Dealing with the situation / new life

Hi Sarah. So sorry to see that you've been hit with this disorder. It came on in my life full vengeance about 20 years ago. The first few years were devastating until I began finding answers as to what brought this on, what aggravates it, and learning to alter the things I have control over and avoid the things I can't. I slowly began to improve and get much of my life and independence back. Within about 3 years from the onset I had fairly good control over it all. In my case many of the things that triggered attacks were things I could avoid, much being foods and beverage components, chemicals, and environmental triggers. I charted my life... the things I ate, drank, medications, supplements, environmental exposures that I breathe in, etc, everything, paying attention to details, to what time of day, what I felt, anything I could think of. Patterns began to become apparent. Everything was an experiment, and I had to make some big changes blindly not knowing if they would make a difference. But details did begin falling into place. With changes I began to improve. Yeah it meant doing without some things I had once loved. It meant altering activities and implementing social restrictions and always jumping through hoops, but I began to consistently feel better. Every day I have to pay attention to everything. It became my new normal. But I got better, and for the most part I can maintain that. When things happen beyond my control and affect my health negatively, I know that I can get better again by eliminating or avoiding the offender. You can feel better again, everyone has different answers and methods, be proactive, pay attention to every detail, any sacrifice and effort will be worth it to feel better.

 

Sarah, find a Doc that will prescribe an antiviral. Give it at least 6 months. Doesn't work for everybody but it's worth a shot. I've been symptom free for almost 5 years now. If it works continue to take them so this never comes back again.

 

Embrace your condition and learn from it. Meditation is also a good consideration. Try the website Calm.com for a positive approach while you get to understand your current situation. Best to you!

 

Hi Sarah

I agree with the first comment. I started to have attacks in my mid 20’s, mostly from my left ear. After tracking when they happened I noticed it was occurring around my menstrual cycle. I battled this for 1.5 yrs. I wax put on Triamterene-HCTZ. This helps regulate the fluid in your inner ear. I was told by a dr that this particular diuretic is the only one that helped with inner ear fluid. I was ok for 25 years. Then in my late 50’s started to have attacks from my right ear. Unfortunately I’m one if the few that has Ménière’s in both ears. My husband and I started to track episodes. We used to hike a lot. I went to an ENT allergist in Danville,PA Geisinger Hospital. This doctor specializes in Ménière’s patients and does specific allergy testing. I found out that I was allergic to practically every tree in our backyard and other stuff. This clinic developed a specialized immunology drop which I take daily. The attacks on my right side were fierce and lasted 2.5 years.At that time I had to drive a lot for my job. I started to get anxiety when I felt the attacks coming on. So I was prescribed Ativan. I am happy to say that the drops, limited Caffeine and a very low sodium diet have kept me attack free for many years. That being said I ended up with significant hearing loss from Ménière’s and still struggle to understand spoken speech. But I will take that any day over the awful attacks. Please try to accept the situation as stress only exasperates the situation and brings on attacks. I don’t know where you live but if you’re anywhere near Central Pennsylvania you can look up the doctor at Geisinger Danville. He was a lifesaver for me

 

Hi, Sarah, sorry to learn this has affected you at such a young age.

I would echo what @burd said; however, I will also add to it from my own experience.

I was diagnosed at 37. I turned 57 this year. So, as you can see, it is a 100% reality that you can live with this and succeed and love and be loved. Additionally, I have been gainfully employed that entire time and only had one day of work that was affected by this. All I can say about work is, be as transparent as possible if you are comfortable with that. My immediate managers, directors, etc. as well as coworkers I was friends with knew exactly what was going on and were very supportive. Personal life, more of the same. At the time of my diagnosis, I was married (still am) with three kids who were all grade school age at that time. All I can say is you carry on because there's no choice--you have to. Not sure what you do, but is remote work an option?

Your life will become different, but that doesn't have to be all negative. I'm sure you have gone through the: "Why is this happening to me?", etc. and that is totally legit to ask. You also may experience anger, anxiety and depression. I still go to therapy and take antidepressants 20 years on.

There's really a lot to say here and I don't want to create an ultra-long post, but most of what I want to convey is that it's not the end of your life as you knew it. You are not just your diagnosis. You are the sum of all your amazingness plus this condition.

Also, have you considered a second opinion? There are conditions with similar or the same symptoms as MD that may be treatable--worth considering at least.

Lastly, please do research this forum as the amazing people on it are very supportive, knowledgeable, and helpful. Learn as much as you can because there will be times when you will need to advocate heavily for yourself.

