For the past year since I have been on disability (or trying to get on disability) I have been rather careful about driving anywhere unless it is relatively close to my home. There were times when I had to drive farther than that and I got through it but it certainly wasn’t a comfortable drive. Probably the thing that I worry about the most is having a sudden attack without any warning. It is bad enough if you are just riding in the car but when you are driving its really scary.
Last Sunday my family and I decided to drive up and see my wife’s mother who lives over an hour from us. I don’t know what came over me but I wanted to drive at least going up to her house and my wife reluctantly agreed. I guess I just wanted to see if I could do it. The drive was pretty good there wasn’t as much traffic as I thought there would be. Most of the drive was on 4 lane interstate so there wasn’t much stopping and starting until we got closer to her mother’s house. When we finally came to a stop light I slowed down and I could feel my head getting dizzy and it also seemed that my body was still moving. Luckily the light changed and once I started to move again things became okay. We got to her house with no problem after that.
Looking back I should have never driven that far and in the future my wife will take over the wheel.
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I got a new job one month ago. A dream job, really, except for one thing; it's 20 miles from home. I nearly turned it down for that reason only. I'm glad I didn't because I'm learning so much and making good money. But I'm afraid of losing the job because of Menieres. I have been able to set up an environment to work from home on dizzy day without ruffling any feathers at work. But the problem for me is the drive. Most days don't start out as dizzy days so I'm obliged to drive to work. I'm trying to get into a ride share or van pool so I don't have to drive. Until then, I leave early and drive on surface streets in the slow lane even though the highway would be so much quicker. But I'm afraid to take chances so I don't. I've scouted good pull-over locations along the route and put together a Surviving Menieres in the Car kit. Not ideal but you do what you must to survive.
I had to laugh when I read Big Daddy's post.
I also had a "Surviving Meniere's Kit" that I kept with me (hid) in my purse at all times.
It consisted of~Valium, Promethazine, bottled water, and barf bag. Glad to know I'm not the only one.
As far as driving goes..sometimes I was ok on the road, but most often it was just too much turning & motion for me.
I had a very bad no warning attack on the freeway once..after that I drove very seldom & only local because it was so scary and stressful.
Now that I am not having the violent vertigo I am back on the road again..but all the movement does still bother.
Worse is how bad my eyes have become. They just don't seem to track correctly, or hold still. Sort of jerky. Weird. Not great for driving when it happens.
Well.. no pleasure drives alone for us Menieres folk. Designated drivers when possible. Stay safe all!
I've only attempted a drive like yours once & that was enough for me as well. Didnt have an attack but sure felt like 1 was coming.
Last week I rode with the family to the beach,just a couple of hours away; while swimming somehow I forgot & put my head under water still dealing with that mistake lol . Any way bout 10 minutes from home an attack hits me WHAM I'm sicker than a dog, my daughter's friends are wondering what's wrong with me & the hubby is saying we're almost there over & over. Not a pleasant end to our mini vaca to say the least. Thankfully I wasnt driving.
Having a meniere's survival kit is a great idea! I think that everyone that has this disorder should keep one handy.
David
My Meniere's survival kit has only a couple of things in it: valium and an anti-emetic. Aside from that, I might include a bottle of water and an airsick bag. What else can people think of?
Lauri, it seems you and I are on the same track about that!
To Peggy~good minds think alike!
Seriously..everyone should have a kit with them just in case.
Also a cell phone.
In my earlier post I mentioned that I once had a terrible attack on the freeway.
That time I managed to white-knuckle my way off the freeway, but did not have a cell with me to get help, so I was stuck pulled over in a parking lot for two hours till the Valium kicked in enough for me to slowly cruise home.
I am thankful that no-one came up to the car because I could barely speak I was so sick, and I'm sure they would have considered me a drunk and called the cops.
I think it would be a terrific idea if people with Meniere's were given a MED-ALERT tag or bracelet they could wear, in case something like that happens to them.
I started have trouble driving almost 10 years ago. It seems that if I have a definite outside edge I do better. I have not driven on the interstate since about that same time. I panicked when my job sent me 35 miles away each day. I protested, but got nowhere. It worked out fine as I drove a back way.
My "attacks" seem more subtle than most, at least after my initial problems approximately 10 years ago. I do have a couple of questions though. The main one right now is: Do you have general nausea most of the time? It seems to be OK for me when I first get up in the mornings, begins a little later and then lasts until late afternoon. Has anyone alse experienced this?
I work on a computer all day and don't feel that this helps. I actually have two computer screens and must look down at paperwork and look up over and over to input info. in the screen (or screens). Whew! Nausaa!!!!
Lauri, I agree about the Med-alert tags. I am also afraid if I ever get pulled over during an attack they will take me in for "drunk driving." And I also limit my driving in a big way.
SarahG, I'm sure the computer is what's causing most of your nausea, as your eyes are constantly adjusting to try to keep you on an even keel. Have you tried Meclizine? My doctor advised me to try that, but be warned: It made me VERY drowsy. But I'm thinking a motion sickness pill might help you with that.
