Meningitis Now
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Bacterial Meningitis

Hello

I’m wondering if anybody can help me or offer me any words of advice?

I’m a 42 year old active male, on the evening of 19th February I had a mild headache. But woke early hours 20th with a server headache, then started being sick. I thought I’d got a migraine and stayed in bed until lunchtine. When I asked my wife for help, thought my head was going to explode.

So took me straight down to my GP, who was excellent. She knew I wasn’t right and thought I’d got a bleed on the brain and organised a brain scan at the hospital.

My wife rushed me down there, but by this time my eyes were hurting and light sensitive, and my neck was really stiff.

I had a brain scan and then a lumbar puncher, to take fluid off my spine.

I was then told that I had bacterial meningitis, I was put straight in quarantine. I laid in my room dark room, no lights or curtains open as my eyes hurt a lot. I was sick for 5 days and I ate nothing, it was awful. The pain in my head was the worst pain I’d ever had.

I was in quarantine a week then placed on a ward for a second week. I’ve been out of hospital for nearly 3 weeks and I’m still getting headaches.

And I’m really tired and sleep for around 12 hours a night and about 2-4 hours around lunchtime.

Are these both normal after bacterial meningitis?

The doctors say the headaches will just fade, but I’m just finding it very frustrating and want to feel better.

Has anybody had any similar experiences? What was your recovery time and how long you feel ill for?

Any help greatly received thanks

Andrew

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Hi Andrew

It sounds as though you've had an awful few weeks. I too had BM so can empathise with you. My best advice is to phone the Meningitis Now Helpline and have a chat with them. They will be able to reassure you and offer you practical advice and help too.

Meningitis is not easy to recover from. It hits hard and can take many months before you will feel "normal" again. Listen to your body, rest when you need to rest, and, hopefully, life will begin to settle down for you.

Best wishes for a full recovery from this totally debilitating disease

BV

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Thank you BV for your reply. Think I’m just finding it hard to rest, and equally having not much energy. All I seem to do is sleep.

Work have been very good and told me just to take as long as I need.

Thanks again for your kind message.

Andrew

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Hi Andrew, like the other response, I too had BM just over 2 years ago. I was an active and healthy 27 year old at the time and it was a shock and fight to me what had happened! It takes time, that's all I can say. Everyone and every body is different so if even if someone took a couple months to feel normal, it could the other person a year or so. Just take it easy and rest is key. You'll be ok. You've gotten over the worst bit and you've survived! And headaches will get better, again over time. Mine did. At the moment your brain is readjusting to what major bashing it's had. Just relax and the sleep is normal from all the people I've spoken to.. Your body's tired... 👍

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Hello

Thank you for your kind message, glad I’m over the worst and survived. Just thinking about how serious it is, just glad we caught it early.

I have quiet a busy life with work and home life. Work have been very understanding which I’m glad about , as there not rushing me to come back.

After reading your reply and websites it varies on recovery times. Think I just thought I’d be back at work after a few weeks, but this is not going to be the case.

How do you feel now?

Over the weekend I think I was giving myself a hard time about being off work. And struggling in thinking of what just happened to me.

Thanks again for your message, speak soon

Andrew

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Hi Andrew, yes I felt the same way too. My neurologist at the hospital I was in actually told me I'd be feeling better after about 3 months however I was not great at that stage at all. So, everybody's recovery time does vary depending on what they've been through and their bodies I guess.

I'm much better now but I guess you just learn to deal with some of the stuff that happens and still hope with time, it may ease off. I get pressure feelings in my head still to this day but I know what to do and what not to do so you just listen to your body.

My work were very understanding too which is very comforting and always helps!

I'm sure things will start to feel a little more closer to normal soon for you too. Take a while but it's worth it 👍 However I still am not doing things I used to do before such as hiking and gym as I still feel my body can't hack it, just yet. Maybe soon though 🙏🏼

This site was really helpful to me when I feel feeling down and lost as we all have been through the same thing and can help eachother out!

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Morning

Just wondering how your recovery going?

It’s going ok for me, still having headaches and tired. But do feel a lot better and stronger, just learning not to do to much and if I do I just sleep and take the next day steady. I’m managing short walks out with the dogs, it’s really hilly where I live so I just take it slowly.

