Viral Meningitis Headache help please...

[lyan]

I am new to the site. I had viral meningitis about ten weeks ago. Although the lumbar puncture didn't show this definitively, I had all the symptoms regarded as those of VM and spent 6 days in hospital. Now I'm struggling with the headache, neck ache, stiff back, dizziness and general feeling of exhaustion. I've had to have new glasses because my eye prescription changed and I'm booked in for a hearing test at the hospital as I think that my hearing is less sensitive than it used to be ...whilst I now also have tinnitus at times. I'm a musician so this is a nuisance and also very upsetting.

I went to see my GP who had no advice for me about how to actually feel better other than to take pain killers and rest.. she said that it would take a long time to feel normal again. I'm taking a variety of vitamins and suchlike said to boost my immune system and I'm also on anti depressants which I started taking before I had the VM. I'm very glad I was already taking them really, as I think I might have done something very drastic to end the pain by now otherwise. Its a very depressing illness to go through and I had never even heard of it before I got it.

My question is this really...Has anyone found that cranial osteopathy, reflexology, chiropractic care, acupuncture or physiotherapy of any kind has relieved their V.M. headaches or neck pain at all? I'm so fed up with taking paracetamol and ibuprofen...They work to a degree but I wake in the night with a pounding head when the pain killers wear off. I'm feeling so worn down and miserable with the incessant pain. I want to try something different if possible. I know we aren't supposed to give medical advice on here but I would be happy to hear from people who think some alternative therapy may have helped them. I'm at the end of my tether with it and some of you have been suffering the effects for far longer than I have. How do you cope?

I know I'm not alone...but it really feels like it, as I don't know anyone else who has ever had it. Nobody seems to understand that because the disease is invisible and that I've come out of hospital, that it is still causing issues for me. They think I should just suddenly feel better....and I don't.

[abracad]

Firstly, please accept massive virtual hug and reassurance that you are not alone and also things will improve in time. Personally I cannot recommend Cranial Osteopathy enough. You are nearly at the recommended 3 months stage which has given your body a chance to do some of its own recovery. I was so desperate to get some respite from my headaches that I cried trying to explain to the osteo how I could actually feel the pressure building up in my head. She was super gentle and explained everything as she worked & the reasons why I was still getting the headaches & how she could help. I also had massages to help with the aches, pains & stiffness and again this was a lifesaver. I kept saying at docs & hosp that if you didn't know me before, you just would assume that there is nothing wrong with me. Do keep seeing your GP as well so they can keep an eye on you. Being a musician is physically & mentally strenuous (spiritually very uplifting though) be sure to get rest & recovery when and where you can. You are doing really well, don't give up as things will improve with time.

[lyan in reply to abracad]

Thank you so much abracad, I'm in a lot of pain every day. Your reassurance is so helpful. It's nice to hear from someone who understands. I shall have a look round this coming week for an osteopath.

[Tupshaw in reply to abracad]

Hello. I was wondering how you were feeling. I did want to know if when you first experienced your bad headache did you have pressure too? I am so scared and lost. I just want to be normal again.

[abracad in reply to Tupshaw]

I could definately feel the pressure building up. 3/4 months after initial illness, I was still feelung it building up and started Cranial Osteo. She explained why it was happening and what she could do to help. It made me so emotional to have some help at last. I can't recommend it enough.

[abracad in reply to abracad]

It really is just rest and listen to your body. But it is important to keep your GP informed of progress 1. They can test to make sure that nothing else us going on. & 2. If we don't then more people in the future will be left wondering what on earth is happening to them. And it IS frightening. And it IS REAL.

[Tupshaw in reply to abracad]

Just curious what was the reason she gave you for the pressure?

[abracad in reply to Tupshaw]

she talked about the flow of blood to the brain and the up flow was stronger than the down flow. Well thats the very simple version!

[Tupshaw in reply to abracad]

So I guess that’s maybe why when you start doing things you feels it more?

[Tupshaw in reply to Tupshaw]

Oh and did you have a fever?

[Tupshaw in reply to abracad]

Did you have a fever?

