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My IIH Story Includes Surgery, Leaking CSF, and Flying

// 90 Comments
Mine was initially found in an MRI machine like this one. There was a head cage (I am sure it has a different name) near the entrance to the machine that held my head still during the test.

I initially wrote this five years ago to answer my first question after diagnosis: can you fly with intracranial hypertension (IIH)? While flying with IIH was my main concern back then, today, I update with a rather scary warning about assuming I was okay because I felt better.

I remember the day five years ago when the headaches and other symptoms were given the name idiopathic intracranial hypertension (IIH). It has to do with the pressure of the cerebral spinal fluid (CSF) in my head. As a travel blogger, I immediately had to ask, can you fly with IIH?

The answer isn’t as simple as one would expect.

It depends.

There were more tests, and they were not fun either. A lumbar puncture (spinal tap) is the standard test to measure the opening pressure. 

I was grounded at first (no flying with IIH for a while), but I was also assured that once mine is under control, there will be options. 

But never, in my wild dreams, did I ever imagine what would actually happen to me.

First, a quick background on IIH.

Disclaimer: I am not a medical professional but rather someone dealing with my own intracranial hypertension diagnosis and recovery plan. Remember to seek medical advice before making any changes in your own life.

Virgin Samoa at Faleolo Airport in Apia, Samoa with no runway lights in the background
Virgin Samoa at Faleolo Airport in Apia, Samoa before my diagnosis.

What is intracranial hypertension?

If you are wondering what is intracranial hypertension, you are not alone.  I had never previously heard of it either.

In simple terms, the pressure of the cerebral spinal fluid in my skull is too high, resulting in an intracranial pressure headache or other IIH symptoms, which for me were mostly odd neurological pains. 

While it’s measured with the lumbar puncture, mine was initially suspected from an MRI scan.

Here’s a trick to prevent feeling claustrophobic during the MRI scan: simply close your eyes before they put the head camera on you, and keep them shut until you are told that the scan is over.

Mine was initially found in an MRI machine like this one. There was a head cage (I am sure it has a different name) near the entrance to the machine that held my head still during the test.
MRI machine

Back to my story about travelling and flying with IIH

And so my story from above continues when they told me that my initial pressure was higher than normal but not too bad. I was told to lose weight, a few other tips listed below, and prescribed the drug Diamox to take when I flew. 

I followed the suggestions.

I lost weight and took the Diamox 30 minutes before boarding, and I was on my way again. I had horrid headaches, 24-hour fatigue, and a few other symptoms after each flight. To compensate, we added in the extra travel day and increased our overland transit. For us, this wasn’t a problem, as we love road trips. And at the time, I “knew” the symptoms would be worse without the meds.

Then there was the flight that I forgot to take the meds and walked off fine. Here is where my story will hopefully begin to deviate from yours. 

I had lost the weight, reduced my stress, changed my diet, and now I felt fine without the meds. So, I self-diagnosed (DO NOT DO THIS) and stopped taking the meds altogether. 

Had I returned to the neurologist, he might have told me that since I am allergic to sulfa drugs, I am allergic to Diamox. (Why this was missed in the first place is an entirely different question.) The allergy may be what was causing the outward symptoms.

But I didn’t go back, as I felt fine.

The scary part of my story …

Fast forward five years to today. Half of the weight has crept back on slowly, without notice. Then, rather quickly, I lost nearly all the hearing on the right side. Just like that. 

It was enough to send me back into the MRI machine (the same machine that initially detected that there might be a pressure problem). 

Well, this time, it turns out the pressure has broken through the bone that separates my ear canal from my skull, and I am leaking CSF. Yes, there is actually brain fluid leaking out of my nose and down the back of my throat.

The surgical repair does not sound like fun, but I have no choice. It involves cutting a 4X5cm hole into my skull and rebuilding the bone with graft material that he takes out my leg along with titanium mesh.

And once again, I am grounded – no flying with IIH for now and for at least several months after the surgery. This time there will be follow-ups.

Here’s my current scan: 

IIH broken though the bone that separates my skull from my ear canal.
Black = air, a normal ear canal
Bright white = CSF
Gray = brain
Lighter white = bone

Surgical update

Surgery was hugely successful, and now I have two very impressive scars. The one on my head being much more impressive than the one on my leg. More updates in a few months.

