Meningitis Now
4,528 members1,493 posts

3 month relapse

3 months post VM and I was off medicationa nd ‘well’ for a few weeks. Started the chronic fatigue feeling again and 3 days later the migraine head pain. Back to hospital. Only to be treated like I was a drug addict and that they couldn’t do much for me. It sux no being able to ‘ ow exactly what is wrong. It is frustrating to be told. Go to your GP. Doctors don’t know what to do. Think it’s time to see a rheumatologist as the think it’s an immune problem causing inflammation.

12 Replies
oldestnewest

Hello, You can find my daughter, Rosie S' Story, via the link on the forum stories from the home page.

We found that cranial massage worked wonders for her. Her job is working with horses on pretty much a daily basis and is very physically demanding.

It is rare for a story to be so positive and we have tried to let people know that this amazing complementary therapy worked for her. It helps release the spinal fluid which VM leaves a blockage for. Rosie is pretty much cured after around 10 sessions coupled with actupuncture, although found awesome relief after only one appointment. She is now free of all pain killers and antidepressants and feels right back to her old self.

We can only let you know what worked for her. It's not for all, but has now given amazing relief for many. It seems the success could be to do with the skill of the cranial osteopath you use. So it is important to find out the osteopaths credentials and experience in this specialised field particularly dealing with VM sufferers, if you can. (Not all osteopaths realise that this helps VM sufferers, it is often carried out on young babies with birthing problems). You need an osteopath and not a therapist who mearly has some training in cranial massage.

If you find you are getting the violent headaches and feeling lethargic and depressed after a few weeks, give this complementary therapy a go, it really could be worth it and save you being on prescribed drugs, along with months, years, of unnecessary suffering.

Kind wishes and best of luck

1 like
Reply

I have booked for tomorrow as I am beside myself with no answers. So time will tell. I need to try everything alternative as I have lost faith in the medical field. Thank you and I will keep you posted. Ps. I am a Hairdresser. So I know how your daughter felt with a physical job.

1 like
Reply

Hi, Rosie and I wish you the best of luck with your session. We have everything crossed for you! Hopefully you have found a good osteopath who understands about VM and the struggles you are going through. Let us know how you get on. Xxx

1 like
Reply

You have to take it easy for 6 to 8 weeks on heavy lifting no running listen to your body if it hurts stop

Reply

Hi. I had 3months of taking it easy. And I still relapsed. So now it’s about finding out the”why” and getting on with a life again

Reply

Ok now start working out till it hurts and stop and rest your on your way listen to your body good luck feel better

Reply

If you have relapses and want more help, try to find a neurologist that specializes in central nervous system infectious diseases, especially one who has published clinical research on meningitis or encephalitis. They are the most knowledgeable people on this subject, and are worth traveling to see.

2 likes
Reply

Thanks. I can't even get in to see a neurologist. Too busy or can't help with my issues. I think that's why I am so frustrated. No one ordering an MRI so I am demanding one from my GP. I am just over it all as I am a positive, healthy woman who is getting depressed and angry now

Reply

Amw41, about the neurologist. I had a really hard time finding one to get into then when i finally got in he was rude and awful. If you have facebook ask for recommendations on neuros and look the docs up. I ended up after all of it finding a wonderful guy who just happens to be younger so he wasnt real well known yet. But bonus, he has the latest info and it is soooo much easier to get in! Plus they havent been hammered down by society and malpractice and such (im in the US) so they still care and are compassionate! I hope this might help!

Reply

Hi Faith, it’s December 31st 2017 and I’ve been diagnosed with virile meningitis on December 19th. From what I’ve read I am extremely fortunate, but have debilitating headaches that only ibuprofen has been able to help; however I’m starting to have stomach issues from. I’m not able to see a neurologist until April 2018 and am already afraid of getting the run around which like most average people can’t afford to do. Have already had issues with pc doctor. I am hoping you could tell me where your doctor is located? Thank you for all your posts you’ve been very helpful!!! I wish you a very happy and healthy New Year!! Carolyn 52

Reply

I am so sorry. I feel like my journey was similar. I went into my gp of 12 years with severe headaches and neck pain. Could barely get on my feet. By the end of me begging for help for four days i was told i was just having a bad migraine and to go to the ER if i needed another shot (im in the US.) When i went to another doc he immediately expected i had VM but thought the virus only lasted 7-10 days so i should get better soon. Wrong. They did a spinal tap a month later which left me in worse pain and was pointless. The docs over here have no knowledge and its like if they dont know they take it out on their patients. Ive even written the CDC about correcting their information. My symptoms hit in august and it is now almost december. I believe it will continue to move up and down my body until one day i just dont feel it anymore, hopefully bc it leaves not bc im used to it! I believe i saw 6-7 doctors throughout august and September trying to get help until i gave up. I have been looking for a specialist myself now bc docs without knowledge only make you feel worse! As far as a GP why wouldnt they have run blood tests to look for auto immune if they are supposed to be so much help? Mine came back negative for things like lupus and lyme and the like. Im so sorry bc I understand your frustration. I live day to day. Good luck in finding help and healing! Keep us posted!

1 like
Reply

So sad to hear this is its exactly what happened to me . Do you menengitis trust web site ? Found it ever so helpful.

It feels like its never ending but you will get there as i did .

1 like
Reply

You may also like...