After 12 years of wondering what is wrong with me I was diagnosed 2 days ago. Still processing it and wondering which health issue I have will get too me first. Looking through the symptoms makes understand the problems I have had all this time, but wonder why no one has figured it out before. I can't understand the duration of the first appearance of MD as with me the initial onslaught lasted several weeks keeping me bedridden for the first 2 weeks and stumbling around for the next 4 weeks. From what I have read this is not normal. Vertigo is my constant companion and I have mastered how to live with it. It usually gets me when I'm not concentrating on what I'm doing, and over I go. The specialist also discovered I have no sensation in my legs, an unwelcome shock being T2 diabetic. I'm used to living with multiple health issues and am just adding this one to the ever growing list. My big problem is my diet is becoming more and more restricted. I'm KCD, T2 diabetic, IBS, SIBO, suffering mini strokes over the last year, fill of osteoarthritis, run on High BD, have cholesterol levels and react to most medications. Yet my eyesight is holding up reasonably well and have good hearing in both lug holes. Currently only taking meds for the IBS and just started a second trial on blood thinners. I'm not sure where to from here but I guess I'll just muddle on until a specialist decides to help. Cheers
Interesting. I wasn’t aware Menieres could be a diagnosis with no hearing loss. As is commonly stated: welcome to the club no one wants to be in! This is a great site with a ton of information and great members.
Sadly I'm in many clubs no one wants to be in. I can not say my hearing is 100% but from my perspective it appears to be excellent, left side not quite as good as the right side. I only miss the things I don't want to hear! A hearing test might prove otherwise. Apart from hearing and eyesight I get most of the stage 3 symptoms, sight deminishing with age, I think, I hope. Migrains are particularly severe, constant vertigo weekly episodes of brain fog, forgetfulness and lack of cognitive abilities. When not concentrating I stumble, I cannot walk heel to toe without falling, but have never felt sick, even with the initial severe enslought. That knocked the stuffing out of me for a month. Because of other serious health issues I'm subjected to it is possible they are masking feeling sick. I'm treating MD as just another ailment to add to the growing list I'm dealing with.
Hello, DC39. I am so sorry for all of the health problems with which you are dealing. I will tell you my story in hopes that something in it will help you. I am a caucasian woman in my mid-50's living in the United States. I am from Texas but now live in Michigan. My problem is with my left ear. I started having tinnitus in 2006 and vertigo episodes in 2007. The vertigo episodes were just occasional. I theorized they were BPPV, as often they were triggered by me turning over in bed, and often I could address successfully with the Epley maneuver. I kept the episodes at bay by reducing my caffeine intake and increasing my water intake. However, in 2018 or 2019, the episodes became more frequent, and changed in nature. They were accompanied by a feeling of fullness in my ear that I do not think the earlier episodes included. Often the trigger was NOT turning over wrong in bed. I could tie some episodes to having too much caffeine and not enough water, others some to having eaten too much salt. Others were a mystery. The episodes were more severe, in that they usually led to vomiting. The Epley maneuver no longer worked. These episodes became more and more frequent until near the end of 2021, when I was having an episode every week or two. I did a lot of reading on the internet, and found this forum. I also found a website (Laura Fisher Nutrition) written by a nutritionist in the UK. Based on what I read, I suspected gluten might be an issue. I had a celiac sensitivity test done a test with my functional medicine doctor. It showed I had antibodies to some components of wheat. I stopped eating gluten. About this same time, I went to a hearing doctor. She did several tests. She confirmed I had hearing loss in my ear. She diagnosed my condition as 'hydrops', said the frequency in which I have hearing loss is not the usual one for Meniere's. I had already started avoiding gluten. She agreed and suggested I avoid dairy as well. She suggested I do a series of allergy tests (with her practice); however, I decided to hold off, as I assumed they would be expensive, and I already had a course of action (to