Meningitis Now
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Ongoing headaches post VM

Help! Really seem to be struggling again with headaches post VM. I have periods of time where I cope really well, then others when I can't seem to keep on top of them, and they roll on for weeks at a time. I'm one year post diagnosis now. It's been recommended that I try long term treatment, Pregablin. Is there anyone out there that takes this drug and finds it successful?

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Hi. Have you tried Cranial Osteopathy? For me, it has been fabulous. She explained why I could still feel the pressure building up and i felt so much better even after the 1st session.

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I am post VM 1,5 years and still can't work or have a normal life because of my headaches, tiredness etc. I am taking amitriptyline and it worked the first 2 months but now im back to feeling crap.. how does cranial osteopathy work?

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Hi. It wasn't what I expected! The first session was the Osteopath with his hand at the bottom of my spine 'feeling for the flow' which was apparently non existent! But it helped by him just explaining to me why I felt so rubbish. I'd never had this explained to me in hospital (5 days) or by my GP post discharge. Like I say ive only had one session, I can keep you posted! x

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Thank you so much for your reply! I live in amsterdam i will look for a osteopath here!

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Hi. Sorry to hear that you are still struggling one year on. I'm just over 2 months, and yesterday I had my first session with a Cranial Osteopath. Finally someone who spoke some sense to me and explained exactly why I feel the way that I do. The foggy head, tiredness, ringing in the ears and dreadful memory. A simple sketch diagram of the brain, spine and meninghes and how it all works was so helpful. He said the the 'flow' to my brain was practically 0, hence why the headaches etc. I also had a Lumbar Puncture in hospital and there is also a connection to all the problems from having this done. I'm back in 1 week, and will possibly have to have 3-4 sessions and it will take time, but to actually have someone listen to you and understand how you are feeling made the world of difference. As you'll know, you look fine on the outside and people assume that you are better, when honestly you are a long way from it. Hope you feel better soon x

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Thanks for your replies! I did try cranial osteopathy around 5 months post VM. The guy I saw was excellent, really knew his stuff, and took time to explain why I was feeling like this. I did however find that it made my symptoms increase in the few days following the treatment. So much so, I had to take time off from work. After discussion with him, he felt it might have been too soon post diagnosis for me. He also said that most of his post meningitis patients were usually seen at least 1 year after. It might be worth giving it another try now though. I'm really pleased to hear that this treatment is giving a lot of positive results on here though. :-)

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I tried pregabalin for the ongoing migraine but it didn't suit me.. I had 5 hours of hallucinations and readmitted to hospital. The doctors couldn't take me off it straight away and it seemed to inhibit my neurology as I couldn't walk, speak, coordinate on it so I stopped taking it . I now take propanalol and have Botox injections into my head and neck. These sometimes help but I have had a lot of migraine this month. I think I am stuck with it and I am trying to learn to live with it and I take the least medication possible as it doesn't help but gives side effects . I am 3 years post VM.

Good luck with what you decide to do.

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Oh wow! Sorry to hear that you had such a bad reaction to this drug. Yes I have heard of similar side effects from Pregablin, which has worried me. I guess pain management is very much an individual thing as to what works best. I try as much as I can to avoid taking too much medication, but it's difficult when I need to carry on with work etc. Have heard the diath piercing can help!

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Hi again, I have had 2 daith piercings, one in each year. They worked immediately reducing the intensity of a constant severe migraine. Now the pain isn't so intense but I still get a lot of migraine. Acupuncture also helped to relieve the headache for a while. I also had CBT training to help me live with the pain. So now I enjoy the good days and put up with the bad ones. I also do exercise when I can which helps me to feel good.

Coming off medication such as amitriptyline and pregabalin was the best thing I did as I felt better, alert and less fatigued and the pain level didn't get worse if anything it improved. A good superfood diet seems to help too plus minimum alcohol .

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Thanks for your reply! I must admit, I'm not keen on the idea of long term meds. Thanks for the CBT idea. I have asked at work (I work for the NHS) and they will be running mindfulness courses shortly which I'll look to join in!

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It's been 18 months since my meningitis. The hospital didn't find out which type I had, but was in hospital for 2 weeks.

I've also suffered with long term headaches. I highly recommend cranial osteopath treatment. Although, I didn't begin sessions until about 6 months ago. I did experience treatment reactions initially, but have certainly benefitted since.

I have also started wearing tinted glasses which appear clear from the outside - I didn't wear glasses before, my eye test revealed the smallest of prescription. After explaining to the optician (at Boots) he suggested a coating on a pair of glasses.

They filter out some of the artificial light and reduce glare. These have certainly helped with the intensity of my headaches as my pupils don't seem to retract in the same way as they did pre meninigits. Night / evening driving is far less painful and work is more bearable under fake lights.

