Random Relapses?

Hi all,

I'm ~4 months post VM and have been struggling with head pressure, anxiety/depression, foggy feeling, and muscle aches/weakness as after effects.  Not constant, very much the up and down of good days and bad days.

I've read on this forum and noticed that over doing it causes flare ups of after effects.  But do people also get random flare ups for no apparent reason?  The last 2 weeks I've consciously cut down on activity, cut out alcohol, started meditating more, etc.. I was feeling better a few days ago, and then BAM out of nowhere I felt like crap yesterday and today.  Like worse than I've felt in 2 months or so.

Have others run into this?  Any tips?

-Mike

11 Replies

oldestnewest
  • Hi Mike, I'm 14 years post near fatal VM so hopefully my experiences will help. The simple answer to your question is yes, random flare ups can occur especially in the early stages of recovery. Your brain has taken a battering and because it's a million times more complicated than any computer on the planet today sometimes things go wrong for no apparent reason after an injury. It's good to try cutting out different things and also keep a track of diet etc. to see if there's any triggers but to be honest it is very early for you and VM is an unpredictable illness. When you understand that the medical profession probably knows about 20% of how the human brain works this shows how unpredictable a brain injury can be. That said the most likely cause of flare ups is not resting enough, as you have seen elsewhere, but your brain is recovering from what can be a serious illness and therefore the flare ups may just be part of the recovery process. Unfortunately VM requires the patience of a saint sometimes (it was five years before I could take up triathlons again after my attack) but it's the early stages which are crucial to the speed of recovery. Good luck, Jonathan

  • It's probably not the answer you want but the simple answer is yes. I have had days when the headaches are worse & energy levels drop for no reason. My blood tests showed I was vitamin d & b12 deficient but even with medication for this I still have bad days. I've struggled with those around me understanding, my boss is the hardest one. I may look okay but I don't always feel ok. 

    I think we just have to listen to our bodies & be kind to ourselves. Acceptance is hard but it helps, accept that this will happen but look forward to the good days because you know they will happen too :-) 

  • Thanks Jonathan & AlliG, always reassuring to know I'm not crazy even if the news is hard to take :).

    So now the dumb question - any suggestions for resting?  I've been back to work, but taking it easy when I feel like I pushed it and working from home for a day which usually includes a half day nap.  In hindsight I probably pushed it too early and too hard at work.  It's just really hard for me, I'm an engineer and I love what I do so its hard to shut the brain off completely!  Even when I take time off I'm thinking about work, vacation is different...I can totally shut it off for that, but shutting it down for a long recovery like this is very challenging.

    I'm considering taking 1-2 weeks often to rest and heal....I just don't know what I would do!  I'm so fed up with watching TV, caught up on a lot of shows the first 2 months of recovering.  I feel like reading would be too hard on the brain?  My first thought is to take the time off to shut off stressors (emails, deadlines, etc) but spend 1-2 hours a day catching up on research articles so I'm still doing something mentally - but maybe that would be too much?

    It's just so hard to know how much is too much!

  • Hi Mike, 

    I'm sorry to hear about your flare ups following VM. Your symptoms sound very similar to mine. 

    I contracted VM January of this year and after two months off work I have been gradually returning to work on a phased return since March. I work in management in the NHS. In the middle of the phased return I took a couple of weeks off on annual leave to spend some time with my family in Devon and really started to feel like I was back to my full health. However after a week back at work (still on much reduced hours) as well as doing lots round the house and with my young son, over the last few days I have had symptoms again of the extreme tiredness, foggy head, dizziness and neck ache I hadn't had in several weeks. So much so that I have not been able to go into work again today. I am feeling anxious about how i am going to return to work to my full hours, and how to manage expectations with my boss (already she is trying to get a date from occupational health when I will be back on full hours, also soon I know my pay will drop if I don't return to full hours so that's a worry too). So I understand it is really hard to know how much to push it especially when you have days when you feel normal, and when you just want to be normal too! Accepting the situation I am finding hard as I don't know exactly what I'm capable of. 