[Mishqueen]

I contracted viral meningitis in January, supposedly. I say supposedly even though my neurologist is absolutely positive, because by the time I was able to get in to see him, it was already a month after my onset so therefore too late to even expect a good results out of the spinal tap or antiviral medications (I was on a verrrry long waiting list to get in anywhere). My symptoms have been just horrible. I have headaches and that horrible cranial pressure that feels like the top of my head is pinching off. My auditory nerves appear to have been damaged, so that every sound triggers its own symptoms. If I tried to do too many things, I'd black out cold. Constant dizziness and sensations of seasickness were as big of an obstacle as the pain; keeping me from walking or being able to be alone too long. There were no breaks in these symptoms. Good days were ones where I didn't get any migraine-like episodes where I couldn't blink, touch my face or hair, or focus my eyes too far away. Trying to fall asleep and stay asleep is basically ridiculous, but I keep trying.

Now it's mid-April. I didn't have any luck with any of the painkillers helping my headaches BUT my neuro finally gave me a steroid, prednisone. It didn't remove all my symptoms, but at least now I know which ones were due to continuing inflammation because those particular ones are improving (at least while I'm on the med, cross your fingers for me that it's permanent). I know steroids are kinda dangerous, but so is having ongoing inflammation around your brain. You might talk to your doc about giving it a go for a short time before committing to a longer prescription. I had 60mg for 5 days and I saw such a big difference that 2 weeks after it ended, he put me back on for a month, slowly tapering off this time.

I still have sound triggers for everything, and I can't do most things still and I have to rest most of each day, BUT I'm far, far less miserable than before. I have moments where I feel like myself again, and that is worth a lot to me. It's a lot easier to cope now, and I can even read short bits like emails and texts, and I can watch shows again with the sound off and closed captioning on. I know how hard this is, and it feels like you will go insane with pain but it does slowly, slowly improve. Try the steroid, let me know if it helps. I'll come back and add more if I find anything else that works.

[Mishqueen in reply to Mishqueen]

Oh yeah! I got a LOT of (temporary) relief from the tension and cranial pressure from a Cranial-Sacral Massage Therapist. Not all MT's bother to get the extra training, so take your time looking around. You want to ask them how much of their practice they spend in CS, because some went to the classes but never tried it again...you want someone who is great at it. I definitely recommend this as well, sorry I almost forgot to mention it. :\

[lyan in reply to Mishqueen]

Thank you so much for your response Mishqueen. I've had a couple of sessions of cranial osteopathy and this has made quite a difference for me. I'm now taking amytripyline which seems to help too. I'm still nowhere near normal requiring around 10 hours sleep a night or more if I can stay asleep. The headache returns as soon as I stay in an upright position for too long. Laying down a lot seems to be the answer. I'm lucky that I have a business of my own that allows me to take lots of time out. I work as a choir leader so I'm grateful that sound is not an issue for me. I can't imagine not being able to enjoy music .....that must be really hard for you. Sending gentle hugs xx

[Tupshaw in reply to Mishqueen]

Where do I go for cranial therapy? Is this a hompathic doctor? And again did you have a lot of pressure after well during your months of recovery? I know I asked you questions before but I am about to loose it.

[lyan in reply to Tupshaw]

I went to an osteopath at a sports injury clinic.

[abracad in reply to Tupshaw]

Are you Uk?

[Tupshaw in reply to abracad]

No I live in the US. I am so afraid they are missing something. I guess I don’t understand why I now have more pressure and neck stiffness then the initial headach. I mean I had pressure at top of my head but not all around like now. Is that what you experienced?

[abracad in reply to Tupshaw]

There should be a register of qualufied osteos. This treatment is more commonly used for babies so look for someone who specialises in that and then ring to ensure they know what your issues are, before making appoibtment good luck

[Tupshaw in reply to abracad]

Ok thank you so much

[Mishqueen]

Hi! How's your progress? I'm doing much better. My damaged auditory nerves are slowly healing or growing back or something slow.