I feel dizzy continuously now, with some nausea if I'm moving around a lot or have to look side to side a lot. Grocery shopping is now a genuine purgatory for me.
I'm trying to figure out how to post a comment and hope this works. I am at the end of my rope with Menieres. I continue to try to work and have two children ages 9 and 6. I had a terrible attack today, my worst so far. I had my first dexamethasone injection 10 days ago. I don't know how soon I can get another or if it is helping or making thins worse. The past 4 days have been bad, although today put me over the edge. I feel like I got run over by a train. I'm afraid of the gentamycin injections although already have 50% hearing loss. Thanks for listening!!
Anne, your post worked fine. The dexamethasone should help somewhat, as an anti-inflammatory. It's intended to decrease the swelling that puts pressure on your inner ear and the vestibular nerve, which is what causes the vertigo response.
I can't imagine what it would be like to work full-time and care for two young children while coping with Meniere's. Do you have an appointment to see the doctor again soon?
The way it works with my treatment is the doctor will try something, then tell me to call in a few days to report the results. If I'm not feeling any better, she will tell me to come see her and try something else. I'm hoping you have a similar arrangement.
Have you recently started Meniere's? An injected cortico-steroid is usually among the first line of treatments doctors try (along with diuretics), and from there they work their way up a standard protocol of treatments that are stronger but tend to have more undesirable side effects, such as loss of hearing. It sounds to me as if you are at the beginning of the journey. I hope they get it under good control soon so you can go back to a more normal life.
Good luck.
Thank you Peggy. I've had menieres for 2 1/2 years now. I take valium, meclazine and hydrocholathizde daily. I've been to 4 specialists. Everyone has their own "theory" on what helps.
I'm now looking into the Medic-Alert system thanks to these posts with that idea. I think it's a great one.
Anne...I know what you mean about the specialists having different "theories" when it comes to Menieres symptoms and how to treat.
At one point for me it became laughable! Really!(Not at first, of-course, but looking back at it later we just cracked up. You MUST not lose your sense of humor to this disease.)
So it went like this~
The first Dr.: Yes, you have Menieres..learn to live with it. (charged me $250.00 cash for that bit of wisdom)
The 2nd Dr.: At least he helped by prescribing a better diuretic, and Valium..but he just kept telling me it would "burn out". Naturally it didn't...just became worse and I lost my hearing in the meantime.
The 3rd Dr.: This is the Surgeon at our Major Medical Institute. Excellent Surgeon who did a great job on the surgery..but in the Doctoring department after it...not so much.
HANG IN THERE! Stand up for yourself with these Physicians, and change Doctor's if you feel you need to.
I think all my Doctors may be disturbed by me because I am researched in my own disease, and stay very involved in my own care. ( Menieres since 2008)
Too bad. It's my body, and I know they can't truly understand all that we experience with Menieres.
At least we can understand what each other goes through..and you can always check with David or anyone else who posts, to see what they've tried that did work for them..and what didn't. I know it really helped me!
Take care~
Anne, all of those are pretty standard approaches to Meniere's on the low end. The real problem is that every case is different, and there's no treatment that works for every patient. So most doctors start with the medications you are taking now, which are pretty harmless, before they try things that have more dangerous side effects such as hearing loss (gentamicin, labyrinthectomy, etc.).
It's really frustrating, I know. I've been through the entire range of treatments, and although I haven't had a severe attack of vertigo/nausea in a few months, I'm dizzy every day and beginning to think I have Meniere's in the ear that so far has not been affected.
Short story: Meniere's is a bitch, and an unpredictable one at that. :(
But sometimes a treatment does work, and sometimes you will get a remission that lasts for months or even years. Those are the things to hope for.
Lauri - What surgery did you have?
If I remember right, Lauri had the sac decompression surgery. Is that right, Lauri?
Anne~
I had the Endolymphatic Sac Decompression surgery. It doesn't destroy the balance nerve.
You can get info online about it...there is also a video of the procedure.
Less invasive than the other surgeries, and if all goes well you come home the same day.
I felt fine when I woke up from Surgery..but I would advise having it done at a major hospital by a Surgeon who specializes in these.
It takes a few weeks for the other ear to learn to fully compensate, but you are functional during that time.
I listed in another post to you that my surgery was done at the end of January, and went well.
It DID stop the rotational vertigo. (happy days!)
I would recommend it if your Menieres attacks have become constant and extreme.
They say it has a 65-70% chance of working. For me it did.
I had already lost the hearing in that ear, so I had no concerns about the surgery causing any further hearing loss. It may be that the sac decompression could disturb hearing, but I'm not certain, so check into that.
I've since begun having vertigo again, however it seems to be coming from my "good" ear this time.(bummer)
I see my Doctor tomorrow so we can discover if I have gone Bi-lateral. Hope not!
Best of luck to you!
Lauri, good luck with the doctor's visit. I have been too chicken to make the appointment, even though I am sure I need to do it. I'm sure I have some hearing loss on the right side now, I definitely have tinnitus there now, and last week I had two small episodes of vertigo. That seems like a no-brainer, right? Yet I hesitate to go out and get it confirmed or denied. Denial much?
