Meningitis Now
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Broken hearted Mom

My daughter was just diagnosed with VM on Wednesday after being admitted to the hospital.

She's a Mom with a family like most a wonderful job that she loves.

I'm very disturbed how her conditions & symptoms are still surfacing while she's in the hospital. I do understand that it's only been a few days since being admitted . However what disturbs me the most is how the medical community treat VM.

From reading through medical journal's and Google which has become mom's best friend.. I'm totally broken hearted reading that this could cause long term effects in her brain, but then there's confusing dialogue stating that there's really no specific cure just for the patient to continue to take pain medicine stay rested, no stress..but doesn't regard VM as any disabling disease. As I read through some of the other comments in writings in the VM community here I see where others are still suffering after yrs of being diagnosed.

Shame on the medical community for not educating or helping the one's suffering from it, and also their families. I'm at wits end, because my daughter is being treated as if her condition isn't anything to worry about. She may have had all the symptoms for over a year & misdiagnosed every time we rushed her to the ER. I'm just happy I've found this community where everyone understands. Just want answers how to care for her after she's discharged from the hospital. They don't offer after care & as I stated earlier the doctors and medical staff show no regards as to how long she may have had VM, & the effects she's experiencing now while being hospitalized.

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I had it back in November 2017. I was dizzy, had headaches and was vomiting everyday. I was advised, on this forum, to find a cranial osteopath and have acupuncture. I had the cranial osteopathy for 3 weeks and didn’t notice any difference at all but week 4 he introduced acupuncture and the following day when I woke up, the room wasn’t spinning and I haven’t been sick since. That was 3 weeks ago. I can’t recommend it enough! After 6 months being bed bound, I am euphoric! I am up and about and able to leave the house alone. I do still get tired and have to sit down between household chores and still need the odd nap but I don’t feel constantly dizzy or sick. Please find a good acupuncturist for her and start it as soon as possible.

Good luck x

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I had viral meningitis 2 years ago and I am a mom of 3 beautiful kids. I agree the medical community are unaware how serious this is and how long the recovery is. Expect your daughter to take at least a year to recover after being discharged from the hospital. The most important advise I can give is treat this as a brain injury and allow her to rest, a lot. If you do too much your body will let you know very quickly. Take things slow and pace youself. The recovery is very long and she will require a lot of help with day to day chores. Taking the kids out for a playdate so she can be alone to rest would be very helpful. Her doctor might be able to subscribe something for her headaches. Wish you all the best and I am sorry about your daughter. This is a horrific disease but am so glad you found this platform to get advise. I was extremely grateful and found others to be very helpful. Best wishes ♡

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The standard treatment is Acyclovir IV to cover for the possibility of herpes simplex virus which can take days to check for. Kaiser will not give this which has caused harm. Chuck Phillips, MD.

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You are quite right to state 'shame on the medical community'. Evidently there are something in the region of 5,000, people a year contracting meningitis and nobody seems aware of the recovery period or the legacy it leaves for people to try and cope with without any help, guidance or support. Ignorance might be forgivable, but the arrogant dismissive attitude of some doctors, consultants and medical practitioners is not. It seems not just from my own experience but from hundreds of others on this forum that anyone complaining of the after effects is treated as some sort of neurotic hypochondriac. Thank goodness for this site. At least sufferers are able to communicate with each other and offer at least some help advice and support. The frustration I have experienced particularly from the attitude of my neurologist who told me that as several MRI scans did not reveal any significant damage to my brain, the headaches,constant dizziness, almost total loss of balance, chronic fatigue, trembling in my arms, hands and legs and a host of other very unpleasant symptoms were nothing to do with meningitis and as the brain scans were clear, I should have recovered 12 months after leaving hospital. According to them if nothing very obvious fails to show up on an MRI scan you must be imagining your symptoms. The fact is that even if something significant were to show on a scan there really is in most cases nothing they can do about it anyway! Without being too unkind I would like some of them to experience what many of us are feeling like just for a few days so that they might show a greater understanding which is sadly lacking throughout the medical profession. 20 months after first contracting VM and still suffering from the after effects I now realise there is no help or support available except for Meningitis Now which is doing a fantastic job.

