Hello. I am surprised I never found this page before. I, like many more before me, probably found it the same way. Desperate and symptomatic. Background: 36 yr old firefighter. Very active. Very healthy. First sign of trouble: I caught COVID before we knew it was here. Many of us got sick after exposures at work before we were even aware it was in our country. My infection ultimately settled in my lungs and my right ear. After the illness I had constant tinnitus in the right ear. About 6 months later, I had my first bout of vertigo lasting about an hour. I had a few other vertigo spells and then random dizziness spells. I had maybe 2 episodes a week for a month. I saw an ENT and was diagnosed with Meniere's. The ENT wanted me to start taking a diuretic, however, because of my job I cannot take a diuretic. I asked the ENT if he could examine my Eustachian Tube, because my eustachian tube function seems to correlate with my attacks. The ENT was resistant to any discussion about other issues. So, I got a new ENT. I told the new ENT that my attacks seemed to correlate with many things. Increased mucus production, decreased eustachian tube function, jaw pain, neck pain, right sided itchiness deep in the ear. This ENT noted that I had increased mucus near my adenoid on the right side. He prescribed ipatropium bromide nasal spray to dry out the sinuses, and an antibiotic to address the possible adenoid infection. The nasal spray did not help, but my episodes stopped after the antibiotic. I had constant tinnitus, but not dizziness or vertigo for 9 months. Then I had one long 4 hour vertigo attack and a handful of dizziness spells over a couple of weeks. Then I went another 4 months with only constant tinnitus. I had severe vertigo once and several dizzy spells over a couple of weeks. Then I went another 9 months with out any symptoms other than tinnitus. And then the worst vertigo I've ever had hit me in December. I crawled to my bathroom and had continuous vomiting and had diarrhea. I was sweating and my heart was racing. I laid on the floor for hours before I could open my eyes and try to move to my bed. I then slept for several hours and felt hungover and brain fog the next 24 hours. I had minimal tinnitus for the next two weeks and no other symptoms. I then had another violent vertigo attack the same as before. vomiting, diarrhea, bathroom floor sleeping, then bed sleeping, then hungover for 24 hours. It has been over 2 months of this. My neck pain is horrible and my eustachian tube stops working, and then an attack comes. I have been having some sort of episode every day for the last two weeks. I have had debilitating vertigo for 3-4 hours 3/14 days. And the rest of the days I am having severe dizziness (usually around 6 pm). I saw a new ENT because I moved to a different state. He started me on betahistine 8mg/3Xday about 4 days ago. They also did another MRI to rule out CSF leak. I woke up this morning at 0300 with throbbing jaw, neck, ear, and face pain on the right side followed by crazy intense vertigo, vomiting, and diarrhea. I am starting with a new fire department in 8 days. And I am terrified that I will be fired for this. I have kept around 2000 sodium intake/day since I was first diagnosed. My diet has not changed lately. I have switched to 1000mg sodium for the last two days but have not noticed a change. How long does the change in sodium consumption take to impact symptoms? Does anyone out there have any advice for me or any thoughts on my situation? I had a neurologist tell me I had vestibular migraines. And he seemed as certain as the ENT was with the Meniere's diagnosis. I also was told by a dizziness specialist that I have cervicogenic vertigo. I don't know what to do, or what treatment to do. And, there is a month wait to even see a doctor or get established with a new provider.
ouch, not good. I've had all the same symptoms, "features" as you except for the big pain. Low salt never helped, but I don't eat high salt foods. The only real trigger I found was MSG, which is on "healthy" foods like salads from Wendy's etc. I also recommend the book Heal Your Headache for recommendations on diet. Meniere's is a bitch. You may have to start thinking about a career change. As you will see on this site, it does often go into remission, for a while. Sorry I can't be of more help and cheer.
Do you have history of daily attacks? And if so, how long did those periods last? thank you for the book recommendation. I will check it out.
I have had really bad attack days and then slow recovery days, just like you. Then an ok time of unknown duration, then we repeat
Have you ever had daily attacks for an extended period of time with no remission? If so, what did you do to manage symptoms? have you taken Betahistine?
Betahistine didn't help me, but some people think it helped them. I think anti-virals helped me but as just one person, you can never tell if it is coincidence or for real. There is a Dr. Gacek that promotes the use of AVs.
Just a few weeks I think but I don't really remember. My very first success was with MEGA MEGA doses of Vit C. I bought some that is bound to micro blobs for better absorption. (there is a name for that but I can't think of it right now) I took it to the point of diahrea (sp). Very gaseous but I kept it up for a few days. It seemed to break the cycle and gave me hope. The next step was the anti-virals and Heal Your Headache diet
Im gonna go get Vitamin C right now. I picked up some L-Lysine and a couple of other things off the JOH list. But, not the Vitamin C. Do you know what dosage you used?
