Pathway to recovery

Hi All,

I signed up because I just wanted to share my experience in case it helps another person suffering from Menieres disease. I really appreciate online communities like these, they helped me come up with an approach to the condition, so thanks to you all

TLDR;
-low salt, no caffeine, no alcohol, home cooked, healthy food diet
-reduce exposure to stress
-improve how you react to stress
-hydrochlorothiazide
-exercise
-physio
-chiropractor

BACKGROUND
I had previously had small bouts of vertigo about 8 years before getting diagnosed. These would just be an afternoon where I was dizzy and needed to lie down for the rest of the day. I would get one of these minor vertigo attacks every few years and thought nothing of it. In-between these vertigo attacks I would experience periods of having a blocked ear that grew to the point of being completely unable to hear in my left ear.

DIAGNOSIS
Fast forward to mid 2019 I went through a very stressful period in my life, both at work and in my personal life. I wasn't eating very well, I was drinking way too much coffee, and was barely sleeping. This period culminated in issues with an unpleasant issue at work. Following this I took a brief period of leave and a week into this I had the worst vertigo attack yet, unaware that it was a severe Menieres attack, I thought I was having a stroke and was going to die.

EARLY MENIERES
The first few months I had Menieres attacks about three times a fortnight. Completely debilitating, like on a fast moving spinning ride at a carnival for 4+ hours debilitating. It would take days to be able to walk properly around the house and then another attack would take place. I was eventually diagnosed and was lightly medicated.

I was prescribed betahistine and hydrochlorothiazide as ongoing treatment, as well a small amount of valium to take when I thought an attack was going to come on. I took the betahistine and hydrochlorothiazide daily but the valium sparingly. I was later prescribed anti-nausea medication to suppress the violent sickness I experienced.

In conjuction with this I drastically changed my diet. I completely stopped drinking coffee (in fact I stopped all caffeine based consumption, including chocolate and cola), I barely ate salt (I would pretty much eat porridge from home cooked oats for breakfast, veggie sticks and fruit for lunch, then something home cooked for dinner with no added salt). I lost a lot of weight, some said I had become too skinny however I took that over having frequent attacks. At first I hated this because food was bland and I was sad that so many of the things I enjoyed eating I would never eat again but over time my tastes changed.

The best part was that my symptoms were subdued, not gone but the attack frequency was spaced apart a lot more. This meant I could have more confidence in life and was able to start exercising. I found the exercise improved my moods and helped reduce stress in my life.

In conjunction with this I took active steps to reduce stress in my life, made a concerted effort to address my reaction to stress, and decided stop worry about everything. I would continue to apply myself to life and seek the best for myself and others but could no longer worry about the outcomes. I would be grateful for simple things in my life and these things were enough. Something Menieres attacks showed me was how grateful you can be just to feel normal.

MID MENIERES
I stuck with this diet for a year or so. I tried one slightly saltier thing a week in order to test things I may or may not be able to eat without causing an attack. This was a slow and gradual process and I was still eating a really low salt diet. The attacks deceased in frequency over this year and I went off the betahistine and valium (I was worried about relying on valium and becoming dependent on it so I only took this like 4 or 5 times from what I recall) but stayed on the hydrochlorothiazide.

My GP recommended seeing a physio to do exercises to assist my balance system and help strengthen and recover the muscle groups working to help me balance. This is where I saw a big improvement and it was after this period that I noticed the attacks were very rare and were back to my old slight vertigo only days, not the prolonged periods of disorientation and vomiting.

LATER MENIERES
By this stage I was barely having attacks (they were spaced out about 6 to 9 months) and I would only be getting slight wobbles a few times a week. I was still not 100% confident as I was worried about having an unexpected attack when away from home but things were really good compared to the early days. The physio was completed and I was doing exercises at home every two or three days but my neck was getting really sore and stiff. I had been advised against going to a chiropractor by my GP but it was so sore I felt I had nothing to lose and went to one recommended to me by a friend who I know had had good experiences with some symptoms they had.

The chiropractor was understanding of my condition and over several intensive sessions the first few weeks (along with my continuing to do physio in between) I felt the best I had in years. I continued to see the chiropractor for over a year (and still go every couple of months now) and noticed my symptoms getting even less severe over this period to the point of "recovery".

"RECOVERED"
I am now at a stage where I can have junk food a few nights a week (although not every week), a coffee every few months, and a few drinks when going out without any Menieres attacks (touch wood). I can go for extended training sessions and recently got back from a holiday at a theme park where I went on roller coasters with only minor issues flaring up and these didn't stop me from having one last ride (although I wouldn't dare go on spinning rides as I can tell just by looking at them that they are no good for me) .

I feel like I have had a solid path to recovery that has worked really well. I wanted to share this with the community as I remember when I first got diagnosed I was looking for answers, treatments, and peoples' success stories like crazy. I was scared, sad, and lonely and really appreciated every post I saw, good and bad, as these gave me a context to work with.

Every day my thoughts and prayers goes out to everyone suffering from this. If any of you have any questions please let me know, I'd be happy to give any advice.

 

I think it allowed me to eat higher salt diet than I was but it could have been a placebo effect. I am reducing my dosage of this slowly. The hydrochlorothiazide is mainly to keep fluid moving through your body quicker.

I had nearly no hearing in my left ear when I was having the attacks all the time but that has now returned to about 80-90% from what I can tell. I still get a full ear sometimes and have tinnitus most of the time. However I find the tinnitus to be linked to salt intake. If I am very strict I will notice the tinnitus is reduced or goes away completely.

 

Never had hearing issues until Menieres hit. I had bad hearing for a couple of years, basically no hearing in left, but now I can have conversations. I gotta say I can't do social events at clubs and bars etc where there is a lot of noise and/or bass music without pretending I hear people. There are certain sounds that get all jumbled up.

Thanks.

I think I read somewhere that caffeine restricts blood vessels. Also I'm kinda high energy and I think caffeine just sends me into stress territory without stress.

What do you think caused your surprise attack?

 

Man that must have sucked after thinking you were in the clear. I'm hopeful I wont have a another series of attacks but I am realistic with the entire thing. I'll have to read up on anti-virals, so you've had success with this? How rapid is the relief/recovery?

I stay super hydrated, often over 3 liters of water a day. I use the diuretic to keep the water moving through my body and therefore stopping the salt from collecting as the salt thing in the inner ear is what I had been told about.