In a bind and needing suggestions or advice

Some of you may know but I have been on a diuretic(Diamox) for about 4 months now. Doc advised to take 2 a day but for the 1st 2 months, I only took 1. The first week was great as I had almost no imbalance but the effect wore off after the 1st week. The 1st week of the diamox was the week when i dropped ami cold turkey and its possible that ami finally kicked in around the 1 month mark and was doing its job and since i wasnt taking it anymore the effect possibly wore off and thought maybe it was diamox that was doing it. That is another variable i did considered. Around the 3rd month, doc thought since the 1st week was great, he persisted I take 2 a day so I did. First 2 weeks was so-so and didn’t feel like I had relief like the initial 1st-week relief when I began taking it at 1 pill. The effects wore off after 2 weeks and began to get worse. There was a period when I wasn’t taking this med for about a week before I decided to take 2 a day and it was the same. So I’m at a crossroads now. Do I keep taking it or quit cold turkey and go back to ami? I have 1 week of Diamox left and I’m thinking about maybe just taking 1 pill a day to taper off until it runs out. I always ask what if this med is keeping something worse to come at bay? Do I continue with this med or drop it and go back to ami? Also to note, Diamox has a side effect of shedding some weight and that can be a positive for some people but not for me, I’m skin and bones right now and I need to gain some weight.

Also, almost all of the members on here have or had migraines. Is it normal that I don’t have one? I may have head and sinus pressure here and there but not the ones that are described on this forum and it’s not painful. My main symptoms are imbalance(push/pull) when walking so I feel like i’m not walking straight, some vertigo when I shut off the lights at night, and rocking when laying down, wobbly head but never a migraine. My head is sensitive but no headaches or migraines. I just found that strange and this beast is definitely morphing and not for the better.

Sorry I can’t speak on the Diamox front as I have no experience with it or any diuretic.

But MAV can happen without the headaches. I don’t always have headaches either, although lately they have been fairly constant. I still don’t get some of the head pain described on here, although there are days I can get VERY bad pain around one eye, 90% left eye 10% of the time it’s my right eye, and other days where it feels like my temples are in a vice.

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Thx for the response Jess. My head right now is very sensitive especially to sounds and it feels heavy. Maybe the heaviness is one of the symptoms of a migraine. I was expecting your typical migraine where you have to be in darkness and shut out the surroundings and you have to take a nap or sleep.

It can come in many forms, usually it’s a sort of sensitivity… light, sound, touch, etc. I noticed my eyes felt heavy last night all of a sudden and my head was hurting/aching… Decided to call it a night and sleep. They said VM can still be categorized because a migraine can be silent but still have the neurological responses (imbalance, dizziness, etc).

Thx cadet. Are you doing better?

No problem.
I’ve been hanging in there… Past 2 weeks sucked due to allergy weather and the storms swinging in and out.
Last night sucked cause there was scattered slight rain in the area (left portion of the state and bottom portion of the state, I’m in the middle) but never overhead, so it caused some issues. I usually text @BHMaloney when I’m feeling slightly off to see how he’s doing and it’s usually the same or text him just to see how he’s feeling in general cause we look out for one another. It’s definitely a respect thing on this forum which is nice and also something I appreciate.

I really do wonder the science behind this, because it was such a slight portion with veerrrry scattered rain (a lot of the rain portions weren’t even connecting to make a real rainstorm) and yet it triggered me when I’m 30 miles or more away. I usually look at the barometer pressure to see if it’s raising, falling or steady… If it’s not that, then I see if there’s rain anywhere nearby to explain to myself what really is triggering it.

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I do wish sometimes that i knew someone locally going thru the same stuff so we can talk, vent etc or even a simple text like you. The closest one is i have a new co worker and surprisingly he knew what mav was because he looked it up before i even mentioned it. We dont have the very exact symptoms but he has daily headaches, some balance issues on bad days, pressure on the head, tinnitus, and so on.

