Flight Journey with MAV

[anon27137979]

Hello all,
i am taking Topomax 50mg daily and have migraine with vertigo.From past 2 months i am having seizures because I have stopped topomax, now siezures are not that frequent as i have started again but i have dizziness and headache

i have flight today evening, i am confused to cancel or not, does the flight journey makes my health worse, please give me your suggestions it will be helpful

[turnitaround]

Users @Dave, @GetBetter, @Shazam and myself (to name a few) have all had flights after the onset of MAV and had barely any issues. For Dave & I at least they were long haul.

I did have an increase of tinnitus but that was it (suspect it was flight food!)

Because I changed time zone, I slightly amended my Amitriptyline dose to reduce lethargy.

My main advice would be to take a (phenylephrine hydrochloride based) decongestant like brand Sudafed, 30 minutes before the end of the flight to ensure the airways for your ears are in a good state for descent. Also some members have found ear protection helpful, including so called “Ear Planes”, though I’ve not personally used them, safe flight!:

^{These images link to products other members have found helpful and at the same time help fund the site: As an Amazon Associate I earn from qualifying purchases. Thanks for your support!}

Flight Kit!

Decongenstant (US)	Sudafed (UK)	“Ear Planes”	Memory Foam Neck Pillow

[helpbayareadizziness]

Hi all! You’re all amazing.

Does anyone have any jetlag/long flight advice? (there didn’t seem to be any recent posts on the forum)

This is probably a bad idea but I’m flying to Japan from San Diego September 5-20 (stop in Seattle for a few hours) with a good friend to see my cousin’s family over there. My concern is I will arrive and just have a really bad dizziness episode that won’t leave me. I plan to talk with my new neurologist (Emily Engel at Scripps July 24) about this (I googled San Diego dizziness neurologist & she’s the only one who listed dizziness in her bio) as my old neurologist had no advice. Maybe she’ll recommend valium or something and I can try it before I go to see if it helps with attacks or if I can function on it (in the past when I’ve taken stuff like that, it hasn’t helped but if I recall it’s fun).

I went to Burning Man (a desert festival in Nevada) 2 years ago & I had the same problem where after the first night I woke up and felt horribly dizzy and left (they tried a triptan shot on me and I think some motion sickness stuff but none of those emergency migraine/vertigo meds have ever helped me). Then again, I didn’t have a family member’s home to take it easy in if I needed to, so I guess at the worst, if I get a bad attack in Japan, I can stay in my cousin’s home and deal with it as best as I can. My cousin’s wife (who is half-Japanese) said her family always goes on a little weekend trip the next day after they arrive to Japan (to deal with the jet lag) so that’s our plan. If my dizziness isn’t horrible there, I also plan to try the bullet train, and if I’m fine with that, maybe the underwater train as well (I haven’t been on a boat since 2014 and plan to avoid them but I assume an underwater train shouldn’t be an issue). I do know that bad dizziness attacks can last over a week for me where it’s hard to do anything & I have bad nausea, can’t eat much or vary foods (though Japanese food is easy on me) & feel like I got up from rolling a few times down a hill. A neurologist in the past has prescribed me Prochlorperazine Maleate 10 MG Tablet for nausea so I plan to try that before the trip as well to see if it helps.

