Hello, new here, a little bit about me

Hello everyone - This is my first post, I’ve been a lurker for awhile. I’m still trying to figure out what I have - the doctors aren’t much help with this - lol.

I have had several episodes of severe vertigo (you know the kind, totally incapacitating, literallly wouldn’t be able to get out of the house if my life depended on it) over the last year and a half, I have bilateral tinnitus which doesn’t seem to be affected by the vertigo one way or the other. There is some hearing loss at high levels and that does not seem to be any worse during the vertigo attacks. In a much lesser amount there is loss at the lower levels, it falls within normal limits, but isn’t as good as the mid range levels. With most of my attacks has come photophobia.

While the vertito is episodic, the motion sick feeling I have is almost constant as well as intolerable and is easily aggravated by anything and everything. I have a history of migraines though I have only had a few in my life. Probably less than 15 total. However, those I have had have been long lasting - 5-6 days. My first one was when I was in second grade.

Symptom wise I could easily fall into the mav category but since many doctors don’t see this as a “real disease” it is hard for me to see it as a “real disease” either. In mid-December I will be visiting my 4th doctor for this since having my first attack. Maybe I will have better luck with him than I have had with the others.

That’s all for now, hope to be talking with you all a lot more! :slight_smile:

What type of doctors have you been to see and where are you located? It is so important to find a doctor who understands and will listen instead of just telling you nothing is wrong. This has been one of my biggest challenges so far and I still am not sure whether or not I have found the right one.

Right now my PCP has done more listining and trying to help than anyone else. Along with my ENT who recomenned the medication and told me what he thought I was suffering from and after reading and researching it is the first diagnois that fits.

And after being on here and seeing and talking with others I am almost sure it is correct.

I can understand your symptoms as I have some of them , too. It is just a pain to deal with on a daily bases when everyone around you does not understand.

Welcome aboard and I think you will find comfort among those here who understand and will be happy to share their stories and what they have learned.

Timeless, the first doctor I went to was a neurologist. He told me I need to see an ENT. Next I went to a neurotologist. He was no help. And my third doctor was an ENT which was mostly a waste of time. In mid-Dec I see a new ENT. I am currently being treated for Menieres by taking a diuretic and eating lo-salt. I have also put myself on an anti-migraine diet, however most of the things on the diet I haven’t been eating anyway so there isn’t much change there except NO CHOCOLATE!!!

I don’t know what else I can do, I feel so totally helpless as nothing really seems to make much difference. If I at least knew for sure what I had I could work with that diagnosis but I have been told at one time or another I have BPPV, migraine, meniere’s, atypical meniere’s, labyrinthitis, etc. Nothing is conclusive and that is so frustrating.

I agree with you - it is so important to find a doctor who will understand and listen. This is what I am searching for and am unable to find. They are so quick to get me in and out and won’t listen to what I have to say.

Bookworm

I am also new to the site but not to motion sickness. I have had MAV since last April but it took 7 months and five different doctors to get there. Most doctors will tell you that dizzy symptoms while one of the most frequent reasons people visit the doctors is one of the least understood. In many cases they are not even sure why a drug works they just now it does.

My advice is to read as much as you can on this site as well as others and try to understand the different illness and then find a doctor who is willing to work with you. You are definitely seeing the right kind. The Neuro Otologist and Neurologist are supposedly experts at this. If you are near a University hospital think about visiting them or if you are near a Mayo clinic they are great since they work as a team.

I am not an expert at anything except myself but I have read a lot and feel a lot more comfortable because I understand more and am not afraid to push the doctors (remember many really want to get you out as fast as they can which is good for them, but not necessarily for you.)

I hope you feel better soon.

