problem:extreme dizziness

[becky_girl]

Hello all:
I posted the initial problem before a cpl of years back, but cannot find the original post now to continue the story - with hopes of finding help here...

I tried to return to skating a cpl of years ago, this after skating as a teen (level:axel, some dbls). Extreme dizziness would stop my session every time.

I'd get extremely dizzy from simple 3-turns, or stroking sessions (watching the others on opposite of me in the circle) or attempting a spin - I'd have to stop after 3 rotations.
It was very very bad, to the point of rushing off the ice to a bathroom.

Everyone said: "It's because it's been a while, you'll get used to it again & it'll be ok".
It never did & the sessions were pointless as all I could do was general stroking around the perimetre of the rink.

I tried anti-nausea medication (herbal & pharmaceutical), Sea-Band bracelets, tons of stuff, nothing worked.

After being told by the General Practictioner physician that I probably had an ear infection (for a year?!) I was finally sent to an Ear, Nose Throat specialist.
This took another 6 months.
This ENT finally sent me for a head MRI.
He had first done a series of tests but he could not demonstrate any ear problem. (Tests were too induce dizziness: warm water jets in ear, watching images move very fast on a wall - like a train passing by at high speed, etc.). I felt awful during these tests obviously.

MRI spotted 2 abnormalities: a "pineal gland cyst" and "Chiari Malformation type I".
I was sent to a neurosurgeon who insisted that neither of these abnormalities were the cause.
A search in Google gives information on "Chiari Malformation type I", and it is the opposite of what I was told: "there's plenty of room in this area, it's not causing your dizziness"...

I've been considering going through the nightmare of trying to get a second opinion but our medical system is frustrating.
Not only is it nearly impossoble to get your doctor to refer you, the initial report goes to the 2nd opinion person, immediately coloring the situation. (apologies to any physicians out there who feel that this isn't the case, but everyone is human -- my opinion is that it has colored things in the past).

For instance: on the 1st report it says something like (I paraphrase, btw, can't remember exact wording) "since she arrived in bike clothes, having ridden her bike to the appt, I told her I could not imagine anyone having severe dizziness could ride a bike". Apparently this neurosurgeon missed the day at med school when they covered the definition of the word: "episodic".

I've been lurking around this and other forums, to see if anyone has ever experienced this...Or knows of anyone...

I've watched Skating With Celebrities and am amazed at how most of these beginners can do all the things they are doing and I can't even do a (barely) 3-revolution spin without rushing off to puke.

Besides stroking around the far perimetre of the rink, I really cannot figure skate beyond this.
I'm very sad about this situation: now that I have the ability to pay for my own lessons & can get my own self to the rink (lack of parental support initiated my difficult decision to leave the sport I loved as a teen), now THIS is stopping me. :cry:

Anyone?

Many thanks.

[mikawendy]

Wow, sorry to hear of all your medical problems. I've never met anyone with Chiari I malformation--is it very common for it not to be discovered early in a person's life? (I've heard of Chiari II malformation which is different than Chiari I.)

Maybe if you get sent for a second opinion somewhere, you could call ahead and ask that doctor to not look at the first doctor's report until after they've seen you, saying that you're interested getting as much information as possible out of the first and second opinions.

I don't have quite the same dizziness problems as you, but I have something called BPPV (I forget the acronym, but I think it means benign positional paroxysmal vertigo)--essentially, little crystals of calcium in the semicircular canals of the inner ear get caught--the inner ear then sends input to the brain that doesn't match the input from the eye, and the brain has to sort out which is correct (hence the feeling of vertigo). I'm usually most affected when I'm doing things like reading, cooking, watching TV. The ENT who saw me never was able to confirm the diagnosis for sure (he was looking for nystagmus--a jiggling motion of the eyes--that occurs during the episodes of vertigo--however, he only put me through things involving sideways rotation of my head, whereas uppy/downy motions like looking down to read or prepare food are what cause my vertigo--so he never saw the nystagmus and I didn't realize then that my vertigo comes more from uppy/downy motions or positions of my head). I wasn't pleased with my initial PT, either.

Have you tried keeping a VERY detailed log of your symptoms and what brings it on? Such as where you are, the environment (hot/cold, indoors/outdoors, day/night), what you're doing (very specifically--are you rotating? are you moving your head side to side? are you moving your head or body forward or backward? do you have your eyes closed or open? do you have contact lenses or eyeglasses on?) and other things, such as whether you have a headache or upper respirator congestion, etc. Some of this info might help a doctor pinpoint your problem. (If your docs weren't so busy being unhelpful they might have been able to use the bike riding as a clue to your problem--something about riding a bike doesn't cause problems whereas turning while skating does--and the motions involved in each are quite different.)