I used to fly all the time but since the dizziness got worse, the biggest jetlag trip I did was LA to Baltimore and flying was not fun (I don’t think my dizziness got that much worse) but I think being with a friend in Japan and going somewhere new and exciting and seeing my cousin’s new wife/kids will help. To ease the jetlag for the Baltimore trip, I went to bed 20-30 minutes later each night until I was on Baltimore time which seemed to help. I guess I can do that for the Japan trip as I work from home, and then eventually right before I leave to Japan, I’ll be waking up at 3pm and asleep at 6am my old time so that in Japan I’m up at 7am (the only time that’s an issue is my flight from San Diego to Seattle is at 735am but I can plan to go to sleep at 6am when I’m at the airport and just go to sleep when I’m on the flights). Maybe I should save the $ & not go, but my cousin’s family is only there until the Spring, I heard Japan is great in the Fall, it will be me and his kid’s birthdays when I’m there, and if I’m going to go in my life, it’d be nice to go when I have family there and a friend to go with me , and if I feel horrible then I wasted $560ish & just stay at his place the whole time and fly back. I’m sure I’ll be able to at least eat stuff and get around somewhat and eventually get used to feeling horrible and hope it doesn’t continue when I’m in the US or at least I seem to always adapt in time. I will be violating the Heal your Headache migraine diet a lot there because part of the reason I’m going is to experience Japanese food (I don’t think the diet has helped me but onions or mushrooms may bother me but I feel like I’ve accidentally had foods with them and haven’t noticed). I’ll try my best to avoid the 6 Cs (aged cheese/yogurt, citrus/banana, caffeine/chocolate, cured meats, Chinese take away (aka msg), & chianti aka alcohol).

Currently, my dizziness is still as bad as it’s been. I’ve had it bad since 2011 (I believe because of stress), and it was over a year after I lived in India so I don’t think the bad dizziness was from lots of long travel (although initially the dizziness may have started in 2005 from traveling but I think that was from parasites and the dizziness was not too bad back then). I’m currently in the process of trying Rhodiola from Germany for dizziness for another 2.5 weeks and a Dexabion shot (last shot will be in a month or so). If those don’t work, I will likely try botox or a new combination of meds.

When I see my neurologist, I was thinking of also reducing and going off the Risperdal & DDVAP & maybe even the Lamictal I take (as I don’t think I need them anymore &/or in case there’s any lingering or longterm side effects from taking them), but I assume I should wait to consider those changes until I see her and until after my trip.

Thanks y’all (and feel free to holler with any Japan advice!)

PS-Someone recommended these in an old post so I plan to get them
https://www.amazon.com/EarPlanes-Ear-Plugs-Pair-Pack/dp/B001HTWL8C
https://www.amazon.com/AERIS-Restful-Airplane-Accessories-Flights/dp/B00JIPG09S/ref=as_li_ss_il?s=hpc&ie=UTF8&qid=1537191516&sr=1-1-spons&keywords=Memory+Foam+Neck+Pillow&psc=1&linkCode=li2&tag=merefieldtech-20&linkId=1c842c98e3c6a3c877f183720048bf83&language=en_US
I have noise cancelling headphones too so that should help

[helpbayareadizziness]

Thanks! My concern with Sudafed is in the past it hasn’t helped me and it violates the HYH migraine diet I’ve been on for two years (then again unsure that’s helping) but I guess it can’t hurt to try it again before the trip to see if it helps. And either way, if I feel horrible on the flight, I can try your take it “30 minutes before getting off the plane” idea.

[turnitaround]

The Sudafed isn’t really treating the MAV it’s just guarding against making things much worse. Let us know how you get on :).

[Naejohn]

I know that Afrin is taboo since it can lead to overuse, but it absolutely was a lifesaver for me. Worked miracles when I felt like I couldn’t handle a decongestant that was in pill form.
Also agreed on the Amazon links you found. Those are all great tools to have!
https://www.amazon.com/Afrin-Severe-Congestion-Nasal-Fluid/dp/B07HG5JMBR/ref=sr_1_19_sspa?keywords=afrin&qid=1562785597&s=gateway&sr=8-19-spons&th=1

[helpbayareadizziness]

@helpbayareadizziness

Sudaf

Thanks, it just seemed to not help me from getting worst in the past but I’ll ask my neurologist and can’t hurt to try it before the trip to see if it helps or no side effects :). What dose/how often do you recommend?

[turnitaround]

It’s not a prophylactic, its just to avoid fluctuations in pressure in your middle ear. It’s to be taken 30 minutes before landing. That’s it. Never long term.

