I agree with Clare, go on the cruise and enjoy. She mentioned a lot of great points about why it’s actually a great set up for someone with our condition. I just went on a week’s cruise over New Years. Had a fantastic time. Now, I had a labyrinthectomy last summer so the vertigo is behind me (knock wood) but I still deal with some residual dizziness, likely MAV related. I was worried after the laby I’d be more suseptible to MDDS but nope. And on board the ship’s movement cancelled out most of my usual unsteadiness and I felt great. I did want to give you a heads up about the Scop. Patch. I used one for the first (and only) time when I had the sac surgery. I had it on just before, during and after surgery, I think for 5 days? Or maybe it’s effects lasted 5 days. I forget. I had zero nausea (great) however I got a side effect that I was completely unprepared for. I couldn’t focus on anything up close, especially anything in print. Couldn’t read that whole week. It felt just like when you get your eyes dialated at the eye dr. It doesn’t happen to everyone who uses it but enough that it was all over the internet when I googled it (and someone read it to me lol). I was freaked at first and thought I had a serious vision issue from the ear surgery but once the patch meds wore off the next week I was fine. Just a heads up as I know i enjoyed reading on deck on our cruise.
Also... I would consider bringing the patch with you and only put it on if you find yourself in need. And have access to audio books just in case.
Rebecca, I've taken a few cruises with Meniere's, each of a week or longer, and they are all good memories. I lived in Europe after being diagnosed, and twice crossed the Atlantic by ship. My symptoms tended to flare with stress, and I actually found cruising to be a great relief because of the relaxed and stress-free time. Yes, I was careful with meal choices as I would normally be. The main thing is to avoid foods that may be made with canned vegetables (tomato sauces, cooked beans, etc.); snack foods that are typically salted; processed meats like sausages, lunch meat, bacon and ham; and cheese in quantity. Definitely skip the pizza. Frozen foods don't add sodium in processing, but something like a frozen pizza will have the same sodium overload as a regular pizza. I have not sailed with Princess lines, but in general the food on big cruise lines is good and full of healthy choices. Don't deprive yourself; just avoid the big offenders listed above. I've been to Hawaii, and the food typically emphasized fresh ingredients, which are always an excellent choice. Motion sickness onboard was not a problem for me, even if I had previously been in a flare phase. On one transatlantic voyage we had a turbulent night, and many passengers (including my accompanying young niece) stuck to their cabins, while my daughter and I enjoyed the run of the ship. It's truly the best way to do a lengthy trip of multiple destinations because you don't have to pack and unpack, figure out where to eat or stay or how to get around, and you can define the pace that suits you. It's easier than looking after yourself at home, and a whole lot more fun.
PleaseNoDizzy, Thank you for your input on this. Especially about the patch. I had read there were some people who experience side effects. I even read where some people get land sick for a few days after taking the patch off. You are very kind to give me advice, and to encourage me to take the cruise.
Clare, thank you again for responding. I do think some of the flair up I am experiencing is stress related. But, also wonder if after so many years of not having full blown vertigo, if the so called "remission" has reached it's course. I had to take Meclazine last night for the first time in years. I asked my ENT if after so many years, and the damage the disease has done to my inner ear, if the vertigo does return can I expect it to not be as severe as it was when first diagnosed? He said he could not tell me that. During that time, I couldn't walk to the bathroom, couldn't get around at all, and was violently ill. Lost 60 lbs. in a few short weeks. I had one drop episode and one vertigo episode that lasted several hours. I was so wiped out that I slept for a couple days. So, that's why I hesitate going. If this is just a small flair up that some meclazine can get me through, that's one thing. If it turns into what I went through before, that's something completely different. Yep. Fear is a horrible hurdle.
The recommendation for high-dosage betahistine dihydrochloride is between 288 and 480 mg/day (in patients with severe Meniere’s disease). For tinnitus (and to ward off meniere's), I take 32mg twice a day. If my tinnitus is acting up, I'll do 80mg two or three times a day ... more if I need to. Yes, I will get a headache from 'high-dosage', however, that will pass in 10 minutes. Good fortune to all.
I'm from Europe and when i got diagnosed with Menier's four years ago, the doctors prescribed me high dosage of betahistine (Betaserc 24mg tablets). At the beginning when i had daily strong vertigo attacks, I took 3x2 tablets per day (so 144mg per day) and after few days I was almost vertigo free. Since then i lowered the dosage and now I'm on 3x1 tablet per day. I had no side effects.
