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Old 07-05-2008, 08:41 AM   #1
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New and suffering continuous dizziness

Hi all,

I am under the care of a neuro-otolaryngologist and have been tested for mostly everything. The only thing that came back slightly high was the Ecog test for Meniere's. I am in the normal range, yet on the higher end. Does anyone suffer from continuous dizziness--not really vertigo (no spinning)--just off balance all the time? It makes life so difficult. My vision also feels like it is vibrating up and down. My husband says if he concentrates hard enough he can make his do the same thing so he feels it is psychosomatic. It feels real to me. Also my neck and upper shoulders hurt and are full of tight muscles. I am so afraid of being diagnosed with Meniere's and am grasping at any straw to figure out if this is something else. I have been chronically ill for almost two years (first my thyroid headed south and then I was diagnosed celiac--both diagnoses took months of feeling bad before doctors figured out what it was. Then the dizziness started in November (8 months ago)--slowly--it was more of an occasional feeling of imbalance. In the last month however it has become more continuous and keeps me locked up in the house (with my 3 year old, which is what breaks my heart the most). I am just so frustrated and angry and at the end of my rope.

Sorry for the rant. Thanks for the vent.

 
Old 07-05-2008, 10:37 AM   #2
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Re: New and suffering continuous dizziness

There are not many conditions out there that cause constant dizziness. However, MIGRAINE is the big one that does! Miniere's usually causes spells of dizziness with periods of being symptom-free. Rarely does it cause permanent disequilibrium. Have you had an ENG test as well? The shimmering vision is also a symptom of migraine. I have migraine associated vertigo as well, and have been suffering daily for 5 months now so I certainly do know how you feel. I am locked in the house with my twins, which is nice because I love them, but I can't take care of them because of the symptoms. I have it really bad. If all your testing comes back normal, and there is no suspicion of anything major going on that would require a CT scan or MRI (all mine were normal by the way), I would bet my money that it's migraine-related, ESPECIALLY in the absence of ear symptoms, but even migraine can cause ear symptoms. I have fullness in both ears constantly as part of my migraine condition. It's a MISERABLE thing to have, but there is help. The key is getting the proper diagnosis and then getting on the right meds to stop it. Try finding a good neuro-otologist. They are especially good at differentiating between inner ear and migraine. I hope that helps

Rich

 
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Old 07-05-2008, 10:57 AM   #3
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Re: New and suffering continuous dizziness

Rich,

Thanks for replying. I feel so alone. I am sorry to hear about how you feel. I understand. I did have a brain MRI and a c-spine MRI--both normal, other than a slight bulging disk. I had a CT scan back in Dec and that was normal as well. My sisters both suffer from migraines (traditional type with pain, vomiting) but as of yet I haven't had the traditional type. My doctor did tell me that you don't have to have pain to have migraine. What do you know about this illness? Will it ever go away? Sometimes I think the constant dizziness is going to make me crazy. I hate being frustrated, irritable, angry and depressed all the time. No way to live life, especially when you have a little one depending on you 24/7. It all seems so unfair. Pity party... I am currently on diuretics to lower the fluid level in my ear. I've been on it for three weeks and no luck so far. Please keep in touch. I wouldn't wish this on anyone but it's nice to be in touch with someone who knows how it feels.

Jen

 
Old 07-05-2008, 12:18 PM   #4
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Talking Re: New and suffering continuous dizziness

Quote:
Originally Posted by lookng4answrs View Post
Rich,

Thanks for replying. I feel so alone. I am sorry to hear about how you feel. I understand. I did have a brain MRI and a c-spine MRI--both normal, other than a slight bulging disk. I had a CT scan back in Dec and that was normal as well. My sisters both suffer from migraines (traditional type with pain, vomiting) but as of yet I haven't had the traditional type. My doctor did tell me that you don't have to have pain to have migraine. What do you know about this illness? Will it ever go away? Sometimes I think the constant dizziness is going to make me crazy. I hate being frustrated, irritable, angry and depressed all the time. No way to live life, especially when you have a little one depending on you 24/7. It all seems so unfair. Pity party... I am currently on diuretics to lower the fluid level in my ear. I've been on it for three weeks and no luck so far. Please keep in touch. I wouldn't wish this on anyone but it's nice to be in touch with someone who knows how it feels.

