My Menieres Experience

[Meni57]

I have been diagnosed with Menieres for just over a year now & have been on 24mg of betahistine & 2.5 mg of bendroflumethiazide which was working really well. I tried dropping to 16mg of betahistine but after 5 days had a severe attack of rotational vertigo & vomiting so the higher dose worked well for me. The tinnitus is constant but I can live with that!

[starveycat]

Mennieres is an absolute swine, I developed it 35 years ago

[Lambskins1]

Hi there, I am experiencing a lot of dizziness and occasional vertigo and take 16mg starting dose of betahistine. Did you start on 16mg and move up? I am wondering if I need to have my dose increased as my ear fullness and swimming feeling build up in between 16mg doses. Do you feel any better on the higher dose? Thank you in advance and have a good day.

[Lambskins1]

This is really helpful to me as I’m considering asking for my betahistine dose to be increased. Do you take it twice or three times a day at this dose?

[Meni57 in reply to Lambskins1]

Hi. I was started on 8mg for 2/3 weeks, then up to 16mg for 2/3 weeks at which point my doctor also changed my BP meds to one that was more diuretic. Still had the foggy feeling & occasional swimming feeling so it was increased to 24mg. I have cut out caffeine & salt as much as possible too. Hope this helps, good luck

My dose is 3 x per day

I have been attack free for quite a few months, still have tinnitus most of the time but I can cope with that thank goodness

[Lambskins1]

That’s brilliant and I’m so pleased for you. I have left a message with my ENT asking if I can have the higher dose so fingers crossed he will prescribe for me. I don’t have many attacks on the 16mg but I still feel swimmy. The tinnitus also doesn’t bother me as the other sensations are worse to cope with. You have given me some hope that I might improve a bit more x many thanks for your message and take care - have a good day

[Meni57 in reply to Lambskins1]

You're welcome, hope it works for you too 🤞

[Lambskins1 in reply to Meni57]

Hi there, I’ve had to stop taking the betahistine I just feel too light headed and spongy footed and spaced out. Feeling blue today as back on cinnarizine which is where I started off from and that doesn’t really help. Due to see ENT next Weds as I managed to get a cancellation which was lucky. How do you cope? I feel like I am not coping very well at the moment xxx

[Meni57 in reply to Lambskins1]

Maybe starting on 16mg was too much? I had bad headaches when starting betahistine & each time the dose was increased, & they lasted about a week each time & then went away. I found it difficult at first as I felt unsure about being alone to walk the dog, go shopping, driving etc & was afraid of having an attack somewhere other than home. I felt very low & that my quality of life was threatened. Everyone is different & my doctor said that it often 'burns itself out' so hoping this is the case. One of the worse things for it is stress so if you can find anything to help reduce it that may help. I really hope they can get you some relief soon. xx

[Lambskins1]

Hi Meni57, thank you for your message. You are so kind to reply. I had a cotton wool feeling in my head and felt really detached from everything and light headed. The cinnarizine is better tolerated for me but doesn’t completely fix my general dizziness. I will let you know what ENT come up with. I think I’m very anxious and not allowing anything to bed in. I will be unhappy on the cinnarizine I’m sure! Thanks for sharing your experience with me. I’m hoping that it does burn out soon for me.

[Lambskins1]

I crawled into bed this morning I just couldn’t cope - I have the fear of going out too. I take my daughter to school (I still drive) but feel like it’s a hugely risky activity for me now. My hearing fluctuates between both ears it’s so strange and unnerving.

[Meni57 in reply to Lambskins1]

It is not surprising that you are finding it hard to cope with, it is a difficult thing to come to terms with. Have they ruled out crystal movement in your ears? There are manoeuvres that can be done for that & sometimes people have both. I look at things on YouTube to find any new info on Menieres, you might find it helpful to know your enemy better! There is one from 2 American Doctors who talk about a link to food intolerance, Menieres & Hashimotos?

[Lambskins1 in reply to Meni57]

I will check that out x thanks again for being so supportive xxxx

[Meni57 in reply to Lambskins1]

No problem, you take care x

[Deebeez]

I have exact symptoms as yourself. My symptoms have been getting worse. Was prescribed Cinnrazine initially but then changed to Betahistine 16mg x 3 daily. I have been told by doctor to continue with current treatment but that I can also take the Cinnrazine (as a one off dose) in addition to the Betahistine for an acute episode. I am awaiting an ENT appointment. Interestingly, I have read that Betahistine can help with the depression and anxiety which often accompanies Meniere's. I really can empathise and hope your condition improves for you. I am also doing some head excercises, mindfulness and relaxation excercises. Good luck x

[Meni57 in reply to Deebeez]

Hi Deebeez. I have not had a drop attack since early February so life is going along well for me at the moment. I hope the meds work for you too. x

[Deebeez]

Thank you so much for taking the trouble to reply to me Meni57. My ENT appointment came through this morning so fingers crossed that I can get a definitive diagnosis. The tablets are giving me a headache and the tinnitus seems worse but I am holding out for the meds to kick in. So glad I have found this site and fellow sufferers like yourself. Take care and keep safe x