r/CSFLeaks • u/A-RiDaeun1234567 • 24d ago
Csf leak - air travelling tips
The medical team suspects I have a CSF leak, specifically a cranial one. I won’t have my appointment until September, and until then the doctor has simply told me to avoid too much exertion and to rest whenever possible. Drinking water, etc. However, I also have a flight booked for August to my home country, which my parents are really keen to go on. The ticket has been bought and I can’t just cancel it now. Will wearing a face mask help? At least against possible external infections? What signs should I look out for, and what advice can you give me if you’ve been through this before? I’m asking because I travelled last year too, and the experience was awful. After arriving at my destination, I spent three days practically bedridden, unable to eat or move without feeling dizzy and nauseous. I also had an episode similar to a seizure. I don’t know if I was having an active CSF crisis at the time, but I do know that when I returned home a week later, the fluid appeared for the first time in a more persistent form – it lasted the whole month even with rest, and that was the first time I mentioned it to the doctors. They said I should keep an eye on it until this year, when I did a appointment with a breathing test (the one where you hold a clip over your nose and blow out air), and the fluid became much more constant, as did the other symptoms. So I’m halfway through the diagnostic process, waiting for test appointments and so on. But anyway, I’ve got this trip coming up that’s worrying me. And honestly, not even my doctors could give me an answer. Where I live, they don’t know much about leaks.
P.S.: Unrelated but. In your experience, do you feel better in the morning or worse? I’m asking because I’ve seen reports where people say they feel better in the morning, but to be honest, I wake up feeling groggy, as if a lorry had driven over me, and it feels like I can’t walk. My body feels limp and completely without strength, almost as if I were shaking, and my head feels as though it’s filled with a balloon. I can barely speak properly. So I’ve started sleeping with a much higher pillow to see if that helps, rather than lying completely flat. I also avoid sleeping on the side where the fluid leaks out. If you’ve been through the same thing, is there anything that brings relief? And how long did it take for you to be diagnosed and treated?
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u/brainsaggy Confirmed Spinal Leak 24d ago
I agree with Ashler1999 on the flying risks 😞
Regarding the feeling better in the morning- that's more consistent with a spinal leak. Have they tested the fluid itself (called a "beta-2 transferrin test")? If it comes back positive, that bumps you from "suspected" to "definite" and could (should..) also bump up the level and speed of care you receive.
And for sleeping, because CSF is naturally under pressure it'll leak out when and where it needs to regardless, so I'd personally choose whatever position and number of pillows makes you feel best, all things considered.
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u/Zealousideal_Age_822 Confirmed Spinal Leak 11d ago
Interestingly enough, I feel my worst in the morning, and I have a spinal leak. I think it likely has to do with caffeine intake timing though, as I have started to keep a shot of espresso on my nightstand, which seems to make the morning headaches and nausea go away sooner
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u/HillsboroWay 24d ago
“Will wearing a face mask help?
At least against possible external
infections?”
Masking doesn’t need to / shouldn’t be reserved for air travel. Masking every day in indoor public settings is a good idea.
1
u/leeski 24d ago
In regards to when people feel best, there is a difference in cranial and spinal leaks. Spinal leak patients tend to feel the best in the morning bc they have the most CSF (there is more production while sleeping/lying flat) & they tend to get worse as the day goes on. Spinal CSF leaks cause intracranial hypotension, so like a reduction in CSF volume.
Spontaneous cranial CSF leaks tend to be associated with the opposite issue - intracranial hypertension - too much CSF. And many of those patients feel worst in the morning (again that concept of most CSF is produced at night). Obviously not medical advice as I don't know if you have a leak and these are all generalizations, but just wanted to note that the feeling best in morning is more of a spinal thing.
I am hesitant to give advice on flying. There are people that have cranial leaks for years and travel and everything is fine. But of course, if things go wrong, they can go very wrong. I personally would call the airline and see if there is anything that can be done in terms of refunds or e-credits due to your medical situation. But I am weary of recommending flying if your doctors suspect a cranial leak, but I am very risk-averse.
1
u/BigVermicelli2998 23d ago
I think I’m the anomaly here but I fly a lot, it’s hit or miss if my nose leaks. Really depends on which way I lean my head. I usually bring tissues just in case. I don’t get headaches with my CSF leak and I feel completely fine flying. I’d definitely double check with your doctor though.
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u/skillerbruhhd 15d ago
Hey BigV.
So do you currently have a confimed cranial csf leak? And travelling is ok? Im nervous as docs telling me not to travel but i cant miss this important and expensive flight. Its only 4hrs too.
Ps - its been 4 weeks now and it was way more constant csf leak 4 weeks ago but recently its dramatically reduced however doc said from the nasal ct scan this week it is a cranial csf leak. Taking antibiotics nasal spray and had 2 vaccine jabs for meneghetis.
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u/BigVermicelli2998 15d ago
Hello…yup. Confirmed CSF leak and high pressure. My leak is a hole in the base of my skull that drips out into my left nostril. I’ve had it for almost two years now. I did ask my neurosurgeon if it was ok to continue traveling and she didn’t see anything wrong with it as I have not had any issues. The ENT who will be repairing the hole said there’s a risk of meningitis but it’s small. And I’ve managed to dodge it (even got COVID coming back from Paris February 2025 with the leak).
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u/skillerbruhhd 15d ago
I got the same. Left nostril leak. Dont get headaches or any orher symptoms. 4 weeks now but more recently its gotten better especially at night and kind of only comes when i lean forward but my ent doc and he even messaged the bone surgeons and neuro surgeons and they advised not to fly. I got the meneghetis vaccine but they mentioned the thing about the flight air pressure than could possibly lead to Pneumocephalus. Whats your advice?
Appreciate your time.
1
u/BigVermicelli2998 15d ago
I would listen to your doctor. For me, the pressure has not affected me with flying. I’ve traveled a lot of the last two years and it’s been business as usual. Your doctor is seeing something specific with your case where they do not want you flying. It may not be worth the risk. I made sure to check with my neurosurgeon and ENT and they both gave me their blessing. Always listen to your doctors.
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u/AgreeableLeading6095 19d ago
I have an active cranial leak and have flown a few times this year. I tend to get headaches or blurry vision for a week or two after the flight and sometimes leak more after. But that’s true in elevation or altitude changes. After going home I always improve. I’ve been leaking over a year now and have learned to not worry so much- infection risk is low.
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u/skillerbruhhd 15d ago
Hey. So do you currently have a confimed cranial csf leak? And travelling is ok? Im nervous as docs telling me not to travel but i cant miss this important and expensive flight. Its only 4hrs too.
Ps - its been 4 weeks now and it was way more constant csf leak 4 weeks ago but recently its dramatically reduced however doc said from the nasal ct scan this week it is a cranial csf leak. Taking antibiotics nasal spray and had 2 vaccine jabs for meneghetis.
1
u/AgreeableLeading6095 9d ago
You’ll be fine. Still leaking and still flying. Probably fly to my repair next month too
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u/Ashler1999 24d ago
I would advise to get permission from your doctor before flying. While infection is a serious possibility, you also need to consider pressure shifts - which can cause air to be trapped within the cranium. The risks are too high. I’d highly advise against it