[Manatee]

I’m in the middle of a trip right now (layover in an airport at the moment) and experienced something on one of my flights that hadn’t happened before. In the summer they try to keep the shades down in the planes while boarding to help keep the plane cooler. I was somewhere around row 18 in the plane but in an aisle seat (I prefer window). For some reason, NO ONE in any of rows 1-18 raised their shades before/during takeoff. This meant that I wasn’t able to see a “reference point” out of the window, which was surprisingly disorienting. (I normally don’t have any problems with flying but I usually have window seats because I like looking out.) I’ve never really had much of an issue with motion sickness but if it had been a rougher takeoff, with more rocking, and with no outside reference point to look at, I could have had an issue.

[helpbayareadizziness]

Hey yall, I made this (compiled responses from others and from what I read), in case it helps anyone or you want to add anything please

Jet Lag/Travel Plan Jet Lag Travel Plan.pdf (90.2 KB)

I also put the plan below but it’s clearer in the above PDF as formatting doesn’t match when I copy and paste:

• Meds
  o Cambia
  o Mayo clinic recommended:
   Nonbenzodiazepines, such as zolpidem (Ambien), eszopiclone (Lunesta) and zaleplon (Sonata)
   Benzodiazepines, such as triazolam (Halcion)
  • “These medications — sometimes called sleeping pills — may help you sleep during your flight and for several nights afterward. Side effects are uncommon, but may include nausea, vomiting, amnesia, sleepwalking, confusion and morning sleepiness.
  • Although these medications appear to help sleep duration and quality, they may not lessen daytime symptoms of jet lag. These medications are usually only recommended for people who haven’t been helped by other treatments.”
  o Sudafed/Vicks inhalers/ephedrine not allowed in China so plan to use Phenylephrine HCl 10 mg & Afrin
   Also banned in Japan:
  • no more than 10% of ephedrine or
  • no more than 10% of methylephedrine or
  • no more than 10% of phenylacetic acid or
  • no more than 50% of norephedrine (phenylpropanolamine)
  • more than
  o Clonazepam = 180gm (amount as active ingredients)
  o Diazepam = 1200mg (amount as active ingredients)
  o Prednisone
   Bruce Stephen Rashbaum, owner and medical director of Capital Center for Travel and Tropical Medicine recommends it for jet-lag recovery.
• I am getting Re-Timer green visor glasses to wear which I believe means I don’t have to do this:
  o Evening light helps you adapt to a later time zone (traveling westward). Combining light exposure with exercise such as walking or jogging may help you adapt to the new time even faster.
  o Avoiding light at certain times is important too. For example, someone traveling west should avoid light in the morning on the first few days. During the day, dark glasses can help block out light. At night, draw the blinds or drapes in your hotel room or use a sleep mask.
• I plan to take melatonin 300mcg (MIT study showed this was ideal amount) before I leave to make sure it doesn’t make me dizzy (I tried it back in 2015 and it didn’t help at all) and I plan to take it to sleep on the plane and on my trip (not when I plan to drink alcohol so maybe only on the flight)
  o Mayo seems to say take it in the morning before you leave to induce sleep/get on their time zone but I get bad sleep sleeping during the day so I hope my green visor glasses do the trick
  o Advice from someone who suffers from jet lag: If the issue is waking up in the middle of the night. In those cases, I will go to bed without a problem, but waking up at 4am I will take 1/2 of a 300mcg tablet to get back to sleep again. I will not do this for longer than 3 days.
• Although diet hasn’t been proven to help jet lag, some people use diets that alternate days of feasting and fasting and high-protein and low-protein meals. If such a diet seems too complicated, you can try eating more high-protein foods to stay alert and more carbohydrates when you want to sleep.
• 5 nights before flight
  o Maybe melatonin (studies seem to suggest 3mg though others 300mcg each night?) from Life Extension
  o Maybe Rescue Pastilles Natural Stress Relief, different flavors, 1.7 oz as has helped before with sleep
• Day before take-off
  o Make sure 64oz water
  o Eat nutrient dense foods like fresh fruit, vegetables, and protein (low-sugar) instead of candy or empty carbs
• Airport/plane
  o Maybe wear sunglasses over my glasses if need be; cap
• Hour before flight
  o Decongestant aka Phenylephrine HCl 10 mg (though plugged ears haven’t bothered me much on previous flights but the longest of those was 5 hours & my next one is 11; longest since I’ve gotten MAV & MAV relates to head pressure including inner ear right?)
  o If need be, Benzo and always lots of water after (though my main concern isn’t the flight but jet lag dizziness)
   Maybe not valium as long half-life
  • Maybe 2mg (and 5mg Valium if need be) about an hour before take-off; maybe add 2.5 during flight if not enough; or take 3 nights before and 3 nights when land