Intracranial hypertension: What can I do now?

The following is a list of tips from my doctor for my case. Your situation might be different.

  • Reduce stress.
  • Reduce weight to normal range (my doctor suggested weight loss can sometimes put IIH in remission).
  • Reduce vitamin A (My intake was way too high even for a healthy person)
  • Get more sleep (for me, this means at least 7+ hours per night)
  • Cut out caffeine.
  • Reduce salt.
  • Walk (It’s the only exercise they allow, otherwise, no lifting and no bending).
  • Stay grounded: At the initial diagnosis, they didn’t want me above 5K feet. Therefore, there was no IIH and flying for a while as well as no mountain elevation.

Learn more about intracranial hypertension

If you want to read about the condition, check out one of these three articles from leading health organizations:

Online support if you have intracranial hypertension

There are several Facebook groups that claim to offer support. I neither run nor monitor any of these groups and offer them only for convenience. I am not necessarily recommending them, as groups change with their members.

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As a travel blogger, my idiopathic intracranial hypertension diagnosis (IIH) hit hard. You see, IIH and flying are not always a good combination. Once mine is under control, there will be options. For now, I am grounded.
As a travel blogger, my idiopathic intracranial hypertension diagnosis (IIH) hit hard. You see, IIH and flying are not always a good combination. Once mine is under control, there will be options. For now, I am grounded.
MRI side view of a human head

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Comments

  1. Babe I’m sending you ALL MY LOVE. i think it’s amazing that you’re still pushing thru and not letting anything get in the way. Your courage and strength knows no bounds, and is truly an inspiration for us all. HUGSSS❤️❤️

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  2. This sounds so scary, but I’m glad you’re OK and hopefully you will be able to resume flying soon! Thanks for sharing your story!

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  4. Oh my goodness! What a terrifying diagnosis. I don’t think I would have managed it as well as you have. Have you encountered any destinations where you were not allowed to bring in the meds you need?

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  5. Wow, sounds like such a scary travel experience. Great information on what to look out for. Glad to hear that you’ve pulled through this.

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  6. Thanks for sharing your story! Hope you will get some rest, slow down and recover fully after the surgery. If it is supposed to be only a few months – it´s not the worse! Will wait for the follow-ups! Hugs from Spain

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  10. Hey, I have been diagnosed with IIH too. It’s a struggle but gets easier… I’m on Diamox to lower the pressure and Emgality shots for the headaches and neurological stuff, I too have reduced my salt intake. They have all helped, I have good days now. Finally! I’m not at a 100% just yet and still feel the pain every once in awhile and my eyes got better but still get some visual disturbances… but but but, things did get better.. just needs patience and a lot of self love! also, its good to be ur own advocate and do ask your doctors questions if you have any… *big healing hugs*

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  11. I have a intracranial pressure and as far as i am reading post from different sites i am not fit to fly but i need to go homs since i work on a ship flight is more than 20 hrs with connecting ang waiting in airport i am very worried and thinks to much

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        • I have no idea if it is the traditional treatment, but my doctor gave me Diamox. (remember I am not a medical professional, so be sure to ask your own doctor about it)

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          • What medication are you on to treat the IIH? I was diagnosed 3 days ago and that’s the starting medication I was put on

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          • I am on Diamox as well, been now 3 months, so really now that cruddy feeling.
            Nice to know there are other people, with similar things.
            Would like to have someone to Bounce off when feeling low.

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            • If you search for “intracranial hypertension” in Facebook groups, you will find lots of them, both local and international. You will be surprised by how many people have this condition.

            • Hi i too have IIH and was prescribed Diamox and within a few months it caused me to have kidney stones and other kidney issues and i had to get surgery im struggling now to recover but i have to stay on Diamox even though it can cause me to continue to have kidney issues

  12. I know there are no words to say that really make things better. I have Lupus and I have Pulmonary Hypertension. Having a chronic illness sucks. I will say that the Sworkit app has been great for getting exercise since I have to exercise so my heart doesn’t wear out too quickly. I also loved a comment someone made in a podcast once, We all get dealt cards. Some of us more or better cards than others, but our one job is to build our own super awesome card house.