Take care, and feel free to PM me any time if you have questions.
--Kevin

 

Sarah,
Your post is the only one I have responded to on this board. I am also newly diagnosed about 3 months ago and I can feel the anxiety and hurt in your words. I am a 43 year old female, thought I was extremely healthy until this happened to me. I have a history of ear infections as a child and my ears were the one thing that was always affected most if I had a virus or cold as an adult- which was rare. The only reason I knew I had Covid was because my ears hurt and were clogged.

About a year ago, I went through an extremely stressful event in my life and experienced my first episode of vertigo with a plugged ear feeling. Fast forward a few months and the plugged ear feeling came and went, but I was flying a lot so I chalked it up to that. My visit to the ENT stated it was simply Eustachian tube dysfunction. This spring, another very stressful event and the ear fullness got worse followed by several disabling vertigo events with vomiting. After this I saw my ENT again and a hearing test showed moderate hearing loss which led them to this diagnosis. Like you, I was absolutely terrified. So many of the online resources I found were absolutely depressing and made it feel like my life as I knew it was over. However, because I dug into the research so deeply, I have already learned SO much. I discovered the John of Ohio protocol (found easily on these forums) and became very interested in the viral link as both of my events occurred after a period of extreme stress (much like herpetic outbreaks). I then found a Doctor in my state (Florida) who believes in the viral theory and got on a plane the next day to see him. I have since been on Valacyclovir, along with the other vitamins from the JOH protocol as well as a few additional supplements (I will list all below). I have had only one very minor instance of vertigo (leaning to the right) since being on the antivirals, and the fullness in my ear has improved. I am also watching my sodium intake, drinking a lot of water and trying very hard to minimize stress in my life. I am working from home one or two days a week which has helped tremendously.

I think the biggest takeaway like others have shared is that you have to try to find what could be your "root cause" and triggers. It could be viral, allergies, autoimmune, etc. It may take awhile to find it, but many who have taken the time to truly track their nutrition, hormones, etc have been able to successfully control the disease. This is what I plan to do. I am hopeful the antivirals are working for me. However, if they don't I will keep on trying to find something that does. One thing I read from another forum was that the majority of people with this are able to live a mostly normal life, and not to be distressed by the forums because often it is the newly diagnosed like ourselves and/or others who are in a hard time who post the most. I am posting because I have promised myself that I will try to help others in my situation, even if I am doing well and have no need to be on here. There are so many others on this board who thankfully also post their successes and lifestyle changes that help them. I hope to be like them, able to periodically come online to help others with what is working for me. Like any chronic illness, the majority of people are not on forums and are out living their lives. Will there be times of hardship, will there possibly be hearing loss that requires hearing aids or even eventually cochlear implants? Yes these are all very real possibilities, but it also possible that you will do much better than you think and will learn to live well with this. I am trying to stay positive and live one day at a time without always going to the future and "what if" scenarios. If you pay attention to many of the posters, they may have had some rough periods but so many have also had YEARS of relief or minimal symptoms. This situation has also personally brought me back to a wonderful place in my faith. I think sometimes we have to do the best we can and leave the rest to God, the ultimate healer.

Find an excellent ENT, even if it means some traveling on your part. Do not give up hope. Let your employer know your situation and find out if there are any remote work possibilities to make you less stressed. Let your friends and family be of support to you without shame. Make plans just like you did before, take care of your body and give the treatments/lifestyle modifications time to work. Right now I have Valium as a "rescue" med in case I need it, but thus far I haven't. I keep it with me just in case. I was terrified at first of even leaving the house alone but now I am much better. Sure, something "could" happen while I'm at the grocery store, etc but unless it truly becomes a regular occurrence I am going to live my life. This is all what I am trying to do now, and I hope we both do very well. I am by no means an expert on any of this as I am brand new, these are just my takeaway opinions from my research.

My current lifestyle modifications/drugs/supplements:
Valacyclovir antiviral therapy (my only current RX)
Lemon bioflavonoids
Gingko Biloba
Vinpocetine
Multivitamin
B5 and B6 vitamins
Probiotics
DHA Omega 3
Chlorella
Turmeric
Ginger
Dandelion tea (natural diuretic) on days where my Sodium intake is higher (restaurant food)
80 oz water daily
Sodium under 1500 mg daily

My symptoms at diagnosis were:
Left ear fullness
Vertigo with vomiting every 2 weeks
Left ear hearing loss
Very mild occasional tinnitus
Sensitivity to loud noises

All of these have gotten better since diagnosis.

Hang in there! I am here for you if you need support.