You can talk to folks directly here. We’re not local, probably, but we care and we understand. If you use the message tab under your logo it will send an email to whomever you messaged. Most of us have smart phones we’re obsessed with, even though screens are hard on us. Most of us will get the message and respond, even if there is sometimes a time zone delay. I’m on the US Pacific coast. James knows I often can’t sleep and respond in the middle of my night which is 9 hours behind him. Vent. It helps.

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hi - what is your diagnosis? i.e. what’s the Doc giving you Diamox for? MAV? Menieres? Something else?
i’m not sure a diuretic will help with pure MAV but is considrered to be of benefit where hydrops is the problem.

yes you can talk to us, and there is also a skype group being set up.

your symptoms sound typical of MAV. I’ve never had a ‘typical’ migraine headache, or any kind of really bad headache, but i do get visual aura with no headache, and i get all the other symptoms - eg. light & sound sensitivity, tinnitus, imbalance, visual aura, sense of motion or dizziness… etc

That’s honestly enough that gets any symptoms, because BHMaloney gets some things I don’t and likewise but symptoms still arise roughly around the same time.
Reach out to your co worker for in person chat.

@flutters Thx Emily. This place is only the true place where you can vent or get answers because others in real life have that puzzled face.

@gidlabu My current diagnosis is hydrops. Diamox is the first med that my current doc precribed to me.

@Space_Cadet I will do that. Sometimes i feel like a teacher because all I do is pass on the info to him that I learned here lol.

At least you’re helping other’s which I’m sure they’ll be able to discuss with you too and tell you tactics they’ve used to deal with it.

Just re-reading this thread.

@Young_Lee would your doc not allow you to take Ami AND Diamox at same time, do they have bad interactions? Ami could help with symptoms (especially dampening rocking sensation) whilst Diamox deals with fundamental cause?

Could be you just need time (nothing happens in these conditions very quickly) for improvements to become apparent. Remember I used to have rocking, push-pull and night vertigo and it went away.

@gidlabu I have had both MAV & Hydrops diagnoses. I’ve had all the symptoms decribed in MAV so think it’s hard to distinguish the two (hence my theories) though I’m convinced I have SEH/PLF as is my current doctor. Seems Ami is prescribed for both.

(PS ‘All’ Hydrops means is elevated pressure in the inner ear, doesn’t mean you have Menieres as there can be other causes for it e.g. one-off trauma)

@turnitaround i do remember now that doc said i can take ami along with diamox when he prescribed diamox. Maybe i should have done that from the beginning. I tapered down to only taking 1 pill of diamox this week and i didnt take any yesterday or today because i been on .5 mg on ami since friday so 2 days ago. I have been more imbalance and dizzy this week and more so the last 2 days since taking ami. I dont know if its the ami, not taking diamox or the stuffy nose and sneezing this week. Too many variables to consider. Im just worried about the long term use of diamox and the weight lost. I know people use diamox well above 2000mg for other conditions as well. I might consider going back to diamox in a week or so if ami doesnt improve any of the symptoms.

Yeah there are just so many variables very true. I used to use a really good iOS app to track symptoms, activity, medicine and food for a while and correlations were next to impossible to find in the data. However the impact of Ami was pretty convincing.

(In case you are interested: mySymptoms Food+Symptom Diary by SkyGazer Labs Ltd)

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Thx for the app. I’ll check it out.

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btw this feeling could be a mix of things and in part neurological. Ami might help here but the one time I had brain fog (yeah lucky right?) it didn’t help at all.

Note Hydrops can definitely precipitate all these things, including full on migraine. It’s good you haven’t had one of those! Long may it last!

You had brain fog once?! Yeah, me too, for about three years.


Yeah, weird huh? Only for several hours. Absolutely awfu and quite scary. Heart goes out to anyone who gets that regularly … and I’ve only had scintillating scotoma once too, in 3 years. Touch wood. A lot of wood.

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That’s a fun one, too. The thought of the last one makes me nauseous - mainly because that comes after. I do the brainstem aura thing. It starts visual, then auditory, then speech and cognition, then sensory, then a whole lot of puking, and then, maybe, some blinding pain for a day or a week. Good times. That’s why when you referred to yours as ‘interesting’ my first reaction was ‘oh, yes, interesting’.