   Maybe klonopin
  • Maybe half of a 0.5 klonopin before take-off or even less than .1, and then another small piece after about 10 hours in the air
  o Stretch/yoga
  o Don’t look at phone/screens as plan to sleep on flight
• Flight
  o Before Take-off
   Any free rows to take to lie down in?
   Blow nose then Put in Earplanes ear plugs (take out once cruising altitude)
   maybe Afrin (2-3 squirts in each nostril)
   Miers Labs No Jet Lag Homeopathic Remedy + Fatigue Reducer
  • Arnica Montana 30C (Leopard’s Bane), Bellis Perennis 30C (Daisy), Chamomilla 30C (Wild Chamomile), Ipecacuanha 30C (Ipecac), and Lycopodium 30C (Clubmoss)
   If bad smells on plane
  • Drops of essential oils on shirt and gently wrap around nose/lower face
  o Throughout
   Retainer in like you’re going to sleep
   Can flip neck pillow so rest on it as head goes forward
   Can try using snack track as sleep rest using arms/pillow
   Turn carry-on luggage into foot rest or posture
   Eat nutrient dense foods like fresh fruit, vegetables, and protein instead of candy or empty carbs
   Lots of water (8oz/hour eh too much for me as doctor said 96 max right?), electrolytes
   Maybe suck on lozenges or gum
   If need be, head back against seat and don’t look to side (maybe look out window or at seat in front but maybe not screen)
   Whenever you get symptoms
  • Be calm, and ride with them and do what you can 
  o Hour before land
   Maybe another 5mg valium eh tired
  o 20 minutes before land
   Put in earplanes ear plugs
   Take decongestant and maybe afrin
  o Descent
   Yawning frequently during descent is very effective; swallowing water from a bottle is also helpful
• When arrive/while there
  o If feel bad
   try ice pack on spots where feel bad
  o Throughout
   Lots of water; fruits; veggies; daily servings of all foods
• Evenings
  o If melatonin doesn’t work and feel bad, maybe under .5 klonopin?
• First morning in new place
  o Optimizing Morning Light & Morning Exercise
   Work out in the mornings when you are in the new time zone, getting your blood flowing and waking you up even more. Fresh air some place green; maybe walk barefoot on nature
   Expose yourself to natural morning light if you can, especially in the initial days of jetlag. This is often hard as I want nothing more than to crawl under the covers and stay there, but even if it means opening the window and sticking my head out as soon as I get up, it helps remind my body that it’s actually day time.
• Boats
  o Look at horizon and be on deck
  o After-maybe walk/focus at horizon
• Trains
  o Sit on lower level (less swaying)
  o Sit in front seat facing travel direction, look outside
  o After-maybe walk/focus at horizon
• Renting a car
  o prior to signing the rental agreement, insist on sitting in the front seat of the proposed vehicle so you can test the comfort of the windshield’s optics (some cars have curved windshields that distort lower corners)
• For buying future plane tickets
  o Arrive at night to fall asleep
  o Break up flights
  o Be aware of what times you’ll be flying to reduce sleep problems & to avoid rush times/busier airports
  o See how much more first class is if need be
  o Maybe over ear "noise cancelling headphones and wondering if these might help reduce any effect of the constant jet noise levels and maybe even help with pressure change in some way. The Sony ones even talk about “Atmospheric Pressure Optimization”
  o Get seats on left side when facing cockpit as more room against window
  o If what I do in the above fails
  Map out your entire trip if possible. Look at the layout of airports and where you might stop to eat, sit etc., Know the path you take from gate to gate so you don’t feel rushed so you don’t have to constantly look up at directional signs in the airport, etc.
   Can try meridians (though those theories haven’t helped me in the past)
  • Archived Article Notice
   Calculating when to seek and avoid light depends on the number of time zones crossed, direction of travel, and usual wake and sleep times. These calculations can be done automatically online, or manually by following some rough guidelines:
  • 1. Estimate when your body temperature reaches a minimum. If sleeping 7 or fewer hours per night, assume this is 2 hours before your usual wake time. If sleeping more, assume this is 3 hours before your usual wake time.
  • 2. Determine whether you need to advance or delay your circadian rhythms. If you are flying east (to a later time zone), such as from Los Angeles to New York, you will need to phase advance. Otherwise, if you are flying west, you will need to phase delay.
  • 3. If you need to phase advance, avoid light for 4 hours before your body temperature minimum, and seek light for 4 hours after it. Otherwise, do the opposite.
  • 4. Shift your estimated body temperature minimum by one hour earlier per day if phase advancing, or one and a half hours later per day if phase delaying.
  • Maybe sleep shift so go to bed later or earlier (but dizziness for me increases if I do this by a greater shift than 30 minutes)

