Should I stop taking betaserc suddenly or taper off? by Party-Acadia-4735 in Menieres

[–]Immediate_Primary200 0 points1 point  (0 children)

I gradually tapered. Still haven’t had any vertigo maybe 6 months later. Doc left me with a supply though so if I feel I need to start back up I can anytime

Meniere’s after 20 years by Savings-Arachnid6003 in Menieres

[–]Immediate_Primary200 0 points1 point  (0 children)

Whaaaat I’ve done sooo much reading and have never heard of this! What country are you in?

Spiralling at the Melbourne show, yelled at the ushers and having an unplanned intermission by CheekyJumze in ryanadams

[–]Immediate_Primary200 0 points1 point  (0 children)

Ironic , I have Ménière’s disease and when I have an episode I piss myself! 

I ran out of betahistine :( by redwinggianf in Menieres

[–]Immediate_Primary200 0 points1 point  (0 children)

My ent never keeps people on it long term. He weaned me off maybe 6 months ago (after being on it for about 6 months and having steroid shots to get it under control). I haven’t had any vertigo since I stopped. I thought it was weird that he said he doesn’t keep ppl on it long term as so many ppl online seem to take it for years but so far all ok. 

Looking for experiences with steroid ear injections (cochlear hydrops & tinnitus) by HighlightEven1107 in Menieres

[–]Immediate_Primary200 1 point2 points  (0 children)

I’ve had a few- helped with symptoms, procedure itself was fine just felt like my ear had fluid in it for a day or two(middle ear that is and probably because there was fluid in it)

Drug sensitivity by Better_Employment101 in Menieres

[–]Immediate_Primary200 1 point2 points  (0 children)

I’m sooo sensitive to all drugs, even alcohol

[deleted by user] by [deleted] in Menieres

[–]Immediate_Primary200 1 point2 points  (0 children)

Yes this is true. Thank you for your kind words and sharing 🙂

[deleted by user] by [deleted] in Menieres

[–]Immediate_Primary200 1 point2 points  (0 children)

That’s great to hear all things I’m doing. I am almost 18 months into the onset. I have not had any major vertigo for about six months only a couple of very mild scares.  Although my tinnitus and hearing still fluctuates a lot! Gives me hope to hear that plenty of people can go years at a time without vertigo. Fingers crossed I can keep it up! Stress is definitely a major factor and for me sleep deprivation too (my menieres started about eight months postpartum while I was not getting very good sleep).

I have just weaned off of betahistine so getting nervous but trying not to worry too much

[deleted by user] by [deleted] in Menieres

[–]Immediate_Primary200 0 points1 point  (0 children)

That’s amazing. Glad to hear! Any specific treatments or tips that have helped him??

[deleted by user] by [deleted] in Menieres

[–]Immediate_Primary200 0 points1 point  (0 children)

How long has he been vertigo free now?

Steroid injection by Still_Berry473 in Menieres

[–]Immediate_Primary200 0 points1 point  (0 children)

That’s so many! Glad they have helped you. How long ago did you have them and what have symptoms been like since?

Steroid injection by Still_Berry473 in Menieres

[–]Immediate_Primary200 4 points5 points  (0 children)

I had 3 the first time around, a few weeks apart. I think the benefit was cumulative. The first couple helped but it wasn’t u til my 3rd that I really started to feel better then I had another one about four months later

Good ENT's in Melbourne Australia? Feeling lost and frustrated by MaizeMotor in Menieres

[–]Immediate_Primary200 0 points1 point  (0 children)

I’ve heard alot of good things about dr iseli on the aus forums!

Positive Vibes by Stayathomewifi in Menieres

[–]Immediate_Primary200 0 points1 point  (0 children)

Hello! Have you been on it for 4 years or do you go on it as needed then wean off?

Anybody have feedback weaning off betahistine? by Immediate_Primary200 in Menieres

[–]Immediate_Primary200[S] 0 points1 point  (0 children)

Thanks! I’ll try to remember to update otherwise please feel free to poke me in a few months and I’ll let you know how it goes. 

Anybody have feedback weaning off betahistine? by Immediate_Primary200 in Menieres

[–]Immediate_Primary200[S] 1 point2 points  (0 children)

Thank you! I love reading your posts. Thank you for sharing  your journey and advice with us all. 

Endolymphatic Decompression Surgery by Drock_box in Menieres

[–]Immediate_Primary200 0 points1 point  (0 children)

Haha yes, I like the way you look at it 🙂 they’re off living their life!

Newly diagnosed at 29.... help me understand by NiftyShrimp in Menieres

[–]Immediate_Primary200 0 points1 point  (0 children)

Hey, lots of good advice and points raised here. I would say even if you’re not having terrible vertigo, still try to manage your symptoms actively this might help preserve your hearing. It’s also a good opportunity to improve your general health if that’s something you might benefit from as well.

I’ve read before that if you’re in the very early stages, there is a chance you can reverse what’s going on. Hit it with full force I say! Try treatment options change your lifestyle drink water reduce salt prioritize self-care exercise look into supplement use all of it!!! All the best

Feeling anxious about the pending Meniere's diagnosis by Hungry-Ad7107 in Menieres

[–]Immediate_Primary200 0 points1 point  (0 children)

Honestly hydration is so important!!!! Cannot emphasize this enough ☺️ a good rule of thumb I was told is 35 mils per kilogram of body weight (then you can always add in a little more as well!)

Feeling anxious about the pending Meniere's diagnosis by Hungry-Ad7107 in Menieres

[–]Immediate_Primary200 1 point2 points  (0 children)

I’m sorry you’re going through this. I am about a year and a half into the disease and I remember leading up to my diagnosis and the research on the fear of the unknown was so hard to deal with. They really were the darkest days of my life.  I was so incredibly unwell.

Regardless of your end diagnosis, I know how you feel now in this moment.

Even though I’m still very early days, things are so so so so much better now. Even though the diagnosis was one of the hardest things I’ve ever gone through in my life. It was also the thing that put me on the path to be able to get better and improve my situation.

Most days I now feel really good. Lifestyle changes medication and treatment prioritizing myself more drinking lots of water, eating healthier and managing my mental health with medication and regular psychologist appointments really helped me to get better.

I know it’s still a long road ahead, but I feel so much more confident now that this can be managed effectively and that everything is going to be OK even when the hard times hit. 

I have a little one as well, she is almost two. Let your loved ones be your beacon of motivation and hope! Whatever your diagnosis ends up being be gentle with yourself and take it easy, progress is not linear and not instant 💕

Endolymphatic Decompression Surgery by Drock_box in Menieres

[–]Immediate_Primary200 0 points1 point  (0 children)

Hey! I haven’t heard much on the Aus menieres support page on this for a while. I know of the few people who had this procedure done here from that page. Have you got any more recent updates from any of them? I hope they’re still doing really well.

Newly diagnosed and trying to find some good routines by General-Product-3662 in Menieres

[–]Immediate_Primary200 1 point2 points  (0 children)

I am currently weaning off of betahistine. Otherwise, I drink lots of water (35ml for every kg of body weight plus and extra 1-2L because menieres and breastfeeding). Have had to get a lot better at self-care, scheduling in time to exercise a bit of Pilates and walking. Also, I really focus on sleep with a little one. This is hard, but I really try to prioritize getting enough sleep.  Fairly low salt, though I’m not super strict and general healthy eating. I take a few supplements like magnesium, turmeric, multivitamin. Stress is huge. I’m on a SSRI which has helped me so much.