I was told is normal to get headaches or some kind of problems after viral meningitis , the doctor told me 3 or 4 months, its over a year , still have headaches, but i also know a friend, her daughter had meningitis but she is doing ok , just hang in there lets hope your daughter will be fortune. Hope the best for both.

My most recent episode of viral meningitis was in Dec 2011 and was the longest in duration at 6 wks. I was able to treat at home with heavy meds since the virus wasn't a stomach bug this time and I could keep meds down as long as I took nausea meds - with kids, this was less stressful for all of us than me being hospitalized for the duration. I have had a constant severe headache since that episode - it is like the meningitis never fully went away - it has now been 14 months. I've had spinal taps and blood patches. I've tried infusion treatments, occipital nerve blocks (this helped moderately the first time), and I was carrying around a ziploc bag of meds everywhere I went, just to function.

I was finally referred to a headache clinic - the doctor said that he has seen this before and that the pain centers of the brain are damaged during the meningitis and it takes time for the brain to "reprogram" itself. It will eventually heal but it requires rest and pain management (can't heal if you are still telling yourself that you are in pain constantly). I have been on a regimen of 150mg Topamax and 1800mg Gralise (this is a 1/day version of Neurontin/Gabapentin) since June and it has made the biggest difference. I've gone from a daily pain level of 6 or so, down to a 1 or 2. In October we also added Botox therapy, which helped numb the pain receptors and that brought things down to a constant 1 except for a rare break-through headache on occasion. I am now changing from Topamax to Lamotrigine to reduce a bit of "brain fog" that I feel I experience on occasion and a raising the Gralise to 2400mg since I've been on it for over 6 months. As you can see, this is a bit of a "fluid" process where they constantly monitor and change things according to my pain levels with the goal of me being pain-free. I've had a 2nd round of botox - it definitely helps - and pray that the healing process continues. I am in a far better place than I was this time a year ago, but am definitely "cured".

I'm sorry to write so much, but I've been dealing with this for so long and with such severity this time that I wanted to let you guys know that it is normal to many varying degrees, BUT to push until you find a doctor that will help you. This will likely be at a headache clinic - the neurologists looked at me and said that they just had no idea what was wrong or what to do, but these other folks knew right away. It brought me to tears to finally have someone say "we know you're not crazy", but those folks are out there.

Correction: I am in a far better place than I was this time a year ago, but am definitely NOT "cured"

Does anyone have a clinic or doctor they can recommend for treating Post Viral Meningitis Headache? My daughter is 15 and has had a constant severe headache for 14 months on June 1. She is sensitive to bright lights and loud noise, she gets dizzy and nauseated, has a lot of memory loss and concentration problems. The back of her neck is also very sore and has been since she had the headache that started about April 1, 2012. When we went to Children's Hospital she had 106 fever, hallucinations, rapid heart beat, very dizzy, extreme light and sound sensitivity (kept a cool wet washcloth on her face and did not even want anyone in the room talking), very sore neck, a sore throat. Also elevated white blood cell count. They said they were 95% sure she had meningitis but needed to confirm with the spinal tap. After 3 attempts on the ER bed and having to use a bigger needle and higher place on the back they finally got a bloody sample. Two days later they said they could not use that sample and needed another. It was inconclusive and an opening pressure of 21. She did immediately feel better once the first spinal fluid was drawn but then was very ill in the hospital for about a week. They tested for strep, mono, etc. Upon discharge they said even though she had classic viral meningitis symptoms they were going to just put down unknown severe viral illness. My husband and I feel confident that is what she had, they even had us in isolation. She was hospitalized a second and third time not long after due to the extreme constant headache. Neurology, etc. did all kinds of scans, tests, etc. and could not find anything. They have tried all sorts of meds. Finally about 4-5 months later they finally worked her into children's hospital headache clinic where she is currently being treated. They are saying since there are migraines in my family (grandmother, brother, sister) that she has a migraine that was triggered by the illness and that the only treatment is migraine meds, DHE injections, etc. none of which have worked so far. She hurts so much she has started cutting herself. She is in therapy to help with coping with the stress and pain. She has given up hope and says if this is the way life is going to be she doesn't want it. It breaks my heart and I am searching for answers. She was in the hospital this past week in psychiatry and he could not find any underlying cause for the depression/cutting, etc. except the constant headache and said we need to get it taken care of asap and we need a second opinion as he did not feel her doctor was moving fast enough on it. We are at the end of our rope. From everything I read this matches the Post Viral Meningitis Headache, so how do I get her doctor to recognize this? He is supposed to be an expert in his field. Any advice is appreciated. I do not want to lose my daughter, but it has turned her world upside down and she is desperate.

There is no test for migraines/headaches. Doctors have to rely on the patient or caregivers for this information. You have to advocate for her to have a regular neurologist.

I started with Imitrex as a migraine aborter. It helps, but sometimes the migraine is persistent. There are prednisone tapers that help with the migraines too. There are drugs that push the migraines further apart, amytriptyline and topomax. I also take zofran/onadesteron for nausea and flexeril for muscle relaxation when too tense and unable to unclench my muscles. Then there is the breakthrough pain med that is a narcotic. I take it when the others aren't working and it's before time to take the next dose.

Wearing sunglasses in bright light or florescent lights with a hat is an accommodation I've figured out. Florescent lights are a trigger for the migraines. The dark glasses keep the florescent light from going in my eyes. The hat keeps the florescent light from going over my glasses and into my eyes.