[mmeyer]

Hello!

I am new to this site although I have lurked on and off since being afflicted. For context, I have had what I assume to be MAV for 4 years. It came on suddenly when I was 26 with common symptoms such as rocking, walking on marshmallows, light sensitivity, low tinnitus, and probably much more. The first year I couldn’t walk into a store. I had to wear sunglasses everywhere. My head was heavy and I felt drunk and wobbly. I had to stop working. Those things are gone now and I am fully functional in my everyday life.

I am turning 30 in a few weeks and I have come a long way. I have not been medicated other than the occasional lorazapam for anxiety in the past, but have not taken one in 2 years. The doctors I went to really had nothing for me and would tell me to sleep regularly, stay hydrated, etc. One said migraines, and the others said not sure. Nothing was ever confirm but after reading these forums, this is definitely what I have.

I would say I am now 80% better and lead a normal life. My one weakness is motion. For example, if I am in a car moving, I feel fine. When the car stops at a light, I still feel like I am moving for about 15 seconds. I generally will do some deep breathing and it will go away. My anxiety shoots up during this time but I always tell myself I can get out of the car whenever I want and then I start moving again and I am fine. If I take a long road trip for several hours in the car, I will feel like I just stepped off a treadmill for a bit, but it always goes away. I can live with this. I have also been using a balance board to train my brain. I use it for about 30 seconds and I will feel like I am walking into the floor for a few seconds after but then it goes away.

Now, my fiance is from England ( I am in California) and his sister is having a wedding in October in England. I have not been on an airplane for 6 years, and this seems like my one last hurdle to get over. I am terrified of getting on an airplane. I am afraid because I don’t have the option of getting off if I feel weird ( like in the car). I am in therapy about this as well but I’d like advice from people who are like me and understand what this can feel like. I have scheduled a 1.5 hour flight at the end of the month as a test, and every day it approaches, my anxiety shoots up.

What I have done that helps includes: deep breathing, being distracted, moving my body, listening to a positive podcast/music, etc. I also have bought EarPlanes and have a prescription for Xanax and Lorazapam, however, I have never taken Xanax and Lorazapam makes me pass out, and sleepiness makes my symptoms worse so I don’t think it would be wise to take on a flight. I have read a lot of people talking about Valium but I fear I will still pass out with any benzo?

I have overcome a lot of my MAV fears in the 4 years I’ve had it. Walking into grocery stores everyday, driving on long trips, going to the zoo, doing long hikes, using a computer, all the things I have had to re-train my nervous system to be ‘normal’ again with. An airplane seems to be the last level for me, and it’s been the hardest to accept so far.

