Meniers

The medication I am on is Cinnarizine,my symptoms are vertigo, light headed 24/7,brain fog as they call it,can't think about anything,panicked/anxiety,headache or migraine everyday, ringing in the ears,can't go out on my own,I have had this for 7 months so far,oh and my eyes can't seem to focus very well sometimes.

Medication not working very well by the way,I have been prescribed lots of pills none have worked what so ever

What does brain fog feel like? And how long do you get vertigo? Maybe it's not menieres? Doesn't sound like it to me actually. Maybe it's vestibular migraines.

Brain fog.....you can't think properly you feel like you are going insane,can't remember anything can't do anything,haven't got that all of the time though

My dr said you can't have menieres unless the virtigo is more then 20 minutes and you have Tittinus. It sounds like you have migraines

Well whatever it is it needs to be going because 7 months of this is doing my head in,thank you for your input Melissa,it all gets a bit worrying sometimes

I understand, I've been going through it for 3 months and I hate it. I'm so depressed over it. Do you get virtigo a lot?

Ask your dr about Nortriptiline or betahistine

Melissa,

I recently went to my surgeon for my three month f/up. She told me there is a definite, proven, peer-reviewed relation between meniere's and migraine, on the order of 55% if one ear is affected and 85% if both ears are affected. So, there definitely could be migraines of the type with atypical symptoms going on. You should ask your Dr. about it. I have some of the peer-reviewed literature if you are interested.

So you are saying I have menieres and migraines? I'm so miserable right now this is ruining my life. Like I said I'm so imbalanced. I'm not dizzy really right now, just super imbalanced. Before your surgery did you feel very just off balance every single day? These past three months I have gotten really bad, I can't move and my dr told me it makes it worse when you don't move and my eyes are bothering me too.

Not necessarily Ménière's and migraines, just a strong likelihood. I've had Ménière's for several decades. But when the tinnitus in my ear became very loud, it was driving me literally insane. My hearing in that ear was down to 15%. That's when I decided to have a Labyrinthectomy. Prior to the surgery I had severe vertigo 2 to 3 times a week, some lasting hours, or even days. When I didn't have vertigo, I was dizzy all the time. I had very loud tinnitus and an unsteady gait. When I had the vertigo I was nauseous and often threw up. It was only after my surgrey that I found out about the connection between Ménière's and migraines. Now I am on a very restrictive 8 week diet to identify the triggers that bring on the atypical migraine symptoms. After 8 weeks I can start reinstituting 1 food for 1 week at a time. If that food causes the symptoms, that food is a no-no. It is a very long journey and I am now deaf in that ear. I get a special type of hearing aid tomorrow that will enable a type of hearing in that ear. My advice to you is to find an ENT who specializes in the diagnosing and treating of Ménière's/migraines. You may have to do a detailed search because they are few and far between. Blessings to you. I will be praying for you!

No I don't thank goodness I've had it about 5 times but I have to be careful when standing up or getting and looking up got to try and keep my head straight

Does keeping your head straight help dizziness?

This is a very interesting discussion for me. When I was 16 years old I had a 2 week bout of severe vertigo with vomiting and inability to walk on my own. It was thought at the time that I had an inner ear infection and that might have been what it was, but it started me on a long road of problems. I had another experience with vertigo about 2 years later. At 19 I was diagnosed with Meniere's (and also in 2007 when i was tested again.)

I am now 68 years old and after being told for almost 50 years that I had Meniere's, I am now being told I never had Meniere's but instead I have been having vestibular migraines.

My doctor told me that Meniere's causes hearing loss in the lower ranges in one or both ears that can come and go with the symptoms of vertigo, tinnitus, etc. and is usually permanent over time. I never lost my hearing during an attack of vertigo or with any dizziness or unbalanced feelings. I do have hearing loss that I wear hearing aids for. I was first tested for hearing loss in 2000, and subsequent tests show very little change from that first test. My doctor says that my hearing loss is a genetic loss that comes with age, which makes sense to me because both my father and his older sister had this type of hearing loss.

Meniere's also will over time (usually in about 10-15 years) cause the deterioration of the balance centers in the ear. More recent vestibular testing on me shows that my balance centers are working fine. 