I’ve spoken o Christine Hughes at meningitis now who’s helped me with some question and worries.

I hope your well.

Andrew

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Hi Andrew, hope all is well. My recovery is getting better day by day 🙏🏼 however I still have some days which are better than others. Even now.

I'm assuming you've now been out of hospital about 2 months or so? I'd say the fact you're walking outside is excellent, as I wasn't at that stage! Be proud of that.

I'm sure your wife is extremely supportive and thankful for your recovery too. As I'm sure you'll get to notice, this takes time and without sounding like a negative nancy, we may not even ever get back to 100%.

Oh and also, random thought, but I recently saw a show called Trust me I'm a Doctor on BBC and it covered meningitis and I found it quite interesting. Not sure if you've caught that show. Maybe have a look?

Take care

Sabina

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Evening Sabina

Sorry for my late reply, I started to write them forgot to send.

I’m now 10 weeks yesterday of being diagnosed, I’m proud of being out and about not trying not too do too much though, as I’m finding it messes me up for the next day.

Yes my wife is very supportive, and we’ve got a break away planned this Friday for a week. So hopefully some relaxation and a change of scenery will help.

I’ve been back to the doctors today and signed me off until end of May now. A bit disappointing but was expecting it really, still getting daily headaches.

I’m also booked in for a hearing test on the 14th May, and been refereed back to hospital too see neurologist.

I’ll try and check out trust me I’m a doctor, thank you.

Hope your feeling a bit better? Hope to hear from you soon

Andrew

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I had bacterial menningitis 2 years ago at 45 For me it took 7 months to get back to anything near normal. Take each day as it comes and slowly brings will return. Your brain has been in a big fight and will take time to heal. Sleeping is a good help. Your body will be weak and l found asking helped no end in the recovery.

I still get words mixed up and struggle to remember simple things. Small price to pay to Still be here.

Take care

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Hello David

Thanks you for you reply, and letting me know of your experience, how are you 2 years on?

I’m sleeping a lot so hopefully I’ll feel better soon. I’m still getting headaches but no way near as bad as when I first went into hospital.

What did you ask for help with?

Thanks

Andrew

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From being in hospital for 3 Weeks and then at home recieving acute care daily for another 6 Weeks l can only say that 2 years on l am amazed how things are so different.

The head aches do fade and the fuzziness does go too. The drugs you will have recieved may give side effects.

I returned To work after 6 months. I am back full time now at work.

I remember leaving hospital thinking l would be OK after 4 or 5 Weeks. It took alot longer. I put all of My effort into getting well. I Remember going out and then only hours later having no memory of where l had been.

I am celebrating a year from of when l baffled my doctors and went to climb a volcano in Java. I remember it being a moment at the summit where l think l first realised how ill l was and how l was going to make the most of being better.

I still get moments of confusion and forgetfulness. No headaches and pretty much everything is back to normal.

Remember the loved ones around you. They will have gone through hell too. It is too easy to show your frustrations at them. Explain to them how you feel. From The outside you will look fine. So they may think you are better than you are.

I had little patience in things that l could not do as easily as l did before.

Take things slowly. Rushing your recovery will only lead to getting tired. Your body Will slow you down.

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Thanks David

Sounds like you’ve had it bad, so glad your back at work full time now.

And great stuff on the volcano climb, think I’m just frustrated really. I was told by a doctor from hospital when I left that I’d need 2 weeks off to start with from work. I took this as I could be better in 2 weeks.

I’ve got a very active job and really can’t see myself keeping up with everything at the moment.

My wife is very supportive and helping me a lot, and my little boy is being so good. I’m just glad that it was caught and diagnosed quickly.

Will be taking it easy, think it’s going to take a while. Thanks for your messages, keep in touch

Andrew

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It will take as long as it takes. Pushing yourself will just send u backwards. l pushed myself and found myself in bed for days after regretting it. Your body will just say no. Gentle steps.

Everyone is different but find a way to listen to your body.

l had a nerologist that told me in hospital my revovery would be 6 months to a year. Even though l thought l knew better he was right.

l remember driving for the first time. Scared me senseless. l refused to drive again until l felt much stronger. Too many variables and brain just said no.

Love your family. Do not let the frustrations be negative. Talk to your doctor about your recovery. They can be a great source of help.

