Meningitis Now
4,617 members1,520 posts

There is help!

I have this disease and have had meningitis twice. The first time I was 23 and was hospitalized for four days and it took me another week to recover at home. I made a full recovery. The second time I was 38 and was hospitalized for 6 days. That was over a year ago and I still have some pain sometimes. I would be a wreck right now if I hadn't gone to Brian Tuckey at Tuckey and Associates Physical Therapy in Frederick, Maryland. This man is amazing. He is an expert at counter-strain therapy after brain injuries. I KNOW what you mean when you say, "walking through mud." I felt like I was experiencing life from behind a frosted glass wall. I didn't find out about Brian until 9 months after I had meningitis for the second time, and I've only seen him three times, but I'm able to sit at my computer and work all day and fully understand what I'm doing. I wasn't able to sit on a hard surface without horrific neck pain, and now I can go to ball games and sit on the bleachers! I was in constant pain until I went to Brian. Please consider making the trip - people fly here from other countries to see him. It's worth every minute and every penny spent. If you don't have insurance, it's $160/hour, but I don't think you can put a price on reversing disabilities. I wish you all the very best.

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Omg we can get it again 🙈🙈🙈🙈 I didn’t realise 👎👎👎😔😔😔😔

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I was told after my first episode in 2011 that my chances of getting it again would b the odds of winning the lottery....so when I got it in 2015 I was shocked and now scared that I will get it again. I notice symptoms increasing at times and I take vitamin c and zinc to boost my immune system. My disease specialist said my body probably reacts to viruses differently and it goes to my brain so try to avoid being around people who are sick. I think most people just get it once. I hope that is the case for you!

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Hello, I think what you are discribing it could be similar to my daughters recovery. It involves cranial massage, which is practiced throughout the world. Only thing is that many osteopaths who specialise in this alternative therapy, dont realise that it helps post VM sufferers. Im not sure it's necessary to fly to your physician, as this help is pretty much on everyones doorstep.

You can find my 28 year old 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, as is yours, 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 people 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.

This is what helped Rosies recovery anyway and its lovely that you and I both can give people hope. Keep spreading the word, I try to!

Best wishes

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Whatever this guy has up his sleeve, this Brian, needs to be spread around. I am so glad you have found him...now for others to find someone similar!

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Thank you maryzjoseph. I haven't met anyone else that has had it twice! Did they tell you why you got it twice or give you odds of it coming back? Like you my second time was harder to recover from. My episodes were only 3 years apart. I appreciate the name of the doctor and I will definitely look into it. I haven't found any doctors out here in California who know what to do with this disease and the post symptoms it causes.

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I've had it twice in the last eight years, I was told any virus can set it off, it can reoccur just like a cold sore, every time I catch a cold or something I do worry I'm going to get it again

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Chezza45 thank you for replying! It's comforting to know that I'm not the only one to get it more than once. When people show up at work sick I'm always on guard.

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I was too. I don't work now because of other health issues, I no longer leave the house, but my friends visit and my daughter lives with me, so I'm always on guard, frightening isn't it? I've never felt so ill in all my life, as when I had VM, take care of yourself, I hope you and I never get it again

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I too have had VM twice and my last bout in June 2016 knocked me sideways and triggered off Fybrymyalgia. I am pretty terrified of catching anything, especially with so many virus' going around. I am ok at home but at work I visibly back off from anyone who as much as sniffs! I even anti-bact'd the photocopiers.

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I'm the same at work! In fact I started using so much hand sanitizer after touching everything that I ended up with eczema on my hands which I've never had before! Now I can't use hand sanitizer and only dove sensitive skin soap. Do you feel your body trying to fight the symptoms after you may have been exposed to a virus? I know during flu season I have more episodes of pain and stiffness in my neck, nausea and an overall foggy feeling. If anyone out there has had it more than twice I'd be interested to hear from you. So far there are a few of us with 2 episodes. I'm hoping it stops at that!

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Peechesgirl....I am in Northern Ca, what part are you in? I have VM now, not much help from docs. This is sooo hard. I'm at about 5 & 1/2 weeks.

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I’m in southern ca. Orange County. I just saw your message! How r u recovering now? I hope better. For some reason doctors don’t understand the extent of the recovery!

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I've had VM 3 times. The first was when I was 18 (1983) shortly after a car accident & it was intense but resolved after about one week. The second time was in 2011, was a milder case but lasted a bit longer - around 10 days. This time has been worse. I was hospitalized twice after battling it for a week at home 5 weeks ago. I'm getting better daily but am experiencing tinnitus, photophobia, the dreaded headaches, feet tingling, temperature sensitivity, occasional mild nausea, sensitivity to loud noises, and lots of weakness. There seems to be no rhyme or reason to how my day will go. Some days I have good mornings, some days bad mornings & good afternoons, sometimes I wake up in the middle of the night with a splitting headache; I just never know what to expect. This forum has been very helpful. I'm now off narcotics for the pain relief but am taking Tylenol. The docs here in the states (I live in Virginia) have told me not to take any NSAIDS (ibuprofen, naproxen, advil, etc) as they thought my meningitis might have been caused by some sort of allergic reaction to these as well (although I doubt this very much). I wish I could take an advil as I think it would help what feels like inflammatory pain in my head & neck daily but am scared to. They did every test known to man in the hospital - twice. I was tested for Lyme, enterococcus, Cryptococcus, Herpes 1 & 2, HIV, something with mice, autoimmune causes, cancer marker screening; you name it - I've been tested for it - all negative. I'm not sure if I was tested for West Nile which is a question I plan to ask my MD next visit. Final diagnosis: Asceptic Meningitis. I continue to remain hopeful for a full recovery and try to remain grateful for what I have and remember how much worse it could be; I'm alive after all. Must admit, yesterday I had two crying spells & felt a bit sorry for myself but I refuse to beat myself up about it; today is a new day and I will try to make the most of it. Yesterday evening I actually took the dogs for a 15 minute walk outside for the first time since my second hospitalization which is the first time I've left the house in almost 2 weeks. One week ago I couldn't even leave my darkened bedroom because of the light without looking like Jackie O. in my sunglasses. I have a lot to be thankful for. I thank all of you for your posts. It helps so much to know I'm not alone.

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