I have had tinnitus since I was a teenager and it has only gotten really bad at certain times, once when I was exposed to very loud noises, and then again since this past January when I started having dizziness that was constant with a heavy-headed feeling that made me so unbalanced I gave up driving for about 9 weeks. It felt like a very heavy anvil was lodged in my head and it would move when I moved my head at all and make me very dizzy. I could hardly even move my eyes without the constant dizziness getting worse. During this time I also had an adversion to loud noises that I've never had before and headaches that made me think I had a sinus infection. (CT scan showed nothing was in my sinuses.) I've had headaches in the past that made me nauseated, but not very many at all. Vestibular migraines usually don't have headache as a symptom but they can. The symptoms of vestibular migraines can be vertigo, dizziness, unbalanced feeling, nausia, vomiting, tinnitus, feeling of ear fullness, adversion to loud noises or lights or smells. In other words they can have symptoms like regular migraines except they include dizziness/vertigo and don't always include the head pain. These symptoms are very much like Meniere's symptoms. Going through the terrible time I did since January until about the middle of March (March 5th the most severe symptoms started to end), has given me insight to what has most likely been going on for practically my entire life. So I'm grateful.

Most of the time throughout my life my main symptoms would be ear fullness, the constant tinnitus and feeling dizzy or woozy enough that i needed to take meclizine to be able to function. I would have severe vertigo/vomiting only once in a while lasting up to 3 days and thankfully went for years without having that debilitating experience. Motion sickness is also a symptom of vestibular migraines and I've had that all my life and can't hardly watch a boat come into port much less actually go out on one. I can sit in front in a car and not get sick but only if the road isn't a twisting mountain type road. I can never sit for long in the back in a bus without feeling sick.

?So Meniere's is very much like vestibular migraines except the loss of hearing in the low ranges and the destruction of the balance center in the ear. If over time you don't have those two things happen then it's a good chance you don't have Meniere's.

?Basic treatment for Meniere's is a diuretic and anti-nausea meds and stopping all caffeine and salt as well as controlling any allergies. I have done all these pretty faithfully and just never seemed to get to the place, at least in these past 4 years, to control the dizziness.

Treatment, so far for me for vestibular migraines has been to wean me off the diuretic and start me on a search by trial and error for a  long term migraine medication that will work to end the attacks. I also have to determine what any migraine triggers are that I may have: certain foods, allergies (I already know that molds cause me to have bad headaches), etc.  Another strong trigger I already know that I have are weather changes. They can greatly affect me (which is also found in Meniere's triggers.) 

?Sorry to be so long winded, but I hope my experience helps you in your search for help.

How long did the imbalance take to go away? Also did you feel swaying feeling or like when you sleept and closed your eyes you felt like you were sleeping? Have they tried you on nortriptiline yet?

Patricia,

Thank you for sharing your journey. I am so sorry you have dealt with this for so long. I only recently found out about the strong relationship between Ménière's and vestibular migraines. It seriously sounds like you have both. I too dealt with it for decades. When it got to the point where the tinnitus was 24/7 and literally driving me insane, the vertigo was several times a week - sometimes lasting hours or days and hearing loss that I took the drastic step, in consultation with my ENT, to have the Labyrinthectomy and I'm glad I did. If you would like some advice, do some research and find an ENT who specializes in the diagnosing and treating of Ménière's/migraines. They are the best ones to give you the treatment you need. Blesings to you. I will be praying for you.

Barry

Barry does the migraines cause imbalance for like 3 months? How do I get better? I have no headaches though. I did a couple months ago had really bad headaches and now I have this horrible imbalance. I'm trying to do vistibular therapy.

Melissa,

My heart aches for you, it truly does. I prayed for you this morning. With Ménière's that has accompanying migraines, you won't necessarily get what everyone thinks of, the horrible headaches and lights flashing. The symptoms with Ménière's accompanied by migraines are more atypical. This like tinnitus, unsteady gait, etc. I very strongly encourage you to find an ENT in your area who specializes in diagnosing and treating Ménière's disease. Only then will you get accurate answers.

Blessings,

Barry

They aren't sure I even have Ménière's disease yet though. So that's why I'm asking about the constant imbalance I have, could it simply be vestibular migraines? Thanks for praying for me! Keep praying for me. I hate my life right now because of all of this. Thank you so much for your help! Melissa

Have you had a hearing test done Melissa?

Yes, I've had a couple, nothing too significant. A little low frequency lost

I felt very unbalanced from about January 14th to March 5th (so about 7 weeks?) when that heavy headed feeling I was having left quite suddenly. I literally felt like something lifted off my head. It was an answer to many prayers. The heavy headed feeling felt like something was pushing me down into the ground, down and forward. It was very strange and I've never had that happen before. I was in vestibular therapy during during the months of February and March, and the vestibular therapist told me that all the symptoms I was having sounded a lot like vestibular migraines to her. I was still feeling woozy and sometimes had bad days of dizziness after that unbalanced feeling left, but I could feel myself getting better. I still have good days and bad days, but the bad days are less bad now for which I am grateful. I started driving again after March 5th on my good days, but I still don't like going more than 10 miles away from my home. I do recall that one night when I was trying to get to sleep I felt like my body was swaying or vibrating actually.