We are the lucky ones who get to see another day. Take care

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Yes feel very lucky in surviving, I was told because of my age, fitness and catching it early was a big help.

Yes going to take it easy and work will have to wait. Going to contact meningitis now for some information. Thanks again

Andrew

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Hi Andrew. I had the same experience a year before you so have just completed 12 months on. What you are experiencing sounds very like the pattern I experienced. After three months when I could no longer cope with the dizziness and headaches I had four sessions of acupuncture and to my huge relief the headaches disappeared. They sometimes come back but mostly when I am stressed. Try and be kind to yourself; you have been VERY ill (I very nearly died) and any brain injury mustn't be taken lightly. There are still 'gaps' in my memory, recall etc. I used to be a good mathematician, for instance, but I find numbers just sort of swim. I also have residual problems with ears and eyes but nothing too serious. To be honest the worst aspect of it all is that the doctors just sort of pat you on the head and say there there. They do NOT in my experience understand how meningitis leaves you feeling so do use this forum. It's given me great strength. Very best of luck. heather

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Hello Heather

Thanks for your kind reply in sharing your story.

I’m finding that my headache gets worse when I’m thinking about something I need to do, or even when work contacts me for an update of how I am.

I do remember when in hospital I was forget things, like stopping mid sentence forgetting what I was going to say. And my family said I was talking very slowly with larger than normal pauses between words. But that seems to be back to normal now.

How are you feeling now?

What about your eyes and ears now?

My doctors are very understanding and I think they’ve done some research in my condition. I’ve had a few good chats with them and it was them that found this forum. And It was a doctor at my surgery that I owe a lot too for spotting I was very ill.

I’m going to use this site to get more information, thanks again heather.

Andrew

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What a lovely lot of helpful replies you have had, Andrew. I am sure you have taken heart from them. It does seem that all of us previous sufferers say be kind to yourself and don't expect too much too soon. I am SO pleased to hear you have had good medical support. It will make all the difference feeling validated to feel crap some of the time! My headaches always start back with any stressful situation, my eyes sort of come and go if that makes sense: perhaps they react to my general health and well being. As for my ears, well I've learned to live with the dizziness, tinnitus and general congested feeling. I have had an MRI scan to make sure there isn't a tumour and the consultant just suggested that I used mindfulness, soothing music or (as I do) the radio at night and some other self help remedies. The saddest thing for me is I can no longer sing as I can't hear myself. But on a scale of 1 to 10 a year on I would say I was at 8 so can't be bad. hang on in. Consider acupuncture and try and keep of antidepressants. I find they send me crazy......

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Morning heather

Just thought I’d write to see how you are and feeling now?

I’m better than I was but stilll having daily headaches and tiredness, I’m definitely getting stronger but also not doing too much and knowing my limits.

Spoke to Christine at meningitis now for a good chat and she’s helped me with a few questions and thing that we’re bothering me.

I hope your well,

Andrew

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Hello Andrew,

Sorry to read what you have been through, it really is tough but it is very early days in your recovery. As previous people have said rest is key and really listening to your body, and mind, not pushing yourself too hard thinking you will speed things up. I have been guilty of that, out of frustration and desperation to feel back to myself again, but all I did was set myself back a bit. It is counterproductive I have learnt the hard way.

I was diagnosed with Bacterial Meningitis mid Dec last year and so 3 months into recovering now. I have definitely made improvements but they have been very gradual to the point where I often didn’t feel like I was improving at all, but then when reflecting on how I was a month previous I could then see that I had made progress.

When I left hospital I was told like many that a few weeks and I would be feeling better, one nurse said anything from 6 weeks to 6 months and so I latched into the 6 weeks thinking then I would be back to functioning and it’s taken a long time for me to readjust my thinking on that. Of course I am sure there are people who recover quicker than others but it seems for many it takes some time.

Some days are better than others, I am learning not to overdo things on those days otherwise I am exhausted afterwards. I still have dizziness and balance issues, head and neck pain and some visual disturbances and exhaustion often. I started driving again 3 weeks ago and can manage short distances, I couldn’t drive before as any movement of my head worsened the dizziness and woozy feeling.

I hope you find support from here I certainly have, just knowing you aren’t alone and others understand really helps I find.