avoid gluten and dairy). In spite of the doctor's diagnosis, I believed/believe I have Meniere's. I continued to research it. I read more posts on this forum and found the John of Ohio regimen. I started taking lysine every day. Since I stopped eating gluten and started taking lysine, I have only had two or three mild episodes (only one with vomiting). They seem to be tied to my eating too much salt, and maybe to eating gluten (as I occasionally have gluten on special occasions (e.g., a slice of birthday cake at a birthday celebration)). if you read nothing else, please read this and consider acting on it: my theory is that the problem is caused by a virus, that gluten feeds the virus, and lysine fights the virus. I still have the tinnitus and my hearing has not improved; however, I am thankful to not be losing days to vertigo/vomiting episodes. I am pretty careful about gluten, mostly careful about salt, but need to do better about avoiding dairy (I never drink milk, but do eat cheese a few times a week, and I occasionally eat real ice cream - although I have found oat milk ice cream to be a good substitute). Also, I could do more of the JOH regimen. I have also read posts by Mary of the West and have started reading some Anthony William ("Medical Medium"). I am not sure that I am 'all in' on him, but I will say that I did one of his cleanses, during which I felt great, lost weight, and didn't have any hot flashes (which is probably my second most aggravating health condition behind this ear condition). I hope something in this post helps you and that you find some relief. I wish you hope and healing.
I just realized - I never thanked John. Thank you, John of Ohio, for helping me and so many other people suffering with this condition!!!! Thank you also to Mary of the West, and to Laura Fisher if she is on this forum.
Hi Lizzie, I was living in Detroit in the early 70s then moved to Dallas and finally to New Zealand in the 80s 40 years ago. I'm in my 70's and gathering more health issues almost everytime I seek medical advice. My kidneys failed in 2013 due to a severe bout of campylobacta, lasted 18 hours until I managed to crawl into hospital. My onslaught of health issues started then. My eye sight suddenly changed in my 40's , thought it was age related and the fact I was a watch, clock and instrument maker. In my 50's my Dr at the time rang me one night to tell me my cholestrol levels were high at 9.8 and accordingly to my records had been for sometime. Previous Dr's had never told me. In 2013 I got food poisioning through the supermarket cross contaminatin ham with chicken, two weeks of hell ensued. Ever since I have been on a strick diet to keep what kidney function I have been able to restore as high as possible. I was diagnosed as T2 diabetic shortly after which was no surprise as I knew I was having problems back in Dallas. Ended up with IBS and muddle through life as best I could trying every version of a diet I could with no success. Meantime managed to rip up both rotator cuffs, one was finally stiched back together 6 weeks ago after 10 of working on. Been having mini strokes earlier this year and finally have been put under care of the local Gastrology dept. Both my BD and Cholesterol levels have beenhigh for over 20 years and in the last 3 years have chewed through a bucket full of alternative medications reacting to all. For the last 10 years I have been dealing with brain fade, poor comprehension, memory issues, instabilities, constant vertigo and tinitus, agression, anxiety and likely more I can remeber presently. My first indication of these problems was around 12 years ago when I got up one morning and landed on my face kissing the carpet. We now understand full on MD attack. A year latter took a dive of the roof 3 meter to the concrete afte vertigo got the best of me. I had in my brain to roll when I hit the ground, all I remeber was splat! In hind sight possible a MD attack. Did some significant damage to myself, but no as bad as it could have been. Seven months sitting on my rear end waiting for the bones to heal. Then and other 7 after having the incorrect size plate removed from the foot, couldn't walk with it. I don't know why but I react to 99% of all medication I have been prescribed and am at present starting meds to fight the vertigo and other symptoms of MD, 3 days in. I'm dealing with Gastrology, Neurology, Cardiology, Orthopedics and the Eye clinic. I'm just greatful that they have all taken me seriously finally and I'm getting some head way. As long as I know what I have I can deal with it. Nothing is going to stop