Hi everyone! I have a question...I am 2 years post BM recovery and it's been a tough road, however I'm now considering going away on holiday and would like to know whether anyone has travelled after having meningitis (bacterial if possible)?
I still get a woozy feeling when I walk around and would like to know if anyone else still gets that and/or how they recovered from it.
Also, was anyone prescribed medication to help with tightness in their heads like Nortriptyline? Even though it's an anti depressant I was told it can assist with muscle relaxing in the scalp.
Any help would be greatly appreciated! Thanks
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Sab01
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I had BM and also still have a lot of side effects... the first time i went away i was very apprehensive as i have off and on vertigo, my ear drum burst so i have balance issues, and a lot of confusion, forgetfulness, weird sensations and mastoid pain etc so i made sure i had water on hand, didn’t drink alcohol, tried to stay calm as much as i was anxious 😂🙈 had painkillers on hand and it wasn’t to bad; oh and made sure i had sweets constantly so my ears wouldn’t pop! I was again apprehensive about the flight back but it wasn’t so bad. If anything i have more problems when i am there with a low immune system and picking things up like
utis/kidney infectons/heat exhaustion or sun stroke. Just be precautious and manage things and i am sure you will be good! 🤗
Hi Stace30, I hope you're well and thanks for your reply. It's encouraging to hear that your flight went ok. I also think I'll get anxious too!
Would you recommend having some sweets to hand? How did this help with ears popping, I've not heard about this? My ears sometimes even pop now without travel!
As soon as the flight started to take off i sucked boiled sweets. This help to distract me with any anxiety and distract me from any head weirdness that we get and also the motion of doing this stopped any pressure in my head/ears.🤗
I am also had bacterial meningitis 3 years ago & had tightness around the bczck of my head and dizziness. Nortriptyline did help this. I was also concerned about traveling. I drove several hours to go see my grandson & it was the best trip I could haven taken! I was finally able to relax & stress free. Don't let your fear stop you from living your life. Enjoy yourself, rest & take it easy.
Hi Runnerma, thanks so much for your response. It's so encouraging to hear about that. Sounds like you're/were in the same boat as me. I try not to let this setback from stopping me living my life like I used to, but my head and the tightness seems to be the main issue!
Would you say that your head is now back to normal or as normal as it can be after taking the medication?
Also what other things did you try to help with this? Any help would be much appreciated. 😊😊
I am still taking the nortriptyline & have had no side effects but it helps with the short fuse that I have. Also I have tried craniosacral therapy & it was the first time that the tightness went away. It has come back with stress & I can't afford monthly sessions due to $. I would recommend it though. Have a good time & enjoy yourself!
Hi, my daughter had Men B with septicaemia 15 months ago when she was 22.
She first travelled only 2 months after, flying from the Uk to Finland. She was in a wheelchair then and didn't do much for the week she was there, but the experience and challenge really helped her mentally. (She was visiting friends and family of her boyfriend).
She's just been again for 2 weeks, this time she's much stronger. She did find it tiring and gets awful back, neck and leg pain, but had a fantastic time.
I think having these small challenges really does help her, physically and mentally. They show her that, yes, it's going to be tough but she can cope and benefit from them.
Hi MinkyD, thank you for your response. I'm so happy to hear about your daughter and her recovery.
I think I need to challenge myself but don't want to push myself too much. Are you aware of any issues she had whilst flying such as headaches or pressure etc as that's what's worrying me?
Also, when your daughter went this time around, did she find the queuing at the airport for security checks ok to handle? Did she use a wheelchair the current time too?
I don't think she had any problems with pressure headaches whilst flying.
This time she didn't use the wheelchair. She has got much stronger over the last few months. She still has to pace herself and know when to rest. If she gets a virus, like a cold, then that really hits her hard, so she tries to stay away from those.
Queuing can be tiring, but she tends to find somewhere to sit, even if it's on her suitcase or the floor.
She plans things out really well too and researches places before she goes to see what facilities are like.
I can understand your worries, but hope you manage to travel and have a good time.
I had BM in April 2017 and my husband and I had a trip planned to France ( we live in New York) . I was in the hospital for two weeks and had a pic line at home for three additional weeks . Fours days after the pic line was taken out , we went on our three week journey thru France.
I asked all my Drs and they said it was ok to go but rest and take your medical records with you . I ordered a wheel chair at the airports as the walk in international airports are very long . I was worried about flying also because my mastoid was inflamed and I became totally deaf in my left ear . The flights were fine and the airports and airlines were so accommodating. We rested when I needed to and made sure to get a good nights sleep . I was dealing with what I call " the swollen brain issue" . Noise was very difficult , balance was very difficult , managing my new hearing in a foreign country , well you can imagine what that was like ! Our friends and family thought we were crazy for going. The end result was that I am so glad we went ! My mind needed to relax and focus on something else besides my nearly fatal disease . I think that all the obstacles I confronted , turned out to be Physical therapy . Maneuvering cobble stones , winding staircases , helping my husband with driving instructions , walking three to five miles a day , trying to understand a language that was not familiar to me . All of it , aided in my healing . Believe me , it wasn't easy . My head hurt with pressure .