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      • Hey how have you found it now? Did the weight loss put your IIH in remission?

        I haven’t stopped travelling like you did although I should have I hate having my life on hold. I’m only 6 months into diagnosis with no symptoms although I do have papilledema. I am so glad to have stumbled across your blog as I just booked Italy for a week this summer.

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  14. Rhonda, I’m sorry I missed this before, as I would have sent you many well wishes over time. So glad to read in a more recent post that you are better and can fly again! Terrific news!

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  16. Oh no! This sounds terrible, and I wish I could send more than positive thoughts. I’m trying to get into the habit of walking more as well, given my sedentary lifestyle chained to the desk. If nothing else, your post has definitely inspired me to get off my butt and get moving!

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      • I’m not diagnosed yet iff I have IIH but the last time I fly with 25hrs non flight iced experienced the most painful headache and earache in my life.. not unusual.. so I wonder why this time was so painful? Before it’s only my ear Selma like clogged after taking off and landing off now with a pain andmay head is like going to burst? Since then I have a headache everyday, and now stilll seeing a neurologist.. I do know yet my condition but I’m thinking that it could be IIH or I have a CSF leak..

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  18. Hi Rhonda, I just check back to your blog and read this post. It’s a sucky situation your in. Yet I believe you are tough enough to get through it. Thinking of you, Tim.

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  19. Rhonda – What a challenge you are facing. Enjoy your FitBit. I like that it encourages you. Mines a Flex, so it just flashes me and vibrates…. sounds a little horndog-ish. LOL Thanks for sharing. I can’t walk with you or drink tea with you from Canadaland, but I will try to make you laugh on occasion. Do what you have to do to take care of yourself. People will understand. Cheers!

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      • Hi Rhonda,
        I have to fly Monday.
        I am really nervous.
        Can I ask what your I risk symptoms were, and your path to diagnosis. I went to several emergency rooms and doctor visits . They said for a month I had migraines.
        How are you doing now? What mess are you on now?
        I had a Merina IUD. Had it removed today. Wondering if removing it can reverse your symptoms?

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        • I was initially diagnosed from an MRI looking for something else (that I didn’t have). Then I was sent to a neurologist who had a lumbar puncture done to measure pressure. Right now I am doing fine and have no problems with flights, good thing too as I am a travel writer.

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          • Hi Rhonda,
            I also have IIH and I had a benign brain tumor .
            Do you mind if I ask what was your opening pressure ?

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  20. Hi Rhonda,

    I’m really sorry to hear this and I wish you a speedy return to better health. I think the volume of comments on here in such a short space of time is testimony to the support you have.

    As you say, being in NZ is an amazing place to be. Appreciating local surroundings will no doubt mean we are able to learn a lot more about this beautiful country from you.

    Wishing you well.

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    • Thanks Guy, and yes, I do feel the love and support. And, I am enjoying discovering the little things in New Zealand.

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  21. Sorry Rhonda!

    A diagnosis like that is no fun. But, selfishly, I’ll be happy to see more of New Zealand since I’ve never been. 🙂

    I’d love to come for a walk with you, but the commute of 8,234 miles might a bit tricky. 😉

    You seem to have a great attitude. I hope you end up writing a great book! Is it a novel? what’s it about? Do you have writing resources available? Having been a writer and in critique groups for a while, I’ll he happy to help any way I can!

    Have a good day, enjoying all you can right there from Auckland!

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    • Thanks Mary! It is a light-hearted creative non-fiction following our daily lives, mishaps, and travel as we adjust to our long-term home exchange in Spain.

      I have a critique group as well. It is what keeps me focused. I am on the first edit now. I would love beta readers for later.

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  22. Wow! I am so sorry to hear about your medical issue. I would have never know, as I feel you have been pretty active on SM. Thank you for all you do and for sharing this. I think it is good to know you have support from so many of us. I can’t even imagine all the layers of thoughts and scenarios that must flood your mind. I am sending you good thoughts and wishing you an aswser to all of this as well as recovery. Now you know what you are dealing with, so time to tackle it. Hugs to you and please tell me if there is anything I can do.

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    • I am trying my hubby’s trick for all the thoughts in my head. Just focus on what’s in front of me, and keep a positive attitude.