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I am 4 years post VM and had severe after effects including chronic migraine and spine and neck problems.

It has taken a long while to recover but now I am back to doing most things. I have climbed Mount Snowdon last year and I am climbing Ben Nevis in a few weeks.

My advice is rest and avoid brain stimulation to allow the brain to recover. But gently move around, short , gentle walks. Have the maximum time off work as possible and don’t feel bad about it. Rest is key to recovery. I also ate a very healthy diet and drank lots of vegetable smoothies which have helped to improve my immunity and general health .

Acupuncture helped to relieve symptoms and improve my energy.

I tried pain killers but they didn’t help and made me feel worse.

Fatigue has been a problem and I had to learn to work with it and around it .

The key to a good recovery is to be patient and go with it rather than fight it as that will set you back.

It has been horrible but it also allowed me to change aspects of my life and embrace new opportunities .

Take care

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I am really sorry to hear about your situation. I can tell you I went through the same type of situation. It is sad the way they treat meningitis. They just want you out of sight and out of mind. I will tell you this, having followed these reports for a awhile I have learned to just take a wait and see attitude. I still have 24 your a day migraines after 16 years, however I am in the minority, some people just return to normal in a few weeks. Just keep a positive attitude. I will pray for you and yours. Just make sure you do not hold on to a gloom and doom state of mind.

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I can relate to your story...and I my mom would even more! I’m currently recovering from my second round of VM in 13 months. The first was a brutal journey to get the proper diagnosis, and had it not been for the relentless advocacy of my mama bear, it would have taken much longer. Mind you, I’m in my 40s with a family and capable of advocating for myself - but the only way to be heard in the emergency room was with my mom. Based on other people’s experiences, I don’t know if I should feel lucky or worried. As far as I know, I have no lingering effects. But I wasn’t referred to a neurologist or infectious disease specialist until this second hospitalization and haven’t been seen yet. I think that kind of long term disease management will be key to my health, and might be a good idea for your daughter. I do have to take valacyclovir daily for at least the next year. A frustrating side effect that might be helpful to know - this medication can cause headaches for some people. So for a while, I swapped one kind of headache for another. Now that I’m at the lower daily dose, the headache has finally subsided. Expecting a slow and gradual recovery is important and maybe requesting some work accommodations if possible - shortened workdays, modified lighting, reduced computer screen time - if any of those are factors in your daughter’s work. It’s so wonderful she has you in her corner!

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I'm in the US.. I contracted VM back in October of last year.., went to four different GP's and they all told me it was a cold..... Had to have a mild stroke for them to figure it out. I'm with you on This.

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I am a physician checking around the country for any HMOs like Kaiser who purposely withhold acyclovir IV for 3-21 days for any Viral Encephalitis. You can let me know here or through my email cphil49401@aol.com ... or both. Chuck Phillis, MD

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Hi there I’m sorry you are going through this it’s just heartbreaking seeing yr child ill no matter what age they are.Emilys condition worsened quite a bit before any of the medication helped her and she cried out in pain as well as pull her hair out with the pain.Its 2 years this Father’s Day when she got I’ll and yes still gets severe headaches and has blurred vision all of which dr said could happen and has if she gets stressed it gets worse so I do just let her stay home and sleep.I really hope things improve and yr daughter is feeling well soon please let me know x

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I've had five episodes of VM in six years. I was hospitalized four of the five times. I have received a diagnosis of Mollaret's meningitis(MM).

There is a huge disconnect in the medical community. The medical providers in the hospital do not see VM or MM as anything serious and discharge a patient as soon as possible. My neurologist and infectious disease doctors agree MM is nothing to take lightly as it can become very serious quickly.

As a result of having VM so many times, I have suffered nerve damage to my inner ear which has resulted in balance issues for me. I also deal with crushing fatigue, muscle spasms & aches and recurrent headaches for the past year or two.

I wish someone in the medical field would take VM and MM seriously and find a way to help those of us who suffer.

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Hello, 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 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

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