Hi all, I just found your group but I am not sure if I fit into this group because I do not have full blown Meniers (no vertigo). I was diagnosed with A-typical Meniers or endolymphatic hydrops (depending on the doctor). Since November 2014 I have had low frequency tinnitus, hearing loss, sensitivity to sound and the fullness feeling in my left ear. The only thing I noticed right before the onset of my disease was that my wedding ring would not fit on my finger every day (to the point where I almost had it resized). The only time that happened in the past was if I had a salty meal or was bloated due to my menstrual cycle but it went away after a day or so. Now it is always hard to get on or off (I am not sure if that has any connection to my disease). Some days are better than others and are easier to try and ignore but most are loud and unbearable. I have been to my primary doctor, 2 ENTs, 1 specialist, and will be trying another ENT next month. But I get the same answer from them: "atleast I don't have vertigo and this is something I will have to live with." The 2nd ENT has run several hearing tests, had me on a run of steroids, then put me on a diuretic and low salt diet once she determined it was A-typical Meniers. She sent me to the specialist who said there is nothing he could do and took me off the diuretic since it wasn't working and sent me back to my ENT. I made my ENT run allergy tests (including food) only to find I am allergic to Alternaria mold and I have a high level of IGE which indicates the presence of an allergy. Then my primary doc ran a lot of bloodwork for everything from autoimmune to vitamin deficiency, blood cell counts, etc. and the only thing that came back off was my thyroid (atleast we found that out) but that is not connected to my ear. In my online research I keep reading about possible causes which can be the Herpes virus or Candida (fungal/yeast infection). So I called my primary to have her run those specific tests. I feel like there has to be a cause for this, my body is telling me something. My problem is that it seems like there is no one willing to help me and all the research is left to me. I don't understand why there isn't a doctor out there who will go through a checklist of tests to run along with dietary and supplement information. I even wrote down everything I ate and drank for 2 months to see if something triggered my symptoms but could not find a connection to anything. I still watch my salt intake, cook with fresh fruits and veggies, don't eat processed foods and workout. I am also using essential oils and wish I could figure out a treatment using them since they work well on everything else. Sorry for the long message but that is my life in a nutshell. I really am not sure what else to do. It is hard to get through each day and feel like this is never going to get better. There is so much info on the web that it is overwhelming. Some treatments work for some people but not for others and I can never find anything on A-typical Meniers (if that is what I have). Thank you all for letting me tell my story.
Welcome to our world....not really! So many of us have gone down your path and continue to do so. Most of us have had violent episodes of vertigo and daily dizziness too. I have seen so many Dr's I've lost count but then I found this Forum and learned about Antiviral treatment and Lysine thanks to people like Vicki and John of Ohio. I have enjoyed almost 4 months now with only a few dizzy days. I still have some aural fullness and take a diuretic, plus tinnitus that never leaves but is lower than before. But the violent vertigo rarely rears it's ugly head any more and the dizziness only lasts a short time. I know it's frustrating and time consuming, but keep looking and when ever a Dr says "just live with it", it's time to change Dr's again! Good luck and best wishes.
Your symptoms are a lot like mine I get dizzy Spells and only one vertigo attack when my thyroid Level was zero. Before I got to the thyroid part Of your post I was goi g to say check your thyroid Since you mentioned water retention . One internist told me the thyroid does cause Ear problems similar to meniers, the Ear doc don't know about thyroid and some endocrinologist Don't know about meniers. Not to mention Neither do many ent"s. keep checking your thyroid Everything I read about meniers mentions The endocrine system including diabetes And meniers like symptoms, a friend of mine Had a sluggish thyroid which gave her Vertigo and echoing and ear sensitivity , So there is a connection . Good luck keep is posted
Thanks for the quick responses! I had no idea my thyroid could be linked to my ear problem as well as the swelling in my fingers. I do have mild hypothyroidism and have been on the smallest dose of Levothyroxine for over a month now. I haven't seen any improvement with my ears but definitely with my energy level, moods, depression, etc. I am having a blood test on Thursday to check my hormone levels. Thanks again for the bit of info. I will keep everyone posted.
Dr told me when my thyroid get corrected It can still take 3 or 4 months to go away Due to inflamation . Be patient... That's What I'm waiting to see as well. Fingers crossed )
Hi All, I just got the results back for my bloodwork. So my blood tests show that my thyroid is still high so I am increasing my levothyroxine dosage. Candida is negative, Herpes IGM antibodies negative (no active virus), IGG antibodies positive (which means I had the virus sometime in my life (could have been a bout of warts I had on my legs when I was a child). So I guess that rules out fungal and viral causes. I asked my Dr. if my finger swelling could have been caused by my thyroid and she told me "no". But it is still odd that at the same time my Atypical Meniere's started, my fingers started swelling. I really feel there has to be a connection there. Especially since I have done all the blood testing and allergy testing to rule everything else out. Any insight? This is so frustrating! Thanks!
actually if you have the virus you always have it. So you can't rule that out as a cause of your Meniere's symptoms.
