Hey guys, neuro now thinks I may have a ‘bit of Hydrops’, thereby agreeing with a couple of other opinions and suggested I try a diuretic. I’ve got the prescription but may not use it: my tinnitus and ear pressure have been improving recently so I may not bother to take the plunge and instead see if things continue to improve over the next 12 months.
Must say the diagnosis makes more sense to me. I don’t have full blown Menieres (no sudden hearing disturbances, violent spinning). but I do have constant if variable imbalance and persistent tinnitus that occasionally worsens and wooshes. I also get BPPV like attacks, bed spins and Hain says BPPV can cause Hydrops.
I don’t think I’ll bother with any more tests. (Eg ECOG) because I don’t think that will lead to any additional treatment options.
Anyone have experience with diuretics?
Yes, I was taking a diuretic for the past 10 months a drug called torsemide. I stopped it last week as I wanted to see if there would be any difference in my symptoms,
Turnitaround, you and I share a variety if the same symptoms. My diagnoses is bilateral secondary endolymphatic hydrops and MAV.
My physicians feel that longtime Migraine has damaged the inner ears. I agree with them. There is good science and research to back this up.
Try it and see how you feel. You can always discontinue if not seeing any response! Good luck if you decide to trial the diueretic!
Thanks NYGAL. Yes we do! Can you recall any improvement at the start?
When I started the diuretic I also started a migraine as well as a hydrops diet. We were Hitting it from all angles. I noticed an improvement Until sometime early September. I was then hit with severe visual vertigo and motion sensitivity.
Started the Nortryptiline, which I think we’ve discussed and have been feeling better. Last few days, crazy barometric fluctuations have caused me some imbalance.
I’m really not sure if initially it was the Diuretic or the diets that helped or a combination?
Perhaps, it was a fluke and none of it helped as I did relapse whilst on the diuretic and diets.
The only drug I’m sure about at this stage is the Nortryptiline.
Thanks. Also, I’m curious, why haven’t you been given a Menieres diagnosis, what is your understanding of the distinction between Hydrops and Menieres?
I have minor high frequency loss, but it’s continuous. Even the spinning attacks don’t affect my hearing - is that the difference? Do you get spinning attacks?
I have been to multiple experienced vestibular physicians. Not a one has given me a Menieres diagnosis even with a high s/p ratio ECOG. My diagnoses is
Secondary bilateral hydrops and MAV. Two physicians even question the hydrops diagnoses although I do believe I suffer with hydrops.
Consensus is innner ear damaged by long term migraine. Many Doctors do not even perform ECOG testing any longer. Unreliable .
Turnitaround, I believe that Hydrops can cause 24/7 symptoms. As opposed to Ménière’s, which in theory should be episodic until damage is done to vestibular and hearing nerve. Hydrops will distend inner ear, I believe the research shows that Ménière’s disease causes a rupture in membrane causing endolymphatic fluid and perilymphatic fluid to mix. Not a good thing…vestibular nerve pretty much shuts down, hence the violent vertigo and vomiting. Is this theory correct, that’s what the Doc’s think.
Menieres has a specific set of symptoms that need to be fulfilled before one gets a diagnoses of disorder. Low-mid frequency hearing loss, tinnitus and true violent rotational vertigo. My understanding is that Menieres does not present with 24/7 symptoms , although there appear to be many patients with Menieres that complain of continuous symptoms. My physicians feel that these patients have been misdiagnosed and do not have true Ménière’s disease.
A patient can have Hydrops but not Ménière’s disease. All Menieres patients have hydrops when tested. Patients with Hydrops when tested do not always have Ménière’s. So clearly there is another mechanism or step that occurs with Menieres patients.
I have 24/7 symptoms with vague dizziness, swimmy feelings, imbalance, oscillopsia, high frequency hearing loss and tinnitus. I have never experienced full on rotational vertigo and vomiting. Not yet anyway. I’ve had vestibular problems since I was 15 , I’m now 55. Long time dealing with this nonsense.
Physicians tell me that If Hydrops were causing me symptoms all these years, I’d be deaf bilaterally at this point. Well I’m clearly losing hearing albeit at high frequencies and tinnitus is new to me. Maybe something changes over time in some patients with a propensity for inner ear problems.
Will I progress to Full blown Ménière’s, I certainly hope not.
What a heroine you are! Bilateral since aged 15 crikey, that is really tough. I am miserable some days but I’m very lucky really. Spent most of my 45 years care free. You must have been mature beyond your years to have coped with that.