Meningitis Now
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VM PERSONAL RECOVERY MARKERS

Hi all, I had Viral Meningitis in June this year for the 2nd time.

I have responded to a few posts on here when & where I though I could be of some help. I am struck by how many of us are struggling with the long period of time it can take to recover from this illness, doubting ourselves and probably the worst is trying to get back to work too soon. On this journey, I have encountered a couple of negative experiences in the medical field which really didn't help and took an awful lot of my energy to challenge them. However, I have had a lot of support and understanding from most for which I am incredibly grateful. Meningitis Now helpline has picked me up & helped me back on my feet a few times! I thought it would be nice to share some positive markers to give encouragement to each other. Mine is driving. It was about 4 weeks before I could drive for five minutes, 5 months later & I can drive 20 minutes. No it's not my normal ability to drive up & down the country but it is certainly progress. Also I am on a phased return to work & last week I managed a total of 9 hours. That was more than double what I could do a month ago. This post is intended as encouragement not a competition, would be nice to hear of others' progress markers.

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Abracad. Good to see you are making progress. I had VM in June 2015, it is still taking it's toll with daily headaches, but I still have to be sure to plan and pace so I am not wiped out for a few days.

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Hi,

This is an interesting post for me. I had viral meningitis mid October 2013. I was in hospital for over a week and unfit to leave the house for a month. All the usual symptoms. sickness/dizziness, memory issues, anxiety weight loss, headaches, light sensitivity. After one month of this, I then had Sever dizziness for a month and my doctor stopped me from driving for one month. A marker for me was around 2 months in my boss visited me at home and assured me I would not be permitted back to work until I was fit, and to take my time to rest. This allowed me to really concentrate my recovery. I had to learn to build up my strength. short 5 minute walks would result in me sleeping for hours afterwards.

I eventually agreed a phased return to work through the work Doctor. he advised a late start and early finish to avoid driving in the dark due to the lights still bothering me. this was another key marker. I originally started doing half days on Tuesdays and Thursdays and then switched to mon/weds/fr. I think this slow return really helped me.

I still notice now, three years on certain elements still bother me. Things that helped me were buying drive wear lenses for my glasses that get darker with light changes and deflect glare. taking naps. as many as I need. avoiding stressful situations. avoiding places with lots of stimuli, I still cant stomach loud busy restaurants or pubs, especially with lots of background noise. My personality has definitely changed and I almost feel bipolar as these things as much worse when I am tired and stressed. Some days I am fine.

Another thing that really helped me was meningitis now and the cranial osteopathy that they put me through. this was unbelievably helpful. the relief from the constant headaches was immediate and I would recommend anyone who has suffered from these to give it a try.

Learning to live with constant headaches and avoiding situations has been more helpful than trying to get rid of these completely.

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It is pretty tough because I feel that if you knew me before, you would easily see how different I am now. I had my first cranial osteopathy this week and she explained what was going on in my head and how she could help relieve the build up of pressure. I already feel more positive just knowing she is on my side.

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Great info. Will definitely give it a try. Everybody on forum seemingly has a lot of aftermath from this disease. Can anybody report on total recovery? Is this possible? Did anybody manage to get back to 100% or know of someone who has? To those who were hospitalized, what treatment did you receive. Doc told me nothing he could do for spouse in hospital, deal with it at home. Thanks Jergen

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I first had viral meningitis in 2011 and definately got back to 100% recovery. I think it probably took about 12 months before I was back to that stage. But it was about 4 months before i felt back in control of my body & able to build up physical or mental strength. I was a bit unlucky to get it again. There is no hospital treatment unless there are complications. Treating the symptoms as you go along will make things easier for your other half but sadly only rest & patience allow the body to recover. This time the hospital gave me strong painkillers which got me through the first month & I now take paracetamol which just takes the edge off the headaches. I have been having massages as my muscles are weak and painfully knot up every couple of weeks. You may also find that counselling will help futher down the line. These treatments themselves are exhausting & not a quick fix. You guys should contact Meningitis Now for advice and support. I think you would find it a big help.

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Acupuncture was also very good and I have had 2 daith ear piercings which also helped to ease the head pain

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Thank you Abracad. Very good news to hear you made a full recovery and that it is possible. Twice, yes, very unlucky. We are still trying to figure out how she contracted VM. So, second time around just as trying as the first. All the best, Jergen

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Did the hospital do a lumbar punture? That would identify any viruses present.