IgM vs. IgG When an individual contracts herpes, the immune system responds by developing antibodies to fight the virus: IgG and IgM. Blood tests can look for and detect these antibodies, as the virus itself is not in blood. IgG appears soon after infection and stays in the blood for life. IgM is actually the first antibody that appears after infection, but it may disappear thereafter. IgM tests are not recommended because of three serious problems: Many assume that if a test discovers IgM, they have recently acquired herpes. However, research shows that IgM can reappear in blood tests in up to a third of people during recurrences, while it will be negative in up to half of persons who recently acquired herpes but have culture-document first episodes. Therefore, IgM tests can lead to deceptive test results, as well as false assumptions about how and when a person actually acquired HSV. For this reason, we do not recommend using blood tests as a way to determine how long a person has had herpes. Unfortunately, most people who are diagnosed will not be able to determine how long they have had the infection
Janicer don't be surprised if after a month They still increase your thyroid meds They have to do it gradually regardless Of how high or low your levels are. I'm surprised The doctor said your fingers wouldn't Be Swollen from thyroid , you retain fluids When your thyroid is sluggish. Give it time When your thyroid is regulated if Symptoms don't diminish, maybe you Should give the antivirals a shot in case it's viral. Good luck
I have been on a low dose synthroid for years and it has no affect on my MM, antivirals is what took care of my MM symptoms, but Janice as I posted above, HSV could very well be causing your MM symptoms since you do have the virus in your system and HSV never goes away.
Hi Janice, maybe you should add going to see a neurologist to your list. Being that you don't have vertigo it may not be menieres. I am not saying that the ENTs are wrong but you would be surprised how often just throw a diagnosis out there that sort of fits the bill. I myself am still on that journey as I have been to every doctor under the sun including the house clinic only to be told I most likely don't have menieres but was prescribed betahistine by Dererbery which is for menieres. So still searching for my answer. My oto in Augusta who I actually liked better than the house clinic said that getting the thyroid treated is imperative as it could at the least be attributing to meniers symptoms. I also have a thyroid issue and am in the process of treating this as I am trying to find a more homeopathicish endocrinologist. Due to my thyroid issue I seem to have issues with circulation at night. I go for a mile jog most mornings in addition to working out and this seems to help with the hearing in the mornings and tinnitus. If you don't have a hearing aid yet that could help with the tinnitus. Maybe just trying the lemon bi-flavonoids and vinpocetine from JOH would help with the hearing and tinnitus.
Janice, Just want to say that I relate so much to what you are going through and know the frustration. And my name is even Janis, just spelled differently. We've got to keep looking under every rock to figure out a way to improve our quality of life. I have thought and thought about this and tried to find a pattern of something I'm doing, eating, taking, etc. and I keep saying "I don't know, nothing makes sense." I'm so thankful for the valuable input of others on this forum. They help my stress level.
I totally agree with Loo Hoo's doctor I don't know if its the cause Of my mm symptoms or not but I have been on a high Dose of synthroid most my life , but never Had mm symptoms until my levels became Very overactive.
I'm in a similar boat. No vertigo, occasionally dizziness that lasts for extended times, but everything else. (Aural fullness, tinnitus, low-frequency loss.) In my case all three tend to increase/decrease over time and I can't figure out what may be causing the change. My diet is relatively consistent - At this point I've refused to eat like a rabbit - and I'm only taking a few supplements since May. I have noticed that lack of sleep and stress is a trigger but ... that's about it. I also agree with the doctor statement. You really need to press them to get certain tests run, proscribe things, etc. As with all professions, doctors aren't as up to date on certain things. If you really want to push them on antivirals, or antifungal, etc. get the relevant papers and ask them to take a look. My current doc had heard of Gaeck and JoH long before I asked him about them.
Thanks again everyone for the responses. I went to my 5th Dr. today and brought him the info all of you have suggested. He wants to do an electrocochleography test that will test the pressures in my inner ear. He also suggested a "plug & play" course of action. Start with one thing for 3 weeks and if it doesn't help, move to the next. 1.) No caffeine, chocolate, red wine, low stress & low sodium. 2.) Gingko biloba & grape seed extract (Lipoflavanoids). 3.) Diamox diuretic (different from the Triamterene I was on when this started). 4.) Insert a tube in my ear to inject steroids directly in my inner ear. I asked about the antivirals and he said he has never had it work for his patients but that doesn't mean it doesn't work. He would gladly prescribe me some if I wanted to try them. So this has been and will be a long process. I am hoping between my thyroid and something he suggested I can find some relief. Not sure what Dr to go to next once I've been through all of this. November will be a year living with this and it is getting harder to stay positive. Thanks all for your info and support!
I don't know if this is a practical suggestion for you but I've heard great things about the Mayo Clinic. I know people who have gone there for various problems -- you are assigned to a TEAM of doctors who check you out for every possibility. The people I have met who have gone there really rave about the doctors there. Best of luck to you.
So my latest news...took an Ecog test that showed I don't have Meniere's. The current ENT thinks it's endolymphatic hydrops (which another Dr. also thought). He thinks my hormones/thyroid could have something to do with it because of my finger swelling that started around the same time as my ear issues. I was diagnosed with hypothyroidism several months ago so I am still working on getting my Levothyroxine dosage correct. My next blood test is Monday when I am sure my dosage will be increased. He also prescribed me a different diuretic to try. So I guess my plan is wait until my thyroid is regulated and pray my ear gets better once it is normal. If that doesn't work then maybe try the antivirals. Any other words of wisdom? Thanks
I am a carbon copy of you. I have been diagnosed with A-Typical Meniere's also. I have all the same symptoms you have, but no dizziness or vertigo. I have been through two ENT's and my own Doctor. I am fortunate in that my own Doctor has also studied Homeopathic medicine in depth. She spent a lot of time researching Meniere's and going through the supplements and and anti viral's, that I would eventually be on. I have had the symptoms for about six months, and was officially diagnosed about three weeks ago. Since then I started John's of Ohio regimen, and Valacyclovir. Immediately after the diagnosis within a couple of days I started the complete regimen. Then about a week later the Valacyclovir. At this point I am having very little symptoms. Occasional ringing in the ear, no fullness, and hearing restored. Not sure how long this will last, but this is where I am at now. Oh yes, strict under 1500 mg daily of salt ( hate this diet!). Hope this helps Mark