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Posted by: Michael from UK and Aus ® 09/22/2005, 08:06:01 |
I am about to do my first flight since being diagnosed. I was wondering if anybody has any particular experiences with BEB and long haul flying.
I am going to Australia from the UK so it is about 24 hours.
Michael |
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Posted by: June in Toronto ® 09/22/2005, 12:01:29 |
Just wishing you God speed Michael - I don't fly more than 7 hours at a time usually. I'd just say that you should drink lots of water, no caffeine or alcohol (usual flight no no's if you want to adhere to them) and when resting, put a good lubricant in your eyes and cover with an eye mask. Ihope it works out well for you. June in Toronto |
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Posted by: judith k ® 09/23/2005, 13:12:57 |
Hi,
I have flown 24 hours and more-- last December I did it; this was after my first round of botox (50 units), which didn't seem to work, and it was a horrible experience. It made everything worse--the fatigue,, the stress, the lights in the airports. But then I knew next to nothing about bleph, ie didn't constantly put in eye-drops, use a mask, keep eyes moist, etc. Recently I flew about 4-5 hours-- even that was somewhat irritating, but I'd had botox that was a higher dose and working pretty well, etc. The dry air in the cabin is always going to be a problem. There are these premoistened washcloths you can buy (in drugstores, etc) that can be warmed in a microwave, I've sure the cabin attendants would do that for you. Or just bring a washcloth, wet it, and ask them to warm it (not too warm!) and warm and moisten your eyes occasionally. Keep your eyes closed as much as possible. I fly long distances about once a year (ie at least 24 hours), including to Australia, in the past, before diagnosis, so I know what it's like; but I didn't go on a long trip this past summer because I was so nervous. However, I will do it again and feel better prepared now. The tips on this bulletin board I have incorporated into my trip plan will help. If you have a stop where you can get off in transit and walk around, then do it. Some airports have rooms where you can take a shower. (Also there are programs where you can pay for a one-day pass for business and first class private lounges/ clubs-- like American's Admiral Club-- where you can shower and relax. I hope to do that next time I take a long-haul. A shower really helps.) Good luck! Judith |
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Posted by: Moderator-JB ® 09/23/2005, 14:51:31 |
Michael, Are you piloting the aircraft or riding as a passenger? Judy
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Posted by: Ann Doyle ® 09/23/2005, 16:01:58 |
I tell them in advance that I want to have a wheel chair meet me. Not that I can't walk but I am usually unfamiliar with that particular airport. I tell him to take me to the bathroom and wait. Then I tell him to take me get something to drink--caffiene and something to eat if I am hugry. Then if I transfer he can take me there or if not , to the baggage dept. Usually I am OK and someone is there to meet me so I give the man a tip and a thank you. It has worked well for me every time and they are there waiting. Ann Doyle Modified by Ann Doyle at Fri, Sep 23, 2005, 16:21:36 |
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Posted by: Michael from UK and Aus ® 09/24/2005, 01:18:22 |
Thank you for your comments.
I will be a pasenger. This is a trip I do at least twice a year. My main concern since having BEB is the dry air in the cabin and the lack of sleep. Since being diagnosed I find interupted or lack of sleep to be an issue which significantly increases BEB related symptoms. Michael |
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Posted by: Ann Doyle ® 09/24/2005, 15:12:18 |
Some of the meds prevent sleep plus we are not as active. I was a runner and fell asleep every night for 15 years at 8 PM unless their was something extremley special. I got up at 4 AM. I liked that schedual. Now I don't know what to expect. If your druggist gives you a print out, read it. Some of the drugs make you short tempered and impatient. Not too many pluses except that you can see.
Boy! Everything I am writing is down today. That is because Notre Dame is playing and it is not being televised. That has only happened once before since we have had TV. I've been a fan since 1937. Sat on the 50 yard line 3rd row in 1950. I was dating a rich kid. Ann Doyle |
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Posted by: Rosie ® 11/12/2005, 12:50:42 |
I am interested to know how you got on. I am taking my family including my son,Christopher to the DR from the U.K on the 28th November for 2 weeks and am a little concerned about the long flight, as this is the first time we have flown for approx 9hrs. I know tiredness makes Christophers` blinking worse so I`m hoping he can get some sleep on the plane.Although as he is a plane enthusiast I know he will be giving me a run down of how high & low the plane is going. Did you find anything helped.I would be grateful of any tips? |
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Posted by: Michael from UK and Aus ® 11/12/2005, 16:48:56 |
Rosie, I am now in Australia.
