I've been on antivirals for about 6 months and was doing SO well until I went to Europe for two weeks. My ear has been a complete mess ever since I returned last weekend. Tinnitus, hearing loss, hyperacussis, lightheaded, etc. I know my sleeping patterns were off, I probably ate too much salt and I did a lot of flying, but it's not getting any better and actually getting worse. Has anyone else experienced this after traveling?? Any suggestions would be greatly appreciated!!
Others will likely respond but I can say that stress causes my symptoms to flare at times. I have not boarded aircraft since my diagnosis, but imagine that pressure changes in aircraft may cause issues for Meniere's sufferers.
If there is any middle ear involvement, the flying could have set it off. In that case a decongestant might help. Otherwise, allergies? Have faith, give your body time to get back on track. I think it will recover. No caffeine increase? Have faith, be patient.
You might have picked up a virus along the way that you're not used to. I would personally increase the antivirals dose for a week or two. And add lysine to the mix at 3000 mg per day t.i.d on an empty stomach.
I can't offer too much advice but I am also heading to Europe for 2 weeks early this summer and somewhat nervous about it -- with the MM. In general, plane travel doesn't seem to affect my symptoms, in fact I tend to feel better up in the air. I think the sound of the engines is soothing to my tinnitus. And I live at high elevation so maybe it isn't as hard on my ears as it might be to others? But the dramatic shift in sleeping and inevitable overload of salt in eating out a lot could really be problematic. And not a lot of daily downtime to rest. What are we to do though, never go anywhere? I have a family with three young kids and I can't put the brakes on our lives over this stuff. It's already messed with my daily activities enough...
I know, it's so frustrating! I've been taking the max dose of antivirals and lysine and back in my normal routine, but the mm isn't settling down. I love traveling, but after this, I'm hesitant. I had been symptom free for a good three months until now and am at a loss as to how to reverse it!
My MM began in Dec. in 2011. By the beginning of April 2012 I was doing much better--no vertigo spells, tinnitus gone, hearing recovering. I took a cross-country airplane trip and the tinnitus got so bad I was just about losing my mind. It was like a loud alarm. I could hear it over the airplane noise. I have had almost continuous tinnitus since then. At least it is a white noise I can live with (it settled down some months after the trip and then anti-virals were a great help). I now know that I have hyperacusis reactions from changes in air pressure. Even going up in the hills where I live causes problems unless I use ear plugs intended to slow air pressure changes for flying and avoid steep hills. It is a huge limitation. I have missed major family events I'd love to be at, and I used to love traveling. I've done a little train travel in these years because the elevation changes are slow--so far so good, but I haven't tried much elevation with that. I want to explore travel by boat. It is a huge loss, but better than living with the symptoms it creates. I know other people with MM who have no problem traveling. TLB, I had a big MM flare up last Fall when I was under a large amount of stress over a prolonged time period and didn't think to up my anti-viral dose. It took a while to get it to settle back down again, but eventually it did. I am hopeful for you that with some time with the max-dose antivirals and lysine will help since they helped before. (It did for me.)
Bythebay, hyeraccusis is definitely the worse symptom I'm currently dealing with! Not only does the noise hurt, but causes lightheadedness as well! I hate the tinnitus and the pressure, but I feel like that is tolerable. I'm truly praying this is short lived after resuming my normal routine, but as with any flare up, I'm petrified it's a permanent development. Outside of taking the max antiviral dose and going to the upper cervical chiropractor, I'm not sure what else to do?!?!. I did return home to a lot of new stress as work which is not helping at all!!! It's so frustrating and depressing!
Lack of sleep is a huge trigger for me and when I go on vacation I don't always stuck to my normal sleep patterns. Also jet lag and time change also contributes to lack of sleep so I try to set aside time for naps or just some quiet time to catch my breath.
TLB, in addition to what you are currently doing, I would add watching the Arginine intake. Back in 2009, I emailed JOH and asked him how he "knew" the cause of his Menieres was viral and he responded with a story that also convinced me. He said that after being on his regimen he was symptom free for over a year when the symptoms suddenly returned. When he retraced his steps he found he had added L-Arginine into his diet as a supplement. He investigated and found that Arginine was a herpes virus instigator. He removed it from his diet and quickly went back to symptom free living which I believe he still enjoys today. Recently I have had a re-occurrence of symptoms and I believe it may have been caused by an increase in eating nuts (cashews, pistachios) which are high in arginine. Good luck and stay vigilant.
TLB, How are you doing now? Have things calmed down since the trip? How long did it take? I do think taking Lysine and other supplements on the JOH regime helps. Teesdale--interesting that you mention cashews and pistachios--those are the only two nuts that I eat (in moderation). On this chart, they are better than the other nuts: http://www.herpes.com/Nutrition.shtml.
Bythebay things are not back to normal unfortunately- I've had 2 steroid injections in. Y ear and am scheduled for allergy testing next week. I'm doing the JOH regimen, max does of antivirals, diuretic, and going to the upper cervical chiropractor. I honestly don't know what else to do!?? I've never heard of the arginine thing before but I'll definitely look into it! I called a holistic/naturopathic dr and debated on looking into that, but it's $2500 and they don't take insurance. I'm trying to be patient, but I'm getting to the end of my rope (if I'm not already there)! Considering I was doing SO well, this is beyond frustrating!!!!
TLB, I am also doing all of those treatments you mentioned and I was doing really well back in March and early April and recently I feel like I'm back to square one. In my case I had a change of manufacturer on the generic anti-viral which I'm still not sure isn't the problem. You may want to check yours and if you have Mylan it is almost certainly inferior. But anyway, today was a good day. I even managed to run the Broad Street Run today which is a 10 mile run in Philadelphia despite not being able to train much over the past several weeks. I had my meclizine pill with me and knew if I got dizzy I was not going to let that stop me. Thankfully I did not have to use it. My point is that there are peaks and valleys with this thing and you have to look forward to the peaks. Hang in there.
Sorry to hear that, TLB. I had a bad flareup in November, and it took several months for things to get back to where they were, but they did. I hope you are headed that direction.
I never have a problem flying.... getting enough rest and being able to eat well is usally a battle but if a restaurant cannot accomodate me I always just end up with a grilled chicken salad with oil and balsamic -- if it is a restaurant where they pre- prepare their chicken then I just forgo it and try and get ice cream later I am going on family cruise in July for 9 days..., My first cruise ever and definitely not my first choice for a vacation - but when the grandparents say they are taking you all on a cruise- you go..... So any tips that anyone has for a cruise would be great.... kinda freaking out a bit... I figure either I will be fine - or I will lose 20 lbs and not get sunburnt... win / win right?