A dear friend of mine 340 miles away is having a crisis. A group of friends are getting together to show our love, and make a plan of support. I really want to be there. I haven't gone on a long drive for over a year. I am doing much better because of AVs and getting the MAV and BPPV figured out. I have great ear plugs that help me with the pressure. It seems doable, and I so want to go. In fact being in a car by myself sounds like it might be a good time to reflect a bit and have a nice change of pace. Those drives used to be like that. But then I started thinking, what if it doesn't go well? What if I get down there and it's bad and there are meals that aren't right and it's worse and then I have to come back? What if the dizziness comes back? I'm feeling really sad about it, but I'm thinking maybe it's not a safe thing to do. I hate that even when I'm getting better this disease is limiting me. Anyone who limited themselves from long car drives and then was able to get back to them?
I've traveled 150 miles each way in one day as a passenger. It was up through the mountains so the elevation kept getting higher. I was okay. I chewed a lot of gum. In my mind that helped. Have a plan B.mremember that stress for many of us makes it a lot worse. Are the others aware of your situation?,a little support goes a long way. It's a tough decision. I wish you well.
I just finished a long car trip in Oct and had no issues. For me the big thing is how you feel when you are ready to go. I have learned not to dwell on the what if's...I would miss everything if I focused on that. Reality is that even IF you started to feel bad, just come up with a backup plan (somewhere to stay, someone to help you). Then, take a deep breath and jump in.
This is tormenting about this disease, not only does it terrorize us during attacks, but everything we do or want to do is affected by that same terror even when we are not in the middle of an attack.
Thanks so much, everyone. I really appreciate all the comments. It is so good not to be alone in this. nicmger, thanks so much for the backup plan thought. That is just what I needed to hear. It had been in the back of my mind that my cousin lives about 2/3 of the way along the route. I went ahead and called him last night to tell him about the situation and make sure he'd be around. That was reassuring. It will probably be okay, but it's good have back up.
I can't agree more Vicki, that's why the VNS has been such a success for me, not only have I not had a vertigo attack in 15 years, but I hardly even think about the possibility of having an attack. That piece of mind provides a fantastic feeling of security. I don't think that any other non-surgical method provides that level of security, no matter how successful it may be, that the VNS has provided for me. Including JOH or Antivirals. Just a few of my post surgery experiences: scuba diving with manta rays in Bora Bora, 7 day Backpacking trip over a 14,000 foot snow covered mountain pass, helicopter trip to an Alaskan Glacier, owing my own motorcycle. The concerts I've been to and been able to enjoy without worry because I decided on the VNS which preserved some hearing in my bad ear. All things I would never have even considered pre-surgery. I am not saying that surgery is for everyone, but if you and your doctor think it might do the trick, and you have the opportunity, go for it, I did and have never looked back!
That's great Chris so happy for you, and you are right even on antivirals I still live in fear, not as much, because my vertigo is under control but its still lurking in my mind because at times I know I can be close to vertigo if I don't up my dose during certain times (being sick, allergies etc). But for me for now this is the route I am taking. But for those who cant get control over their symptoms no matter what they try, or for other reasons, surgery definitely is an option.
Exactly, on antivirals or JOH you also have to be disciplined to be sure you don't miss a dose or a regimen item for fear of the ramifications if you do. No worries like that with my VNS.