Meningitis Now has been a good resource and can offer support and help with complementary therapies too.

I wish you well in your recovery

Keely

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Hello Keely

Thank you for your kind reply, and I’m sorry what you have been through and still going through.

It’s good to hear of others who have experienced what I’ve been through and going through.

I do need to relax and try not too worry, I thought that after I left hospital I would get better quickly. When I left hospital a doctor told me that I’d need at least 2 weeks off work to start with, so I took that I wouldn’t be off that long.

I’m a lot better than when I came out of hospital, but just finding it all frustrating, getting headache everyday and really really tired. I started driving last week, but really not gone that far. Probably only five mile s to my nearest town, and was tired afterwards.

I’m getting a bit short tempered with the simplest of tasks, I’m not feeling dizzy like yourself but just tired and need to sleep about 2-4hours around lunch time. Then I’ll sleep all through the night.

I’m sure I will find support on here and I’ve already received messages from other kind survivors who’ve experienced what I have.

Thanks again, keep in touch with your recovery.

Andrew

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Morning Keely

Just wondering how your recovery going ? Going ok here just slow, still having daily headaches and tiredness. But feeling better each day/week. Just learning not to do too much.

Hope your well

Andrew

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Hello Andrew,

Good to hear from you funnily enough I thought of messaging you the other day to see how you were getting on, but then sidetracked with something and forgot! That’s one thing I have found my memory to be very much affected since meningitis, it’s like I have a block and once I have forgotten something it never comes back! I have taken to writing literally everything on bits of paper stuck on the wall in my kitchen to remind myself. The minute I think of something I have to write it otherwise it’s gone! It’s become a joking point with my kids but deep down it does trouble me as it’s not improving. I forget to tell people things, I forget what I’m talking about mid sentence, where I’m going. My husband jokes that I should have my address written on a piece of paper round my neck when I go out! Still a small price to pay for recovery I am very fortunate.

Am glad to hear you are making slow steady progress tho it’s actually still relatively early days for you so don’t push yourself too hard, I learnt that the hard way, it didn’t make me recover any quicker just exhausted me further. Are you back working? Can you manage it ok?

I am finally at a point where dizziness is much less frequent and intense certainly more manageable, still get some shocking headaches but less neck pain and my energy levels have increased. It’s been 4 months and I am finally and thankfully starting to feel more like my old self! I can walk for longer distances with my dog now which helps me on an emotional level too it’s like my therapy.

Do let me know how you are doing it’s good to talk to someone as it’s hard for those who’ve not been through it to really understand.

Keely

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Hello Keely

Sorry I forgot to reply to your message.

I’m 10 weeks yesterday of being diagnosed, I’m feeling a lot better thanks, not walking too far with the dogs. I feel like I’ve got a bit more energy but around half way around my 30 minute walk a don’t feel that great so head home.

My memory isn’t that great either, I can just completely forget what I’m saying mid sentence and it’s just gone. And sometime it’s like I’ve got a stutter and can remember words, a bit frustrating.

No I’m not back at work yet, I’ve spoken with my colleagues a bit and text all the time. But would never be able to do my job at the moment, it’s pretty full on and can’t teally be off top form.

I’ve got a lot of training to catch up with before I’m back into it but it can wait for a bit.

I’ve been to doctors again today and signed me off for another month, and I’ve got a hearing test 14th May. And he’s contacted hospital for a follow up appointment to see neurologist.

Have you had hearing test? And a follow up appointment? I’ve been told my Christine from meningitis now that I need one.

What about your work? Are they being understanding?

Hope to hear from you soon, we’re off on holiday Friday. So really looking forward to that, will be nice to get away.

Speak soon, please keep in touch. I’ll reply quicker next time.

Andrew

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Morning Keely

Just thought I’d texted to see how your feeling?

All ok here, back at work on my first full week. Feeling ok, just finding it tiring.

Ax

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Hi Andrew,

So glad to hear you are back at work, sounds like you are getting back on track. Am sure you will be finding it tiring though. I think you’ve done so well!

I started back working a couple of months ago, just gradually, I work for myself so have been able to go gently. I have been feeling absolutely shattered though lately, completely fatigued. Went to GP in the end, they did bloods all came back fine, so I’m not sure if it is mayb remnants from the meningitis? I was going along thinking I had completely recovered but perhaps this what I will be left with? That and my shocking short term memory, am learning to live with that though. Small prices to pay for getting through it all though I think.

