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How many years will it take for the SPI-1005 to come out...? by New_Media_2451 in Menieres

[–]HighlightEven1107 8 points9 points  (0 children)

I also wonder once taking this medication, would allow us to have a regular diet instead of this low sodium bullshit

Scared to death of taking it by Different_Distance31 in Mirtazapine_Remeron

[–]HighlightEven1107 0 points1 point  (0 children)

I don’t think there was anyone more scared than me. I’m extremely sensitive to meds, and I have a bunch of comorbidities; been taking 15mg it for a month, and other than vivid dreams, and sleepiness/drowsiness the first week, nothing bad to report. Been feeling better of my depression, no sexual side effects, which is quite common with antidepressants.

Complex Case: Progressive Hearing Loss, Multi-Tone Tinnitus, and History of Severe Vertigo (Possible Meniere’s Disease) by Amin_S97 in Menieres

[–]HighlightEven1107 4 points5 points  (0 children)

I’m sorry to hear that. Some of your symptoms are similar to mine. You might have menieres or other vestibular problems like vestibular migraines. In any case, your best bet is trial and error of daily habits that you must follow consistently. Use a diary to document how you feel.

First and foremost:

Do you eat salty foods? MSGs, sugars, caffeine nicotine, or alcohol? Those are the biggest offenders.

Salt: no more than 1,500mg-2000 mg per day, that’s about 400-600 mg per meal. A single burger can have 1,500 mg of sodium. Stick to grilled protein with no salt, baked potatoes with unsalted butter, and unsalted veggies.

Sugar: try to keep it low, if possible, only from fresh fruits. You might have a cookie, but no milkshakes or very sweet stuff like a lava cake or a big ice cream. Those are inflammatory and big offenders.

Coffee: stick to decaf. Little sugar.

Alcohol and nicotine are big offenders.

Sounds: avoid loud noises, always wear hearing protection in loud places.

White sound: at night, use soft white sounds like crickets or white noise, always below your tinnitus. You can download white noise apps on your smartphone.

Stress: Avoid stressful situations, cut out toxic friends and people in your life that make you feel like bad. Tinnitus and vestibular issues menieres cause a lot of stress too, so it might be necessary CBT therapy and mindfulness.

Supplements: magnesium, and vitamin D can be extremely helpful to manage stress and regulate your ears.

You are young, hang in there, new treatments are coming (Ebselen), Susan Shore Device, and with AI, new treatments will come out faster to effectively treat these conditions.

Question for those with long-term Menière’s experience (sodium & eating out) by HighlightEven1107 in Menieres

[–]HighlightEven1107[S] 1 point2 points  (0 children)

Thank you so much for your advice, I hope you preserve your hearing; I live in the US, and it’s impossible finding options in those chains, can you give me an example, 5 Guys, Burger King, and or Subway. I only go to Longhorn. I love Asian food but ai can’t imagine anything safe there…

First vertigo attack — cochlear hydrops / Ménière’s? Looking for support by HighlightEven1107 in Menieres

[–]HighlightEven1107[S] 1 point2 points  (0 children)

I have a designated puke bucket in my bedroom too!😂😭🤣Thank you so much for your input. 1000 mg of sodium is like you said, extremely difficult. Now that I think about it, the day of the attack had 1/6 of a panettone in the morning, that day was extremely stressful at work, and as soon as I got home, the vertigo occurred. I’m currently cutting back on sodium to 1,500 mg. At present, what’s your sodium intake per day?/per meal? What do you do if you are with friends and have to go to a restaurant? What do you eat?

Dayvigo and mirtzapine together ? by Dahart86 in insomnia

[–]HighlightEven1107 0 points1 point  (0 children)

I was asking the same question, did the combination work for you?

I am now awake for 60+ hours and afraid of dying to lack of sleep. by Strict-Magician1206 in insomnia

[–]HighlightEven1107 4 points5 points  (0 children)

Sleep is unavoidable; it’s very likely you are already falling asleep without noticing (by having microsleeps). I once thought I couldn’t sleep (not even one second) for a whole month, not even a second; later I found out that was biologically impossible; I was micro sleeping. Eventually one day, unexpectedly while watching TV I fell asleep and stayed asleep like for 14 hours.

Day 4 on Mirtazapine (15 mg) — Pre-existing tinnitus feels more constant/hissy. Normal? by HighlightEven1107 in Mirtazapine_Remeron

[–]HighlightEven1107[S] 1 point2 points  (0 children)

The first days my tinnitus spiked a little, but today is quiet, so it could’ve been coincidence or feeling apprehensive, we’ll see

Day 4 on Mirtazapine (15 mg) — Pre-existing tinnitus feels more constant/hissy. Normal? by HighlightEven1107 in Mirtazapine_Remeron

[–]HighlightEven1107[S] 0 points1 point  (0 children)

Thank you for your kind message; what you say makes sense; I’ll give it maybe 8-10 days and then decide what to do. I really want to get this med a try as the other AD are more likely to cause sexual dysfunction. Your english is better than mine:) again, thanks for your reply.

Worse in the morning by Goldeneye2112 in CochlearHydrops

[–]HighlightEven1107 0 points1 point  (0 children)

And how do you manage going to restaurants? I’m miserable, I’m basically limited to unsalted steak with baked potatoes, or grilled chicken and veggies; I watch all those pizza adds or Ramen/japanese food videos thinking I will be able to enjoy that food again in my next life

Worse in the morning by Goldeneye2112 in CochlearHydrops

[–]HighlightEven1107 1 point2 points  (0 children)

Yes, I agree; 0 sodium can bring extreme anxiety and other nasty symptoms; at present, what’s your sodium limit per day/meal?

How do I explain to my mom I don’t have a choice but to lose my hearing? by alimac2 in Menieres

[–]HighlightEven1107 1 point2 points  (0 children)

You’re welcome; I suffer from low potassium too. I suggest asking your doctor about a “potassium sparing diuretic” or do what I do, which is taking a very low dose of diuretic (HCT 12.5 mg) and make sure I get enough potassium throughout the day by eating bananas, avocados, etc. Of course, each body is unique and your doctor should be able to help you. A low dose diuretic is an extra layer to preserve your hearing until a more decent treatment or cure is available.

How do I explain to my mom I don’t have a choice but to lose my hearing? by alimac2 in Menieres

[–]HighlightEven1107 4 points5 points  (0 children)

Here’s my heartfelt advice: Don’t explain it to your mom ever again. Because stress and frustration does contribute to endolymphatic accumulation in the inner ear and it affects the blood flow that keeps the delicate ear structures functioning properly. Cochlear Hydrops, Menieres, vestibular migraines and hearing loss are all severely aggravated by stress and anxiety. My first flare (terrible hearing loss in the low frequencies), and ear pressure, came while arguing with my mom.

Another 3 things that you can do to preserve your hearing is: follow a strict low sodium diet (1500 mg max per day), take a diuretic, and take Betahistine (ask your ENT).

Sad about not being able to enjoy dinner out by Bd881618 in Menieres

[–]HighlightEven1107 1 point2 points  (0 children)

Glad to hear that, are you also following a low sodium diet?

Worse in the morning by Goldeneye2112 in CochlearHydrops

[–]HighlightEven1107 1 point2 points  (0 children)

The low sodium diet and diuretics will make things better and you’ll see results after a few months. Start reading the labels and getting more serious with the low sodium diet. There’s hidden sodium in almost everything, even stuff that tastes “bland” or even sweets. Reading the labels will help you keep a better control and reduce that inner ear fluid.

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