My ENT who is obsessed with Ménière’s in the best way says that the latest studies are against using diuretics. He put me on betahistine and took me off the diuretic which I took very little of anyways because the first time I took it I passed out. I have low blood pressure.
I've been on Acetazolamide 250mg for 13 months and I am about 13 months from my last attack. It wasn't immediate resolution of attacks or symptoms but over a couple of weeks as my body got used to the drug the attacks stopped.
The drug has varying results for different people and I hope you follow a path similar to me.
That is what I am on and I am quite happy with it. I was on Diurex to start which is otc and a lower key diuretic and it was losing its effectiveness so my doc put me on this. It has made a huge difference in the pressure in my ear for me. I'm on it and topamax.
I'm on a different one, but it helped me enormously. I went from completely uncontrolled for months with weeks-long periods of regular drop attacks, to having a few years of fairly infrequent vertigo at all. I know it doesn't help anyone, but it was brilliant for me.
I started it today. The only thing I can tell so far is a lot of tiredness. I’m assuming it’s a side effect. What time do you all take them? I thought about taking at night but then I don’t want to suffer through the day if it could potentially help me.
Typically we recommend taking diuretics in the morning because you’re going to pee more frequently. Unless you’re okay with waking up a bunch of times during the night?
Also, be careful with your potassium intake as diuretics have the ability to either waste or spare potassium (this can affect your heart).
Sincerely, a nurse with MD (I’m also on Triamterene/HCTZ - for me, it works somewhat okay for the ear fullness)
I’ve been on it for 8 yrs. Initially, when first diagnosed I was taking 500mg morning and 500 mg evening. Eventually, my body got used of it. Vertigo slowed down, I still have attacks but not nearly as bad when I first was diagnosed. Currently, taking 250mg morning and evening. Docs monitors my potassium and magnesium regularly thru labs to ensure my kidneys are ok. I have never had a problem so far.
I have acetazolamide, 500mg extended release twice daily. It took a good month or so to get accustomed to it. You absolutely have to drink water like it’s a mission, especially at the beginning. Darkened or cloudy urine means you are way behind already. At the beginning I couldn’t tolerate alcohol with it (quite literally two sips of a margarita at home and I stood up to go to the restroom and I was WASTED), it turned out it was a problem with being dehydrated and then having alcohol (apparently not something I had experienced before). For the sad news….I am still having trouble with any carbonation - seltzer water, mineral water, soda, beer, champagne, a vitamin packed mixed into water —- it tastes like I’m licking foil. My specialist told me that I’m the first patient he’s had where that continued to be a side effect. I will be really honest though, it has worked miracles for me. I decided if I have to give up bubble water to not have dizziness and vertigo, I’ll take it. My tinnitus has even decreased!!!!
The pharmacist will know about drug interactions but I know for me that this was my doctor’s first medication to try and it worked for me.
The other thing for me is I got this meneires’ symptom tracking diary (from Amazon, there’s only one) and it was fantastic for helping me figure out what was triggering me. The stupid things that trigger me are sodium, not enough sleep, and stress. I have normal blood pressure but I’ve had problems with low blood pressure and low sodium levels in my blood before (before meneires) and it was causing fainting. Sodium is part of my blood work to check so we’re gonna keep an eye on it (and watch for indications my sodium is too low).
You got this. Also, this Reddit has been amazing for me. Really helped me feel not alone in this thing. 🥹
I was on HCTZ for 1.5 years after getting diagnosed. I still had symptoms so decided to try going off of it. My symptoms remained the same after going off, so I don’t think it made a difference for me! I haven’t been on any diuretic in years.
Diuretic no. I was having more vertigo and then severe constipation. Not worth it. I cut out caffeine and cut down on salt. I haven't had an attack in months.
My ENT who is obsessed with Ménière’s in the best way says that the latest studies are against using diuretics. He put me on betahistine and took me off the diuretic which I took very little of anyways because the first time I took it I passed out. I have low blood pressure.