Have had loads of other things happening in my life, bereavement and children been ill, now I’ve also got a disc protrusion which has been so painful! Been struggling to walk. Am just praying it settles down. Would just like a period of peace and wellness for a little bit!

Hope you stay well and keep the good progress

All the best

Keely

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Dear Keely

Good to hear that your doing ok, but sorry about bereavement and children being ill.

Yeah it’s a good idea to take it easy to start with. I’ve done a few days at work to catch up on training in the last few weeks. I work for the fire service as a firefighter and work didn’t want me back until I’d had a least 2 weeks headache free.

I am finding it tiring during my shift as they are quiet long 11 hour days/13 hour nights. I’ve still not gone a long walk with my dogs, but think I’ll be ok.

I hope you continue to get better, stronger and less tired. But like you say it’s good even to be here as it could have been a lot worse.

Keep in touch, nice to hear from you

Andrew x

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Hi Andrew,

Goodness am sure you need to be very fit indeed to do the job you do (and brave!) How long have you been working for the fire service? Sounds like they’ve been quite supportive in terms of your return to working.

I used to work in nursing so remember very well the long shifts and it’s tough! Especially when you have a long run of them. I used to find nights really hard to get through, especially around 4am my body was like ‘ok can I sleep now’!

I work as a massage therapist now, I work for myself and also for a charity doing treatments for people with long term and serious illnesses, ie cancer.

I love the work and it has been really good to get back into it.

Anyway waffling on again! Take care and will keep in touch,

Keely 😊

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Hi Andrew, I am so sorry to hear this. I can offer the advise of getting cranio-sacral massage. My husband had VM and this helped him. The massage helps the CSF move more freely. My very best to you. Drink lots of water and rest as much as you can!

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Help,

Thank you for you kind reply I will look into CS massage . How is your husband now?

I’m drinking loads of water and got no problems sleeping. Can manage to sleep through the night and 2-4 hours in day.

Thanks again

Andrew

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so glad you are having no problem sleeping. Thank you for asking about my husband. The first week out of the hospital was killer, then after probably 2-3 months of coming back to life. Now, 5 months after, 100% back to normal! I wish the same for you!!

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That’s sounds good about your husband, the more I talk to people I’m realizing it’s going to take months rather than weeks.

My first week in hospital was the worst ever, the second was better as I was back on a ward with other people and not shut away.

My first week out of hospital was really weird, and didn’t go too well. Headache was really bad and couldn’t do anything without being tired.

Why was your first week a killer?

I’m sure I’ll be better soon thanks

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headache and fatigue!

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Same here, thanks again.

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Andrew,

I hope this finds you feeling better! I had very similar symptoms when I was diagnosed with bacterial meningitis in Dec 2015. I was finally admitted to hospital after 3 trips to the ER and the last one I had seizures due to the high fever. I was awake but do not remember 4 days of my life. As I antibiotics started working, I started to recover. Like you, I slept about 12 hrs a day and most of the time my husband would wake me up. Still at 2+ years after meningitis, I require a lot of sleep. If you are still having the headaches you need to get treatment. Try to avoid getting frustrated and stressed, it only makes things worse. Everyone is different in their recovery but it does take awhile. Reach out to groups like Meningitis Now. We are here to support you as well. Take care.

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Thank you for your reply and sharing your story what you’ve been through.

I’m sorry you had 3 trips to ER to diagnose Bacterial meningitis, I was really lucky that I was sent down by my GP believing I’d got a bleed on the brain, straight to hospital for a brain scan.

But then everything after that happened very quickly, had loads more tests, then I was in quarantine for a week on the dark.

Yes my wife is waking me up if I’m sleeping more than 4 hours a day, so at least I can eat something as I’m easily missing meals. There is nothing wrong With my appetite it’s just that I’m missing some meals.

How are you feeling other than you needing a lot of sleep?

I’m still Having headaches, and doctors have prescribed me some more oramorph and paracetamol. And a lot of time off work, but other than that they said just see how I feel.

They have been very good and spoken a lot about my I’ll ess and said it will take a long time to get back to my normal self.

