7.5 years post-BM still in dreadful head pa... - Meningitis Now

Meningitis Now

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7.5 years post-BM still in dreadful head pain. Vision & hearing now fine, but debilitating severe pain in head. Any suggestions please?

ShannanLouise
ShannanLouise

I feel very low at times with the terrible pain that prevents me from doing so many things. Can't drive (I have to lie in the back of a car if I need to go anywhere), can't listen to music or go anywhere lively as noise is terrible for my head. Can now walk again and even go running on better days, but cannot commit to work (I'm a neuroscientist) as the pain is so frequent and would prevent me from doing my research consistently. I am very healthy, fit and active as far as I'm able. Don't drink or smoke and eat sensibly. I have tried so many things; acupuncture, vitamin and mineral supplements (esp B3, Magnesium, Q10 and various others over the 7+ years), flotation tanks, acupressure, Reiki, meditation (which is relaxing but doesn't get rid of the pain). I also now have Pulsatile Tinnitus. I would really appreciate help from anyone who has experienced the pain of Post Bacterial Meningitis. Thank you.

22 Replies
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I had horrible headaches too post BM. I recently had some Bowen therapy which has helped a lot to remove trauma from body and also homeopathic constitutional treatment which is ongoing to treat my overall health. Have had no headaches for two weeks now and just feel so good 😊 I hope you find a way out of pain 🙏

Thank you menchild. How many years post-BM are you? I tried Craniosacral therapy about three years ago and it didn't do anything to relieve the pain. Nor did Reiki or Qijong or yoga or pilates. Thank you for hoping I can get free of this pain. I am very pleased for you to be free of the dreadful crippling headaches.

I am just over one year post BM. Honestly one of the big things was learning to stop and rest and rest and rest. Thats what my brain needed most to heal. Pace pace pace my days. Getting better at it n doing less in a day till I found my new normal. Started making myself sleep 9 to 10 hrs a night. Letting go of all my ideas of how I thought my life should look like. Homeopathy has been a miracle medicine in my life not just recently but in the past has saved me from major surgery. Bowen therapy is different to cranio-sacral and reiki. The therapist moves the fascia that covers yr organs muscles nerves and blood vessels so everything flows normally again. It is very gentle. Sending you hope from my heart that you will heal and find a way to be at peace with the physical effects which are so challenging.

Hello menchild,

I am so pleased that you feel well again after only a year. In the first two years post-BM, I could not walk, could not have any light (daylight or inside lighting), couldn't bear any sound and was forced to lie absolutely still. Couldn't lie down so had to sleep in short bursts, sitting up because I couldn't lie flat. So I did rest a huge amount. For the following three years, I gradually became able to walk from the kitchen door to the garden gate and back, but I still rested and slept as much as I possibly could. You're right about having to let go of ideas of what life would be like. I had pneumonia and pleurisy at the same time as BM so perhaps that's one reason why I'm still not healed. Physically I am fine now. It's just the terrible pain in my head almost all the time. I have occasional days when it feels like a bad 'normal' headache, but mostly it's unbelievable pressure inside my skull. My neurologists say that I will never fully recover but my husband and I, my family and friends remain hopeful and keep meditating (which I have always done). I was on this forum for the several years, then had to come off it as I felt sad that I couldn't report that I was improving. Although I'm a scientist by training, I firmly believe that there are other forms of healing than mainstream medicine. I don't take medications (none of them have worked), but I'm willing to try any alternatives that others have found helpful. Homeopathy did not alleviate my pain in the early days, but perhaps it might now. Thank you again for your kindness and I am so pleased you are recovered. Shan

Hi, I tried everything for my headaches and nothing worked until my Neurologist suggested Topiramate. It's an anti epileptic medication and it works on headaches by 'turning off' pain signals. They seemed to work mostly straight away but after a while I would have to increase and keep increasing to stay ahead of pain filtering in. I was on them for a year and a half before gradually starting to decrease and wean myself off them. I hope things improve soon. X

Thank you Emerald. How long did you suffer the head pain post BM? I will talk with my neurologist about Topiramate. Did you have side-effects? Since you've been off them, have you had any repeat of the head pain? Shan x