Strong smells, raw green pepper, are also among my triggers. It is good to try to notice if there's a time of day, after a repeated activity, or some other pattern to the headaches. I also rate the headaches. 0-no headache, 1- mild take nothing headache, 2- over the counter medication for the headache, 3- knocked on my back, pausing life, headache.

I don't know if you've joined the depression support group, but I'd do that as well, as your daughter's headaches are co-morbid/ co-occuring with depression. For that, zoloft is a good mood stabilizer, and amytriptyline will help to get to sleep at night helping to reduce the concurrent fatigue.

Teaching and learning about coping skills are a great thing to do. There's paying attention to what's in the room (how many tiles are in the ceiling, how many blue/ white/ purple things can she see, have her describe the room she's in) this is a good distraction technique. Also, deep breathing and yoga does wonders for the body and for being able to cope with pain and stress. Any kind of exercise does, but yoga because it focuses on the breath gets you remembering to breathe. When we get all tense, our breathing gets shallow, heart rate increases, and blood pressure skyrockets. By deep breathing, we initiate the relaxation response and tell our body that it is safe.

Learning how to instill a sense of safety is key to stopping the self harming. Even just repeating, "I am safe. Today is Monday. I have to go to school/event" can be enough to bring on a sense of safety.

Pain is not constant and it is just a mental event. Think of when you stub your toe. You really move it suddenly, with lots of pressure and force. That is what the body notices. It sends those signals to the brain, where we interpret the messages as "Ouch!!!" This happens really fast. But, the pain doesn't happen until the signals are in the brain. Now, with a headache, the pressure/ tightness/ achy feeling are physically in the meninges. So, the signals have even less distance to go before being interpreted. My mantra during bad times, is "Pain is just a mental event."

All headaches occur in the meninges. In meningitis the meninges are swollen and tender like a twisted ankle, just in the head. The meninges are also the shock absorbers of the brain and spine. They are just under the skull and cover the entire brain and spinal cord in a protective layer.

With the brain, injuries take a long time to heal. My neuro doctor said that the first 6 months there's lots of healing, the second 6 months still lots of healing going on, the third 6 months less so, and after that healing levels off.

I'm at 21 months. My meninges are paralyzed from the severity of bacterial meningitis when I was taken to the hospital. I almost died. There are cognitive, perceptual, physical, and behavioral changes associated with the meninges having been infected and possibly damaged.

the cutting is your daughter's coping mechanism. she needs to learn new skills for coping. Anger is a valid emotional response to this, harming herrself is not. I am in that process too.

Knowledge is power. Share this with her and let her take it in slowly or voraciously as she is able.

It does get better. I had constant headaches at discharge in 2011. 66% is a 33% improvement. i have come a long way. I learned a lot about meningitis from WebMD and the Mayo clinic. both have good online resources. You can investigate the physical changes of meningitis in addition to looking up medications and a host of other things.

I just started joing in the conversation here and just joined Daily Strength. I hope you and your daughter learn how to cope with this.

A great writer on grief, which is part of what we all go through with this diagnosis, is Elizabeth Kubler-Ross. She wrote about the five stages of grief, but never meant for them to be understood linearly. Life, and grief, is messy. We have grief for what was compared to now, for what changes our life will have to go through, and for the drain on our persons from the debilitating effects of living after meningitis. Whether that grief is recognized or not it is there. Her writings may prompt conversations with your daughter and any other family members about what you grieve over from this incident in all of your lives. Wikipedia is a good place to get the basics of her views on grief.

Anyways, I hope this helps you and your daughter and others out there too. I am just a fellow sufferer and have lots of knowledge on meningitis/meninges and psychology. I have a bachelor degree in psychology, so i really like it. I'm not a counselor or anything beyond that. I hope you do well going forwards.

Thank you mmmgoody! I definitely have noticed her trend for grabbing her sunglasses, she says it helps immensely. We've tried Imitrex, prednisone, amitriptyline and topomax. She is currently on 150 mg Nortriptylene, down from 150 mg to 50 mg Topomax (doctor says it is the meds causing all her "brain fog" and memory problems although I disagree), and Flexeril. Most recent meds were Fioricet, Axert, Maxalt, Compazine and Hydroxizine. I will show her your message. It might help coming from someone else besides mom to know there are others who feel her pain. Her pediatrician is also wanting her tested for Lyme Disease as she said if Lyme Disease is present and attacks the neuro system it can mimic meningitis. Sad to say but in a way I kind of hope that is what it is as there is hope for treatment there. We just feel like we're alone when it comes to dealing with her symptoms and trying to help her get well. Her headache specialist is a pediatric doctor who is the head of the best pediatric headache clinic in the state and the basic response we have now is just that he's tried about everything he can so we'll just wait and see what happens. Really bummed right now :(

Hi , my name is Eduardo , I had tried so many medications to help with my headaches after I had meningitis .
Currently I'm taking : Amitriptyline HCI 25 MG 3 pills at bed time + Topiramate 50 MG 1 at bed time. And also taking Relpax 40 MG has need it ( relpax is very expensive , insurance only let me get 6 pills per refill and I had to pay $47 ) so far it was helping a lil bit , but now it doesn't work has well any more.
I had try so many . Liryca didn't work for me.
Stress , anger , change on weather , humidity , increase or trigger my headaches , I hope this information could be useful and maybe , just maybe helpful , hang in there.
So far I can tell , headaches could be permanent damage , so we just have to make the best of it and try to leave a normal life , good luck to all .