Menieres time frame

Happy to hear that Christine. Yes the Betahistine snd diet changes have made a big difference. Thank you for your reply.

Hi Christine, how long did it take the 24mg to kick in and for you to notice the difference? 

Many thanks

Sarah 

Hi Sarah. I’m just looking at the diary I was asked to keep for three months. I made 3 columns of vertigo hearing/pressure and tinnitus with colour coding for good/bad/no change. Straight away zeros for vertigo and I’ve had none since. H/p started to improve by the second week and tinnitus had returned to my normal by the fourth week. Unfortunately I had moderate/severe hearing loss prior to Meniere’s so my normal is different to yours. However I manage fine with hearing aids and my latest test last week showed little change so that’s as good as it gets for me. 

Amazing thank you. 

I’ve not had vertigo as such, I don’t have nystagmus and I’ve only had 2 ‘internal’ spins (if that makes sense). 

The 16mg stopped that but I’m still having some unbalance and tinnitus so happening the increased dose will help me further. 

Have you had vertigo since? 

Also how do you manage with your balance now? Any tips for me? 

Sarah x

Also do you or have you experienced any neck pain with yours? 

I get really bad pain/aching in my neck a lot of the time x

No I haven’t had any vertigo this year. I was stable on 16 x 3 but my gp told me to cut down to 8 and that’s when it all kicked again. Hence the private consultation with a specialist so my gp could be guided by an expert. As for balance the neurotologist checked on my first appointment by getting me to walk in a straight line placing one foot directly in front of the other. I could do it one way but not the other so my left side is slightly compromised. I cycle play squash and do Pilates so my balance I thought was pretty good. So I practice standing on one leg eyes shut. Work in progress! Exercise definitely helps. 

No I don’t think so. I occasionally get a stiff neck where it connects to my shoulder- trapezoid muscles I think - but that generally coincides with a squash match with a man! There are so many strange symptoms with Meniere’s and so many ways people deal with it. For me the biggest concern is my hearing. Each attack causes damage so controlling it is paramount. 

I’ve booked in with a chiropractor for tomorrow for an initial assessment. Whether it has anything to do with this or whether it’s my scoliosis finally causing me issues I don’t need it on top. 

Mmm I’m doing some vestibular rehab exercises my consultant gave me but I feel I go off to the right a lot. 

Do you feel dizzy at all or lightheaded at any point? Is this just something we have to get used to? 

Sorry for all the questions I’m quite new to this disease. 

Sarah x

I haven’t felt dizzy since the vertigo stopped and any feeling of being light headed I’ve always attributed to needing to eat and too much exercise. How can you tell what causes vague symptoms. I completely understand your obsession with all this. No one likes mysteries regarding health and I was a paranoid neurotic for a year but now I try to act normal and not overthink how I’m feeling. There was a time I couldn’t even scroll on my iPad and being a cad technician at work scrolling across a graphics terminal all day was a nightmare. Wobbling out of the office to throw up on several occasions. I gave in last August and retired. I have noticed when walking if I turn to look at something I don’t quite maintain a straight line but I quickly compensate. I think that’s what you have to aim for - keep doing physical things and your vestibular system will learn to compensate. 

Ah ok, I’m hoping this medication works as I’m still feeling dizzy at times. It helps masses that my eyes now remain stable and I’m on amazing antiemetics which relieves a lot of my anxiety about being outside. 

Have to admit I’m struggling laying down in bed this evening, feels like a proper attack of vertigo may happen, I have had this before and it hadn’t happened it’s just the apprehension. 

This whole thing drives you insane! Xx

If you are going to see a chiropractor, you can read this first (http://hearinglosshelp.com/blog/atlas-adjustments-alleviate-menieres-disease) and it would help you, I have a plan to see a Blair chiropractor in a few months, you can find out your nearest Blair chiropractor from a website mentioned in the comments. Other chiropractor are also find they all aim to fix/adjust the atlas but my experience was little bit annoying, I went to a chiro and he started adjustment straight away without taking any x-ray etc but now this time I will go to a chiro who is specialist in Blair technique.

I was trying to cut betahistine 16mgm 2/day after ENT approval but after a week my symptoms have started coming back, I am now back to 3 tabs a day. Little bit dizzy all day and feel sudden shock/wave in my brain that makes me discomfort. 

Good Luck and let us know your findings. 

Awful day today. Balance not too bad but my head is bad. Although it feels clearer, my ears and the tinnitus is wreaking havoc. I have a chiropractor appointment today and I’m hoping I make the walk down there. Anxiety through the roof currently. 

I have a 12.5 hour shift to do tomorrow so fingers crossed I can make it 

Thank you for this. 

I have seen the chiropractor and they have found I have 2 misaligned cervical vertebrae and greater problems with my lower back. 

Had X-rays and adjustments today. 

Relief in my back is brilliant, some relief in my neck which is also good, ears felt clearer immediately after for about 3 hours but now tinnitus is back. 

Had discussion with my GP about upping from 16mg to higher dose and she has said no as 16mg TDS is max for maintenance dose. Not happy with this as I’m not trying to maintain being symptom free I’m trying to become symptom free. 

Sarah 

When were you diagnosed with Meniere’s?  Is your hearing distorted as well as the raging tinnitus?  For me that is worse than the vertigo. The tinnitus causes huge anxiety for me as it’s relentless. What changed things for the better was seeing a neurotologist who was reassuring and made me feel there is help out there. Getting the right dose of betahistine and knowing that if it doesn’t work then other options are available. Steroid injections etc. These days I avoid loud noises such as cinema. I don’t do that anymore as it definitely makes my tinnitus louder for a while. I have always read a lot - 2 books a week - as it helps me switch off as well as entertain me. I hope you find some relief soon - it will happen!

Sorry our posts crossed. Your gp is correct- she cannot prescribe a higher dose but a neurotologist can which why I went to the balance clinic at Addenbrooks. Research indicated this is the centre of excellence. 

So can an ent not prescribe higher dosage? 

My hearing is generally ok. Occasionally it feels like my eardrums are vibrating when people talk, tv is on, general noise of life. 

I can’t seem to find a Neurotologist, Just comes up as neurologist or ent? Xx

Try neuro otologist. I think that’s the correct term.  They are a rare breed. Mine is called mr Donnelly. They seem to be at university hospitals with clinics in Harley street. He is also an experienced surgeon with cochlear implants. I’m not sure if an ent can prescribe higher doses or if it must be a consultant. Ent docs are just that - ear nose and throat and don’t specialise in vestibular disorders. I also searched on Meniere’s specialist. Keep trying!