Katie

 

@ROx - hi - could you share who that Doctor is please?
you said this - "Central Pennsylvania you can look up the doctor at Geisinger Danville. He was a lifesaver for me"
but could you let me know who you mean please
thanks

 

Katie, I live in Florida too. I was diagnosed a year and a half ago. Would you share the name of the doctor that is treating you now?
Thanks, Bill

 

Hi Sara, you can live with this. Each person has a different path, but for most the worst of the disease is the first 12-24 months. This is when the attacks are more aggressive and frequent. Additionally, each person needs to find what works for them and what doesn't. In general, what usually works the most is: Betahistine 24mg/8h until the attacks stop. From then on, I take 24mg every 24 hours, but a lower dose would be fine. Antivirals for several months. I took them for about 6 months, the last month I started taking lysine. Lysine 1gr a day, this simple thing is a natural antiviral, so take it a month before stopping the antiviral. An antidepressant that helps you be less stressed to reduce cortisol. Sertraline works for me, but each person has to find the one that works best for them. Note that the first few months taking an antidepressant can be a roller coaster of feelings and emotions, but then it stabilizes. I personally don't take anything else, I tried a lot of other things, but I didn't feel like they would work.

 

Hi Bill,
I use Tampa Bay Hearing | Patient First Compassionate Hearing Solutions and all their doctors (Allen, Bartell, Danner) are highly recommended for this disease.
You can see their treatment recommendations based off this publication they wrote.
https://www.optecoto.com/article/S1043-1810(16)30056-2/pdf

I hope this helps!

 

Hi! Did it take you around 6 months for the antivirals to fully take effect? Just curious about your experience and timeline with them. I've been taking for 2 months now, have definitely seen improvement but not totally symptom free yet.

 

Three days after starting antivirals my fullness was greatly reduced but it took 6 months for the vertigo spells to completely end. So yes, stick with it. I continued to improve for another 6 months, all symptoms except for some lingering tinnitus have disappeared.
I'm still taking 3 grams a day and will never stop. October 1st 2019 was my last vertigo episode.

 

That's so amazing that you've had such great results and I would keep doing exactly what you're doing as well. My dosage of antivirals is valacyclovir 500 MG three times a day and I am supposed to pull back to two times a day starting tomorrow. I started taking Lysine on Sunday just to give an extra boost as I pull back. If I do well on the twice a day I am going to stay on that indefinitely unless my ENT suggests otherwise. I am not concerned about taking antivirals long term and will have bloodwork regularly to check that all is well. The specialists I go to seem to have great success with antivirals and conservative methods to get the disease in check and I am hoping to be another success story. The fullness in my ear still comes and goes but it is not nearly as bad as it used to be. I have a follow up appointment next month to recheck hearing. Oddly, I have only had tinnitus once or twice and it was for about an hour or so each time. I have a lot of crackling in my ear though on occasion when swallowing.
Out of curiosity, do you follow the low sodium diet or take a diuretic?
I really appreciate you sharing your story on this thread even as you've been mostly asymptomatic for years. I do believe that the people who manage their disease well don't check in on these threads very often, so it can be scary for the newly diagnosed like myself to read only about the struggles when there are likely a lot more out there with better outcomes than what is being reported online.

 

I did quit vodka, coffee and the salt shaker all in one day back when I was really bad. Other than that I eat whatever I want. Recently I did start taking a diuretic...I'm old and started getting "fat feet".

 

Thank you very much!

 

Hello thanks for info I am in Central fla I will ck out Tampa Bay hearing sounds good and they deal with Menieres disease.

 

Hi Sarah, Hi Katie, I have just been referred to Dr. Bartell at Tampa General Hospital's Physician Group. I'm currently waiting for a confirmed appointment. I was diagnosed with Meniere’s disease many years ago (I'm a Tampa native) by Dr. Iglesias, I was experiencing hearing loss in the left ear. I have had my share of vertigo attacks throughout the years. However, this month I started falling without any apparent reason or warning. I almost felt like someone just pushed me down. I have now had 6 falls in 4 weeks. Since I had Open Heart Surgery a year ago, I started with cardiology, I had an ECHO, a Carotid scan and they verified my pacemaker was working properly. So my next visit was to my ENT, Dr. Hope Bueller, MD she believes I have Crisis of Turmakin (drop attacks) and has referred me to the same group at Tampa General. I'm drinking 64 oz of water, started a low/no salt diet this week, and I haven't driven in over a month, but I'm hopeful. If you're in Tampa, I would love to chat and learn more about the diet restrictions and really - what not to eat. Sarah, I see you're drinking 80 oz, I’ll try to get up there. Also, I've read a lot about fullness in the ear, but I don't think I've experienced it, what does it feel like?

In addition, to my hopeful appointment with Dr. Bartell, I have an appointment with a neurologist this week, I'm just trying to determine why I'm just falling. Thanks for posting!