If anyone has any positive tips, tricks, experiences, I would love to hear about them. I am done living in fear, so I would appreciate not reading anything that would discourage me. Travel has always been my passion, and I want it back.

Thank you!

[MNEK18]

Hey!

Pretty much in the same boat! I haven’t been on an aeroplane for 8years and I find an escalator/lift bad enough! It’s the pressure I don’t cope well with, Don’t know I could cope flying, I will be really interested to read how you get on!

I wish you well and hope you can overcome the fear lovely! You may just inspire me

[joli]

I had an airplane trip apptox. 2 h long and it was fine, something like driving in a car or bycicle when the symptoms are less felt. I do have the same symptoms in everyday life what you had - marshmellow floor, low tinnitus.

[Naejohn]

Ladies,
I know you don’t know me Michelle, but Kirsty @MNEK18 can attest that I’ve been in exactly the same scary place as you.

My first scheduled flight was 5 weeks after MAV came for me, I still had no idea what was wrong with me and had no medications. I woke with MAV on Jan 9th and had my first flight scheduled for Feb 13th. I tried everything short of cancelling the trip to get out of it. I had organized an incredibly important business meeting in California and had meetings, dinners, entertainment etc scheduled for clients, myself and 3 coworkers with going with me. I couldn’t get out of it without letting a lot of people down. I cried every day leading up to it for fear and worry.

So, in short; the worst part for me was the airport lights / motion / activity. I did wear noise cancelling earphones and had good traveling partners who helped me with escalators, moving sidewalks etc.
Once on the plane, take off and landing were the most stressful parts but the flight was absolutely fine… much to my amazement! The flight to LA for me is about 3 1/2 hours long and it was very uneventful. I have flown several times since and again, the activity of the airport is still the hardest part but so doable!

You can do this!

[turnitaround]

Travel, what’s that again?

[MNEK18]

@turnitaround! yep!!

[mmeyer]

That’s great to hear! I keep telling myself it’ll be like getting in the car.

Did you take anything for anxiety?

[mmeyer]

Wow thanks so much for the reply. I feel the same way you did before you got on. I just want to cry thinking about it. I’m glad to hear that it wasn’t a big deal though!

Did you take any meds or have any coping tips for anxiety? Thanks!

[Naejohn]

Hi Michelle,
I can’t say I did or do anything special for the anxiety… once I faced the fear head on that first flight and got in the air, the anxiety dissipated and hasn’t returned.
I did find later in my illness a homeopathic remedy that I used for long car rides where I was a passenger and flights after that first one. I found it to be so helpful! It may help you also: https://www.amazon.com/gp/product/B007HBLKNG/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1
I think you will be very surprised at how well you will do

[mmeyer]

Hey all. I just wanted to give an update since I finally the move and got on an airplane after 5 years!

I was totally FINE. I want to mention that I was absolutely terrified, had thoughts that this would make me worse, I’d have panic attacks and weird feelings during or after the flight, etc. None of that happened.

I went on my first 90 minute flight in the morning after a storm, so take off was a bit choppy from the wind and gave me a slight “dip” feeling but it lasted maybe 10 seconds. Once we were higher up, I didn’t even notice any movement. There was some minor turbulence and that didn’t bother me or make me feel weird.

I took another 90 minute flight home 3 days later and this one was at night. Again, no weird feelings during or after, however, I do think not having a window to look out of since it was mostly dark heightened my anxiety a bit more. But again, totally fine. I actually hated the shuttle to the terminal more than the flight!

I feel so happy and like apart of me is back. I can talk about travel in the future now without feeling sick. Thank you to everyone who encouraged me here.

To summarize, the best way to fly for me was:

• during the day and next to a window
• if the airplane has a propeller, avoid sitting next to it. (Mine had one and it vibrated my seat which I didn’t care for)
• earplanes were fantastic!
• have a distraction (my fiance and I watched 90 day fiance since one episode was the exact time of the flight)
• and bring comfort items and “just in case” items or medications. I brought anti anxiety meds, nasal sprays, meclazine, etc and I never needed to open it but know it was there was comforting.