My ENT has suggested I do some research about betahistine to consider it to help control the Menier's. I have seen some people report headaches as a side effect. Some of the posts indicate the headache doesn't last too long. I'd sure appreciate a little more input on this, like what people are doing to ease the headache, if anything, and if there are other side effects people are experiencing? If it has helped you, how long did it take? Did you stay on other medications, as well, and have you continued with a strict diet? In respect to the possible headache, I know pain threshold can be a factor, but just trying to get all the info I can on this drug. I have googled and found some people are not receiving any help from it at all, while other's are being greatly helped. I've also been re-reading about the hydrops diet to see if I might need to change things again. I've had Menier's for 19 years. I was able to control most symptoms by becoming very disciplined with low sodium; no coffee or soda; no alcohol; cutting back on sugar, taking a diuretic, and seeing a chiropractor at least twice a month to adjust my neck. The past 12 years, or so, I haven't been so strict with diet that I couldn't enjoy life, although I keep the sodium down to no more than 1500 to 2000mg a day, and don't allow myself to over indulge with chocolate, and restrict coffee to decaf once in a great while. I would have days when the pressure was slightly increased and the tinnitus was worse. But, things would get better again. Even when I was so strict with everything for the first eight years, and completely NOT enjoying life because I couldn't go anywhere with family and friends, without being the stick in the mud that couldn't eat or drink anything, the fullness, tinnitus, and unsteady feeling was with me. So, I didn't see much difference between my symptoms then as I did the past 12 years with cheating, (a little), now and then. But, the past two months the pressure on that side of my head, face, jaw, has become much worse. I have not had full blown vertigo, but, have had several instances where I felt it coming on, or felt I had to sit down. A few times I have taken Meclazine at night before going to bed. But, I have heart PVC's, (irregular heart beat), and the Meclazine has caused that to get worse. I know this is a long post. I apologize. Just trying to find out if the betahistine might be something that I should consider. Thank you for taking the time to read this, and for any input.
I would also like anyone's input on the inner ear injections and other surgeries. Anyone done these, and the results. Thank you again.
I reviewed some of my old health notes - Serc made me quite drowsy. When I stopped it, so did the drowsiness.
I can’t remember if it helped or not. I don’t think the vertigo flared after stopping. I might have just been in one of my natural remissions. Sorry this probably isn’t much help. I still think it’s worth people trying, especially if you can tolerate the higher doses.
Anyone on here have the Meniere's go into the other ear? I'm experiencing the humming and hearing my heart beat in the other ear. For about a week, now.
Rebecca, I hope it’s just a passing thing but search this forum for “bilateral”. Also have you read any of the posts about the procedures? Maybe start in the Database. My right ear has the Menieres, including that pulsatile tinnitus. My left ear sometimes has tinnitus and a deep twitch thunk sound. Tell your doctor about your pulsatile tinnitus - it should at least get you an MRI fast (they want to rule out aneurysm etc).
Just started taking Serc (2x 48pm) - but I am also working with a Naturopath to reduce body inflammation and drain toxins from my body. Has anyone worked those 2 approaches together?
My first Vertigo attack actually happened on a cruise - but I have a feeling it was not related. We had driven 2.5 days to the cruise ship, I had eaten badly for 4-6 weeks before hand, too much wine, sugar, carbs, salt.. you name it. After vomiting for a few hours the first night, everything was perfect on the cruise. I did once in a while take a seasickness pill (the staff handed it out) but more as a precaution. The fresh air and sea made my ear feel clear, less tinnitus. It was amazing. And I didnt have the greatest diet on the cruise either. I do recommend now walking the staircases - they are very windy and I remember that making my first attack way worse (while trying to get back to the room to vomit)
Rebecca A follow up re: symptoms in our good ears. In spite of occasional clicking, and on going feeling like my tinnitus has been in my good ear for months ... hearing and VNG normal on my good side! Yay. Also thanks for sharing that Meclizine made your pvcs worse - I have them too, so will watch that as I try Meclizine. And to all who have tried serc... I told Dr House that it made me drowsy. He says he’s never seen that before. Anyone else experience drowsiness with Serc?
AnneT, I see that you are posting on several posts, but are missing the crucial one. I have Menieres and stopped taking Serc 9 years ago. They prescribe it to open the drain channel for the ears to help get rid of the fluid buildup in the inner ear. I have been free of Menieres for those 9 years - no dizziness, no vertigo, no nausea, no vomiting, no spinning head, no Tinitus and no further damage to my hearing. My life is back to normal. Please, please read my post in this blog called The Cure for Menieres. We are up to 55 posts and several people have followed my post and are finding their Menieres is fading after a week. Read it - it will change your life.