I will contact meningitis now, as I’ve ready read a lot of other survivors experiences.

Thanks again for your message

Andrew

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Andrew, I am truly sorry you are going through this. I am well over 10 years of 24 hour a day migraines. I was very lucky that my GP sent me to a pain specialist that has helped me along this long road. I take high dose morphine, and would not have a life without the "opioid". I know people are going to look down on me because I use the dreaded opioid. I have learned how to adjust my own dose to my own needs. Before I got on morphine I was really thinking about killing myself. I am a combat Vet and have over 40 clandestine operations. I am 72 and am able to live a very normal life due to the help of the morphine. Pain meds are there for a reason. They ever my life. If the pain continues GET HELP FOR IT.

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Thanks for your message. It’s good that you can control your pain.

After a 10 year headache you deserve a break, thanks for your message.

Andrew

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I was prescribed Sumatriptan 100mg for severe headaches, Excedrin Migraine tabs (mix of Tylenol, aspirin & caffeine) for milder headaches & taking Amitriptyline daily. My headaches are very rarely severe at this point. I don't have to rely on opioids & told by my doctor to avoid Tylenol & to cut down on salt intake. My headaches now are "tightness" around the back of my head mostly & I take over the counter med & lay down. I also have tried Craniosacral massage & that also helps. Hope you find what works for you!

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I was sent home from hospital with oramorph, tramadol and paracetamol. I found tramadol had no effect on the headaches, so I’m just taking the other 2 which is what I was taking in hospital.

Yes someone else has mentioned a massage as well, i will try that.

Thanks

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Andrew, one more thing. You need to make yourself stay busy. I lift weights 90 minutes 6 days a week. I will be 72 in July and I practice karate everyday. I am also a ham, AI4KY. The key is stay busy. And may G-D Bless You. Shalom

Packard

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Morning Packard

I’m trying to keep busy but at the moment I get tired very quickly , I’m managing a short walk at the moment , it’s nice to be out walking with my family. I usually go in the gym and like to run, but just don’t feel like it at the moment but I’m sure as I get better i will do more.

You sound very busy. Ham and A14KY? Sorry don’t understand.

Thank you for your kind message

Andrew

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Sorry it took so long to reply. A Ham is an Amateur Radio Operator. I talk with people all over the world. We also provide communications in times of Desasters. If you go to QRZ on the web and in the call sign search type in AI4KY you will find me. AI4KY is my license. Good luck and stay busy.

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That’s ok thanks for your reply, I’ll check QRZ and look you up.

Thanks

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And I don't think I told you my headaches started with BM

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I'm 6mths on from BM. Was in hospital for 2mths. Had to learn to walk again. It is slow progress, definitely don't push yourself, listen to your body and pace yourself. The constant headaches and dizziness pass but will come back and bite you if you do too much...

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Hello

Thanks for your reply, 2 months in hospital and learning to walk again , you’ve really had it bad. Hope your feeling ok now?

Listening to all reply’s on here, talking it easy is the best medicine.

When I left hospital no one seemed to know how long I should have off work, or about the on going headaches.

I was just sort of let out of hospital and told to go to doctors if I don’t feel well again.

I know now that being really tired and the headaches are still normal in my recovery.

Thanks again for you reply

Andrew

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We will get there, it just takes time and the amount of time needed is individual to each of us.

We're here to help each other, just ask away.

I'm glad to be alive and I thank God for saving me.

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Hi Andrew I had BM about 27 years ago. The recovery time must vary from person to person but hopefully family and friends will be understanding about the tiredness etc. Sometimes you may have to force yourself to do some activities but rest afterwards, and believe it's worth it in the end. I've been able to work, travel, exercise but you have to know your limitations, all the best Sorba

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You describe exactly how I am feeling after 9 weeks, I was on IV antibiotics for two weeks and discharge however feel totally different to before, initially much better now the headaches and sleeping and tingling sensation down back of legs amongst other things, it's highly frustrating x

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Mornkng, thanks for your message. How are you feeling now?

I’m still having daily headaches and tiredness, but I’m able to take shortish walks and days out with my family, but if I have a busy day it really knocks me up for the next day.

I’ve spoken with Chris (Christine) Hughes from meningitis now, yesterday for about an hour and made me feel a bit better about what to expect.

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