Jen
Hi

Notice that ur in Chicago under the care of a:

..."neuro-otolaryngologist"...

Which is were Northwestern Univ Dr Hain is located---many/much of his/their research/clinical studies are posted in the Information Archive (Sticky) 1st post on this board....

U asked:

...."Will it ever go away?"....

Yes---but it's trajectory and how long it will take depends on what type of "Vestibular Injury" you have and how knowledgeable ur Doc's & Vestibular Rehabilitation Training(VRT) Therapist are.

Sounds like u may think it is:

...."Meniere's"

Northwestern Univ (Hain's web site) says:

...."Menieres disease has a prevalence of about 200 cases/100,000 persons in the United States, or in other words, about 0.2 % of the population has Meniere's disease.".....

So its kind of "rare" and prob "not likely"....

You ask:

...."What do you know about this illness?"....

Well before I got it in 2002---never heard of it or anything like it---was 1st Dx'd with Lab---then VN then VN w/BPPV---things did not go very well until I found my way to the Univ of Penn Balance Center---were the final Dx came about---which they said was not compensating because of "Visual Difficulty's"---all which turned out to be true---did the VRT's & the Visual VRT's and in about 13/14 months(from 1st attack)it was history.....

While the brain will try to compensate---and will prob get u 2/3rds of the way to total compensation---the visual usually is the "Long Pole" in the tent---For those with LAB's, VN or BPPV---it is visual that takes the time---(sometimes a lot)


....."My doctor did tell me that you don't have to have pain to have migraine."...

Think that is true(for some)....


....MAV---seems/will follow a different path/trajectory---there are a number who post here---that will/can address that......

Read/find out/ learn all u can---it will help---there is a significant amount of info in the "Sticky" the Harvard sites with the video are excellent...

Good Luck!


 
Old 07-05-2008, 12:20 PM   #5
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Re: New and suffering continuous dizziness

the other continuous culprit of what I describe as "brain fog" is a PLF.....perilymph fistula.

This is a tiny (indetectable on Ct Scan) microscopic hole or tear in your inner ear where perilymphyhatic fluid is slowly and stealily leaking out.

Any pressure changes/ trauma to that ear which might have caused this?

Fill me in on the detials (ie. how and when it started, and specificlaly what you feel. I will do my best to get you pointed in the right direction.

Todd

 
Old 07-05-2008, 12:21 PM   #6
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Re: New and suffering continuous dizziness

well, from your family history, you are a prime canidate for migraine. I'm no doctor, however, I have a lot of experience with not being well, and it seems to me, that the stress of not being well with these other issues over the past few years, especially the stress of not knowing what they were for many months, was the instigating factor that preciptated your migraine condition, if that is in fact what you have. I am only 32, yet i have bad osteoporosis from using an inhalor as a kid and teenage for asthma, and have been struggling with that for a few years. In the 2 months leading up to my migraine crash, I had a ton of anxiety, stress, and worry, and I was even starting to have panic attacks. This all came to a head at the end of January 2008, and I woke up with the chronic symptoms I have now, including 24/7 dizziness, motion intolerance, light sensitivity, ear pressure, and much more. I have a quite severe case. Yours seems to have come on gradually, which is the case for many people. I had one giant crash, and woke up a changed person the next morning, and have not been the same since. So it can happen a few different ways, but a TRIGGERING FACTOR seems to set us off, and is different for everyone. Sometimes it's multiple factors that do it. The problem is, once you HAVE the condition, there many more triggers that set you off that normally would not be an issue.