Frank_

Hi Frank,

Sorry you are having a difficult time with vertigo and other motion problems. May i ask when do your episodes of Vertigo come on? Years back when i had Vertigo more often…i use to get them waking up from being sound to sleep in the wee hours of the morning. Then i would become extremely sick & literally crawl to the bathroom. What do you mean by bilateral tinnitus? I have had intermittant tinnitus since 1998. The doc’s thought i initially had an inner-ear and anxiety problem so i visited Stanford Ear Institute and went thru a number of tests. My last test of the day was the ENG where the Tech person puts water into your ear. Well this test brings on lots of vertigo and it overwhelmed me so i had to have the test stopped so it was incomplete. The ironic part is one week later i began to have tinnitus. I don’t know if it was from the stress or something else?? You said your motion like feeling is nearly constant. Could you describe a bit more? Is it like a rocking sensation? Is the motion felt in and around your head or troughout the body?

Joe

Frank, Thank you and welcome to you also!!! I am (and have been for the last year+) trying to learn all I can about this dreadful disease. I still don’t know what I have which doesn’t help any. I am not at all near Mayo, wish I was! I am near a univertisty hospital though and that is where I saw the neurotologist. It was a waste of money to tell you the truth. I am hoping this next doctor I see in a couple of weeks (an ENT) will be of help. Living like this is brutal. I never know when the next attack of vertigo will come.

Joe, I’m not sure if you were asking Frank or me about bilateral tinnitus as I mentioned it. I will answer as I have it. By bilateral tinnitus I mean ear noises in BOTH ears, fairly constant. My left has pultatile tinnitus now and then but both have this high pitched static-squealy sound.

Most of my attacks have also come in the AM upon waking up. I have only had one at another time. I wonder if there is any significance to an attack at this time. Does anyone know? Much as I don’t want an attack anywhere I would rather have it in bed than out in public.

My motion sick feeling is a feeling inside my head, just a sick sick feeling usually with a sick headache. I don’t necessarily feel my whole body moving with it. Though I do have another issue in which I do feel like I am moving - I get tiny mini-spins, lasting only a second. Feels like I am going to go into a full vertigo attack but don’t.

I have not had the ENG test yet. Undoubtedly if I were to have it I would freak out as soon as I became dizzy and my results also would be incomplete.

— Begin quote from "bookworm"

Frank, Thank you and welcome to you also!!! I am (and have been for the last year+) trying to learn all I can about this dreadful disease. I still don’t know what I have which doesn’t help any. I am not at all near Mayo, wish I was! I am near a univertisty hospital though and that is where I saw the neurotologist. It was a waste of money to tell you the truth. I am hoping this next doctor I see in a couple of weeks (an ENT) will be of help. Living like this is brutal. I never know when the next attack of vertigo will come.

Joe, I’m not sure if you were asking Frank or me about bilateral tinnitus as I mentioned it. I will answer as I have it. By bilateral tinnitus I mean ear noises in BOTH ears, fairly constant. My left has pultatile tinnitus now and then but both have this high pitched static-squealy sound.

Most of my attacks have also come in the AM upon waking up. I have only had one at another time. I wonder if there is any significance to an attack at this time. Does anyone know? Much as I don’t want an attack anywhere I would rather have it in bed than out in public.

My motion sick feeling is a feeling inside my head, just a sick sick feeling usually with a sick headache. I don’t necessarily feel my whole body moving with it. Though I do have another issue in which I do feel like I am moving - I get tiny mini-spins, lasting only a second. Feels like I am going to go into a full vertigo attack but don’t.

I have not had the ENG test yet. Undoubtedly if I were to have it I would freak out as soon as I became dizzy and my results also would be incomplete.

— End quote

What tests have been completed thus far?

— Begin quote from "bookworm"

I have not had the ENG test yet. Undoubtedly if I were to have it I would freak out as soon as I became dizzy and my results also would be incomplete.

— End quote

Actually, if you do get dizzy enough to freak out, then that is probably all of the information they need from the test. If you do get dizzy, that is a good sign that everything is still working properly. I had one ENT diagnose me with meniere’s simply based off of hearing test. My ENG came up normal and he ignored it sticking with the diagnoses. I saw a different ENT at the local university and he ruled out meniere’ s in part because the ENG came out normal.

I know how very frustrating this is for you as I have been going through the same type issues as it concerns the doctors.

You are going to have to find a doctor that understands and can treat the MAV symptoms and then will work with you to find the right treatment.