Hm I don't know this heavy feeling, but I get constant swaying, I have trouble sleeping because of it, I don't think menieres causes people to be imbalanced for this many days, but I'm not sure. I hope one day I wake up like you did and mines gone, I cry every single day that I hope tomorrow this will be gone. Do you feel the vestibular therapy helped? I'm scared to even leave my house Anymore, when I am not moving I feel the imbalance even more, it's awful when I sleep. Do you get noise in your ear? 

Also what migraine medication have you tried? Have they tried you on nortriptiline. And do you ever get eye issues? My eye has blurred out before like an eye migraine.

I have been going to a group of ENT's who specialize in balance disorders, including Meniere's, for 3 years and almost 4 months now. I go about every 4 months and they always test my hearing at each appointment to make sure I haven't lost hearing. When I first went to them (January 2014) they put me through all their vestibular testing. They also looked at the results of testing I had had done in 2007 (vestibular testing and a brain MRI.) At that time the head ENT told me that they were not sure I had Meniere's and were thinking that I had vestibular migraines, but that they would keep treating me for Meniere's (since they couldn't say at that point that I didn't have it) plus add a migraine diet to see if that helped to stop food related triggers if it was vestibular migraines. (I just started to take the migraine diet seriously in January 2017 when i started having all the symptoms of heavy headedness, constant dizziness, etc. that I have never had before.) That testing and the other testing in 2007, did not show those two symptoms of Meniere's, low frequency hearing loss and damage in the ear centers for balance. The brain MRI in 2007 and the one I had a few weeks ago both showed a small amount of white matter consistant with migraines.  That is why they are more convinced now after treating me for over 3 years that I have vestibular migraines and not Meniere's. I started taking the diuretic, hydroclorothiazide, in 2007 and they put me on Maxzide in 2014, so I've been on diuretics for 10 years and I think I have had more trouble with dizziness in those 10 years then I ever had not taking a diuretic since I was first diagnosed when I was 16. I started a diary of my daily symptoms in February 2014, and saw that I averaged about 29 days out of each year from 2014 through 2016 being dizzy and needing to take meclizine to get through the day. I didn't have a vertigo/vomiting attack during those 3 years, but I had only had one in 2007 and one in 2013, both after I started diuretics. Prior to 2007, I hadn't had a severe vertigo/vomiting attack since Spring of 1996. That's 10 years without an attack, but just having days of dizziness here and there that i needed meds for. I was also recently sent to a neurologist to rule out any other causes for dizziness, etc. He suggested the medication I am now on as a preventative for vestibular migraines, because it would treat both migraine headache and dizziness. He told me he rarely (which I got the impression he actually meant never) had a patient with both. So I decided to stick with the ENT specialists I have been seeing, and the one who sees their vestibular migraine patients thinks the medicine suggested by the neurologist is a good one for me to start with. I'm hoping and praying that this will be the beginning of the end of my problems. I was trying to think what triggered these very severe symptoms (heavy headedness, severe imbalance, daily constant dizziness, and two severe vertigo attacks)  that started in January this year and the only things I can think of was that I was chewing a lot of gum and eating a lot of sugarless foods sweetened with aspartame (a known migraine trigger) and I started eating venison (which I never ate before), because my husband shot his first deer in December 2016 (and wild game is another known migraine trigger.) We also were under a tornado warning one night and I started getting vertigo about one hour prior to the actual warning we got on our cell phones! I've also noticed that I am much more sensitive to weather changes since January than I remember since we lived in FL near the coast years ago and I had so much trouble.

 I always appreciate prayers and I thank you for your interest and your prayers!

I forgot to answer your question about the medication you mentioned. No I am not taking that drug but they started me on a blood pressure medication used for vestibular migraines as a preventative.

Does migraines normally show up in an mri, are you sure that white matter was not MS or something? You have had a very long quest in all of this. I tried a diuretic one time and it made me so sick! I hope they can figure out something to help you! If you find that this migraine thing all seems to play out let me know! Maybe I can ask my dr about it. Do you have any eye issues? Sensitivity to light? Trouble seeing? Thanks so much for all your help 

The vestibular therapy did seem to help, at least I felt better after going through weeks of therapy. Yes, I do have a constant ringing in my ears and have had that for years. It really got much louder and went to a higher pitch while I was so sick during January through March. It seems to be getting more regular now. Don't give up! You will get through this and feel better. Keep doing your vestibular therapy exercises and when you have a better day try getting out with a friend. I will pray for you.

