2.5 months in and no end in sight

[Vmstein]

First of all, I want to thank you all for this forums. I’ve been reading it for a while now and probably would have lost my mind without it bc all of my dr’s were going by the “7-10 days” or “4-6 weeks” nonsense. My neuro redid my brain MRI and spinal tap at 7 weeks, gave me 5 days worth of steroids and said I’d be fine whenthey were up. Um....no. I’m in the states, it’s 97° out, and I have 2 kids on summer break. **i cannot stay awake**. Cannot. I went to the hospital on March 14, and as of today I still sleep a minimum of 16 hours a day. It’s like I have mono and the flu at the same time. My kids have been sitting around for the break so far w iPads glued to their faces and there’s just not much I can do about it. It feels like I will NEVER have any energy- or any sense! Oh my goodness the brain fog and crazy word jumbles, memory issues, etc.

I’m so grateful again to read stories of others w Post VM and know I’m not just some crazy freak. ❤️

[IRHONDA]

Hi, try reading Becky Dyvorak WORDS....you have to be positive the book is only $20 Australian … from the BOOK DEPOSITORY...I think its from America. so cheaper for you, free postage... learn to stop saying you can't and just give things a go doesn't matter if you succeed long as you give it a go, the tiredness is a hard one, I have been taking extra iron as I am vegan its harder for me as it makes me tired being low in iron so having the vm as well it is harder but we can do it... we will do it !!! if you have young kids you can fight it please get the anti viral vitamins as well keep reading and taking notice of what others are saying to do, ive had this full blown 4 times since 1998 with mini bouts in between and they are sometimes nearly as bad the tiredness ive had bad this time as I only had it in feb. and im 64 but the power of the spoken word is important we have to keep being positive and you have kids so more so for you...take care and I hope you get over this quickly … you will have the little things that linger like stiff neck and yes sometimes the headaches and tinnitus little things that we learn to live with … anyway best of luck x

[Sunny308 in reply to IRHONDA]

Do you experience strange dizziness ? Like when waking up

[IRHONDA in reply to Sunny308]

yes I do every morning and when I get up my dogs get so excited so I really have to be careful it takes me around 20mins to come too mmm that's only been since my episode in February

[TCTC19]

Hello,

I’m almost 5 months post VM and good news it does get better .......but with time. Post VM fatigue is hard when you have small kids who require your attention. But it will be okay. Take small strides and every day you will notice you can do something you couldn’t do before. You will have good days and bad days so embrace both. This is a humbling disease. You will have to fine balance to strive to be your “old self” while embracing where you are. It’s not a easy journey but it’s doable. I now have more good days then not so good days. My energy level has come a long way. I’m back to working out in moderation. I still get muscle spasms and intermittent headaches and head tightness, ear fullness. But it’s Way better than before. I did get some good out of it. Because my time and energy is precious I don’t the sweat small stuff and I don't waste my time on negative people or spaces... it’s actually made me happier...

I hope this helps... stay strong

[Oooomeooooomy]

It takes time and you have to let yourself heal. Its hard but it's a must. I am 4 months post VM and still get fatigued but I am getting better. There will always be residual symptoms lingering, but only with time rest and self care will it get better 💘

[Vmzoster]

I’m so sorry you are going through this. The only thing that helped me while it was that severe was knowing it was that way for others and that, at some point, it would improve. It is a long, bumpy road and it’s not straight. There are steps forward and backward. Them just when you’ve been moving forward so long that you sort of forget you are still in a long recovery, you get a big energy or brain fog or other major symptom reminder and a couple steps back. I’m only 4 months out and it rocked my world. I’m finally getting to a place where I can concentrate longer and get up decently early but I thought it was never going to happen again. Confusion and difficulty talking or listening to others talk to long still happens but not as much. Good luck to you! It will get better but it’s a matter of time and everyone is different.

[DrShannyn]

I know how you feel Vmstein, I am going on a year and a half and my Dr's have no clue. They've tried everything from meds to craniosacral therapy to botox...and nothing seems to give me any reprieve, let alone bring me closer to the normal I once new. The headaches never cease, my energy levels are hit or miss...there are days taking a shower is just too much to handle. I have a very high stress job (one I cannot afford to lose) so all of my energy goes into maintaining my position at work and they are way past being sympathetic about my condition... after 6 months everyone expects you to go back to normal, and after a year they start blaming your age, or being a woman or hormones or anything other than VM...because it can't possibly STILL be that... but I know it is. None of these symptoms were present before I got sick, I had never had one single migraine prior to contracting VM...now I deal with them daily. I'm tired of being tired, and I'm sick of complaining about being sick... Someone has to have come up with SOMETHING that will help or at least point Dr's in the right direction to treat the aftermath of this! I'm sorry you're going through this too, my best advice is to find a good summer camp for the kids so that you can sleep, because that's the only thing that seems to help...

[OlamanaMartel]

I feel for u with children, I’m over a year and 1/2, and can’t imagine being around children. Let alone caring for them. I am a guy tho and we r not as tough as women. I intend u heal quicker ! It is a long haul, with it seems more downs than ups. I’ve been bed bound most of the time and require rest after any little task. Just beat! Any travel is exhausting, can’t even think of flying. I had mono after I left hospital , and u may have as well, might wanna get that checked. And maybe get checked for that and beef up on supplements . Bless u in your recovery and sorry for your discomfort . May u have peace in your recovery and do good in being stress free! Real important! Rest rest rest !