It was noticable that when I got off the plane and into the terminal things quickly got worse. Hope you have a good trip Michael |
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Posted by: tomspasm ® 11/14/2005, 14:41:29 |
Hi Michael, Very interesting to see someone else have the same experience. In my case, what usually makes the difference in my condition is whether the doors to the plane are closed. In other words, you say that "it was noticeable that when I got off the plane and into the terminal things got quickly worse". My experience is usually that as soon as the plane door opens, my condition gets worse, although it certainly can deteriorate further in the terminal. Either way, it is apparent from your posting that you are reacting to things in a similar way to me. I will e-mail you some "tips" that have helped me minimize spasms, perhaps they'll help you as well. I am flying from Florida to California this week. Tampa airport is horrific for me, then I'll be going thru an airport I've never been to, Salt Lake City, so it will be interesting to see how I fare in that airport. I am flying into Palm Springs, a small airport that doesn't give me much of a problem.
TomSpasm
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Posted by: tomspasm ® 11/13/2005, 13:09:11 |
Hi Rosie, I'll be real curious to see how your son does on the plane, please report back to us how he does. I just read with extreme interest Michael's story about how his condition was noticeably better on the plane. I'm flying across the U.S. this week and dreading the airport time but knowing I'll be fine in the planes. The best advice I could offer would be to dress him in 100% cotton clothes. Wool would also work, but I find the synthetic materials like polyester, nylon, rayon, etc. cause my eyes to spasm. Socks are the hardest item to find that are 100% cotton. I also can't advise specifically on footwear, because the way I choose shoes is to try them on in the store and if my eyes start spasming, I don't buy them. As a general rule, the more natural material the better I suppose. I've had good luck with deck shoes or Topsiders. Tennis shoes are a crapshoot, the more modern they look, the more likely they will cause me problems. But shoes can make a huge difference to my eyes. Anyway, I hope he does well on the planes, let us know. TomSpasm
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Posted by: Aphair ® 09/27/2005, 17:36:11 |
Michael, I still do quite a bit of flying and while it is not for much more than ten hours, I have not had any problem I usually double up on my meds and that makes me pretty drowsy so I sleep most of the time on planes. It drive my wife crazy as she hates to fly and can't sleep. Every once inawhile she will nudge me just to wake me up to talk to her. I will usually wike with very dry eyes but I just put in some drops and I am fine. I actually would say that I am better off when I am in the air. The airline terminals and their bright lights are a different subject however. I have trouble even waling there and usually have to be driven around. Alan |
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Posted by: tomspasm ® 09/28/2005, 10:30:50 |
Very interesting to hear about Alan's experience, it is similar to mine. One of the hardest things for my wife and I to understand when my problems first started (mostly eye spasms then) was the contrast in my condition from the airport (terrible) to flying in the plane (excellent). We were in the first stages of understanding that I seemed to be reacting to "electrical things" like fluorescent lights, vacuum cleaners, electric ovens, etc. But we couldn't understand why I would have all kinds of problems in the airport, much worse than at home or driving to it, still have significant problems when I boarded the plane, but then once I had been sitting for a few minutes, suddenly my spasms would disappear and I would be perfectly fine until we were about to get off the plane after it landed, when I would deteriorate. My brother, a career military pilot, was the first to explain why. He said there were 3 reasons my condition was better in the plane. First, the plane itself is designed to stop any outside electrical or electronic interference from compromising the control systems of the aircraft. Second, the various systems within the plane (lighting, food prep equipment, air-conditioning, etc.) are all well "shielded" so they don't interfere with the controls of the plane. And third, when you climb into the sky, you establish distance away from all the man-made energy on the ground. It was from that explanation that we realized that my condition changed dramatically for the better once all the doors of the plane were closed, and deteriorated as soon as the doors were opened back up. The plane is designed to act like a Faraday Cage to keep energy from getting inside the plane and interfering with the controls. I usually fly once or twice a year from Florida to California to visit my family. From my experience flying this summer, it appears that airports have