I can drive again of it's just around town. I can do most errands, though i still wear earplugs all the time. Most of my misery is gone, but some sounds still make me sick. I even took on a client the other day and didn't have to rest at all. I'm excited to get ball to work and trying to be patient. I know I still can't do full time. I'm so much happier now! I'm trying to catch up on all the stuff I didn't do for so long. It's a lot, haha!

How about you? Have you hit full recovery?

[Tupshaw in reply to Mishqueen]

Did you a fever?

[Mishqueen in reply to Tupshaw]

I do still get fevers, but there is more and more time inbetween fevers now, and they are directly triggered by high brain activity (problem solving or complicated physical movements).

[Tupshaw in reply to Mishqueen]

Sorry for all the questions but did you feel weak too?

[Mishqueen in reply to Tupshaw]

I felt weak and so dizzy I couldn't walk. Most of the weakness and dizziness went away when I got on the steroid, which MEANS it was a direct result of still having inflammation in my meninges or brain.

But I still get really weak when I hear certain sounds because my auditory nerves are damaged. For example, if someone's cellphone rings, it takes me over a half hour to have a hand grip strong enough to open a jar of jam.

[Bonkitty]

Acupuncture helped to aid my recovery from VM . Painkillers only really made things worse. Mostly time was the answer . It took 2 years to get to a point where I could start to make good recovery progress up until then resting the brain was the only solution.

I had 2 daith ear piercings and that seemed to reduce the intensity of the headache . Now I have Botox 3 monthly and that has really reduced the chronic migraine that I have been left with. 3 years on I still get very tired but I can do most things and I have the headaches under control.

I take propanalol for the migraine. I stopped taking amitriptyline as I felt like a tired zombie all the time and much better when I stopped but that was 19 months in. You will need to be patient and let the inflammation settle. I couldn't watch tv as it was too bright and noisy. I couldn't read, tolerate even low noise levels, couldn't drive for 18 months , couldn't hold conversations or do much at all. Now I am back at rock concerts and have climbed a mountain!

I had intensive physio too to help with loss of balance and a neck and spinal injury that the crushing pain caused.

Rest is best now to improve later.

Good luck

[Tupshaw in reply to Bonkitty]

I hope you are doing well. Did you have a lot of pressure in your head?

[Mishqueen in reply to Tupshaw]

Tupshaw, how long ago did you get Meningitis? I had it a year ago and have occasional weakness and fevers, but the intense head pressure is mostly gone after the steroids and lots of osteopathy. If it's been a very long time, and you haven't had those two treatments or something like it, you might consider the possibility that you still have some inflammation.

[Tupshaw in reply to Mishqueen]

The steroids didn’t help at all. I was on a 4 days dose. I never had a fever only chills and this was in January of this year. I am going back for another MRI so I am going to take it day by day. It is effecting my nerves all the way down to my legs and feet. I just feel like crying. Did the steroids help right away? The pressure has not gone away and you can tell that something if going on with me.

[Mishqueen in reply to Tupshaw]

No, I noticed a big difference in the steroids at the week point. My first prescription was for 7 days. But then my symptoms began to increase again soon after, so my neurologist put me on it for the rest of the month (predinisone). When it finished, I had noticed blood in my stool for a few days before the end, because one of the symptoms of steroids is intestinal bleeding. The bleeding stopped the day the steroids did. It was not painful. And I would totally do it again, it was worth relieving the horrible pain and pressure, the dizziness, the seasickness, the migraines...*shudder*. My drop in cognition also leveled off and stopped getting worse. No mistake, steroids are dangerous. But my neurologist had begun to theorize that the inflammation had progressed beyond my meninges, into my brain itself (I was diagnosed late). Encephalitis is really only diagnosed for sure in an autopsy, but it's much better to treat it as such to AVOID the autopsy, ammiright?

I fully believe that if I hadn't gone one the steroid and found the cranial osteopathy, I would still be as sick, or worse, because my symptoms were increasing. I'm still kind of sick; my auditory nerves are still growing back a year later. I'm slightly dumber. But I'm functioning, I have my life back, and I'm not miserable. I'll take it!