I'm just curious if there is a connection to motion sickness and Sjogrens. Cruises are a big NO for me. I become sick if I ride in the car with anyone. However, if I am behind the wheel, I don't get sick. When I fly, I wear the accupressure wrist bands and have the air vents above me blowing down on my face during the entire flight to fight off the nausea. It's been years since I've been able to ride a roller coaster or watch an IMAX movie. It's been this way most of my life. I've been told it improves as you age. Not happening!
I was out of state last weekend and was on an airplane, elevators, and escalators. Got home Tues and here it is Friday. I didn't really suffer any real nausea this time, but here it is 4 days later, and my body still feels like it's dropping when I walk. Does anyone else experience this sensation? I'm not really dizzy, but when I walk, it feels like my whole body is kind of rubbery like I'm walking on a bed of foam rubber or something. It's an odd feeling in my head too. I have had times too, like watching a long parade, where things will still be moving horizontally for days afterwards, like the parade is still passing by me.
Anyone else out there like this or am I just the weird duck again??
Take care,
Julie
Sounds familiar. I take dramamine to fly or cruise. It doesn't work 100%, but it helps alot. I get car sick too. I've always had a problem with motion sickness. I don't, as far as I know, have a problem with parades.
Hi,
I'm not sure if it has to do with Sjoegrens..
.Im 39, and I still remember when I was like 7 having motion sickness in my dad's car, whenever we did a longer trip.
I must say, I don't drive, but these days when my husband drives me to doctors in any given morning, I will get motion sickness in the car....not sure if I can blame his driving at this point hahahaha
It is sure to happen to me if I'm on a empty stomach....
MOnica
It can be related to neuropathy. Sea sickness was my first real major symptom of neuropathy....that and the presyncope.
Hi Julie
Yes I get motion sickness, mostly after the car has stopped. I feel that the hand brake's is off and the car is rolling back! I can't stand journey's longer than half an hour and get terrible headaches. Even walking, say in a busy shopping centre, people walking towards and past you, after a while I just feel so sick. Definately sea sick with car ferries but O.K. with small boats. and lifts.....definately get that yo yo feeling with rubber legs!
I would say that I have got slightly worse with age and it comes and goes (no pun intended)! I don't know if its sjorgrens related, I guess I've put up with it so long that I haven't mentioned it to my doctor to consider. I don't take anything for it just avoided situations when feeling a bit off.
I hope you don't have too many bouts of it. Take care.
I get this constantly. Like you, I always have to drive otherwise I get very nauseous. Riding the shuttle to my office at grad school is sometimes a nightmare. In fact sometimes I get motion sickness driving myself around. I also sometimes get sick looking at the cars driving the cross street while I wait at a red light as well. The same things goes for 3D TV I get crazy motion sickness from that now, where as before I was diagnosed I had no problems at all. I'm guessing it's neuropathy as well. This is my biggest problem with Sjogren's so I'd like to hear if anybody else has anything to combat this...I'm tired of not being able to tell people when exactly I can meet them somewhere, as I may have to stop from the nausea and take a break from driving.
I have a severe form of this. My vestibular system no longer functions at all, as a result of the auto-immune attack on it. My rheumatologist classifies it as a separate syndrome from the Sjogren's, but all of these auto-immune things are related.
However, depending on its specific nature, different treatments may be used. In addition to the medication, I do exercises taught to me by a physical therapist who specializes in vestibular rehab. They really help, too.
You may find that meclizine (often sold as Bonine) helps more with the underlying balance problems. Dramamine does not work for me at all in treating nausea. However, if dramamine works for you, you may not have the same syndrome.
You may want to be referred to a neurologist or otologist (ear doctor) who specializes in balance issues. They can analyze what is going on to pin down what the mechanism is that causes you to be dizzy. Fortunately in my city we have an otoneurologist - ear neurologist - whose entire practice is treating balance and dizziness issues. He was able to pinpoint what was going on.
Genko
Take care,
Genko
I used to take otc the motion sickness pills now I put some ginger on my tongue work wonders. I can actually ride up to the mountians without getting dizzy or sick. Try it and see if it helps
Hi all:
I've had motion sickness since I was a little kid. On trips, my Mom would take plastic bags for me to throw up in and Dramamine. That's all they had back then. Bonine is a definite improvement. I can actually take a flight now without pitching my cookies.
My Dad explained that I don't get sick when I drive because a car's suspension causes more sway in the back seat.. My whole life, if I'm not driving, I'm in the passenger seat as I can tolerate that, but not the back seat.
Motion sickness is an inner ear thing. I can't do merry-go-rounds, watch anything going around or even turn around twice without nausea and dizziness. It's sure possible that dizziness can also be from neuropathy. In my case, it's just plain old motion sickness. Don't know if anything can be done about it. Never heard of anything though.
Hope you feel better soon.
Hugs,
LeoLady
Hi Julie, is motion sickness apart of SJS I can't say, and like LeoLady, I've had motion issues since childhood (could never travel in the back seat either without getting sick; drove the parental units crazy).
I too can't travel by boat no matter what I take, my sense of balance goes nuts, and walking on a boat makes me look like I've imbibed a bit too much.
It's funny, it got a bit better as I grew into adulthood, now that I've gotten older, it's starting to return as well. Sometimes just walking down a hall or just sitting still will cause me to loose my balance a bit. Have seen a couple of ENT's and neither could find a problem. Guess I need to see if I can find an otoneurologist in my area, need to figure out how to live with this mess, ugh.