become far worse locations for me in the past year. I experienced my strongest symptoms ever, including my torso being bent over so far to the right that I had trouble balancing as I was walking thru the terminals. We assume there are two possible reasons that airports are now even worse environments for me. The first is that I may be reacting to some of the new security equipment in place which is scanning the luggage. The second is that the original electrical design of the terminal was not set up to handle all this additional new security equipment that has recently been installed and that the circuitry of the buildings is being overloaded. My guess would be that it is probably a combination of the two, since my condition often changes when I move from one terminal to another to change planes. If a neurologist diagnosed me while sitting in the Phoenix or Seattle or Tampa airports, he would report that I have severe Meige impairing my speech and vision, cervical dystonia strongly affecting my neck and right shoulder, dystonia of both legs and feet, and dystonia of the right side of my torso so severe that it impacts my ability to walk. If a neurologist diagnosed me on the plane while in the air, he would be unable to find any neurological symptoms to report. The difference is absolutely mind-boggling. At smaller airports like Sarasota or Palm Springs or St. Pete/Clearwater, my symptoms tend to be mild compared to the major airports detailed above. Does anyone else out there find major airports difficult but flying in commercial jets to be relatively comfortable????? TomSpasm
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Posted by: judith k ® 09/28/2005, 11:19:06 |
Yes!-- I had a long trip last December from India to the US, involving a 7 hour layover in the middle of the night in Amsterdam airport. I literally couldn't keep my eyes open, there was so much bright fluorescent lighting. I would just point myself in the right direction and walk for awhile, then open my eyes again to reorient myself. I was a mess when I arrived here. The flight on the plane itself wasn't that bad, but it wasn't great (it DOES add to dry eyes and fatigue--especially such a long haul), and sitting (even uncomfortably) in a plane for hours in a way isn't as draining as sleepwalking long distances through an airport at 3 a.m. local time!, but if you can't sleep (and I can't sleep sitting up, or unless I pass out from exhaustion) the fatigue increases.
The airports were terrible, mostly, especially the huge international ones. Amsterdam had very high security, so maybe even more eletronics (something I never thought of). So I'm interested in what you said about the 'energy' etc in the airports themselves--that whereas planes are relatively 'shielded', airports aren't (plus, in an airport you can't have some control over the lighting, as you can on a plane). Thanks. Judith K Tip: Last trip I took, I'd had a sciatica attack and so I requested a wheelchair, even though it wasn't a hugely long trip; it made a big different to my eyes: made me less of a danger to myself (and others), and cut down on the fatigue of travelling. So I will now certainly do this next time I take a long journey. Modified by judith k at Thu, Sep 29, 2005, 07:05:11 |
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Posted by: Ann Doyle ® 09/28/2005, 13:47:30 |
LAX (Los Angeles) is the worst in the world. Even worse than Chicago. I refuse to land there. Instead go to SNA which is called John Wayne, Orange County and Santa Ana so it is easier to say SNA. It is much smaller and less noisy and less lighting. Ann D |
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Posted by: tomspasm ® 09/29/2005, 17:02:21 |
Very interesting comment about the wheelchair making a difference to your eyes. I noticed in some situations that I seemed to do better just by sitting down instead of standing. I can't honestly say I have a very good theory as to why that was true, but in a wheelchair, you are no longer in contact with the floor and the wheels are presumably rubber, which would not be a good conducter of any energy traveling thru the flooring, so it is possible that sitting in the wheelchair could have improved your condition for those reasons. I will have to experiment with that the next time I travel, that could be a big help to me! And definitely John Wayne/Orange County airport is less hostile than LAX! Ontario is another Southern California airport I have used many times that also is not as bad as LAX. TomSpasm |
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Posted by: tomspasm ® 09/29/2005, 17:14:21 |
Today while looking thru some old folders from many years ago for something unrelated to this issue, I ran across a posting I had printed out from 1998 which refers to a Blepharospasm Bulletin Board "discussion" from 7/29-7/31,1998 that included "Mike, Carole, Steven, John, Marianne, and Judy" about how some of them "actually felt good on the plane". I had forgotten about that discussion! TomSpasm |
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