      BTW – Which group is SM, and I am glad I am still active enough there not to have been removed 🙂

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  23. Watch lots of kitty cat videos! Also another idea listen to waves crashing.. that helps me cheat at getting my BP taken, wonder if it will help the head. (maybe listen while sleeping even! jsut not too loud)
    How about some classic music like Mozart etc?

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  24. Hi Rhonda,

    I’m glad you got a diagnosis (even if is not so good), so you can fight it. I’m sure you’ll win the fight!! I have regular hypertension and got lots of advice. My own is to rest enough, eat healthy and do things you enjoy. I would love to walk with you!! you are lucky you live in a beautiful country with so many things to see and explore. I’m sure you will enjoy your NZ trips for sure.

    Here something funny: Paul began to scream the other night, I go upstairs and he was very upset because he had steep into Liam’s poo 😀 I normally put Liam in the potty before the shower, he had done his poo in it, so i let him running naked while i was preparing the bath. Well it seems he wasn’t finished… but the most funny part was later, Paul told me “I thought it was a leave, so I picked up with my hands”. I couldn’t stopped laughing for a long time because Paul was so upset as he is the “clean devil” type of person, ha,ha,ha

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    • Thanks for the laugh, this is hilarious. I will be giggling all day from this one, possibly all week. Oh, poor Paul. As for your advice, I’m on it. Sleeping more, eating better and beautiful walks.

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  25. I’m very sorry to read this. I can imagine that’s incredibly anxiety provoking and scary. I also know that doctors are good about presenting worst case scenarios. (After my hysterectomy, I lost some of my vision, but it restored it self and I was fine. This was after being told by one specialist, that the damage might be permanent.) You also have a strong support network, and you’re a determined woman. I believe you’ll get through this one, and you’ll be fine.

    I’ll add your name to the Mishebierach (healing prayer).

    I’ll also do my best to keep you laughing with my blog posts.

    Go gently. Virtual hugs, strength, and good thoughts.

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    • True, an anxiety provoking, scary diagnosis followed by the instruction to reduce stress. It is quite the challenge 🙂 Interesting that you mention worst case scenario right after another comment (which was moderated, so you couldn’t have seen it when you commented) from someone else with IH who said the same about my information. Thanks for adding me at shul. We should probably do the same here, but it’s an hour away without Friday night traffic. And, thanks for the laughs 🙂

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  26. Please do additional research on IIH. The IHRF is a great source. I have IIH and have no problems flying. Airplanes are pressurized. Eye sight can be in jeapordy if you develop papilledema. There are medications, including Diamox and Lasix, both of which I take, that can help to keep intracranial pressure down. There are surgeries that can be done. I have a lp shunt which keeps my pressure my pressure nice and low. There are optic nerve fenestrations if your eyesight is the main issue. And, while losing weight and maintaining a better healthy lifestyle is always a good thing, there are many thin IIH’ers. Please, do more research. While having IIH is no picnic, it is not as bad as you relate.

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  27. Oh my gosh! 🙁 Im so sorry

    Laughing is good keeping positive is great 🙂

    I will pray for you 🙂

    If you lived closer to me Id definitely walk with you – love walking – keeps you positive too 🙂

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  28. You’ve got this – and yes, life changes when things like this happen. Let me know if you need any help, however I can. xo

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  29. Hi Rhonda … thanks for telling us – I’ve been wondering. It doesn’t sound easy to cope with … but it at least is copeable and manageable with care … and your loving family will help. It’s a learning curve for them too …

    Everyone’s been ‘so reliant’ on you being there and being a leader that it will come as a shock to all concerned. When you want to leave a laughing joke you can’t think of one … now that’s me – always, not just today … but talking to people I make them smile. So now I’ll have to get over to NZ (one day!! – have no fear I’m not on the way now!) to see you and walk with you …

    Get some audio books … and have you listened to the Flanders and Swann songs … so English – they will amuse … as too Victor Borge (ex Norwegian-American) .. he’s fun too …

    Cheers and I’ll be around … and when something silly comes up … I’ll add it in here … big hugs and thoughts for the future – especially these first few months while everyone adjusts … cheers and love – Hilary

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    • Thanks Hilary for your support and the reminder that my family has to adjust too. And I love the idea of you heading to New Zealand one day. Can’t wait to meet you in person. I will check out your suggestions.