Hi Cactus, I know that feeling of moving even though the car has stopped! Wow, it's so freaky!
Take care of yourselves -
Patze
Hi :)
I'm another one who's always suffered from motion sickness. I can drive without getting sick but I'm a lousy passenger. Can't read at all in cars, planes ot trains. Took me 10 days to get over motion sickness when I travelled with my husband in the Merchant Navy. Last time I was on a ferry I was as sick as a dog again.
Dramamine have never worked for me. I take something called "Sealegs" which helps. I ran out of them when I was at sea and went to a pharmacy in Canada and of course they didn't have any. I asked the pharmacist if there was anything similar from looking at the ingredients on the packaging. He made me up some pills and said that Dramamine were not the same at all. "Sealegs" were apparently much more like vertigo medication.
Take care - Scottie :)
I don't know if any of you watch MythBusters, but they did a show on the 'supposed' motion sickness remedies. These 2 guys who turn green with motion were put in a spinning chair that they made while they tried all these different remedies. Ugh...no way would I volunteer to be a guinea pig for THAT. The only thing that worked for BOTH of them was the ginger. I've heard of this before, but have never tried it. I can't swallow pills though. I wonder if the powder form, like what comes in the spice jars, would work. I guess you could nibble on ginger root too...though I have no teeth for that. I always order ginger ale on airplanes. I can't take Dramamine. It wipes me out for days just taking 1/4 of a pill and it causes my pupils to dilate.
With all the other things I have going on, I guess the motion sickness is the least of the problems (though that's hard to say during the middle of a vomiting attack!). Like most of you, I have learned to just avoid anything that might bring it on.
I am curious now, how many out there with Sjogrens, do NOT suffer motion sickness??
Take care
Julie
Julie,
I use the powder kind I use for spices. I just shake it on my tongue. I use it for my kids too. It has a storng flavor but it is worth it.
I always have motion sickness,even as a child even a ride to the gocery store would make be vomit. My mom always carried baggies and wipes:) Airplanes you name it. I was able to handle a cruise with a presciption ear patch.
Julie...in answer to your curiosity, I'm at least one with SjS who has never had motion sickness of any type, even though I have occasional bouts of severe vertigo.
Both my brothers, and my son, all experienced it frequently as children, but seemed to outgrow it. Ginger in any form always seemed to work for them, and I learned early on to carry ginger snaps, and have ginger ale available.
Scottie, Sea-Legs is aka meclozine or meclizine, an antihistamine, and is used under the name Bonamine, at least in Canada
Thanks Linda :) I must be allergic to motion! :)
You can count me in on the vertigo problems. I have had veritgo problems for years now. And yes, Julie, I always feel as though I'm walking on a mattress. It's quite frustrating, to say nothing of the sight I display when walking from my car to the grocery store. ::) As our Chloe use to say "I'm going to try getting drunk once, just to see if I can walk straight". ;D
I would strongly suggest you talk this problem over with your rheumy. Mine sent me directly to a neurologist. After a barriage of tests, they decided it was Periphral Neuropathy with Central Nervous System involvement.
Please have it looked into.
Pooh
I too have had motion sickness all my life! To fly I use scopalamine patches(don't know if spelt correct) works the best of any of the motion sickness remedy's I have tried. I have also had and still have traumatic vertigo...this is always here to some degree but gets worse with certain movements. I also use the antivert which helps some but nothing really works. My life is always just slightly off balance/dizzy....
Is this related to our sjogrens? I have no idea...but I do have it too! ???
Just thought I'd update what happened to me recently. I just got back from a weekend trip, but whoa did it floor me with a major flare. The weeks leading up to the first flight I had been feeling fine; taking all of my supplements, with no problems driving, no bad bouts of dizziness...nothing. I went into the flight thinking....oh I'm ok now..this should be fine...boy was I ever wrong!
As soon as the plane started roaring down the runway, boom it hit me like a lead brick. I felt dizzy, nauseous, and immense pressure in my head. My face was bright red. Turbulence was a nightmare. It was like one of my worst SJS episodes all over again. I was caught in almost a panic attack sort of state. Thank goodness it was only an hour flight....I don't think I would have made it any further. My neuropathic symptoms continued throughout the trip as I passed from one 'trial' to the next.
First one was a restaurant that was outdoors, which was too hot in the humid summer evening...I couldn't eat too much there from the feeling of overheating. Then the next day, to a place for breakfast where there were flashing lights that made me miserable with nausea. I couldn't even eat one bite. Motion sickness, dizziness all returned. Final day of the trip, a restaurant high in the sky for a spectacular view of the setting sun. Only problem was that the entire restaurant rotated ever so slowly during the duration of the meal. I couldn't even stand 10 minutes in there before I had to ride the elevator back down and wait until the rest of the party finished their meal. Embarrassment aside, it was such a bad experience.
So much for the 'vacation'......more like 'trials and tribulations' if you asked me.
For the flight back home, I readied myself with everything I could. I took a slightly larger dose of alpha lipoic acid, wore accupressure bands on my wrists, took meclizine for the first time in months, had a pack of anti-nausea ginger gum, and acutally was able to make it through without the whole panic attack state. The people I was traveling with said I looked like I was a scared deer in the headlights for the take off though. I survived at least.
But, I think I'm paying the price for it today. Today was the first time in a very long while that I had symptoms of dizziness and head pressure with no discernible provocation. Sad...looks like back to square one for me, after doing so well for weeks and weeks. Good news is I see my Rheumy on thursday so I can impart my experience to her so we can maybe get this sorted out in the end.