The only migraine medication I was given and which I just started is verapamil, a blood pressure medication used for vestibular migraines as well as migraines. It is a prevention drug that works to stop attacks over time. I am reading a book recommended by my ENT called The Migraine Brain by Dr. Carolyn Berstein who is at Harvard and treats only migraine issues in her practice. SHe says to give a new migraine medication at least 3 months to see if it works. She mentions vestibular migraines in her book. I have had eye issues but only 3 times in my life. Two times i've seen bright flashing lights in my upper vision area in both eyes. One time I woke up from a nap and I couldn't see straight for about 1 1/2 hours. My vision was double. Neither one of these things came with or before a headache. The double vision happened about 30 years ago and the last time I saw the flashing lights was about 4 years ago.

I was told that the white matter wasn't enough or consistent with MS but that it did indicate migraine activity. Which makes sense because I don't have any other symptoms of MS. When I was a child my eyes were very sensitive to light. I noticed that I had increased sensitivity to sounds when I was really sick with the heavy headed feelings and that noises, bright lights and constant motion around me, and too much visual stimulus (like when my husband would take me to the grocery store ) would make me feel even more unbalanced and confused like I couldn't concentrate. I put in another post about other eye things that happened to me in the past. One other thing, my mother had severe sinus headaches that we are pretty sure we're actually migraines. My sister also gets severe headaches. Migraines tend to be hereditary. Does anyone in your family have them?

Patricia,

My heart truly aches for you and I am sorry for all you are going through. I had to go through several ENT's before I found one that could truly help me. Ménière's is a disease that doesn't have definitive presentation. It is determined by a preponderance of the evidence, as they say in legal circles. It was only recently that I was informed about the concurrence of Ménière's and Migraines. In general, about 18% of the population has any type of migraine. For those with Ménière's on one side the incidence is 55% and for those with Ménière's on both sides the percentage of people who also concurrently have migraines is over 85%. There is documented, peer-reviewed literature on this. My advice to you is to keep looking until you find an ENT who is willing to look outside the box. You may have both situations going on.

Melissa,

With my Ménière's I was often dizzy and unbalanced for days at a time. Definitely possible.

I have exactly what you experienced going to the supermarket I definitely feel confused and unbalanced, I didn't think to mention that before, something going on with the eyes, even when I look at someone talking I have to look away

Melissa....keeping my head straight helps dizzyness very slightly, it never goes though, it does help to stop the vertigo

Barry how long did you go feeling like this? Like a month or more ever? Did you take medication to try to ease the menieres?

That's how I feel when I have too much stimulation around me, it really bothers my eyes so much. My great grandfather had migraines, no one else though. That's so interesting about the whole white matter in the brain. I did not know that. I have sensitivity to light and sound for sure. My eyes have trouble focusing on things because they feel weird and bright. I have trouble concentrating. It's frustrating.

Are you feeling better since you are in migraine medication? Can someone have migraines every single day and not know? I have. Vision blurred out sometimes

Melissa,

I've had Ménière's for about 2 1/2 decades. Over the past 5 years or so it got much worse. My ear rang 24/7/365. Sometimes it was maddeningly loud; sometimes so low I could imagine l didn't hear it. But it was always there. It kept me from sleeping or it woke me up in the middle of the night.

At first, the dizziness was periodic. But as time progressed it, too, became a daily affair. On top of that, I would get severe vertigo attacks several times a month; sometimes it lasted 2-3 hours; sometimes it lasted 2-3 days. Along with the vertigo came nausea and vomiting. I had also lost a significant amount of hearing in my ear.

I had diuretics, steroid injections in my ear, gentamycin injections in my ear and valium to help with the vertigo. That would help for a short while, but then the symptoms would come come back with a vengeance.

Finally, nothing was helping and life was becoming unlivable. That is when I, in consultation with my ENT, decided to have the Labyrinthectomy. The surgeon told me things would get worse before they got better. It is 4 months since the surgery and I am just starting to feel better. But everyday is incrementally better. My hearing in that ear is gone, but I wear a special type of hearing aid that transmits sound on my right side to my left ear. Finally looking forward to the future.

Hope this info helps you.

Blessings,

Barry

When you started getting menieres were the symptoms just moderate? That sounds horrible, I can't imagine going through that and I hope everything gets better soon for you and you can live life finally. Menieres is miserable. Were you super sick after the surgery? 

The symptoms definitely got worse as the years progressed. The last 5 years got unbearable. After the surgery, the first three weeks were the worst. Since then, things are getting progressively better. I still take valium and meclizine as needed.