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  30. Glad to hear you got a diagnosis. At least it gives you a starting point to work from. While it sucks that you are grounded, you have gotten to travel to so many places that you can reminisce. Try to work on projects that take your imagination and focus and not a lot of rapid heartbeats while you work to recover. That will help you focus on something good while you struggle with the difficult steps. Good luck and best wishes, my friend.

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  31. I’m sorry! That’s rough. But you can control it. Watch that At Midnight show with the RiffTrax guys for a really good laugh.

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    • I’ll have to have a look for that show. I never heard of it before. We don’t get a lot of the American TV shows, but we do get some of them. And, I can’t really control it, I am going for a “might” be able to put it in remission. Keeping a positive attitude, and drinking herbal tea.

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  32. How annoying, and also how scary for your eyesight. I have a FitBit and it’s brilliant – I really hope it works well for you too. I’ve been eating less in the evening now that it’s warmer and that seems to help keep weight off, worth a try

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  33. Rhonda, I’m so sorry to hear about your diagnosis – but impressed by your positive attitude. I do hope things improve with the measures you are taking. Scotland is a bit far away for the walks / cups of tea options, but I hope I can help you with the armchair travel.

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  34. At least you know what the issue is and what to do to make things better. I know you’ll do what you need to do to make this a memory. It’s just the way you roll.

    Have a terrific day my friend. 🙂

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  35. Laughing is good for the soul, so it can’t hurt. I’m really sorry you have that, but you have a list of how to make it better. Think of Minions. They’re funny.

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  36. That does sound scary, but it also sounds like you have a handle on what you should or should not do. That’s always good. Please keep us updated. I won’t mind if you blog about your past travels, your diagnosis, or the future because I will be here reading regardless. I have a tiny heart condition (nothing serious), so I don’t drink caffeinated drinks either and I also take slow walks. A comment above mentioned cruises. That might be a good alternative to traveling for you. 🙂

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  37. Rhonda – I’m so sorry to hear about your diagnosis. You have such energy and enthusiasm for life and travel that I can only imagine what a challenge this must be to have to slow things down and stay on the ground. But you are also a determined lady, so I’m sure you will tackle this with your usual focus and sense of humor and carry on. Take care – thinking of your and wishing you all the best.

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  38. We are all 100% on your side and all sending you the very best wishes to get this all sorted. We know that you are feeling very down, and that is totally acceptable. I maintain that writing about this will not only be good for you, but good for others with the same condition and also for others suffering from something. It is ok, to bitch, feel sorry for yourself, and use us as sounding boards. You will start to see some good things happen – like your amazing photos of the mist in the morning, your lovely friends and family. Writing is a therapeutic way of sharing a very real experience and we want to know how you are going. :))

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    • Thanks Paula. Interesting that I am reading your comment now, giving me permission to bitch about it all. I also got back my draft from a beta reader and she said I need to get more angry at one of the characters. You are correct, writing is therapeutic. I have known about IH for almost a month, but kept mostly to myself. Thanks for the encouragement. I was really nervous to hit publish, but as you can see the feedback is strong.

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  39. Rhonda, I guess I’m one to look for new opportunities in adversity, and I’d say that you’ve already discovered many of those opportunities! Love that your local friends are stepping up as walking or tea-drinking buddies, and the cruise idea? Now, that sounds fabulous! I am sorry, though, that you’re going through this. Very good that you’re taking it seriously, though, and happy that you have lots of high-flying adventures to look back on and share with friends and fans. Looking forward to the book! Take care, as I know you will.

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  40. So sorry you are grounded, but glad you found out what’s wrong so you can take some steps (pun intended) to prevent losing your eyesight. Sending healing thoughts your way.