I've been totally off 6 months now. I still get headaches with pressure when I do too much and along with that I am sensitive to light and noise. It all comes together but I must say these are very much split up ie every couple of weeks as opposed to all day, every day and not the constant pain I had before I started Topiramate. There is a long list of side effects listed on the medication but I had no side effects. It gave me my normality back and I found that I had so much more energy as I wasn't getting exhausted from all the sensitivities connected to the headaches. I started to wean myself off them because I wanted to see if there was improvement and I really do not like taking medication for long periods of time. Sometimes I feel as if I have rheumatoid arthritis as my joints ache so bad and I find it hard to sleep with all the pain. Meningitis also put me into early menopause so it's difficult to know what relates to what but the Topiramate definitely took away the headaches. X

Thank you very much for taking time to explain your healing so far Emerald. I'm sorry that you still feel pain and that BM has had an impact on other areas of your health. I hope that, given time, you will continue to improve. Shan x

Hi again Shannan, Ohhh my you have suffered so much and I send you endless love right now and I will hold you in my heart. I have worked with healing my mind via meditation etc for many years. I looked deeply inside myself during this time of ill health and realised that there was a pattern playing out in my life that really needed to be said goodbye to. That was my most profound healing and from that the physical gradually improved. I have said goodbye to friends and family (mentally not physically) - goodbye to old ways of relating and responding. I then had to look at my work and say goodbye to dreams and ways of working. I think that goodbye was hardest of all. I am still in the grief of it all and letting my heart open to a whole new way of seeing and living. Letting go of the 'I' that thinks it knows! Homeopathy has brought up so much for me and it is all in perfect timing. I just have done a lot of 'letting go' and watching and waiting. The homeopath I found by 'accident' and I have online 'Skype' consultations. In my heart the 'illness' began way before I got the Bacterial Meningitis. It was a disconnect from my very own heart. I have practised gratitude and accepting that everything is out of 'my' control. I do not know what anything is for, except that the real healing goes way deeper than the physical. When I looked back and saw the crazy life I was leading before I got sick, I wept for the lack of love and caring for myself. During the past year I have wept tears of amazing grace for learning to receive and the family and friends who cared for me in ways I was never able to accept in the past. I had to eat humble pie...not just a piece but the whole pie! Yes the headaches sucked sucked sucked! I learned to stop fighting them and accept them and love what they were doing for me - making me stop and go deeper into healing my heart. It's a work in progress and mostly I have learned to live one moment at a time. I see things differently now. I notice things that I was too busy in my silly mind to really see before. I SEE with my HEART like I never could have imagined. If homeopathy didnt work for you before, yes maybe your will feel called to try it again and maybe not. I consulted 3 different homeopaths for other health issues over a period of seven years with no success on the physical healing, but each time a big inner healing. It was all perfect for my journey. The Bowen therapy is not like Reiki or Cranio-sacral but it is a series of very gentle movements that physically shift the fascia (sheath that covers all the bodies organs, nerves, muscles and blood vessels). The fascia gets constricted over time with trauma and the Bowen releases it. It helped my headaches enormously! Anyway, I can only share with you my own journey. Take what you like and leave the rest! Listen to your own heart....stay present to the now moment, look from your heart and see with a new vision of wonder for the gift of life. Sending you endless love and blessings and may grace descend on you right NOW!

Thank you for sharing with me menchild. I have been very fortunate in my life, my family, my friends and my wonderful husband. My heart has always been full and very open. My mind and attitude to life has embraced the wonder of it all and I have always been mindful and lived fully in every moment. I do not know what lesson I could learn from this illness as I truly lived a careful, kind, curious and engaged life always. I already knew about people like Joe Dispenza and Anita Moorjani who open one's eyes to other ways of being and had already known all that they say, either through my own philosophical learnings or through my neuroscience research work. Who knows why things happen to us? All we can do is deal with them with grace and humility. I am so pleased that you've found ways to feel better and that it has opened up your life to other ways of being that give you true contentment. Shan x

Hello again menchild, All day today one sentence that you wrote to me has resonated repeatedly. Your words were so comforting in your caring acceptance that this dreadful thing has happened to me (as it did to you). The words you wrote that really struck me are these; '......letting my heart open to a whole new way of seeing and living'. I have had a quiet day today, on my own all day for a change as my husband went out early and I purposely haven't seen any family or friends as I felt the need to be quietly on my own to focus on what you had said. I have spent these seven and a half years of pain thinking about how wonderful it will be to be back to my 'old' self, to be 'normal' again. Although I have accepted the pain and learnt to live with it over so many years, a part of me has always held onto the hope that this is not how I will have to always be. Your words have enlightened me. I must simply be. I must accept that perhaps I will never get back to my 'old' self, back to my lab and my patients and my research. The silly thing is that even if I'd continued with that life, if I hadn't had BM, I would still not be that same 'old' self!! Other things would have come in and out of my life to alter me. I am not that person anymore, regardless of the meningitis. I am thankful to you for those few words which will stay with me, I'm sure, as they've opened me up to understanding the acceptance of how I am in this constant pain-state is utterly different to acceptance of a new way of seeing and living. Thank you. love Shan x