me, I just modify the way I do whatever I need to and keep on going. While it is very early days for the MD diagnosis I have worked through every symptom I have and won't give up fighting. Came very close to ending it all twice but after stopping a person suiciding realised the error of my ways. My instinct is to fight no matter what is thrown at me. I'm now 2 year plus after my previous Dr told me I would be dead 2 years ago. You can imagine the delight I have in telling her when I see her by chance "hellow I'm still here" The same Dr that told me the shoulder pain was in my head! Probably the worst thing I ever did was to move to a third world country with a fourth world health system. The best part is it if funded if you can get it, after 10 years of trying I'm getting the help and appreciate every bit of it. I hope this all makes sence as it is not a poticularly good morning for me today, blurred vision and full of sinus. Summer here. Off to se a pharmacist tomorrow to see if they can prescribe something for BD, diatetes and a blood thinner I won't react to. Not feeling positive but hopeful. Cheers
I find that diet is very important to controlling my vertigo and general body and brain inflammation. I started on a diet from The Microbiome Solution a month ago, to "heal my gut" and change the gut bacterial balance. I've been avoiding refined sugar and dairy, and increased my vegetable, nuts and fruit consumption, and cut way back on simple carbs. This prevents insulin spikes as well. I have noticed a significant improvement. My brain doesn't feel as irritated and my cervical spine isn't being pulled out of alignment by tight neck muscles. Many people with Meniere's seem to have general inflammatory problems related to blood sugar (and possibly gut imbalances). Refined sugar especially is The Enemy.
Diet is increedable important to the functioning of the body, full stop. I have been on a very restrictive diet for over 10 years and wonder if there is going to be anything left of my diet to eat. Gluten free, lactose free, salt free, sugar free, red meat free, spice and herb free and no fun with food! I only eat to sustain my life. My dietitian has tried everything and nothing changes. Bp remains at 170/117 typically and glucoes after starvation averages 12.2. The only improvement is my cholesterol level with my diet, 6.8 down from 30 years of 9.8 average. I don't buy prepared food off the shelf, forgotten what fast food looks and tastes like. Don't smoke, drink or have fun! My only vice is klinging to life which I appear to do pretty well. As I have said before MD is just another addition to my growing health portfolio.
Kinda weird: I’m from Michigan and moved to Dallas in 2011…dx’d in 2005 in Michigan. Live in Arizona now. Small world.
Wow, DC39, you have great self-control with that diet. I can relate to the thought "What is there left to eat?" although luckily I have discovered that gluten doesn't seem to be a culprit for me. Neither is salt consumption a problem. That opens up more food choices. Maybe hormonal imbalances are causing trouble for you? I follow Mercola.com and have found some interesting information there. Also, be sure to have a good chiropractor check alignment of your cervical spine. When mine is off, I can be thrown into sudden vertigo.
Hi, If nothing else I have great self control and am very determined nothing will stop me living a comfortable life. If I can't have that then why bother at all. Just starting to react to Betahistine meds. The brain fog and memory are getting worse, vision is more blurry but the vertigo is minimal. Damn if I do, damned if I don't. After 3 days of it I have stopped taking it. I know I was doing better off it and managing to live with the vertigo quite well. I also notice the Tinitus has become a constant companion as aposed to random bouts. Not sure why but my BP is up as well. Off to see a pharmasist this morning to see if we can at least sort out some meds for blood thinner, BP and Diabeties that doesn't cause me nasty reactions. Of caurse now I'm dagnose with MD is causeing some of the symptoms and not medication. A question I will have to figure out. Wondering if it may be best to just plant my head in the sand!
Wow 3 days of Betahistine and the vertigo is almost gone. Down side is every other symptom is enhanced by it. Brain fog, memory, cognitive skills and tinitus all increased with a distinct lack of concentration. Stopped it this morning and "normality" is starting to come back, how long before I'm back to normal is anybodies guess. Luckily I'm used to the vertigo and know how to handle it.