Needing to vent for a moment with people who understand. I received my diagnosis a year ago at the age of 27, and now I'm 28. I'm have persistent symptoms of constant permanent hearing loss, tinnitus in both ears, and varying levels of pressure/wetness. At times, I feel as though my late 20s and my 30s have been taken away from me. I am a singer and musician, but now I find myself questioning my entire upbringing and dreams. I've shifted to a corporate job for the sake of benefits and security. I can't indulge in drinking with my friends due to it being a trigger. Dining out is a challenge, and heavy carb meals are off the menu as they can exacerbate my symptoms. International travel is out of the question. Caffeine is also a no-go, as is heavy lifting during workouts, which has caused me to lose around 30 pounds of muscle mass. Now, jogging and stretching are my only options, and I've transitioned from a fit and muscular individual to being underweight. I am aware that there are far worse diseases out there, and I consider myself fortunate to be alive. This condition has forced me to adopt a healthier lifestyle and reshape my perspective on life. However, the burden of having acquired this disease at a young age can sometimes be overwhelming and depressing. My antivirals might be helping, but they have given me acute kidney injury. My diuretics might be helping, but the Acetazolamide I'm taking has led to persistent coldness in my hands and feet, which I fear could be causing permanent nerve damage. I'm currently taking JOH, Betahistine, Acetazolamide, Valacyclovir, B5/B6, etc. (a multitude of pills each day), which can be quite exhausting mentally. My greatest fear is losing even more of my ability to hear as a musician. The loss already has affected my hearing in both high and low frequencies. I'm apprehensive about the potential progression to cochlear implants. There are moments when I contemplate giving up the fight as a 28-year-old and attempting to lead a more typical life without the constant lifestyle adjustments and risk mitigation through medication. It's a challenging journey, and I frequently find myself feeling down. I've begun therapy to help cope with these emotions, but I'm still in the early stages. I just needed to get this off my chest.
Similarly, in a study of 150 patients with Meniere's disease (Radical scavengers for Ménière's disease after failure of conventional therapy: a pilot study.) -- showing symptoms of tinnitus, vertigo, hearing loss and low cochlear flow -- those who took the pycnogenol supplement of 150 mg/day had the most improvement in symptoms. After six mon ths, 87% showed no tinnitus symptoms at all and improved cochlear flow compared with the controls.
I feel for you. To be so young and have MD must be maddening. For some reason MD strikes a large number of musicians. I've always like music and played various instruments. It's really sucked that MD has messed with these few enjoyable parts of my life. I still do it knowing I really suck now because I can't hear very well. But it's therapeutic to me. Hang in there and try different things. I still holdout hope for a cure. JOH sounds like he's on to where the breakthrough will come from. The problem is American medical field doesn't have open minds anymore (they chase money). They accept that "there's no cure or hope". Luckily a few American doctors are starting to look at "different" ways to help. The European and Russians seems to be trying different approaches. Do keep in mind many people live good lives with MD. Most people living good/better lives aren't likely to be on a forum like this. I came here after being diagnosed. Was scared to death. I read the horror stories and "knew" my life was over. I thought I was getting a good sample of people with MD on here. But I realized that people with mild (most) MD aren't likely to be on a forum like this. After reading some of the stories I realized mostly people with extreme cases are on here. My ENT gave me access to New England Journal of Medicine so I could get some stats about MD. Per NEJM most people have decreasing episodes of attacks over the years. I've been 5 years with MD. My first Vertigo attack lasted 15 hours with me ending up in hospital for dehydration and low potassium. I prepared to next attack and had very little problems but did have to wait out the attack. When I feel an attack coming on I take an anti nausea drug, vertigo drug, Valium, and (and my secret med THC), put on a sleep mask and lay down as still as possible for the duration. Any movement made me want to puke. After 4-6 hours was up without any effects.
I was a traveling freelance photographer/Automotive Journalist, I covered racing all over the country, got to see places and go where Ive never been before, it was quite the adventure,(used to sing and play one upon a time too) now that career that I did for 20-years is in the shit tank. I understand...completely, its tough and its only going to get tougher for awhile. Im less than four years with this illness, and I won't lie it has broken me many times over. And it will make you question everything, let that work in your favor, question everything. I have finally realized my old life is dead, I attended the funeral and wept bitterly, I've left a check mark beside everything I can't do anymore. And then I have started putting check marks on new talents/skills/hobbies. In my questioning of everything I have started questioning me, my attitude towards what I need to adapt to this illness, what I can learn from it, cause god knows I can't change it. It's just tough no magic answers, it's tough but what's the alternative?