First things first. This is not all in your head, and you can show your husband this post. I'm a guy, and at first, when I explained these symptoms to my wife, she thought this was all in MY head, as I couldn't get a diagosis, until finally I went to Johns Hopkins where I got the correct diagnosis of migraine. Migraine does NOT have to cause headaches. It can simply cause the vestibular symptoms of dizziness, imbalance, nausea, light sensivitity, and all the other misery that comes along with the pain. Some people develop the headaches over time. At first, I had only the vestibular symptoms. Now, I get daily headaches. Not migraines, but by the end of the day, I have a headache almost every night. It sucks! But that's the way this condition can go. So, if your husband wants his wife back, he better listen up, and take you seriously, and get you the proper diagnosis (which seems to me is migraine, but i am not diagnosing you, this is just my opinion). As mentioned, a neuro-otologist is usually the type of doctor best suited to separate inner ear from central (brain) dizziness.

I know how you feel. It IS unfair. I have had the 24/7 dizziness now for 5 months, and I have TWINS to take care of!!! It's unfair, but that's life! We can pitty ourselves, or we can DO something about it. I do not plan on being stuck this way my dear, and I am currently doing something about it. Granted, I have SEVERE SEVERE case, so it's going to take me longer to get out of it, but I will get out of it, and so will you. But you NEED the support of your husband. My wife has down-played my symptoms since day 1, so I understand how you feel, and it has torn us apart. She keeps repeating "you have migraine, you are not going to die". well, a quadrapalegic isn't going to die either, but I still wouldn't want to be stuck that way. The point is, the symptoms are so horrifying, and when people look at us, they see someone who "appears" normal, so they can't imagine that it's that bad. But it is. The good news is, it does get better.

So, will it ever go away?? Here is the truth. IF we are talking about migraine associated vertigo (MAV), which sounds likely (but you need a doctors diagnosis of course), the condition DOES get better with time and medication. However, there is NO cure. what do I mean by that? I mean that there is no pill that can make the migraine go away forever, guaranteed to never return. Little is known about the mechanisms of migraine, and there are very few drugs SPECIFICALLY for migraine. That's the bad news. The GOOD news is that there are MANY drugs that have a side-effect of being powerful migraine preventatives. Anti-convulsants like Topamax, Anti-depressants like Effexor, Beta Blockers like Propanalol, Calcium Channel Blockers like Verapamil,....these are all medications that DO work to get the migraine condition under control, and help to get you back to normal. I have spoken to MANY people who have gotten their lives back with one or more of the categories of drugs mentioned here. Right now, I am on Topamax alone. But my doctor wants to start adding some low-dose effexor to really knock this thing out. I have spoken to others who have gotten well on all sorts of combinations....Topamax/Prozac, Zoloft/Klonopin/Verapamil, Effexor/Verapamil, the list just keeps going and going. The sad news is that it is trial and error. ANY of these drugs can work for you. According to some experts, drugs like Topamax, Effexor, Verapamil have the best success rates but people have gotten well with klonopin, zoloft, prozac, and others. So the list is really endless. Why these drugs work is not exactly clear, but they DO work. Some people get on the right med combo and live happily ever after. Some relapse down the road and need a medication adjustment. Some need to find new meds. It's all very individual. BUT, it DOES get better! I'd lie if I said I was one of them lol, but I'm only 5 months in, and I am very sensitive to meds, and it's taking me time to get up to a therapuetic dosage. But there are people on this forum, right now, who can tell you they are 90-95% on most days, which I would KILL for, as would you I'm sure :-)

Go out and get the book "Heal Your Headache" by David Bulcholz. Don't be concerned about the word headache in the title. It goes over EVERYTHING about migraine, and by the time you are done reading it, you will know what you need to know about this condition.

If the doc decides this is migraine, get on the migraine diet outlined in the book, and keep a daily diary of how you feel each day. This is needed in order to identify outside "triggers" that are making you feel EVEN worse. For me, allergies, low pressure systems, interrupted sleep, not sleeping the same every night, not eating on schedule, getting a cold, doing too much activity (when I am able), eating cheese, crying, getting aggitated, anxiety, worrying, these are all things that I have proven to myself over the course of 5 months to cause a worsening of my symptoms. I write down a brief summary of the day, including what i ate, what I did, what the weather was like, how I was feeling, weather or not I was having allergies or sick, things like that. If I took medications or vitamins, I also wrote that down as well. I also have a chart of progress as well. Identifying other triggers can be difficult, but this helped me a lot. The idea of getting on these preventatives, is to get your threshold high enough so that these triggers that we are faced with every day don't set us off. Anyway, I think i've rambled a little too much. You are going to be fine, as another fellow MAV'r with a LOT more experience than I recently told me. I have a long way to go as well, but we WILL get there, IF we don't give up, and if we keep moving forward. So far, I only hear you complaining of dizziness. If that be the case, that's good, because it can be a whole lot worse. You'll be ok!

