Post viral meningitis migraine-what fun!

Hello all, wow the fun doesnt stop does it?? Viral meningitis 1 year and 11 months ago and thought i was getting it again but no. Luckily not. Still in hospital for 2 weeks with post trauma migraines and medicatiion overuse. I was using too much codeine for the headaches and body aches and it created the headache to become worse. Got so bad I was having light and sound sensitivity and nausea as I gave up the codeine and the headaches got worse over two week period. Into emergency, no meningitis found but an analagesia induced migraine condition. On lignocaine infusion for ten days and no codeine allowed so withdrawal and continue the ampitriptyline to control neuropathic pain. Its getting better actually but the headache is still there in the background. The drs said it could take 12 months to get under control. Anyone else had post trauma migraine they would like to share ? Any luck with alternative medications or acupuncture etcfor migraine? I have to slow down also as I was going like a cut snake and it did not help. Must relax more, smell the roses and live differently. How are you all going for changing your life styles? thanks and best wishes to you all my fellow meningitis survivors!!

22 Replies

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  • Hi Rowenafly. So sorry to hear about your latest illness, meningitis is an awful illness that can totally change your life. You are a survivor and you will get through this.

    Like you I'm slowly getting there, some days are worse than others. I still get headaches but not as much like I used to get. Balance is still an issue with the feeling of dizziness/pressure in my head and not forgetting the tinnitus and deafness. I also feel like I'm constantly drunk. Hoping to go back into rehab soon so fingers crossed after treatment I'll will be alot better. Looking forward to walking with just one walking stick instead of a set of crutches.

    Wishing you all the best

    Tinks

  • Dear Tinks, did you get back into rehab? Thanks for the nice reply. We are all in this together and its good to know we are not alone. Did you get to use just one stick yet? I am out of hospital and managing the migraines but they are here every day. I am meditating a lot and I can manage with the good feeling of relaxation. The mediatation part of my life I am loving. I wish you all the best,

    Rowena

  • Hey

    I suffered with exactly the same, this went on for some 3 yrs, until I had lumber puncture and the headaches ceased......

    Not saying lp gets rid if headaches but in my case it did...

    I'd had constant headache most unbearable at times..... I thought I must be going mad....

    Mindfulness meditation and pranayama breathing really helped

    But best advice is nurture yourself, slow down, breathe!

    Your brain needs time to rest...

    With best wishes

    Siobahn xx

  • Dear Siobahn, thanks for lovely reply. Soo glad to hear you are headache free. My meditation program is helping the most out of anything. I am learning to be calm with the migraine. It is slowly going away and I am so happy. Yes the migraines do make me feel bit mad at times too.

    XXX

    Rowena

  • Wishing you lots of luck on your recovery..I've had to cut myself off from painkillers, it's incredibly hard but keep going. I have found cranial osteopathy amazingly helpful and relaxing.my neurologist even backed up this recommendation as keeping the muscles in your neck as relaxed as possible can help a lot. X

  • Thanks Glittergirl, yes my neck treatment is helping a lot too. My migraines are going away this week and I have had to stop all painkillers!! My God! But it is done. So I suffered the pain of not having any painkillers and now I am using meditation. I start a part time job soon and I am allowed to have some anti inflammatories on the days I work for the migraine if need to. Hope you are feeling ok, all the best to you

    Rowena

  • I get migraine but I try not to link it to meningitis or I would freak out! I probably have an episode a month where I get cluster - some times 4 /day. However! I remain optimistic and help myself by drinking lots of water and making sure I eat right. I take a super multivitamin, cod liver oil capsule and a high strength at johns wort. I also make sure I sleep 8 hours per night and get up at the same time every day... If I sleep in later I feel that horrible burning sensation in my cheeks and temples which takes me back to being ill.

    I also try not to read so much about meningitis - if I do I end up going 'I got that. I got that too. I got that on top... OMG - I'm going to be ill again'

    I take care of my body and read the signs... I also stopped drinking alcohol, taking Ibuprofen and any other headache drugs. I find that a nice coffee can cure a headache... But too much can give you one.

    Feverfew is supposed to be excellent for reducing headaches too but I've not tried that.

    Good luck everyone

  • Hi Mi55v, yes I am doing exactly the same as you! Awesome. Same with the coffee and the getting up in the morning. Actually my migraine is not neccessarily causally linked to meningitis. My meningitis professor said they cannot empirically link the two together because the really evil migraine started this year, in 2014 and the meningitis was in 2012. So, migraines and headaches can develop independtly. Obviously a proven causative link in most cases is difficult to know. On balance of liklihood , a serious brain infection and serious head ached look related, but not totally definative. I dont worry so much about the meningits symptoms now as they are pretty much over. But the migraine is like its bastard son. Ha. Anyway I wanted to wish you the best and so happy to hear from you.

    Rowena

  • White willow is also recommended - but I forgot about that one! Oh the joys of memory loss! Ha haa

  • Yes, I had the post trauma headaches for many years and treated them with Tylenol with codeine. Now I just take Motrin when I have a headache but it took many years to get where I am today.

  • Massage and deep breathing exercises help profoundly. As do especially having agood headache specialist. Good luck!

  • I too have post meningitis migraines. An over use headache is no fun. I just have to take the migraines abortive meds and cool and dark room for the sound and light sensitivity. Right now that means turning on the bedroom ac. Amitriptyline is also a migraine preventative med.