liposomal was the word I was looking for - Google it. See if you can find liposomal Vit C. I took MEGA until I had diarrhea. I believe Solari, the wonder person who runs this site did that years ago. I was desperate but it actually worked. You can't keep it up but it is a start. Open the windows LOL
There seems to be a correlation between MM and Eustachian Tube malfunction. Someone else in this forum shared this link:https://www.itmedicalteam.pl/articles/menieres-disease-with-patulous-eustachian-tubes.pdf And you are the first person, who also has this itchiness in the ear. But strangely I have it only in my healthy ear… I hope it is not a foresign that it will get sick too…
@Capnbny - the only other thing I can offer is that my Meniere's symptoms onset in the midst of my long distance running years. My ENT told me to quit & do more moderate exercise. I poo pooed his suggestion as I didn't think it would make a difference. I quit running a couple of years ago (5+ yrs after it was suggested) & started distance hiking. MD symptoms persisted. I'm older & had my hips replaced last year & have an arthritic lumbar spine so had to cut way back on my mileage in the past year. My Meniere's symptoms are nearly gone except for tinnitus & occasional ear fullness. It took many months after the exercise reduction for that to happen, but I feel I need to "eat crow" & acknowledge that my ENT was correct. I don't know your exercise level, but I do know as a fire fighter you have to remain fit. Any exercise I did that caused neck strain would cause an MD flair i.e. weight training, ab work & hard (i.e. rope slamming) or long cardio, specifically. If you're doing a lot of weights, ab work, & cardio, cutting back might make a BIG difference for you.
my workout regimen is pretty extensive. Usually 6 days a week. Weight lifting, cardio, rock climbing, cycling, swimming. Because of the symptoms, I’ve been forced to stay out of the gym for the last 2 weeks. But the rest hasn’t helped yet. I hope it’s not fitness related. But, if so, I will have to make changes for sure.
Hi, You mentioned your attacks involved severe dizziness, vomiting, heart racing, fever, laying on bathroom floor (4 hours), then hangover, sleep, etc. Mine were similar I also had chills, sensitivity to sounds, smells, light and it lasted ~12 hours and would recover to normal and come back in 2 to 3 days. This lasted about 2+ months. I, too, was healthy, strong and without health issues. What’s interesting in my case is that I had the same reoccurring prodrome: disequilibrium, tingling running down my face and then vomiting. What helped me was taking Odansetron, a prescription drug to prevent vomiting. My internest prescribed it since I was losing so much weight. Somehow, that little pill stopped the whole cycle. I have had three onsets since then and it stopped all three. Thank God! You may want to try that! It’s been over 2 months! Yay! Btw, no one really knows what was wrong with me. ENT, etc. we’re useless!
If your neck is bothering you, maybe it would be worth your while checking with a upper cervical chiropractor that does the Blair technique. Also some have had good results with a NUCCA chiropractor. Good luck.
What was really weird to me was that my MD started when I was living as healthy as never before in my life. No alcohol, sport, slender figure, etc.. It is really hard to understand where it is coming from. MD is still a mistery. I would suggest several things and this forum will help you. Work your way through what might be the issue for you and dont stress yourself. You will not heal yourself quickly. As horrifying as that sounds, you can find comfort in that you pretty much know the worst thing that can happen to you: the world-ending vertigo attacks. I would start with antivirals and the entire approach to that. It seems that has helped a lot of people. If that doesnt help, try tackling autoimmune issues you might have. Then I would go for TMJ, spine, neck etc.. After that maybe checking for stenosis in your veins above neck. It seems there is some research in this area and it might be the issue for some. I am on this journey as well. I feel terrible at the moment, with the dizziness and tinnitus/hearing loss, but i havent had a vertigo spell for 6 months. I am currently on aciclovir 1000mg/day and will continure that for another 6 months. (the dr gacek regimen)
Cap, sorry for not seeing your post sooner. There is light at the end of the tunnel. I posted my journey on this forum. There are plenty of people with Menieres on this forum (including me) living a normal life.
Could Meniere's be primarily, or even entirely, originating from the cervical spine? I have been wondering this for years. I have a misaligned Atlas and C-2. This is due to an irregular gait stemming from a long-ago ankle fusion, and I also have tight neck (mainly trapezius) muscles due to scoliosis. It is hard to keep myself aligned, and I have been going to a chiro for years. I too get fullness in the left ear, numbness on the left side of my face and tongue, and unpredictable vertigo attacks that can involve vomiting, diarrhea, sweating (followed by deep chills) and exhaustion. Triggers are sometimes extending my neck forward and slightly turning it to the left, or biting down on crunchy food. This is what makes me think the neck could possibly be the original source of the whole problem. Anyone else have ideas?
@Capnbny & @JanieJiffy, Your symptoms have some similiarity to those which present with Eagle Syndrome. It's a rare syndrome caused by the elongation of the two styloid processes that grow from the mastoid processes of the temporal bone of the skull &/or calcification of the styloidhyoid ligaments which run from the tips of the styloids to the lesser horns of the hyoid bone (sorry if this sounds like a foreign language). Elongated styloids/calcified s-h ligaments can cause irritation of up to 7 of the 12 cranial nerves which originate in the brain & exit the skull in the area where the styloids exist. Irritation of these nerves causes facial, teeth, tongue, throat, neck, shoulder, arm, eye, skull base, & other pain plus migraine, heart & blood pressure issues, trouble w/ body temp regulation, & many other symptoms. The symptoms the two of you have noted are often present w/ ES. JanieJiffy, I belong to an ES forum & many of our members who have your type of symptoms also have CCI (craniocervical instability) or AAI (atlantoaxial instability) which it sounds like you have. The test for this is a CT scan w/ contrast covering the area from skull base to hyoid bone, to look at the length of the styloids & for calcification of the stylohyoid ligaments, as well as for vascular compression. If you note symptoms worsen when your head is in a particular position, ask to have at least part of the scan done w/ your head in that position. A skull-based ENT surgeon (often a cancer specialist) is the type of doctor you'd want to see for diagnosis. Please send me a private message if you'd like more info about ES or the forum. You can read all about ES without joining the forum, & there are many links to peer reviewed research papers & a list of doctors known to treat ES on the site.,