Rich

 
Old 07-05-2008, 12:24 PM   #7
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Re: New and suffering continuous dizziness

I just saw Seigerts reply. Heck, if you are near Dr. Hain, I suggest you get in to see him. You would be in the best possible hands. He is my doctor as well!! He is THE expert on dizzy situations and can certainly figure this out for you. Great advice Seigert!

Rich

 
Old 07-05-2008, 12:29 PM   #8
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Re: New and suffering continuous dizziness

<<<Well before I got it in 2002---never heard of it or anything like it---was 1st Dx'd with Lab---then VN then VN w/BPPV---things did not go very well until I found my way to the Univ of Penn Balance Center---were the final Dx came about---which they said was not compensating because of "Visual Difficulty's"---all which turned out to be true---did the VRT's & the Visual VRT's and in about 13/14 months(from 1st attack)it was history.....

While the brain will try to compensate---and will prob get u 2/3rds of the way to total compensation---the visual usually is the "Long Pole" in the tent---For those with LAB's, VN or BPPV---it is visual that takes the time---(sometimes a lot)>>>


I'm trying to follow you on this. So you were MIS-diagnosed as having labs, VN, BPPV, and finally diagnosed properly with MAV?? I'm not sure I follow this compensation problem the doctors say you were having. you were having compensation problems because of "visual difficulties"? I'm not sure I really follow. Are you saying that you were having 24/7 symptoms from migraine, and that your brain couldn't adapt, but after VRT, you got better? IF that's the case, your one of the lucky ones. VRT sometimes makes migrainers worse. A more detailed explaination would be greatly helpful. thanks so much

Rich

 
Old 07-05-2008, 12:59 PM   #9
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Re: New and suffering continuous dizziness

Oh, so you DID have an inner ear issue then. Ok, that explains the help from the VRT. If it were MAV, and the only treatment you had was VRT, you would probably still be typing away on this forum looking for help lol. Thanks for the clarification!

Rich

 
Old 07-05-2008, 05:13 PM   #10
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Re: New and suffering continuous dizziness

Hi Looking,

What Subs has shown you should really help you to calm down over the Meniere's possibility – it's EXTREMELY rare. In fact, these days it's more likely migrainous vertigo behind it as it can mimick Meniere's in some ways. Also note that I too had an ECoG done here in Sydney and was also in the high-normal range. I was told to do the low salt diet as well – and it did nothing. In short, I think you will fnd that low salt will not have an effect.

If you can get in to see Hain, I think that would be a great start. He's the US guru.

Tell your husband there's nothing psychosomatic about this apart from throwing one's own anxiety onto the situation. Your visual disturbances are very real probably being caused by a vestibular disturbance somewhere along the line. The last thing you need to be thinking is that you are somehow responsible.

If you think the low-salt thing is a waste of time, grab that book Rich has mentioned. I think you might see things improve a fair bit by removing migraine trigger foods from your diet.

Good luck and keep in touch ... Scott

 
Old 07-05-2008, 06:02 PM   #11
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Re: New and suffering continuous dizziness

Wow, you guys are amazing. Thank you very much for all the time you put into your posts. This is all so new and scary. Dr. Hain is my doctor too, Rich! You must be in the Chicago area as well. He is great. He is probably reading my posts on this forum and saying "there's that wacky patient of mine who is always emailing me with questions!"

I am on Verapamil and Betahistine for now to see how that works. So far I have not noticed any improvement but it's only been three weeks. It's funny that you mention Klonopin--I was withdrawing off of that medication when all of the dizziness began. I was on it for an entirely different reason--overmedication of my thyroid disease which sent me into a hyper-thyroid problem, including terrible panic attacks.