Yes, that was my block - waiting for my ‘old’ self! So much peace in accepting that life is different now and I am perfectly imperfect! May Grace touch your heart ❤️ as you open to a new way of being. Stay quiet in your heart as you come to terms with this new way. Xo

Thank you so much menchild. You have really made a difference to my sense of self. I hope your healing journey continues well. Shan x

💕🙏 xoxo

Bupap for migraines/head pain.

Thank you Portage. I'll talk with my neurologist about Burpap.

I tried all medications, I tried botox and it changed my life..

Thank you for your reply amk2.

Where do they inject botox for head pain? How long post BM were you when you tried it? I'm heading towards eight years post-BM and haven't found anything to relieve the terrible pain. Does your doctor do the botox?

amk2
amk2 in reply to ShannanLouise

I had viral meningitis, and they couldn't figure the virus that caused it. they do the botox in the back, temple and front. yes my headspeacialist adminster the botox. i am now 8 months post meningitis, I have done two sessions of botox and they help me function, I qm also taking nortypteline and propranolol. I have headaches and migraines, chronic and intractable, all day everyday. and I have auras before my migraines. before meningitis I had no headaches, maybe one every couple of months and responds to ibuprofen. have u felt any improveent with ur headaches?

ShannanLouise
ShannanLouise in reply to amk2

Hello amk2. Thank you for your message. I'm sorry that you've had 8 months of pain with your head following VM.

In the first two or three years, there was no improvement in my head pain. I was unable to walk (had to go in a wheelchair) couldn't have any light or sound and couldn't bear vibration (like in a car). I pretty much lay still with my head propped on pillows for two years as I couldn't do anything else. In the fourth year I would occasionally have bouts of less pain and gradually managed to walk very short distances, from the kitchen to the gate and back. Over the following years I've improved so that I am now fine with light but sound is still very difficult so I can't be anywhere noisy or busy (no cafes or restaurants or loud people, no tv or movies or music). The pain now is bearable. I never had headaches at all prior to BM. It is horrifying how vulnerable we are and how something like meningitis can knock our life for six. You are very fortunate that you've been given a treatment that helps you during this 8 months. I wish you all the very best for your continued quick recovery and less pain. Shan x

There is life after BM. I am four years on. Acupuncture started easing my heads a year after the episode. Acupuncturists vary so much - I wonder if it might be worth trying again. As soon as they started to ease I started to feel that I could get over this wretched illness. I continued with pulsatile tinitus for another two years but even that has now gone. I have chronic rhinitis but that can be helped with medication. Another very strange after effect is that it affected the part of my brain that remembers numbers. I know this sounds bonkers but I used to be able to retain this information and now if I don't write down a date, a time, the number of people with Covid in the US (I know, I said it was bonkers) it gets mashed. This may be because I am expecting it to happen: I'd love to know if anyone else has had this. As I get older I forget names - but all my friends do this and it's somehow different.

Dear Shannan...... I do believe you will gind a solution. I know lockdown and all that goes with COVID must make your life so much more difficult, but try and change one small thing at a time - the time you go to bed, where you walk, get in touch with a friend you haven't seen for years. It's ridiculous to say don't pre empt your headaches, but just try and rejoice when you have a better day. I'm sorry, this sounds all a bit patronising. My heart goes out to you. I wish you a better future.

Hello Heather, Thank you for your thoughts. I'm sorry to hear you've had four years of pain. It is so tough when it lasts for years. I know what you mean about pre-empting the headaches however that doesn't apply to me as the pain in my head is always there. It does get slightly better sometimes, but there is never a moment when I am without pain. After my third or fourth year, I did improve quite a bit and had the occasional hour or two without pain, but that went downhill again for no real reason and the fifth, sixth and seventh years have all been full of pain. My pulsatile tinnitus comes and goes. I can go for a year or more without it, then it comes back. Thank you for your caring and concern. I have not had any issues with my memory or for numbers although I couldn't speak for a long time as my mouth wouldn't work properly. That is resolved now thank goodness. I might give acupuncture another try when the lockdown eases and it feels safer to do those sort of things. Take good care of yourself and I am sure that you will continue to improve. Shan xx

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