I have been to a neurologist who was not in agreement with the diagnosis that I was given so I will see another one this month who my ENT recommended who has a specialty in migraines. I am hoping that he will be able to help me and find the correct treatment to make this disease manageable.

Prior to this condition starting last year I did have the headaches but had never had the other symptoms.

Once I changed my diet and alleviated the triggers that has helped alot. But the symptoms are still there just not as bad as they were and I am not having the attacks like I was. or at least not as of late.

Two of them I had while driving so that is a problem until I find out what to do to control all of this.

What area do you live in maybe someone would know of a name to give you to contact?

— Begin quote from "MSDXD"

What tests have been completed thus far?

— End quote

So far the only tests I have had are MRI and 2 hearing tests a year apart, plus the usual in-office balance tests. I have not had an ENG. I can’t see putting myself through that torture :x . The neurotologist I went to never even mentioned it which was fine with me.

I agree with you on that Bookworm - no ENG for me!!!
I had one scheduled (way back when) - I was a no-show. I really, truly couldn’t find anything anywhere that said I might benefit from it. (MY hearing tests showed no hearing loss - that was good enough for me 8) ) I still today wouldn’t do one if it was suggested. I’ve lived through the nightmare of complete and total non-stop room spinning - and I don’t ever want to go back. I no way in He** would ever do anything that might actually stir dizziness up in me on purpose, unless there was a promise of treatment and recovery. Even now, when I feel the dizzies coming on - I have to fight the panic - its always the same - “what if it doesn’t stop”??? Its crazy… but very real.

Does anyone know - is there really a benefit to having an ENG done??? I’ve also heard of people with an abnormal eng test,having success with migraine treatment. Could that maybe have something to do with the thinking that MAV and Menieres are thought to possibly be overlapping?

LOL - I’m not trying to start anything here - just looking for others opinions. (Am I the only one who wimped out on the eng???)

Kim

I had an ENG and would NEVER do it again. It was horrific and it worsened by symptoms greatly. As a matter of fact, it added the wonderful symptom of tingling in my face, hands, and arms. It was so bad that I went to the hospital the next day thinking I might be having a stroke. And, of course everything came back normal on the ENG. What a waste of time, money, and misery! I personally would never recommend it to anyone. I know not everyone has such a bad experience, but I would never chance it again now that I know how horrible it can be. :evil:

Hey Marci,
I read where you had a miserable experience with the ENG. Well i’m another statistic. Back in 1998 when the doctor diagnosed me with Inner-ear dysfunction w/anxiety…they sent me to the Stanford Ear Institute and I went thru a number of tests which i handled ok. The last test of the day was the ENG…i told the Tech Person that i am very motion intolerant and don’t think i should go thru with the ENG. She said not to worry…only about 3% of people become sick from this test. So i gave in and once the water began to enter my ear the Vertigo started up and was intense…after about 30 seconds i told them to stop the test because i was becoming sick to my stomach. The tech person said to me… please be patient…and i screamed out…NO…stop the test! So she stopped it and i had to head for the bathroom and vomit. It was a horrible experience! Then…a week later i began to have Inter-mittant Tinnitus (off and on).Not loud but enough to be a little annoying (hissing…cricket sound). I told the ear doctor about this and he said that the test did not cause this. He also said i probably already had a very light case of Tinnitus. I told him i did not have this prior to the test. Anyway…i still have it…nothing i can do. Luckily it’s not with me all the time…off and on each day. Marci…are you telling me you still have the tingling in your face, hands and arms? Did you also end up with Tinnitus? Did you become sick after the test?

Joe

AZdizzy, MarciM and Joseph, Wow!!! I am glad to see I am not the only one who does not want this test, and moreso who has actually refused it. I live my life 24 hours a day worrying that I will get a sudden, unexpected shot of vertigo which will totally 100% incapacitate me. I try to avoid this as much as possible, why would I want to put myself in a situation where vertigo is inevitible?