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Yes, lp was performed, and fluid revealed VM, although doctor didn't specify exact causative agent. I would like to know if the exact virus could be treated, as I hear there are a couple that can be with acyclovir. So many unanswered questions. Thanks. Any suggestions are appreciated. Every day get educated on this topic. All the best Jergen

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If you contact you spouses GP they will be able to tell you what virus' were present. When I was feeling a little bit better, I wrote a list of questions and took it with me to see GP. Acyclovir is an anti-viral that wont help the recovery but GP may consider as a preventative mesure for the future depending on the original cause of VM.

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Hello Jergen

I was hospitalized with meningoencephalitis and had LP which identified the virus. When I was first admitted they told my husband I was receiving antibiotics in case it was bacterial and cyclovar in case it was herpes virus. That is the only virus that responds to antivirals.. Since the LP revealed I had West Nile virus I then received only supportive care (which was life saving) in hospital for 6 days. IV fluid, pain and anti-anxiety meds, and assorted other things. There is no treatment. The recovery is long and I would continue to ask questions and learn in order to help your spouse get thru it.

Regards

CG

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Even though my GP surgery are pretty good, I have needed to be pro-active and ask the questions. I hope I am being helpful.

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Yes, thanks Abracad,l had n't thought of writing for specific virus involved, but will do so. Read somewhere that two specific viruses that might cause VM can be treated with Acyclovir. Mentioned this to our infectious disease specialist, and he didn't put much stock in it I really don't know if all these guys are on the same page.

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Meningitis now can provide you with information & fact sheets for medical professionals which will support your case.

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Meningitis Now have been a brilliant support & i have used your factsheets both with work and with doctors. Being able to pass them onto my employer saved me a lot of explaining & justification. I had a problem with occ health until I pushed home my knowledge & they referred me to somebody better qualified.

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Like you abracad, I've also encountered negative stuff from the medical field. My G.P looked at me as though I was stupid when I asked if my HSV meningitis could return! Thank goodness for a really good neurologist who has helped explain a lot and allay many of my fears.

I suffered with VM in Jan this year, followed by a possible reoccurring bout again in September of this year (I was unable to have a diagnosis as GP said this couldn't be possible, and by the time I saw the consultant, it was too late to perform a lumbar puncture)

A milestone for me was finally loosing the pins and needles and numbness down the left side of my body! It was very strange, and came on a couple of months after the initial illness. It was made much worse by walking, or even just wobbling my head!! All tests came back fine, but I haven't heard of anyone else experiencing this. I'm pleased to say, I can now exercise moderately without any problems at all!!

The phased return to work was good for me too. I was also lucky to have an understanding employer!!

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Hi Clara Bell, Jergen here. Have been communicating with others at this site, picking their brains trying to get educated and gather first hand info re: VM. Spouse came down with it three weeks ago. At this point she had been fever free for three days, and then today it returned after an afternoon at the doctors and a Thai lunch. Headache has dissipated and not an issue now, however extreme fatigue and dizziness still plagues her. Light sensitivity, noises etc are also quite bothersome. At what point in your illness did you feel you were definitely getting better? Have you fully recovered? Thanks in advance and to all others who have taken the time to respond to my inquiries. Jergen

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I'm 14 years on from near fatal VM, six months off work and unable to walk and talk properly after the attack. I have been left with a variety of after effects but as I was a triathlete before the illness (and in fact it was my fitness that saved me, I'm told) I had 5 years away from the sport but have since completed 3 half ironman triathlons (1.2 mile swim, 56 mile bike ride and a half marathon of 13.1 miles) and several shorter ones, all in aid of Meningitis Now of course. It just takes time to recover, it can't be rushed and I had five years away from triathlon to let the acquired brain injury settle down. I was diagnosed with Mollarets in 2010 and still suffer a continuous headache and food intolerances but I hope that I'm living proof that VM need not be a life long limiter.

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Wow how inspiring. How bad are your continuous headaches and what do you do to get through them with such positivity?

