since. I have had 3 spinal taps due to my neurologist wanting to know if my relapses were bacterial or viral. I am also on Amitriptyline at night which seems to help with headaches. The one recurring piece of advice from all of the fine folks taking the time to comment on this blog is to listen to your body, rest as much as possible and don't push it too soon. I wish I would have known about this site earlier as I went back to work way too soon and is probably one of the reasons why I still have a lot of symptom issues. Tell your husband to hang in there as this will be a test of patience and wills getting over this. I have also figured out that doctors here, ( I am in Arizona), really do not know how to treat the after effects of this VM attack. I had more folks tell me that I should not be feeling this way because the VM is not present in your system anymore, but we all know that these conditions can last a long time. I am much better that the 1st 6 months after initial diagnosis, so there will be light at the end of the tunnel for your husband. Tell him we are all pulling for him to feel better. jonad724 has a lot of good information he could help you folks with since he has dealt with this for a long time. Take Care
Wow thanks so much for the encouragment. This site has been the only thing that has brought me any kind of comfort. I will ask about the drug you mentioned because he doesn't get very much sleep which can't be good for him. We had a really bad day yesterday and ended up at ER for some sort of pain management and then today he's been having a decent day..which only makes us dread tomorrow. Ugh..so frustrating. Thanks again for your input and I hope your health continues to improve!
I'm really sorry to hear about your husband - it's such a terrible thing which comes out of nowhere. I'm 26 year old male, very sporty and loved running regular, and I came down with VM at the end of July.
As you say, you do expect to be healthy again quickly but it rarely seems to happen that way. It took me 6 weeks of going out of my mind at home, trying to measure any progress, for me to just accept that it would take time and that I wouldn't be back at work for a while.
It's been 12 weeks for me and I'm still getting headaches, and for me the fatigue and tiredness and muscle ache is the worst as it just takes all of my energy away.
I went to see a Nutritionist recently, to help me feel like I was doing something to help, and am now doing a fresh food only Paleo diet with extra green smoothies and supplements, such as Vital Greens (a multi mineral/vitamin), Vitamin D, Vitamin C. etc. It is very likely his immune system is low still (my white blood cell count was and still is very low) so it may help to ask for blood tests every month or so to check these, as diet/nutrition/supplements will help rebuild his immune system and hopefully stop it having to work so hard during recovery and help him not to pick up colds etc.
He will have good days and bad - and as everyone says you just need to urge him not to do too much on the good days. I went to Romania on a charity trip 3 weeks after my VM as I was pushing myself, and I had a huge setback, and again after spending a day gardening last month - was pretty much in bed for a week after that!
Highs and lows are normal too - I am usually very positive and optimistic but I've had days when I've felt very down as I get fed up with my body letting me down - but you have to work with it not against it!
Assure him that he will get better - it is just a slow process. Keep us updated on how he's doing.
Thank you for replying; I think seeing a nutritionist is a great idea. As well as supplements. I've got him taking fish oil and vitamin C buy I'm sure there's more he could be taking. As of now his bad days out number his good so we are anticipating that to turn around. He had a really bad day yesterday and we ended up back at the ER for some sort of pain management. I agree that his immune system must be struggling because there are good days...we see a neurologist tomorrow and we are going to try acupuncture this week along with massage. Something has got to give. Thanks again!
So sorry to hear of your problems with meningitis. I was sent home from hospitlal even though I had meningitis with septecemia. Then was returned by my husband where I spent 13 weeks in Intensive care.
I have lots of problems and im so annoyed because had they kept me in the first place and done more tests im sure I wouldnt be as bad as I am now. I do hope you succeed with your wishes. All the best.
That is awful..how could they have been so careless?! I hope your pain eases and you are able to find some comfort. Thank you for taking your time to reply and if we find anything that helps us we will share!
HI, i sympathise with you and your husband. I was diagnosed with VM in 2011 and admitted to hospital where i underwent many tests similar to your husband. Some 3 and a half years on I still suffer from incredible headaches.
I have undergone various treatment including Cranial Osteopathy which had limited success. More recently I have undergone a course of Reflexology which helped immensely and i would recommend this to anyone suffering from the effects of VM.
I have seen 4 neurologists, 3 of whom diagnosed me with different conditions and two of them didnt believe it when I said I had suffered VM despite hospital admission etc etc. The latest Neurologist has diagnosed me with Chronic Migraine Syndrome, this as a result of two headaches I had approx 15 years ago. This has given me some answers but has not helped with the headaches, it has given me a partial answer as to why i am suffering from headaches.
Meningitis Now have been a great help to me and my family and have support workers that can come to your home to offer support for your husband and you. My wife found this beneficial as she was offered support as my condition really affected her and our two young children, maybe you could ring them? I would highly recommend it.
I can not imagine still suffering after so long. I hope you find some comfort from your pain. We are going to try acupuncture this week and we'll go ahead and throw in some reflexology while we're at it. reading all of these stories certainly brings some comfort but it also brings anger and confusion as to how this is still such a mystery. Keep fighting!
VM and BM are different animals but to give you another happier ending story, I am 22 months removed from a Bacterial Meningitis episode bacteria unknown and am supposed to still take blood pressure medicine to keep my headaches down. The neurologists wants me to ween off the BP meds and is surprised I still need them. I have stopped taking them and now a headache goes away with two tylenol.
The point of my post is to ask your neurologist about taking a Blood Pressure medicine. I was taking Verapomil and it really helped to relieve the pressure in my head. My BP was and always has been normal and the dose is low enough to help relieve a bit of pressure allowing the brain to heal. There are some side effects but nothing that won't go away when the medicine is removed and the side effects are very mild.
I was a golfer and have been unable to play since I got sick. It just hurts too much. Hopefully, though, next year with the headaches gone, I can resume playing.
Good luck to you and the advice about rest is serious. When you feel good take it easy and enjoy feeling good and don't take it as a license to overdo it.
Thank you for the suggestion...it's good to hear the happy endings! I think the blood pressure medicine makes sense and I will suggest it to our neurologist today! So happy to hear you are doing better and I hope you're out on the Green sooner than later!
I take blood pressure tablets but I dont think they help with headaches. I take tramadol, paracetamol and have pain patches for the problems of pain in my body but still suffer. Some days are worse than others. If I find a cure for pain and headaches will let you know x
hi I am over the two year mark post vm and things have gone really well, and other times been quite serious. So its a very windy road. I have had months of surfing and cycling and gym etc then months of migraine and mincing around for weeks and weeks with ice pack on head. So...the upshot of it is, yes you can get better and yes, you may be a bit more fragile. So if you are used to running around like a cut snake, you will find it harder to heal if you over do it. I am of the running around like cut snake variety and I pay for my excesses. So, its pretty time consuming, but statistically, if you read all the posts here and all the medical research, 90 % of people improve, and most of them a lot. Assume you will be in the 90%, but it may take a long time. I have chronic migraines off and on from the whole disaster, but I can control them if I manage my life really well, meditate, relax, dont lift heavy things etc. You will find a way through it, its often horrible trial and error and endless patience, but it will happen. Best of luck to you all.
You might check the Life Extension website (lef.org) and search meningitis to see their recommendations, which were helpful to me. Bromelain was particularly effective. Also, consider reading the book "The Brain's Way of Healing," which I have just begun reading. I am hoping brain retraining techniques described will be of help to me. Wishing you all the best!
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