Meniere's and Solo Travelling
Posted , 4 users are following.
Hi all, I'm new to the forum and to Meniere's. Started two months ago when I had a sudden ear infection that caused the entire left side of my face to be inflamed (even my gums!). Even after I recovered the dizziness has never quite stopped. I'm currently being investigated for Meniere's and have been prescribed Betaserc and Cinnarizine for one week to see if they help with the symptoms. My vertigo spells are getting quite bad and I have had at least one attack a day for a month now, which progressively gets worse until night time when nausea sets in as well.
I'm so worried because I have a trip planned in 1 month's time. I will be away from home for months and travelling ALONE. Is it still feasible for me to go? I've been looking forward to this trip for ages and everything is booked. Please let me know if the kind souls here have any advice for me!
Thanks for reading!
0 likes, 6 replies
NeddyO nemui
Posted
Your timetable makes it difficult because Betahistine (Serc) needs at least 4 weeks to work and from what you are saying if Meniere's is confirmed you may need a high dose. I hope you have travel insurance in place (and arranged before you first had symptoms) and if you can I would suggest you delay your trip for at least 2 months to give any therapy time to stabilise you. And when you do travel make sure you have all the medicines you need to last the whole trip and carry copies of your prescriptions so that overzealous customs and immigration do not confiscate!!
My experience: started on 16mg tds - reduced frequency of attacks but not severity. When diagnosis confirmed dose increased to 48mg tds which was succesful - weaned off after 6 months symptom free and had a total of 21 months in remission. On return of warning signs late July resumed the high dose regime but had to increase to 64mg tds. Currently symptom free.
Cinnarizine is a antihistamine used for prevention and treatment of travel sickness so it will only help with the dizziness and nausea but not with the underlying condition. When you travel Buccastem might be a better option as you place it under your top lip where it is adsorbed directly.
Bad luck & Good Luck!
nemui NeddyO
Posted
Thank you for the reply, NeddyO, and for sharing your experience. I have not bought insurance yet (I was planning to once I got my pay on the 15th...) so I guess that's just too bad for me. Delaying the trip would mean thousands of dollars down the drain, but I will absolutely look into it if the doctor strongly suggests it when I go for my follow-up.
My current dosage for Betaserc is 24mg twice a day. It helps keep the vertigo to a dull dizziness at the back of my head, but the ringing in the ears seems to get more noticeable. It could be that I'm just thinking more about the ringing than usual, though.
I hope I can become symptom free like you one day too!
JMJ nemui
Posted
Dear Nemui,
I'm so sorry to hear about your terrible ear infection and subsequent symptoms!!! For me, vertigo is as one person on this forum put it, "soul killing"!! Ugh. I can only imagine how you must be feeling, experience bouts of vertigo every day for a month.
I wish I knew how to advise you re: your travel plans. Do you have any warning signs before your vertigo attacks? Or do they simply come out of nowhere? How long do they last? Have other possible causes for your vertigo, already been ruled out?
What a time to have a big trip planned! I can imagine your anxiety about it. Are you getting any relief at all, from your meds? I would think that your answer would rest with how much relief that you're getting from your medication, and deciding if it's actually safe for you to be traveling alone. For me, I always look at safety issues first.
I'm sure other people on the forum will have more helpful suggestions for you!!! I wish you the best of luck!!!
Take good care,
J-
nemui JMJ
Posted
Hello JMJ, thank you so much for your reply.
I have no warning signs before the vertigo, they strike out of the blue, even if I'm not moving or sitting down. The only time they don't strike is when I'm lying down but I can't be lying down all day! Once they strike, they last the whole day until I go to bed.
The doctor is looking into other causes I'm sure, but I don't want to get too excited in case I get disappointed again...
The medicine helps to keep the vertigo to a dull presence at the back of my head, but it's still present, just not as pronounced. Before the meds I was not confident about traveling at all, but now, I think I may be able to handle it. I'll see how this week goes and see what the doctor says in the follow-up.
Thanks so much for hearing me out.
eleftherio33095 nemui
Posted
The numbness over the left side of your face clearly indicates an internal acoustic meatus event, the tunnel in the ear where the facial, hearing and balance nerves pass. I am therefore surprised that your doctors are searching for Meniere's disease. Clearly this is a left vestibular nerve event of some sort.
Eleftherios S. Papathanasiou, PhD, FEAN
Clinical Neurophysiologist
Fellow of the European Academy of Neurology
nemui eleftherio33095
Posted
Hello Dr. Elefherios, thank you for your reply.
I don't have numbness on the left side of my face, perhaps you misread? I stated that I had an infection which caused inflammation on the left side for a while (it has since healed), not numbness.
But I will read up on the events you mentioned and ask the doctor about it in my follow-up. Thanks!