    After this episode I really do agree with what other posts are saying about looking after yourself and listening to your body. I knew I was overdoing it last week, as I started to launch myself into a project at work which has certain time pressures and i think that has set me back. So I would say remove as much stress and deadlines like you say and perhaps increase the mediating! I think I need to do the same! 

    All the very best, Tania

  • Hi Tania,

    Sounds like we're on the same timeline - I contracted it in Jan as well. Similar story too - went on a family vacation in late March and was able to run/swim so I thought I had finally gotten trough the hard part.  Also having young ones makes it tough, we have a 2 year old and an 11 month old, so even if I take a day off from work - I don't really get a day off :).

    I've never been a patient person but I think this is just life teaching me how to be patient!  Work is such a good distraction so I think I've been pushing too hard at work to keep busy.

    We should keep in touch on recovery, sounds like we are on a similar timeframe with common struggles.

    -Mike 

  • Hi Mike, I'm new here. I was hospitalized the first week of April for 8 days with VM due to VZV. I'm struggling with postherpetic neuralgia but the neurologist has me taking gabapentin which keeps the nerve pain intermittent and tolerable. 

    But the on/off foggy head, head pressure, stiff neck, blurred vision is what's really getting to me too. It's crazy feeling so good than not. I'm not back to work yet, but I am in school taking a couple online classes that I'm trying to finish and not defer. My kids are a bit older so they're in school all day so that helps.

    I'm glad you posted because it validates how I feel and I needed that. Thank you! Sometimes it's hard not think this is all in my head...pun intended.

    The problem is that these symptoms are nagging not debilitating for the most part so it's hard for us & others around us to understand. 

    Best, 

    Mags

  • Yes. I have days where I feel alms or normal again aside from some anxiety and then days where I ache and feel stiff and sometimes j think it's related to doing something I shouldn't have and others it seems to be out of nowhere for no obvious reason. It's very frustrating and I think it worsens the anxiety/depression which has been a major after affect for me since August. 

  • Hi Mike,  yes, unfortunately,  this is norm for this illness.  3 yrs post VM, & 2 recurrent episodes,  I've learned the hard way 2 be patient & be good to myself.   I was a multitasker,  no longer!   Healthy diet , exercise , lots of rest is key to managing your symptoms.  Reduce stress level as much as possible,  as it is a catalyst for VM!!    Take one day at a time,  you will have good & bad days.    All the best!!! 😀

  • Yes it has taken me 2 years to feel ok and I am still having to pace myself and rest. 4 months is very soon and your brain and body won't have recovered yet. It takes time and a lot of patience and the sooner you allow yourself to accept that, the better your recovery. I didn't realise this at first and continued to make myself worse. It is a horrible illness so be kind to yourself and take care. X

  • Very much the same! I was diagnosed with VM in January of this year. In hindsight, I probably pushed myself too hard, and returned to work in Feb. I found that work can be a welcome distraction, and as a single mum, it was a necessity and also a social outlet! However, it's difficult to know when to rest, or whether Im imagining it and if I should push myself. 

    I have days when I feel like I've cracked it and I cope very well, then out of the blue, I'll have several days with the return of the crushing headache, tiredness and feeling really spaced out... Back to square one! Today was a good example, I drove home from work feeling as though I was over the limit!! Strangely for me, I can go for a long walk or moderately exercise and feel fine (except the pins and needles!) . It's the mental concentration that can knock very quickly knock me out! 

    It's hard for others to understand! 4 months recovery sounds a long time often expected by work and friends that I should be 'back to normal' by now. 

  • It comes and goes for me and I'm in my ninth year of recovery. I've just this year decided that for me it will stay that way. Some good days and some bad. If you have something particularly taxing coming up its a good idea to rest and eat well before and plan to have a rest period after as well. Going without enough sleep or just not resting enough can have disastrous effects for me. For one thing I'm an emotional wreck and getting over tired exacerbates it all for me. Plan ahead, rest up,eat healthy.

You may also like...