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  41. So sorry to hear about your illness. I’d never heard of this before. It must a relief to know what is happening, and the steps you have to take to improve the condition are going to improve your general health so that is a positive too. Good luck and enjoy your walks. You’ve reminded me that I should get up and get walking too. Road and rail travel is a lot of fun too! travel

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    • I hadn’t heard of it either, apparently it’s “rare” but when have I been know to do anything mainstream. For now I will enjoy New Zealand. I have never taken the train on this island, maybe someday. We are not really a train family. We have been on several rated the amongst the best in the world, and we get bored. Cruise ships however, could work. 🙂

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  42. Hi Rhonda!
    Glad You know what it is and the uncertainty time is over.
    We will keep posting travels and you can continue showing us NZ with your road trips but you have lovely cruises that can take you very far away and show you many places in the world, many people love cruises, I think they will be ideal for you, also they have big gyms there for you to exercise hehe
    Xoxo

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  44. I am so sorry to hear this, Rhonda. i’d say you are motivated to follow doctor’s orders. Is your foot recovered from your problem a few years back that had you in the boot? Are you able to do enough walking? How I wish you lived closer. How much I’d like to be able to walk with you. You will be in my prayers. You can follow me around Paso Robles on my local blog. I also posted something funny on Persona Paper tonight. I’ll link to in on The Writer’s Door.

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  45. Sad. It’s terrible to have such disease. But at least get diagnosis and know what to do.
    It changes the whole life. Wish you to find other adventures…
    (I’m an armchair traveller for decades, haven’t money to travel and for autistic people it’s a great challenge, not to say: impossibility)
    I can walk with you only in pictures (I’m not offended, to get not comments by visit), whenever you want.
    Best wishes and greetings from Germany

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  46. Rhonda, I’m so sorry that you’re going through this. In addition to not being able to fly, it’s horrible how your eyesight could be affected. Let your wonderful family take you on walking adventures, and also let them help you with the heavy lifting. I know it’s easier said than done, but your health is the most important. Take care of yourself my friend, and I’m sending lots of good thoughts your way.

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  47. I’m glad you finally have an answer, but sorry that this is what it turned out to be. It’s good that you know what you can do and that you’re doing it, though. I also have a fitbit one, so we should be friends on there and do some of their friend challenges like goal days or something, if you would like.

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  48. Hi Rhonda, kids am one of your regular readers but I don’t say a lot. I love your attitude about all of this. You are matter of fact: ok so travel plans are changed I’ll just explore New Zealand for now. That is clearly the attitude of winners. I am to far away to walk with you, but I will certainly be behind you.

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  49. Oh, Rhonda. I am so sorry. We are falling apart. I wish I could walk with you and sip water on the porch. Take care. (((Hugs)))

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  50. I’ve been arm-chair traveling since 1997, because I’ve had two collapsed lungs, and the doctor says it’s not advisable to go up in a pressurized plane due to an 85% chance of a re-occurrence. I read great travel stories like yours, and we take road trips. They’ve become our delight, we take our time and see things we never had the opportunity to see before. As for making you laugh, dear lady. I asked the doctor if I could now play the zither, and he said, “Absolutely, no reason you can’t.” I replied, “WOW! That’s great! Because I never could before.” 😀 Hope that gave you a little chuckle! I just subscribed to you, and I expect to see more from you. All is not over, because of this condition, there are still lots of things you CAN do.

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  51. I can walk with you Rhonda! Not sure how local I am? I live in St heliers bay and not exactly sure where in Auckland you are based. It looks beautiful in the last post on a foggy day 🙂 wishing you a speedy recovery to bringing your IH under control…keep your chin up, try to relax and do give me a shout out, I can come over for a cuppa of tea or a walk..best wishes, samiya

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  52. Rhonda, I’m sorry to hear you’re struggling with this, especially since you’re grounded from air travel, which I know you love. I sure hope the walking helps. I got a Fitbit at Christmas and it has really helped me keep track of how much I’m exercising and what I’m eating. Hope yours provides similar inspiration! Hang in there. <3

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  53. Well that just bites the big one! If you are up to a big drive … we are just in the Waikato. Lots of laughs, herbal teas, healthy food (am in a similar situation) and pretty views to be found here. All the best … hugs xxxx

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  54. 🙁 Great that you know what is going on but sad that you are facing this giant at this time. Maybe, since you are grounded for a bit, you could write a book? Thinking of you and hoping that each day has its ‘wow’ moments for you… even if it is just looking at your beautiful view and appreciating the sunrise or sunset. Love Raewyn xx

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