I had the tightness in my head and still do when I get even the slightest upset or confused . It is getting lighter as time goes by. If you are able to go , please give your self the gift of leaving this disease behind you and go and have fun . Live the life that was given to you !
Hi SusieNY, firstly you live in my all time favourite city! I love it there. I'm from London. And thank you so much for your response. I'm so relieved and happy to hear about your experience and your successful trip.
I think I'm worried about the pressure in my head mostly. But hopefully with rest, it should be ok fingers crossed. It's been over 2 years now so yes you're right I need to stop fear overtaking my life.
I love London ! It takes courage to get up and go after all that you have gone thru. But have faith that you will be fine. Trust in God and yourself. By now, I'm sure you have learned how to manage the tightness in the brain like most of us have too. Let us know how the trip went when you return Bon Voyage ✈️
I’m going on 6.5 years after the incident of having the bacterial meningitis. I still get migraines and headaches often but it’s a part of life. You manage it and you manage your life energy so that you can do more when you’re able to. But. After two years, you have healed as much as you can, so then it’s about energy and expectation management.
You can use planes, trains, ships, cars, trucks or other conveyor of people to travel around the world in. You just have to rest before and during and manage your experience to not be overwhelmed by life.
Learn to val sal va, not sure about how to spell it, but it is moving the eustation tubes in your throat and ears by taking a deep breath, plugging your nose, and then trying to blow your nose while it’s blocked. You should feel the ears on both sides popping and maybe a sense of wind blowing out of your ears. If you are able to do it, congrats! You can do air travel without needing gum or candy to help you move your jaw to stimulate the val sal va thingy and can make your ears adjust to various pressure patterns on your own.
As for others travel types, it’s like the show Amazing Race, but given a lag time built in to your schedule for getting through airports or train stations. It’s better to have too much time for reading or crafting, than to miss a connection because of your body not agreeing with the time table you had been expected to use.
Hi maineknitter, your reply is so good to hear. You've sort of made me feel a lot more better and more excited about the things I should be doing. I know, after two years I'm guessing I'm done with the "still healing" phase.
I just need to get back to normal, as much as I can I guess. You're very positive and I like that - thanks!
I just need to plan appropriately and wisely.
Just a quick question, did you or do you experience pressure or a tightness in your head?
Thank you for the compliment! I'm sort of surprised to hear that you think I'm positive. Back when I was at your point in recovery, I was a very angry and frustrated person. I was still, and am still, looking for a good medicine mix for me, and, had expected to be fully functional and absolutely back to normal and at presickness levels of health and abilities, and, I wasn't and was having a hard time accepting life as it was at that time, which is actually pretty similar to how it is now, just I now accept it and work with it more than I did.
I also have a dog now, and, take him for daily walks, which helps with energy management, getting exercise, and petting him helps with blood pressure reduction and brings unconditional love into my life. Total acceptance is what he has helped to teach me.
I have had a partner through this time and we have had a great relationship, but, we are both human, and, while loving of each other, communication hasn't always been great. Part of that is because of the disconnect in my brain that the meningitis caused that made my processing speed much slower than it used to be. I had to recognize that, and then ask for help and go through speech therapy, and then, now, I have to ask for clarity and work on getting clear communication between us, even if it means boring conversations because we have to say the same things over a few times.
Going through physical therapy helped me learn how to know my physical limits and how to get my body to do what I wanted it to do. We worked a lot on my core strength, like walking and using recumbent bicycles.
Going through occupational therapy helped me learn how to adapt things to figure out how to get from knowing what I wanted to do and doing it. Like using a timer to help me know that time has passed when working on a long project, or using a calendar to track what I did do in a day as well as what appointments are in a day upcoming.
Asking your doctor for a referral to these services is how to get into these services.
But yes, this is what I've heard from nearly every single person who's been through what we have - you have to adapt your life slightly and can't stop doing what you love.
I'm guessing by your username (Maine), you're based in the states? I'm in the UK.
Thanks so much for your responses and you sure do sound positive and that's the way we all should be.
I had BM 27 years ago and have travelled to quite a few countries since then and been OK. I was so glad to be alive to do this and so appreciated it more, and will help to stop morbid thoughts. Best have a travel companion at first to assist if you feel unwell but don't worry too much good luck Sorba.
Hi Sorba, thanks for the message. It's very refreshing and comforting to hear that. I like the positive attitude you have towards it and I will def be taking some of that on board with me! Thank you 👍
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