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rachiej 07-06-2008 09:35 AM

20 years old and suffering from a lifetime of dizziness
Hello everyone,
My name is Rachel and I'm 20 years old. For as long as I can remember, I've had dizziness, generally feeling off-kilter but functioning for the majority of my spells, with violent attacks occurring every few months. I'm pretty much okay for several months at a time. My parents have told me that I exhibited symptoms of dizziness before I could even talk, and that I could crawl and stand up holding on to things before I was ever capable of sitting up straight without falling over. Earlier in my life dizziness could hit at any time of day, but around age 9, it started hitting only at night, with a violent attack (severe spinning sensation, inability to lift my head, and ending with an even faster spinning motion and tightening of all of the muscles in my body) lasting anywhere from 5 minutes to 3 hours. When I wake up in the night (or on the rare occasion that it has happened during the day) with this severe dizziness, I spend a day unable to function and within 12-24 hours, I am mostly normal. I have learned to cope and sometimes put off the debilitating dizziness if necessary by changing my sleep position and (strangely enough) sleeping less, but I still miss about 1-3 days per semester due to dizziness. I've been to family doctors, an allergist, a neurologist, an ENT, and probably more that I can't think of. I've had multiple tests done, and the only thing that has come back is that I have multiple mild allergies. I still can't help but think it is something more, because the Nasonex that I am on helps very little with dizziness (not bad on the allergies though), and at this point I take it more out of superstition. I've tried eating a balanced diet, avoiding loud music, and I've discovered in recent months (the spell I am currently getting over has lasted since March) that long car drives in high traffic areas kick up my dizziness. I believe this has to do with stress. Wind, loud music, and flashing lights also have some effect. I've looked at some of the disorders listed and feel like I have some symptoms from several different cases.

Has anyone on this board had problems since childhood?
Any success with gaining disability status? This would come in handy on days when I miss important tests and my professors think I just slept in.
Are there any drugs maybe not designed for dizziness but that help anyway?

Thanks for any help. Mostly, I'm just glad to know that other people get dizzy for seemingly no reason too. I am also tired of being thrown all different kinds of allergy medicines with no hope or explanation for what is really causing it. On my most recent (and LAST) visit with my ENT, I told him I had been trying lipoflavanoid and he said, "Well, trust me, that's not going to help you, but if it makes you feel better to think that, go ahead. You're just going to have to deal with this." I am SICK of being treated this way!

Boslee2008 07-06-2008 10:10 AM

Re: 20 years old and suffering from a lifetime of dizziness
is it possible that you have been suffering from long-term migraines? Even kids can get migraines, and when all testing comes back normal, that's when migraines start becoming more likely. If it IS migraines, yes, there are medications. But first, you need to get a proper diagnosis. But children DO get migraines. sometimes they grow out of it. Sometimes not. Try a migraine specialist or at least a neuro-otologist, who would be especially good at separating inner ear problems from a central problem like migraine. I hope that helps somewhat


Dizzyrascal 07-06-2008 12:31 PM

Re: 20 years old and suffering from a lifetime of dizziness
It sounds like Menieres to me based on the shortlived episodic nature of your attacks.

However, a long term migraine variant cannot be ruled.

I would consult a neuro-otlogist as soon as possible to confirm either of the above.

Boslee2008 07-06-2008 12:53 PM

Re: 20 years old and suffering from a lifetime of dizziness
The lack of hearing loss is what led me away from Miniere's but it's possible to be miniere's as well. Again, you need a SOLID neuro-otologist who can do the appropriate inner ear testing to rule out all possible inner ear causes.


rachiej 07-06-2008 01:32 PM

Re: 20 years old and suffering from a lifetime of dizziness
I have considered Meneire's and I think that when I got the testing done there was talk of migraines (especially when headaches started showing up as a symptom during that time), but I don't know what came of it. I was only in middle school or so at the time, so I don't really remember any details. I've been looking at the other posts on here, and I think that I'll try to get a referral to a neuro-otologist from my doctor.

rachiej 07-06-2008 01:45 PM

Re: 20 years old and suffering from a lifetime of dizziness
Also, what qualifies as "solid?" How would I find that out? I did a search and found only two and they are a 4 hour drive from me, so I don't want to make any mistakes.

Boslee2008 07-06-2008 02:02 PM

Re: 20 years old and suffering from a lifetime of dizziness
personally, I think if it were miniere's, your hearing would have suffered tremendous damage by now, and from your story, I take it that your hearing is fine? I',m leaning toward migraine but I am certainly no doctor. I'd ask you where you are from but we would probably both be banned for the information. they are VERY strict here about that. So my advice is to simply look up these doctors, and try to find the ones who have the most experience. Generally, a neuro-otologist has good experience at differentiating these problems. It could take a few of them before you get it right. I'm sorry they are so far away from you, but it will be more than worth it if you can manage to find the right one. go to a search engine and look up these conditions like migraine and miniere's and see what doctors come up. That might give you a better idea of who to go see. I wish I could help more, and I WOULD, but these moderators are on top of us like white on rice, and I do not wish to be banned. I hope this helps you


rachiej 07-06-2008 02:32 PM

Re: 20 years old and suffering from a lifetime of dizziness
No hearing loss, but I have noticed ringing and fullness in the ears, especially around the time when I think I feel an attack coming on (say the night before). I'm from the south (is that okay to say?) and I'm sure that the options are much more limited than living in the northeast or west coast. I'm trying to think of my other symptoms, but migraines sound most reasonable with Meneire's in a close second. I didn't know that migraines could happen without headaches so that's very interesting.

Boslee2008 07-06-2008 03:01 PM

Re: 20 years old and suffering from a lifetime of dizziness
It could be either one, but a doctor who really understands these matters needs to sort through this. When all else fails, go for the big named, well-recognized hosptials, even if it's a long drive. The correct diagnosis is well worth it. and yes, migraines can happen without headache. But if you are having "attacks", you may very well have miniere's but this is for a very qualified doc to work out. Most ENT's don't seem to be able to differentiate between the two, and don't often do the necessary testing to determine the problem. I could tell you what testing you would need done, but it won't help you unless you have a good doc to interpret:

1. ENG
2. ECOG - specifcally for miniere's
3. Rotary Chair (maybe)
5. High resolution Temporal Bone CT scan
6. Frenzle goggle examination to look for nystagmus with certain head positions, as well as during pressure in the ear, which help to create a better picture of weather or not there could be any damage to the inner ear

Those are the main inner ear testing


rachiej 07-06-2008 03:08 PM

Re: 20 years old and suffering from a lifetime of dizziness
Thanks so so so much for your help. Even if you aren't a qualified doctor, you've given me a lot of hope for an eventual cure or at least hope that I could go maybe a year without any dizziness.

Boslee2008 07-06-2008 06:45 PM

Re: 20 years old and suffering from a lifetime of dizziness
well, unfortunately, "cure" is a very strong word with vestibular disorders. However, MANAGED is entirely possible and I believe you can get your life back to normal yes!! And I think you can get your life back for more than a year!! I think you can get your life back to a sense of normalcy in the long run!! We all have ups and downs, and nobody can really escape that, but you don't have to be stuck where you are! All of these conditions are manageable, but the key is getting the proper diagnosis as symptoms DO tend to overlap. It would appear that you are looking at a miniere's disease or migraine, but it could be something odd or off the beat and path which is why you need a qualified physician but whatever it is, it isn't dangerous because after this long, you would have known it. I personally think you are going to be ok. Just don't give up, keep persuing, and seek out the BEST doctors you can find!! Get the inner ear testing at the very least, and see what that brings. Keep us posted!


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