I made the appointment. I have an ENG and a hearing test for my right ear on Friday. :(
I ordered Cinnarizine today although I cannot get it here in the US. I got it from a website and am hoping for good results. I'm going for another dexamethazone injection tomorrow. Not looking forward to it!
Hi Everyone~
Well..got the diagnosis today that I have gone bi-lateral. Bummer!
I still have hearing in that ear though, which I am sooo pleased about...and pray it hangs in there.
Not so thrilled about the vertigo attacks having begun again.
Also not so thrilled that my Doctor feels there is nothing more he can do at this point except to refill my anti-nausea and Valium meds, and re-check my hearing again in 3 months.
(Geez..here we go again! Feels like I've been thrown to the wolves~ I am not one to easily accept that there is nothing else that can be done. I'll find something.)
I seriously may have to go after SSD now though, if the attacks don't lighten up soon.
For now I will battle to continue to receive medical from the State w/out being cut off again.
I am bummed, but calm.
I have Faith..I will figure out what's best for me, and continue to enjoy life as it comes at me. (Hopefully with as little vertigo as possible and a sudden unexpected wealth dumped in my lap. :)lotto??? hee hee
Lauri, so sorry to hear that diagnosis. :(
A word of advice: Apply NOW for SSD. It can take literally years to wend its way through the red tape and come out with an award of benefits. As long as you are unable to work and there's no sign of improvement down the road that you can see, you should be going after SSD.
I believe the criteria are a disability that prevents you from working now and is likely to keep you from working for at least a year. I'd bet you meet those criteria.
I'm glad you are keeping a strong attitude and plan to forge ahead and find solutions. That's what you need in battling Meniere's, as you know only too well.
I'll keep my fingers crossed for the sudden wealth to hit you. We've gone back to playing the Lottery ourselves. :)
I am so discouraged. I had another dexamethazone injection today. The doctor came across as very discouraging, at least it felt that way. I wish one of these doctors could experience Meniere's so they might have some understanding and compassion. He really does not understand what it's like to try to live and function every day.
Does anyone take Klonopin and. if so, do you take it "as needed" or daily as a "preventative" sort of medication?
Peggy~
Thanks for the support and the advice.
I am keeping you in my prayers and hoping you get only good news at your Dr. appt. tomorrow!
Too bad we don't live close to each other, (I'm near Seattle) so we could start a support group.
Good luck with Lotto!
It IS too bad we don't live closer so we could start a group. Maybe we should meet in the Midwest somewhere? ;-)
My appointment was beyond my best hopes. No Meniere's in the second ear. My nystagmus hasn't changed, although I still have low-level chronic nystagmus. And there's no hearing loss in the right ear yet. So I have no worries about THAT for now, at least.
What is really interesting is the hearing test showed I still have some hearing in my left ear. I suspected that before now, even though I didn't expect to have any hearing at all in that ear after the labyrinthectomy. I can't distinguish much using that ear, can't really make out words, but I do hear some sounds.
Anne, are there any other ENT specialists in your area you could see? I'm very lucky in that my doctor is not only a great doctor, but she's also a very understanding and responsive person. It helps a LOT.
Peggy - That's great news about your appointment. I am so happy for you!
I've already been to 4 ENT/Otolaryngologists so I really don't know who else to try unless I go out of state. I think I have a plan for myself though. I'm going to do what works best for me and just hope someone will agree to prescribe for me the medication I need everyday even though they think it's addicting. It's not addictive if you need it for the right reason!!
Thanks, Anne. Honestly, I think I'd be happy taking valium every day to control the vertigo, but the problem is that you plateau on it. You have to take more and more of it to get any effect at all. That's where the addiction comes in for that medication.
Just be sure when you talk about addictive medications that you aren't looking at side effects that are just as bad as Meniere's. I'm not familiar with Klonopin.
If I were you, I think I just might try going out of state. I had already decided that if I found out I had Meniere's in the other ear, too, I was going to go down to Johns-Hopkins for a consultation. They are apparently the state-of-the-art place for Meniere's treatment.
Good luck...
Peggy - That's funny that you mention Johns-Hopkins because that's where I'd go. The other option is Boston. You're right about the valium because I do need more and more to control it. That's exactly what's happening. Klonopin is a longer lasting benzodiazapine so it stays in the system longer without needing to take another. That's my next trial.
Frustration with menieres
David - I laughed when I read your post about a doctor wanting you to come in during an attack! That is impossible...how about if the doctor comes to the homes of those of us with menieres and sees what we go through. Better yet they could experience it first hand themselves and then MAYBE they would understand the hell that it is!
Hello everyone, I'm new to this forum. My husband has a severe case of Meniere's (although, from what I read, they are all severe). This past spring has been extremely trying with almost daily bouts of debilitating vertigo. Worried about keeping his job, he decided to undergo the Labythecotomy surgery 2 weeks ago. He has been able to get around since the surgery, but his doc is encouraging him to get behind the wheel. My husband is nervous about this. We go for drives every other day and they make him feel light-headed... but, thank goodness, no vertigo.
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