I have read that those with MAV have a much harder time with the test than those who have other inner ear disorders and their discomfort lasts much longer than others - days as opposed to minutes. Anyone know if there is any truth to that? I think I would freak out during the part where they flash lights and make you follow them with your eyes. Flashing lights alone may not give me vertigo but they will make me ***extremely *** motion sick. I’d probably never make it as far as the water torture. I get freaked out when the doctor puts my head back and turns it to the side to test for BPPV. I do not want to do anything to provoke another attack.

Joseph, your experience sounds like the test from he**. I’d never want another if I had that experience.

I, too, would like to know what the benefit is for this. From what I understand you can pass or flunk but you still won’t have a firm diagnosis.

— Begin quote from "bookworm"

I have read that those with MAV have a much harder time with the test than those who have other inner ear disorders and their discomfort lasts much longer than others - days as opposed to minutes. Anyone know if there is any truth to that?

— End quote

I’m not sure about the duration part, but I “know” (talked to on another forum) an ENG technician who says it’s WAY more frequent for migraine patients to become nauseated/throw up during an ENG than it is for the average dizzy patient.

— Begin quote from "bookworm"

I live my life 24 hours a day worrying that I will get a sudden, unexpected shot of vertigo which will totally 100% incapacitate me. I try to avoid this as much as possible, why would I want to put myself in a situation where vertigo is inevitible?

— End quote

Ugh - do I ever know that feeling… I get a sick feeling in my stomach just thinking about it. Back in the beginning of all this, I was going to a chiropractor (something I had done pretty much all of my life). But I wouldn’t let him get NEAR my neck or head. He thought I was nuts. Anyway, I didn’t mean to go off topic - I just wanted to say I understand the fear of actually inducing something we spend 24/7 trying to get rid of. Crazy huh??? :shock:

— Begin quote from "Tranquillity"

— Begin quote from "bookworm"

I have read that those with MAV have a much harder time with the test than those who have other inner ear disorders and their discomfort lasts much longer than others - days as opposed to minutes. Anyone know if there is any truth to that?

— End quote

I’m not sure about the duration part, but I “know” (talked to on another forum) an ENG technician who says it’s WAY more frequent for migraine patients to become nauseated/throw up during an ENG than it is for the average dizzy patient.

— End quote

Bookworm,

I have never heard that before, but I have taken two ENG’s and they both made me vomit and left me wiped and nauseated for a couple of hours or longer. It surprised the people running them as they both said that they had not seen anybody take so long to recover before. So it looks like I can support what both of you said.

Brian

— Begin quote from "joseph0952"

Hey Marci,
I read where you had a miserable experience with the ENG. Well i’m another statistic. Back in 1998 when the doctor diagnosed me with Inner-ear dysfunction w/anxiety…they sent me to the Stanford Ear Institute and I went thru a number of tests which i handled ok. The last test of the day was the ENG…i told the Tech Person that i am very motion intolerant and don’t think i should go thru with the ENG. She said not to worry…only about 3% of people become sick from this test. So i gave in and once the water began to enter my ear the Vertigo started up and was intense…after about 30 seconds i told them to stop the test because i was becoming sick to my stomach. The tech person said to me… please be patient…and i screamed out…NO…stop the test! So she stopped it and i had to head for the bathroom and vomit. It was a horrible experience! Then…a week later i began to have Inter-mittant Tinnitus (off and on).Not loud but enough to be a little annoying (hissing…cricket sound). I told the ear doctor about this and he said that the test did not cause this. He also said i probably already had a very light case of Tinnitus. I told him i did not have this prior to the test. Anyway…i still have it…nothing i can do. Luckily it’s not with me all the time…off and on each day. Marci…are you telling me you still have the tingling in your face, hands and arms? Did you also end up with Tinnitus? Did you become sick after the test?

Joe

— End quote

Joe,

Yes, I still have the tingling but it isn’t as intense as it was for the first few months. The tingling/numbness is a symptom of migraine, but I didn’t have it before the ENG. I have had Tinnitus since this all started a little over a year ago, so I can’t blame that on the ENG. They used hot and cold air rather than water on my test. My ears have always been sensitive to cold air blowing in them. The cold air gives me a headache and causes vertigo. I did get very ill after the test and it took as least several days to get back to where I was before the test plus the new tingling symptom.

Marci