I am in my mid thirties, married with two kids. I am scared and so depressed. A year and a half ago I had horrible vertigo, ringing in my left ear, numbness in my right arm and weird broken speech. They checked for a stroke and I went to doctor once a week for five weeks. No answers!! It was on and off for the entire period...at least one symptom. I couldnt drive or take care of my family and one day I woke up and it was gone!!!! Monday I went to work with a sore neck and ringing in my ear. Driving home got horrible vertigo and ran off road. I thank god I didnt hurt anyone. My ear rings constantly if it gets louder the vertigo kicks in bad. Doctor sent me to ER and a doctor looked at my crazy eyes and listened to my story and said this is what I have. I felt better yesterday and was hopeful this wouldnt last like last time. I woke up worst ever! Im trying not to cry all the time but I couldnt take care of my kids again. Is this what they mean by clusters? Im so lost and need information or suggestions. I dont want to lose my job I cant be down long.Please Please help!!
So sorry that you have had such a tough time of it.I'm sure it is not easy having children to look after as well.Your doctors ruled out stroke,do you know if they ruled out migraine involvment? Most doctors are not aware that migraine can cause all the symptoms you listed.Especially the numbness in the arm and the slurred speech. If you look in the database there is a long thread on migraine being misdiagnosed as Menieres.It happens quite often.If it is migraine(you dont' have to have a headache) it can be treated,there are lots of drugs to knock it out so to speak.Lifestyle and diet can also help.But with symptoms like yours I would go for some meds to get yourself back on track. Good luck!
Hi Sarah, I am so sorry you are going through this. It sure can be scary and sad. Oh my goodness I have been there. I so connect to what you are saying about how painful and frightening it is not to be able to care for one's children (or child, in my case). It is going to take some support while you get this worked out, but the good news is that there are solutions. Unfortunately this vertigo and ear stuff can have multiple causes and the doctors often don't have easy answers. I think a lot of us have found you really have to be your own advocate and educate yourself. It is great that you have found the resource of this board so quickly. Keep reading (when you can) and see what resonates! You said the doctor looked into your "crazy eyes." Are your eyes moving? If so you may have BPPV which can be alleviated pretty effectively by something called the Epley maneuver--a series of movements a physical therapist can do. You can also do it at home, but maybe best to start by having a physical therapist look at you. If you truly have Meniere's, for a lot of people anti-viral medication really helps. This is a new-ish theory that is not accepted in the mainstream. The theory is that a herpes-related virus gets in the inner ear. This is an article you could show your doctor: http://www.mm3admin.co.za/documents/docmanager/6e64f7e1-715e-4fd6-8315-424683839664/00056616.pdf. The medication recommendations start on page 103. Also a member of this group who goes by John of Ohio has come up with a group of supplements that are very helpful to many people. You'll be able to find that in the database section. I hope you find something that works soon, and in the meantime do what you can to soothe your self.
Sarah, what tests, if any, have you had? I hope they at least gave you an MRI when they checked for a stroke. I'm always dubious of doctors diagnosing Meniere's without properly testing for it.
Hi Sarah, We are here with you. I was diagnosed with chronic migraine and Meniere's only 45 days ago. The symptoms bundle together and it can take quite a lot of personal sleuthing to get to the bottom of it. The MD's hit the limits of what they know or have to offer much more quickly than it take us to discover the whole puzzle and how to be in right relationship to our disease(s). There is not quick and easy solution or any one-size-fits-all approach so you might find some relief and not grasping for a quick remedy. God knows we all wish there was one! MY heart goes out to you and your children. Here is the link to the discussion of Meniere's and MAV and chronic Migraine which might give you a wider angle lens in which to study your condition. I imagine it is about the last thing you want to do right now: http://menieres.org/talk/index.php?topic=32.0 You might also look quite quickly into a short-term state disability claim and get an off-work letter from you MD. Depending on your state, this might be available and worth looking into. I am in that process right now in Cailifornia. In this state you have 49 days to file a claim after becoming disabled. Hang in.
Wow thanks for all responses so soon! It helps to have people who understand. Over the past couple days I will feel better and think I'm done with this and then I wake up and the vertigo is back. Its so frustrating!!!!! Im going for an MRI on Wendsday, I had a CAT scan days ago and a year and a half ago when I had the only other episode. Its so new in the game. I am going to read all of your links thank you all so much!!!If you can think of anything else please let me know!!!
Yes Sarah I forgot to mention the my MD told me that the Xanax, Valium or Ativan, whever is prescribed, is meant to knock me out, to let me sleep through any vertigo or super rough episodes. It does not stop the vertigo. I have heard others tell me the Ativert works better for that. I do not have vertigo like that so I've never tried it. I will however use a light dose of Xanax, which works faster and clears faster for me, to spare my nervous system when my ear gets into a certain level of distress: roaring, buzzing, clicking, aching, fullness. This helps me settle down so I can undure it. Hope this is helpful.
This is helpful since I was given Valium and slept for like 20 hours straight. Is that when you seem to get worse is when the ringing gets louder? Thats what happens to me. I just really want to know if it is normal to feel bad wake up the next day and start to feel better to wake up horrible all over again? I get hope and than Im spinning and falling again. I sit and try to figure out what I did to feel good and what I could of done to make it worse. I really do thank you all for the info its somewhat keeping me sane!
Sarah, The arm numbness symptom is the one that stands out to me. I started seeing a nucca (upper cervival) chiropractor for my ear symptoms and my leg and arm symptoms that I had for years prior cleared up. Nucca has greatly helped me control the ear symptoms as well. Might want to look into it.