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They vary really from mild to severe when I'm having a Mollaret's attack and I'm not always so positive (my blog post on here 'oh no it's angry dad' might be a clue but in all honesty you get used to it. They don't bother me most of the time and so long as I don't get too stressed the Mollaret's isn't an issue. I also have to avoid caffeine, cocoa and alcohol but again it's what you get used to. People ask me why I do long distance triathlons, well if you couldn't drink, have caffeine and chocolate you'd do long distance triathlons too, got to do something to take my mind of it!

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My husband is 3 yrs post VM. He spent a week on his death bed not even joking as you may well know it was so severe they put him induced coma so the pain would not bother him. After the week long stay he was released and was able to walk out of hospital. Three days later his legs gave out on him. He has not recovered fully from this and suffers terrible pain/burning in feet. I try to get him to exercise but he has lost so much muscle and strength that he just aches all of the time. I want him to get stronger but feel he is giving up. We have 5 kids and 3 grand daughters that need him. I commend you for not throwing in the towel it’s tough for sure. He is being treated for neuropathy but not 100% sure that is exactly what this is. It seems his neurologist is treating symptoms and not underlying issue.

Any suggestions for motivation?

Keep up the positive vibes,

Becca044

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It is definately worth visiting yoir GP to discuss the possibility of Fybromyalgia. I have recently had confirmed diagnosis of this by a rheumatologist. Sadly, I will never be my old self, full of beans & give anything a go. I too am nowhere near as strong physically as I used to be, which is incredibly frustrating at times. And I have had sever drepession. However, I can now get the appropriate assistance & understanding to help me cope. I have learned to plan my energy usage & take time off work when I need a break. Mentally, I am happy to say, I am really well again.

This is pretty rotten for you both to deal with, well worth having GP check for other causes of your husband's issues. The Meningitis has such an effect (totally unrecognised in the medical books), it can trigger all sorts of other issues. Good luck.

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Sounds terrible Becca and it must be a daily worry for you. I think maybe with exercise it's a case little and often. It doesn't have to been getting out of a chair or bed even but can be something as simple as getting a can of beans in each hand and doing some slow arm raises. Similarly sitting in a chair just doing some slow and low foot raises is enough to start things off. After I had VM i had to learn to walk again especially after 6 weeks in bed and it is a motivational thing. I had been an active triathlete before the illness and had to have five years away from sport to let the brain injury settle down. I found after the illness I was really quite depressed and this may be something your husband is experiencing. I now know I was grieving for the life i had previously had and I felt robbed of so many things. Depression is a circular illness which means you don't want to do anything but the less you do the worse you feel. There is light at the end of the tunnel if you can just get your husband to start on some light exercise like above. I went from not being able to walk to completing three half ironman triathlons (1.2 mile swim, 56 mile bike and 13.1 mile run) plus other shorter races. It was damn hard word but near fatal VM is not a life sentence, I would though maybe suggest your husband gets checked out for depression as it doesn't always manifest itself as extreme sadness, there are a number of different forms and mine was grieving for the life I had and really wasn't sadness but was more anger. As i have mentioned elsewhere I am a community ambassador for Meningitis Now so if you feel I can help please message me and I'll share my email address with you.

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At 2.5 years after VM. I am now at work part time , swimming up to 45 minutes, running 3.6 miles, attending a dance class and went back to a step class this week. I drove for 1 hour/ 75 miles and I am reading for as long as I want now. Oh and I have walked 9 miles in the Peak District.

I had severe VM causing a dislocated neck and spine so these markers are great achievements. I still have to go carefully and pace myself. I could hardly do anything for 2 years! I have really improved since taking propanalol and having Botox for the chronic migraines and neck pain. I strongly recommend a diet rich in vegetables and super foods.

The key was resting and allowing a long time to recover .. Patience was / is key !

Good luck and take care xx

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Well done you. I have so many things that I want to get back to. I felt that people on here needed to hear some positive encouragement and your story has lots. Thanks for sharing.

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Thought I should put an update on. I am now 14 months down the line. I have been left fybromyalgia/ME different GP says different things. Either way, major physical & mental fatigue are my legacy. I continue with osteo and massage, can just about work full time but no extra duties. On the positive side, I am a million times better than this time last year. Have even had a holiday with my sister who was chief bag carrier & shopper. So, try to stay positive people.

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