Saw my local gp for a repeat prescription nothing to do with Vm. However he asked how i was doing . He was really nice ( good for a local gp ) he wanted to give me a diuretic and said it can help my dizziness but that I would need a preventative for the other symptoms . Has anyone heard of this or had any success ??
He also said most people he puts on Ami only go to 50mg and he considered that a high dose Not sure how true that is lol . Anyways if any one has had success on a duretic id love to know . At this point il try anything !
Doctors sometimes prescribe them if they suspect you have elevated inner ear pressure.
I’ve tried one … don’t think it helped much but hard to say as was during my very bad phase.
Others on the board have used them.
These are meant to help reduce pressure in your inner ear and thereby improve symptoms (and potentially lead you towards recovery).
There several kinds … worth a try but don’t have a cast iron guarantee of success. Fairly harmless things - they tend to just make you pee more.
I just ended up focusing on drinking lots and lots (of tea and water) during day instead. I’m pretty sure my inner ear pressure has dropped in any case (as hearing distortion has dropped significantly, almost disappeared and I’ve had improvement of all other symptoms).
Yep, 50mg for MAV is at the top end of dose - higher doses are for people with depression (but it’s rarely used for depression these days …)
Interesting just today read on Porthosp.nhs.uk website article relating to Dizziness Vertigo and Imbalance whilst hunting info on this Veterobrobasiliar Insufficiency Jo turned up. (bit ‘old’ but not bad, useful and concise article) and recommended Ami dose for prevention was 25-150mg/daily. This surprised me too because the migraine consultant I saw recommended me to take up to 30mg I think it was but that was in combination with Propranolol. Helen
For the record Hain says to 50mg.
Is that the max dose typically for Nortriptyline as well?
I don’t have the answer to your question. Sorry but if you have read Daniel’s success story under Success Stories on this site’s Welcome Section he writes of taking 70mg Nori. And getting his life back. How typical that is I don’t know. As it’s a tricyclic antidepressant drug, same class as Amitriptyline I’d guess dosage would be similar.
That’s exactly what I was thinking
Janes is there a website I can see what Hain suggests ?
Apologies should have added a reference to that:
James is there any reference hain makes about the symptoms of this etc? I can never find anything
Apart from the “criteria” he lists on his MAV page and notes that it comes with vertigo and often BPPV, there is not a symptom list.
Missing for me is any mention of fluid. Hearing is supposed to remain normal. That’s partly why I was more convinced of my subsequent (Secondary) Hydrops diagnosis. I have had headaches that match the BAM description. Those were truly horrible!!
He doesn’t maintain a page for Secondary Hydrops, annoyingly.
What under a thread headed up ‘Diuretic’! Well you obviously don’t live in this house!
Sorry, James. Couldn’t resist. Just struck me as funny. GOOD guy Dr Hain but no, I’ve noticed that too.
I’m sure I’ve seen list of MAV symptoms somewhere. Will hunt. Helen
There’s another very basic reason why I’m convinced I have inner ear pressure: I can make my tinnitus worse by clenching my jaw. Seems to suggest that:
- The brain has increased the gain of part of my hearing spectrum so I now hear body stuff I wasn’t aware of before
- The persistent tinnitus reflects the persistent pressure
- Perhaps the pressure dampens the movement of the window into the inner ear and that’s what causes the mild hearing loss (and the brains response to up the gain leading to more noise)
I’m confident this is reversible if my ear is able to calm down. (And like I’ve mentioned before it certainly has done quite a lot since the worst of this as used to get terrible sound distortion on the tube I no longer get)
My issue is definitely not like Menieres though: I never get attacks of deafness. This suggests to me there is a hydrops syndrome that is distinct from Menieres. And why Hain should have a page for it.
Way back when I was diagnosed with(wrongly) with Menieres the treatment was to follow a low salt diet, take Serc and also a diuretic in order to control the dizziness. I think this was teh standard treatment. I think there are some migraine preventative drugs you are not meant toake alongside diuretics.
This is so interesting this is why I’m convinced I have more going on because yes I had dizzy spells as a kid but never anything else .
I had terrible ear pain for months when this started , some tinnitus not a lot and intense pressure .
This is why I wonder about hydrops but can’t they test for this and what is the treatment ?
Thanks so much @sputnik2 did the duretic help at all
I will have read.
I also had terrible ear pain for best part of 2 year…still do. Take Gabapentin for it. Apparently its migraine…so ive been told.
Treatment as far as I can see is identical.
Some doctors prescribe Serc and diuretics, but I don’t believe any Cochrane review has found definite proof for their effectiveness, but some people swear by them. Given some people spontaneously improve, its often hard to know if it was the meds or they just got better?
I was already dabbling in the MAV diet and when my latest doctor told me I probably had Secondary Hydrops he said ‘some people find that coffee, cheese and alcohol worsen their symptoms’. Ah … ok then … so erm … the MAV diet is also applicable!
Then you need to consider the meds … Amitriptyline & Verapamil are also used to treat Hydrops … so not much change there!
Tbh this similarity in treatment has made me even more suspicious, on top of the experience I had with the initial oto-neuro dismissing my hearing issues and trauma and telling me it was migraine.
When I asked my current doc how you tell the difference between someone with migraine and secondary hydrops he said ‘inevitably people get the wrong diagnosis because they appear exactly the same’ … which for me is code for ‘I’m not getting into that it’s too political’. Lol
The test for inner ear pressure is ECOG, but I believe we’ve had members who’ve aced that only to be told they have Hydrops later …
I think the new generation of MRI will begin to sort this all out.
This is a very controversial area of the medicine.
I would go with MAV treatment + diuretic to try if you so choose and see how you go … the ultimate way you handle your condition ends up very personal anyway even within the MAV umbrella. Explore it all until you find your personal optimal thing.
Definitely minimise or cut out coffee and alcohol to see if that helps? … (says the guy who had 4 glasses of red wine last night and survived … ooops )