But if the Meniere's symptoms one had before the vestibular nerve was sectioned (the VNS surgery) were caused by a herpes virus, that virus may still be present, although inactive. There is the distinct possibility that sometime in the future the virus will become active in the opposite ear, with the return of symptoms. A second VNS will cause deafness, so some other therapy (proably antiherpetics) will be chosen. The point is this. Although vestibular nerve surgery does often bring substantial symptomatic relief, it is not always the end of Meniere's problems, as merely sectioning (slicing) the vestibular nerve does not suppress or eliminate any future viral activity. Personally, if I were to have had a VNS (I didn't), I'd thereafter be popping 500 mg of lysine each night before I went to bed, to help suppress any new herpes virus lesions or activity in the remaining good ear. --John of Ohio
Hi Bythebay If it was me I would first of all take more time with the long drive, going and coming back. Do it in stages. I would also have some medication like buccastem to give me confidence. Buccastem can stop an attack or prevent it even happening. Not sure where you are from but I think valium does the same job. Although I am well I don't like driving for a long time particularly all in the one day. Probably in my case more to do with age as I can't drive for long periods like I used to. I have a 300 mile round trip next week to attend a 4 hour meeting. I will come back the same day but I will take my time particularly coming back, taking plenty of breaks.
i can drive,but when i am stuck in rush hour traffic on the highway i do get anxiety and very nervous. i live with my parents and if i have to go long distances or overnight my mother or father always come along.
Nothing is guaranteed in life, I could go bilat tomorrow, but if I do I'll still have these last 15 years of being vertigo free. We've also had this discussion before, we still do not know with 100 percent certainty that HV is the sole cause of MM. My surgeon told me that my balance nerve and facial nerve had adhered together, for all I know that was the cause of my MM, and therefore the surgery may have been the one and only thing that could have cured me. Many of the stories I've heard about people going bilat after a VNS has indicated that the symptoms were not as bad as they were pre-surgery. And the VNS does preserve some hearing, it has been documented that people who lose both ear's vestibular systems can still live fruitful and vertigo free lives. The VNS has not only given me the 15 years of being vertigo free, it has also given me the piece of mind that no other non-surgical treatment can provide, I also have no diets, regimens, or medications that rule my life. Finally the opportunity to live my life without the burden and restrictions that MM imposes has been priceless.
Just want to report in that I made the trip, and all went fantastically. It really helped me have peace of mind to have some back up plans in place and to be prepared to take it really slowly, but none of that was necessary. One of the extra bonus ear issues I have had is some problems with my ear getting totally stuffed with changes of altitude. It is worse when the aural fullness is worse. I checked out terrain maps for the drive ahead and wore these wonderful ear plugs (http://www.alpinehearingprotection.com/earplugs/flyfit/) for large chunks of the drive. I drove very steep parts in the slow truck lane and pulled into turnouts when I had the chance to let my ear equalize. I had a few moments when it stuffed up, but then it cleared pretty quickly and well. (It clears so much better since I started the AVs.) Also on the trip I noticed how I could hear the music in the car in stereo, and a couple times friends were on my bad side in loud places and I leaned over to hear them with my "bad" ear, not turning my whole head to my good ear like I was doing a few months ago. It is just so amazing and wonderful!! Thank you for the support.
Bam, You nailed it Chrisk the one think i never worry about when i leave in the morning is "am i going to have and attack" "are these antivirals, joh supplements going to work today" "if i start to feel funny what will i do, who will i call, can i get someplace safe ect.." I would get another laby tomorrow morning if i went bilateral today and use a CI to hear. I have promised myself i will not go back to living in fear, with my head in a toilet in a state of constant worry and anxiety. there is a reason God gave us three balance systems and we only need two to live and function. (the ears, eyes, and feet/leg muscles/propreception). I would be be better off using a cane or scooter live my life than spending it on a bathroom floor afraid to leave my house. No Thanks! As Larry/Hurricaneone once told me "do not let menieres control your life"
That's great news bytheBay! Since being on JOH and valacyclovir, I feel that pushing the envelope a bit is healing the fears and loosening the limitations enough to go out and enjoy life. Now if I go a bit too far I may need to compensate the next day... but learning the edges and not to live so much in damage control which is very liberating. I am finding that as long as I can engage fully in life, and even tho the MM symptoms drive me nuts sometimes, the energy moving through a strong healthy body make this damned thing livable.
Thanks, bytheBay, for the info on the ear plugs. I checked out the website and will look into it in more detail later.