Definitely I had tons of stress in my life when all of this came on. The two autoimmune diseases (thyroid and celiac) came out during the worst of everything, which doesn't surprise me--autoimmunes tend to do that.

I understand what you mean about the headaches. I don't have (or haven't yet had) migraine type headaches but pretty much every night I have a mild headache which usually involves a neck ache. I chalk this up partially to the anxiety of it all but I know some of it is from the vibrating vision and imbalance. I feel like my neck is always trying to dampen the dizziness and it ends up getting really sore.

I talked to my sister (with the migraines) for an hour today and she has had a lot of these same symptoms in the past but never mentioned it (probably thought we'd all think she was nuts). Somehow just knowing that other people feel these same things helps my spirits and makes me feel less freaked out about it all. It's hard to do but I will attempt to end the pity party and try to move forward. I'm only 36 and this may effectively end my career in aviation but that's not the end of the world. I just want to be healthy for my kiddo.

I will get that book for sure and start charting everything. Cheese is a migraine trigger? I'm in big trouble then, that's a main staple of my diet now that I know I am celiac!!

Thank you so much to all of you and consider me a frequent visitor to this website now--am anxious to learn as much as I can.

Jen

 
Old 07-05-2008, 06:42 PM   #12
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Re: New and suffering continuous dizziness

Oh, Dr. Hain is your doctor?? GREAT!! What does he have to say about what's going on then?? He is very thorough, and doesn't like to jump the gun, even if things look pretty obvious. He likes to cover his bases, which I respect a great deal! Have you just gone to him recently? Is that why you are still unsure of what is going on? What does he have to say about all this?

Rich

 
Old 07-05-2008, 07:16 PM   #13
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Re: New and suffering continuous dizziness

Rich,

I just saw him for the first time in April. It took about two months for them to get all my test results squared away, including all the tests they do there in the office plus the MRIs. The only thing that came back somewhat questionable was the EcoG, which was "high normal" and the VEMP had a 28&#37;differential. That freaked me out b/c of the Meniere's but as one of the other posters reminded me--that doesn't mean I have it. He put me on Verapamil and Betahistine to see if that helps. I agree, he's very thorough and I do trust his judgement and abilities--I'm floored at how much he has published. Also it seems everytime I search anything having to do with my condition his website comes up. I have a follow up in August so we will see where we are at that point. The day to day is what has gotten so difficult. And when you stay in the house all day everyday you have lots of time to think and worry.

Jen

Last edited by moderator2; 07-05-2008 at 07:44 PM. Reason: posted disallowed website(s)

 
Old 07-05-2008, 08:23 PM   #14
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Re: New and suffering continuous dizziness

Jen, I can certainly relate to the sitting in the house all day, EVERY DAY, and worrying. I have worried myself into having ALL SORTS of conditions, including minieres disease, multiple sclerosis, parkinson's, superior canal dehisence, verterbral artery dissection, epilepsy, i mean good GOD the conditions go on and on. the more i sit and worry, the worse the condition gets. there is an anxiety component to all this that is best treated, as it does nothing but worsen the condition.

has the meds done ANYTHING for you at all? Just keep in mind that if the meds don't work, it doesn't mean you don't have migraine. it may just mean that the right combo hasn't been found yet. did he give you a "temporary" diagnosis or say what he THINKS may be going on?

Rich

 
Old 07-06-2008, 05:23 AM   #15
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Re: New and suffering continuous dizziness

Rich,

Sounds like you spend time on the internet researching this stuff too! My message that was deleted by the moderator was in regards to the fact that everytime I look anything up on the internet there is Dr. Hain's website--he is everywhere! Apparently I used the commercial name of a search engine and that is not allowed. The post was really long and detailed and I can't remember what all I wrote.

Anyway, he did not give me a diagnosis, other than to say that he would try treating the fluid first. I will see him again in August, if not before, as I am on the cancel/waiting list. He mentioned several things it "could" be, such as Meniere's, BPPV, superior canal dehiscence, migraine, but none of my tests came back definitive, just a couple that were "high normal". He also told me on our follow up phone conversation that these things sometimes spontaneously resolve themselves. Here's to that--hoping for a miracle!

Keep in touch.

 
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