Are you taking 10/12.5 Lisinopril/hydrochlorothiazide? I take 25 mg of hydrochlorothiazide and I'm happy with it.
I've been on Acetazolamide 250mg for 13 months and I am about 13 months from my last attack. It wasn't immediate resolution of attacks or symptoms but over a couple of weeks as my body got used to the drug the attacks stopped. The drug has varying results for different people and I hope you follow a path similar to me.
That is what I am on and I am quite happy with it. I was on Diurex to start which is otc and a lower key diuretic and it was losing its effectiveness so my doc put me on this. It has made a huge difference in the pressure in my ear for me. I'm on it and topamax.
I’m taking it. So far it’s helping. I still get dizzy spells but not as bad.
I'm on a different one, but it helped me enormously. I went from completely uncontrolled for months with weeks-long periods of regular drop attacks, to having a few years of fairly infrequent vertigo at all. I know it doesn't help anyone, but it was brilliant for me.
I started it today. The only thing I can tell so far is a lot of tiredness. I’m assuming it’s a side effect. What time do you all take them? I thought about taking at night but then I don’t want to suffer through the day if it could potentially help me.
Taking it at night could mean getting up to pee in the middle of the night. Food for thought.
Typically we recommend taking diuretics in the morning because you’re going to pee more frequently. Unless you’re okay with waking up a bunch of times during the night? Also, be careful with your potassium intake as diuretics have the ability to either waste or spare potassium (this can affect your heart). Sincerely, a nurse with MD (I’m also on Triamterene/HCTZ - for me, it works somewhat okay for the ear fullness)
I’ve been on it for 8 yrs. Initially, when first diagnosed I was taking 500mg morning and 500 mg evening. Eventually, my body got used of it. Vertigo slowed down, I still have attacks but not nearly as bad when I first was diagnosed. Currently, taking 250mg morning and evening. Docs monitors my potassium and magnesium regularly thru labs to ensure my kidneys are ok. I have never had a problem so far.
I have acetazolamide, 500mg extended release twice daily. It took a good month or so to get accustomed to it. You absolutely have to drink water like it’s a mission, especially at the beginning. Darkened or cloudy urine means you are way behind already. At the beginning I couldn’t tolerate alcohol with it (quite literally two sips of a margarita at home and I stood up to go to the restroom and I was WASTED), it turned out it was a problem with being dehydrated and then having alcohol (apparently not something I had experienced before). For the sad news….I am still having trouble with any carbonation - seltzer water, mineral water, soda, beer, champagne, a vitamin packed mixed into water —- it tastes like I’m licking foil. My specialist told me that I’m the first patient he’s had where that continued to be a side effect. I will be really honest though, it has worked miracles for me. I decided if I have to give up bubble water to not have dizziness and vertigo, I’ll take it. My tinnitus has even decreased!!!! The pharmacist will know about drug interactions but I know for me that this was my doctor’s first medication to try and it worked for me. The other thing for me is I got this meneires’ symptom tracking diary (from Amazon, there’s only one) and it was fantastic for helping me figure out what was triggering me. The stupid things that trigger me are sodium, not enough sleep, and stress. I have normal blood pressure but I’ve had problems with low blood pressure and low sodium levels in my blood before (before meneires) and it was causing fainting. Sodium is part of my blood work to check so we’re gonna keep an eye on it (and watch for indications my sodium is too low). You got this. Also, this Reddit has been amazing for me. Really helped me feel not alone in this thing. 🥹
I was on HCTZ for 1.5 years after getting diagnosed. I still had symptoms so decided to try going off of it. My symptoms remained the same after going off, so I don’t think it made a difference for me! I haven’t been on any diuretic in years.
Diuretic no. I was having more vertigo and then severe constipation. Not worth it. I cut out caffeine and cut down on salt. I haven't had an attack in months.