There's also a non doctor approved school of thought that jaw (tmj) misalignment can cause inner ear symptoms. I believe upper cervical chiro may help if this is the issue. During a flare up sometimes I'll go on a soft food diet for a week or so an it helps stabilize things.
For what it's worth, here is how mine goes. I can have ear pressure/fullness, constant ringing and fatigue - and not go into full vertigo. I can have ear pressure/fullness, constant ringing and fatigue - and have a full vertigo attack. Many times JUST before a vertigo attack the pressure and ringing increase 100x and almost immediately Wham. Attack. I have Lorazapam that is placed under the tongue if the room starts to spiral. while it does make me sleepy I cant ever ever close my eyes as it seems to make my attacks worse to have eyes closed. It does reduce the attack to under 2 hrs typically and I can usually stay awake until the room stops moving. Then I am wiped out - but honestly would sleep for a few hours after an attack even before the Lorazapam was prescribed. I do believe that Nucca helped me. Didn't stop everything but helped. I have been enjoying relief with anti-viral generic valtrex. Good luck
Sarah, the MRI is a good start as it will rule out other things like an acoustic neuroma. Have you been to an ENT or better yet, a neurotologist though? There are additional tests they can perform that will better confirm that you have Meniere's. My ENT had sent me for an MRI, an ABR, and an EcoG, as well as some blood tests, and even then his diagnosis was "likely Meniere's". As he explained to me, Meniere's is over-diagnosed since there are many other conditions that have the same or similar symptoms and those conditions should be ruled out first before coming to the conclusion that a patient has Meniere's.
Sarah, I agree with Zotjen. In July 2013, I saw my PCP who sent me to a neurologist who sent me to an audiologist who sent me to and ENT who sent me back to my PCP who prescribed a heavy round of prendisone and at the end of that sent me back to the audiologist. Hearing fully recovered. Then a year later, as the symptoms progressed, I repeated all of this plus a balance test and a second ENT specializing in ear issues. I insisted on full autoimmune workup and nothing was found. Then the diagnosis of Meniere's was determined. I tried to argue about this because only dizziness, not vertigo like I hear about and bad headaches. Then the diagnosis became atypical Meniere's and chronic migraine. It was both ENT's, the neurologist and audiologist who came together to make this diagnosis. The progressive hearing loss plus no longer recovering after three more rounds of prendisone and antibiotics, I agreed. The hearing loss is in a certain range which is typical of MM as I understand it. Then after being on this site and doing countless hours of research. I went back in to my ENT to lobby for Antivirals. I have been on them almost three weeks and likely will have to lobby to try another kind as my symptoms not significantly changed. All of this has been a full time job since August 1. As stated, you've got to be your own advocate and push for the diagnostics that make it as conclusive as it can be given the limited knowledge about MM in our western medical system. And the protocols in this system only dealing with symptoms and at that are very limited and invasive. Knowing this helps not to get discouraged I have found. How are you today?
Hollyflo.... Im feeling a bit better. Thanks for asking. The vertigo is better and for me that is the worst. Im still having the ringing in the ear(does it ever go away?) the sore neck and Im its hard to explain .....tired, forgetful, I know what I want to say sometimes it takes awhile to pull it out. Seeing alot of doctors this week but like you said all say its a ruling out process I guess. My aunt is a doctor and sometimes Im not even clear if she fully knows what she is talking about. I recently went to work on midnight shift so it wouldnt affect my kids so much. I have been very stressed and tired....wondering if this is a coincidence?!Mustang89 had mentioned about the chiropractor and I went Saturday mostly for my neck but I have to wait until the MRI is done to make sure there is nothing else wrong. I have seen alot about people getting help from that. I think I hate the water pill is this something they want you to try daily?
Mustang89.... I am a bit happy you said this about the arm tingling. I keep hearing this must be something vascular and not a typical MM thing. Did anyone ever get to the bottom of that or did you maybe get a different response from the doctors? Is the chiropractor you speak of a specialist so to say? I dont know if you read but I went and got a few things done she wanted to wait and see my MRI results. I can almost try to block out the ringing if I can not be so tired and get a clear head maybe I can go back to my life. My youngest missed the bus today and they wont let me drive so I had to call and find him a ride....hate this but all of you that have taken the time to respond or send me a message it has given me hope and I needed it!!!!Thank you all.
Nice to hear from you Sarah06! Yes there are specially trained Chiros doing upper cervical and very precise work. Two I know of are NUCCA and Atlas Ortogonal. I am currently looking into both of them right now. The diuretic is standard from most MD's diagnosing MM. It helps some and not others. It should say on the bottle to take a pill a day. Try it and notice its effects. I went off of it when I started on the antivirals and most of my imbalance-dizziness vanished I think because for me that was a side affect. Also challenges kidneys as do antivirals so why stack up the stressors? For many the tinnitus stays, for some it lessens, for some abates. I found the more I am against having it, the louder it becomes and the more annoying too. Its all a work in progress. Not linear. Keep us posted!
Tomorrow is the MRI and MRA. I guess Im not suppose to be hopeful they find anything and if it is MM I guess there is nothing for them to find. Trying in my extra time to read all of your posts and information and suggestions. Im also a great lover of coffee and pop and Im trying to cut back on that. Not sure if its from the stress or what but Im always tired and in a fog. My son got mad and said I told you this twice already....AAAAHHH!!! I still have the speech thing where Im trying to pull the words out I want to say but it is kind of slurred or stuttery. That left last time when the vertigo left so Im not sure why that is..... trying to stay positive. Thanks for feed back!!