Shouldn't the surgery have taken away the dizziness and titinus? So the ringing in the ear was constant in the start or would go away? I'm so scared 

Also when were you diagnosed with mineres?

Melissa,

I understand and appreciate your fear. The journeyfor someone with Ménière's is terrifying. The surgeon and I had several talks, both in person and on the phone, to make sure I wanted to proceed. Once I decided to proceed with the surgery, he told me things would get very worse before they got better. The reason is that they are basically destroying the balance mechanism in that ear. The other ear needs to learn to compensate and teach the whole body how to balance from only one side. The first month after the surgery was a living hell. After that things started getting better. Now I only will get dizzy, for example, for one day, and only mildly, rather than 4 days straight. My ear still rings a lot, but definitely not as bad as before the surgery. I've started keeping a journal tracking what happens and when to see if I can discern any patterns or triggers.Hope that helps. Just want you to know I am praying for you. If I can help in any way, let me know.

Barry

I was diagnosed with Ménière's in the late 80's.

Barry when you felt Imbalanced or dizzy, what did you do or take for it? I'm really dizzy today or feel like swaying or a boat feeling

Melissa and Pat.....there are two other forums on this website that you might find helpful. One is Vertigo and Dizziness and the other is Migraines. Lots of good information from various people with the same symptoms. Hope and pray we all recover completely from these terrible health problems.

Thanks so much! I'm afraid I have nueritis now. It's scaring me. I've heard terrible stories about that.

Did your doctor ever test you for neuritis? 

No they didn't think that I had neuritus. Early on when I was really unbalanced I was concerned that my vestibular nerve was somehow affected causing the symptoms and I asked about it. At first one ENT thought I might have an inner ear infection and I was given antibiotics to take, but they didn't help. I guess that if the vestibular nerve was infected or inflamed for some reason then the antibiotics would have helped, but of course I'm not sure. 

There was a woman in one of the forums I mentioned above who ended up having neither Meniere's, nor vestibular migraines, but she tested positive for an autoimmune disease and once that was trested the vertigo and dizziness stopped. I thought that was very interesting information.

Sorry, not "trested" in other comment...that should read "treated."

Thank you Patricia I will try suggested forums

Melissa,

Before I was prescribed diazepam (valium) I would take meclizine. The dosage is supposed to be 1 or 2 pills every 24 hrs. I would take 2 every 3 to 4 hrs. Although that didn't totally alleviate the symptoms it did calm them down enough that I could function. After, I would take 1 or 2 mg of diazepam every 6 hrs as needed with a kicker of 1 tablet of meclizine, but only when really, really needed.

Hope this helps,

Barry

It's funny because my dr told me the reason maybe I was feeling this imbalance was because of Valium depressing my nerve too much. Has anyone ever told you that? I don't think it's true

No, it's definitely not true. That's why you need to find an ENT in your area who actually specializes in the diagnosing and treating of Ménière's. I assure you the valium has helped me a great deal.

I'm not sure in your case but I was told to come off all the anti-dizziness medications (meclizine and valium etc) because those medications work by disconnecting your balance centers in your ears from your brain, in other words they depress the vestibular nerve so it will not be able to send the vertigo, dizziness false messages to your brain. This was when I started vestibular therapy. The point of vestibular therapy is to help the brain to reconnect to the balance centers through the vestibular nerve connecting the two and be able to make adjustments to resolve and help end those false messages. If you take valium it does depress the nerve and the brain is unable to connect to the balance centers in your ears. I was told to try my best to stop all the medication I was taking for dizziness, etc. (unless i was in a full blown vertigo situation) at least during the day. It was ok to take it before bed if necessary. That's what I did and the vestibular exercises starting working and I had much less dizziness over time. 

I just started the migraine medication a few days ago and it usually takes this long term type of medication that stops migraine symptoms, including dizziness, vertigo etc. over time. I was told it will take at least 3 months to know if the medication is the right one for me. There are lots of migraine medications and sometimes it's by trial and error to find the right one for your specific symptoms. Migraines are strange. From the book, My Migraine Brain, that I mentioned in another comment, I've learned that there are many different possible symptoms and not everyone has the classical type of migraine, like we are used to thinking of them. I've had vision symptoms over the years, but never knew enough to think they could be migraine related and now I'm learning that they very well could be and most likely are. Sometimes the only symptoms that a person gets with migraines are very similar to the symptoms for Meniere's except that these vestibular migraines do not cause hearing loss in the low frequency ranges, nor do they end up destroying the balance centers in the inner ear like Meniere's. It's so important to keep positive and keep learning and keep trying to find the truth about what is causing your symptoms.