  • Maineknitter, thanks a lot, yes I am using amitriptyline and I like it so far. Just bit hungry on it. I have been out of hospital for 2.5 weeks now and this week the migraine is better. I am meditating an hour a day and I can manage it with this. I have been five days totally painkiller free in a row!!! And I only take NSAIDs that are safe. No more opioids at all. And only allowed 15 days a month using the anti inflammatories. It sounds like you have been where I was and survived. Its full on isnt it. But, good to hear from you and all the best to you

    Rowena

  • Hi Rowena,

    I'm happy you're out of the hospital. I've been admitted a few times for the headaches. No fun. Anyways, it is good to be able to manage without opioids. I am waiting for acupuncture, and have tried physical therapy. The physical therapy did wonders for my back and posture, but not much for the migraines. I am due to start Botox again, second trial of it, next month. I hope it works. I'm tired of the pain. I can do only so much acceptance of this all before getting upset about it. Anyways, I'm happy you are doing better.

    Jen

  • Dear Jen my best wishes to you and all the patience you have shown. We will get there eventually. Xxx Rowena

  • Hi Rowenafly.You have really been through a tough time, you must be fed up with it all.

    I would really recommend cranial osteopathy.I recently began weekly sessions and for the first time since February I feel like a human being again.I had v.m and was previously superfit, but have struggled, like many with fatigue,severe headaches etc since.Went gradually back to work as nurse in July but severe headaches driving me mad! I found myself feeling really low and negative, not like me at all.Headaches felt like permanent clamp round my head

    Now..am cycling again, headaches no longer constant,some days NO headache and just feel my body belongs to me again.

    The cranial osteopathy is,amazingly , being funded by meningitis Now.A pilot study last year showed a positive difference in post meningitis symptoms after c.osteopathy.

    So, my advice, give meningitis now a call if funding is an issue for you.They're so helpful.I couldn't have afforded the treatment.They arranged referral to local practitioner with relevant background.

    I'm signed up to sponsored walk already to put money back in the pot.

    Good luck, and hang in there.Let us know how you go and if you have any c.o

    Kath x

  • Dear Kath, so excellent to know about cranial osteopathy, thanks for that. I will try. Glad to hear you are back nursing and riding your bike, awesome! I am slowly returning to the land of the living now and doing pilates classes and swimming, slowly. Been out of hospital 3 weeks. But the meningits was 2 years ago now. Wow, its a long road isnt it. It has put huge financial strain on me but I still bought a house and I am so happy about that. So, I am working part time for the next year to let the migraines settle. Are you full time at work? I am in Australia so I just fund my own treatment as we have no mengitis trust over here. All the best to you, was your meningits a while ago?

    xxxx Rowena

  • Hi rowenafly, at 6months post VM I am still having severe headaches especially since coming off amitriptyline. This week has been terrible as I had a painful relapse. I tried reflexology which seemed to help. The therapist said that my big toes (head area) were solid as was the neck area. I had a lot of pain in these areas. My ear area was crunchy and I do have vertigo. She also found that my right sciatic nerve area was tender ( the doctor stuck the lumbar puncture needle into my right sciatic nerve, the most pain I have ever experienced. I came out feeling better than I went in, slept well and felt my headache has eased a little the next day. I have also found cranial massage helps ease the pain as does hanging my head upside down, so kneeling and tipping forward placing my forehead on the floor. This really relieves the pressure of the crushing headache. What joy we are all having! I never knew VM had such a long lasting effect ( and I used to be a neuro nurse!)

  • Dear Bonkitty, I was on amitriptline up until 3 months ago and then trialled without it but the migraines burst through or developed due to the neuropathic pain mechanism. I am back on it now to 50 mg a night and its helping a lot. Maybe you came off it abit early? Just a thought. I was happy to go back on it as its helping my jangled central nervous system. I do have to watch the weight gain and the constipation, but I can manage those things ok. So if it worked for you, dont be worried about going back on it. 6 months is not long. I am two years post VM. But I did overuse the codeine, so that the complicating factor. Might have been ok had that not happened. I find osteo helps too. so yeah, 6 months is not very long in my experience, I was still pretty shite then. I was really good at the beginning of this year, awesome really. Surfing, going to gym working lots. Just last 3 months it went bad due to the overuse of medication. So take heart, you will come good. I had a severe case of vm according to the trauma hospital I was in. Australias best trauma hospital. So, there you go, you too will recover!

    So if you are having severe headache, dont use painkillers, try the preventatives like you were on. Tell he how you are going if you like and I want to thank you for writing, it makes me feel more human to talk to fellow sufferers.

    Regards

    Rowena

  • Thank you Rowena, it is really good to hear that you have managed to get back to surfing and the gym. I was super fit before VM and finding it hard to be so sedentary now. I started the Amitriptyline again this week and it is helping already. I am not using any other pain relief as you are right, it doesn't work. I do find tipping upside down helps tp relieve the pressure. (A grand sight to be sure!) It is so good to talk to fellow sufferers as the medics don't seem to know much about the after effects so this sight has been very helpful to know what to expect. I hope you are feeling ok and continue to make good progress. Regards

    Bonkitty

  • Dear bonkitty, good on you for everything you have done. Glad the amitriptyline is working. It's a bit of a wonder for me so far. I will stay on it as long as I have to. I'm coming good so far. 6 days without severe migraine!!! Yayyy. Did 2 hours exercise today!!! Unheard of. I hope you are feeling better and stay in touch. Xxxxx Rowena

  • Hi, yes the Amitriptyline is starting to kick in again so my pain has eased off. I am very dizzy though.

    2 hours exercise sounds like my dream hope! I have walked my dog today and apart from looking as if I am drunk, it went well. If all continues to improve next week I will try some gentle gym exercise. For now the ironing is serving as my extreme sport!

    Love to all,

    Bonkitty

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