I hope you are able to find some relief from the relentless headaches.

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I wonder why they were not able to tell you the type of VM that you had suffered from. Mine eventually came through after being discharged from hospital. I also requested copies of my hospital notes too. This has been helpful to pass on to my neurologist.

I have also tried the coating on my glasses too, and agree that it really does help. Unfortunately much of my day is spent in front of a computer screen, so can also be a factor in increasing the likelihood of headaches.

I will give cranial osteopathy another try I think! Maybe it was a little too soon for me before. I've heard so many positive reports on it.

Wish you all the best with your continued recovery.

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The results from my lumbar puncture revealed meningitis, but at the time the Drs didn't know which type. They had already begun to treat for both viral and bacterial. I was told the sample had been sent to another lab for further testing and that it would take a while to find out any further details. By the time I was discharged, (after 2 weeks) they still didn't have any results.A GP I saw a couple of months later said it could have been bacterial due to the ongoing headaches, the neurologist said she thought it was viral. It's possible that the tests were inconclusive, the sample could have been spoiled or never tested at all. I guess I will never know!

I hope the cranial oestopath can relieve some of your headaches. Im now having one session every two weeks, which is great. It was tough at first but as my head and body began to respond, I found it was less tender.

Wishing you all the best.

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It's frustrating that they didn't get to the bottom of your diagnosis. I was also treated to both when I was admitted to hospital. I was also given an incorrect diagnosis of bacterial meningitis, then later confirmed it was viral.

I'll give cranial osteopathy another go! It seems like it brings a lot of positive results judging by the comments here.

Wish you all the best too.

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Although I had bacterial meningitis, I also have horrible headaches. I was taking amitriptylin but this stopped being so effective after a couple of years so I am trying topermate. I really don't like taking the meds but the migraines were really debilitating. These meds were recommended by my neurologists. I do use mindfulness techniques and would recommend them. I looked into cranial osteopathy but there isn't any practitioners near me. I think a lot of people who have meningitis seem to get headaches. It can be a bit of trial an error until you find something that works so keep talking to your doctor - I hope you have a sympathetic one. All the best Blim

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How long did you suffer from headache post BM ?

My brother is suffering from the same and gets headache and neck pains sometimes. He is under medication from last two months. But the headache comes back . I think it's normal with meningitis patients. Is there any other thing you know that can help?

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Sorry to hear about your brother. I am 5 years on from bacterial meningitis. Not getting over tired is really important for me. I do find pacing myself hard as I have a job and two children. Getting advice from the neurologist was key for me although it was a fight to get to see one. He really upped my meds - 4 x the dose my go had said. It also made feel like I wasn't making it all up. He said I have a brain injury and mental tiredness is just as challenging as physical tiredness. It is a lot better now but not gone away completely and I am still on all the meds.

Wish I could be more positive but I manage. And I am truly grateful to be here to see my children grow up as the BM could have had a different outcome.

Hope your brother finds away to manage the headaches.

Best wishes

Blim

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Thanks for your reply.

Can you tell me one thing that did you suffer from these kinds of headache, gastric problems, and neck pain after starting your medications?

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Hi there,

My headaches are much better with the meds but I still get a bad head about once a week rather that constantly. Never really had gastric problems except the sickness brought on by the migraines. Neck pain was also linked to the migraines and tension I think. It is very easy for things to get too much with a brain injury.

Hope that answers your question.

Best wishes

Blim

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Thanks for your reply .😊

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Hi I'm 3.5 yrs post VM & pretty much headache free, unless I'm sleep deprived or overstressed. I'm not a fan of medicines, so I see a chiropractor twice a month for an adjustment, have a very healthy diet, attend Pilates, Tai Chi & yoga classes . I still & probably will , always need to manage my VM as I have had relapses , but I feel like I'm finally regaining my energy level, nervous system & brain function once again. Make yourself important , & try to get plenty of sleep! 🙏

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Look into trying this! One a day. See how you feel about it and maybe discuss with your doctor but it seemed to help me more than most things! Good luck and prayers! amazon.com/gp/aw/d/B00014DM...

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Thank you! It's definitely worth a try. I've also heard that lysine supplements are very useful, especially if VM was caused from one of the herpes viruses!

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Have not tried that supplement but the NAC did seem to help. Also, do you use any essential oils? Peppermint oil on my temples also seems to help some some days! Plus it's all natural so either way it's worth a try!

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I have ongoing headaches since VM. My neurologist has diagnosed chronic locked in migraine for which he prescribed propanalol and Botox injections. Pregabalin did not suit me nor help at all. I felt so much better for not taking it. Xx

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