Still suffering

[MWDL]

It’s been six months now since I left hospital with VM, I’m still suffering fatigue aches and pains, eye issues and light intolerances.

I’ve been discussing with work to start a phased return as I’m stressing myself to give it a go, I don’t know what will happen but feel I need to try. No medical person can advise on recovery they just offer anti depressants which I don’t want to take. I’m struggling and also making my partners live hell as I have mood swings. I really find it hard to explain how I’m feeling as no one can advise me how long this tunnel I’m in will last. I’m going to see someone about natural substances to take as I will try anything bar anti depressants. I’ve tried physical activities like projects in the garden and hose but it just washes me out the next few days.

Am I alone in this or can anyone advise what they’ve done to make a recovery easier and quicker.

Really don’t know what to do for best?

[Eli_Acct]

Hello, I got VM Sept. 1, 2019... and I have neck pain, stiff neck, light sensitivity, burning eyes, joint pain (knees and ankles) and just get exhausted with any physical activity. I can't run at all. If I go up a flight of stairs I feel like I just ran a marathon. I've been working for a couple months and I think that has helped my mental state. At home I was so sad all the time. It is definitely tiring but luckily I work at a desk.... the problem with that is the computer screen.

The neurologist prescribed Gabapentin 300mg once a day and so far its only helped with the burning eye sensation. She said it wouldn't hurt me to try acupuncture, so I have an appointment next week. She doubled my Gabapentin but I'm gonna try to see how acupuncture affects me before I take more meds.

I also can't explain to my husband how I feel. He thinks I'm exaggerating when I tell him I don't want to watch tv because of my eyes and such. I just have to listen to my body and rest when it needs it and not push myself hard but having 2 kids and dogs, its hard not to.

I've been told CBD oils could help, according to the person selling them ... I haven't tried but its something to think about. Hope this helps some.... message me if you need to talk. Good luck!

[Cryptococcal_Ninja in reply to Eli_Acct]

I'm recovering from cryptococcal meningitis, which came on wickedly strong about 15 months ago. It took my memory, thought process, balance, coordination, sense of smell/taste, right side of face was paralyzed and hearing in both ears. I've made a drastic recovery so far due to a lot of medical treatment, optimism/determination on my part and doing my own constant daily physical therapy. My family and people that know me are blown away with how well I have pushed myself to recover, but if I had even one person to think I'm 'exaggerating' what toll this has taken I'd drop them like a bad habit. This illness (any strain) isn't like anything else out there that people get struck with, get medical treatment, have a few side effects, heal up and life goes on. Absolutely no doubt meningitis will leave life long effects for most people in it's wake.

[thomasmlopezjr]

I had VM November 2018. It took 6 months to be able to exercise and 9 to not to regret it. My memory is awful now. And I took pride in my photographic memory pre VM.

I really don’t have much advice given your specific circumstances. But it will get better. Take pride in your progress. Not because it makes sense to. But because it will truly be exciting. Life will get better. We are in this with you.

[Buckie3]

MWDL-I am now post 4yrs encephalomenigitis w/septicemia. My life has changed and it will never be like it was before but I have found a new normalcy and you will too. Find a neurologist, what you experienced is brain trauma. I still have issues with bright lights, certain sounds and tunnel vision. I wear sunglasses, low light on my computer screen. I work still, I work in a medical office, but my hours are 5-6hrs a day. I don't push myself anymore because it is not worth putting my self and husband & friends through my anxiety. Your body is going to tell you what you can and can't tolerate. Listen to it. I still get head pain but I do not take any medication as I need to build up a tolerance. I still continue to this day to struggle sometimes but I allow myself to have quiet time.

You'll get a little better each day. Use this site as support and sound board everyone understands and will guild you through.

[Jmac999]

Hi there - I am 7 mths post Shingles VM. I have taken a holistic approach to recovery and been seeing a psychologist along w neuro, accupunture, naturopath (for immune support and brain health supplements) and started a graded exercise program at 3 mths when I was still so fatigued. Also eating very healthy diet, no alcohol. So, I guess what I am saying is that I’ve been doing all the stuff that can help. And yet at my 6 mth check up am still getting enough symptoms that life is very challenging sometimes.

Like others, I returned to work (I am a cofounder of a business so have business partners and employees) but on a phased program. Whilst some weeks I don’t feel like I get much done, it does make me feel better that I’m working - low grade headaches continue whether I am resting or working so may as well work!

Seeing a psychologist has also been a great help - I now do daily mediation, weekly yoga and journaling. All helps!

I have recently had to start Amitriptyline to trial for bad headaches that continue a couple of times a week. It’s an anti-depressing originally but now used for migraine prevention. Side effects not great (mainly bc it’s a sedative and even taking at night still makes me slow in the morning) but it seems to be working. Neuro wanted to get me on it at 3 mths but I said no. Seems to be helping now though... another 3 mths of headaches led me to trialling it.

Good luck with your journey, it’s a bit of trial and error in my experience.

[Jonad724]

I'm 17 1/2 years post near fatal VM and so I hope my experience helps. There is no real way of speeding up recovery from VM I'm afraid and experience shows that the time to recovery is pretty much linked to the amount of time you allow your body to rest and recover. If you don't rest a) you will find that you can't go for long before your body makes you rest and b) your recovery time will be longer in a ratio to the amount of things you try to do. I know it's incredibly frustrating and in our lives these days we're used to things being quick and easily resolved by unfortunately VM hasn't read the same manuals.

6 months into recovery is not long in the scheme of things, I appreciate that's not what you want to hear but you must listen to your body and rest when you can. Little and often exercise wise is probably the best method to use and you may have to adapt what 'normal' means for a while. What was normal pre VM may not be the same post VM. Don't try and replicate what normal was before VM, I tried that and ended up in the back of an ambulance with lights and sirens with my wife being told that they were losing me. If you try and push through, as you have discovered, it will wipe you out and your recovery will just take longer.

VM recovery time is also very difficult to predict so prognosis is not easy even if your doctor doesn't think that VM is no worse than flu and that's what they are taught in training. I went back to work after 6 months but I was no where near ready but my salary had been cut and we had financial pressures as most people do. I was able to do light swimming around 9 months after the first attack but I wasn't able to go back to really exertive sport for another 4 years after that because I have a brain injury and it needed to settle down.

I can't stress enough that if you exercise, you need to stop feeling like you could have done more, if you keep going then any plans you have for any more sessions will go on hold.

The good news is that it isn't life limiting. I have done things post VM that I never thought I would do, ever, like 3 half ironman triathlons, Long Course Weekend Wales (one of the toughest three day events in the world) and also several other shorter triathlons.

I have the privilege also to be a volunteer Community Ambassador for Meningitis Now so if I can help answer any questions, or just be a listening ear, please PM me, more than happy to help.

Take care and good luck, Jonathan