I would also suggest that you educate yourself as much as possible. At any doctor's visit, ask questions and take notes (or bring someone along to help you with this) so you can get as much info as possible. If you know you'll have a lot of questions, when you schedule the appointment, you could ask ahead of time if they could reserve a little extra time for you since you know you have questions. If the doctor tells you of his or her suspected diagnosis or things he or she is trying to rule out, you could also do research on your own (just to get more info)--just remember that the internet has a lot of reliable AND unreliable info. I once had a different ongoing medical condition and I went to PubMed for more info. It has very technical information from medical journals, but I was able to wade through it after a while and got some helpful info.

Also, have you ever had any neck injuries or bad falls in which your back/neck were hurt....?

[Debbie S]

I'd get extremely dizzy from simple 3-turns, or stroking sessions (watching the others on opposite of me in the circle) or attempting a spin - I'd have to stop after 3 rotations.
It was very very bad, to the point of rushing off the ice to a bathroom.When I read this, I thought of a friend of mine, who has lots of problems with dizziness (in fact, she would like to take skating lessons but feels it's impossible with her condition). She also has occasional vertigo episodes. This is due to an ear condition called Meniere's Disease (not sure if I spelled it right) that has also affected her hearing in one ear. Perhaps another visit to an ENT (a different one) is in order.

[EastonSkater]

What about your blood pressure? People with low blood pressure can get dizzy fairly easily too.

[Moto Guzzi]

becky_girl, I don't have any suggestions for you because it seems that you have tried everything I would have suggested. I hope somebody has an answer for you.

I don't have quite the same dizziness problems as you, but I have something called BPPV (I forget the acronym, but I think it means benign positional paroxysmal vertigo)--essentially, little crystals of calcium in the semicircular canals of the inner ear get caught--the inner ear then sends input to the brain that doesn't match the input from the eye, and the brain has to sort out which is correct (hence the feeling of vertigo).
Mikawendy, I have that same problem as a result of a head injury. At first, any type of head movement triggered my vertigo; it was like staggering around drunk with the room spinning around me. My doctor prescribed medication for me that helped a lot but I can't remember what it was. Over a period of several years, my vertigo has improved but it has never gone away entirely and tends to worsen when I'm tired.

[dbny]

Mikawendy and Moto Guzzi, have you heard of The Epley or Semont Maneuver for treatment of BPPV? According to this article (http://www-surgery.ucsd.edu/ent/PatientInfo/info_bppv.html) on the UCSD site, it has a 75% success rate on the first attempt.

[Mrs Redboots]

What about your blood pressure? People with low blood pressure can get dizzy fairly easily too.But normally only when they stand up too fast or similar - I used to have low blood pressure (those were the days!) and had to be careful.

My grandmother had Meniere's disease, and very nasty it was, too. But sometimes she was fine for quite long periods of time, and then it would flare up again. But I think that was associated with tinnitus and other symptoms as well as the dizziness.

[becky_girl]

Many thanks to all who've replied!

I wish wish wish wish that I had a "lightbulb moment" reading your posts..but unfortunately no. It's pretty much what I've sifted through (& tried) already.
I've been researching on the 'net etc. for 3 years now. The first time this happened was in 2003, during my first attempt back at skating. I had even managed to (somehow) do a flip in that session (?!)...

So, the suggestions such as benign positional vertigo - along w/the Epley maneouvres - were some of the first things I thought & tried (after reading THAT on the "big, bad 'net", lol). This particular idea was ruled out at my first visit to the ENT.

Same with Méniere's .. although with Méniere's, it IS an inner ear disorder w/o a cure anyway, so to have that diagnosis isn't a solution to the problem unfortunately.

At my last appt. with the ENT (he had received the neurosurgeon/MRI results report by then), he concluded it is "some sort of inner ear problem" BUT that the tests he's performed have "not been able to demonstrate this" (basically: normal results).

The neurosurgeon report to him (ENT) stated that neither one of these 2 abnormalities (chiari malformation & pineal gland cyst) are responsible for my symptoms - apparently these are "incidental" findings.

In answer to the question why wasn't the chiari diagnosed earlier - I'd never had a head MRI before - never had a reason to be sent for one... Apparently this (and the cyst) is an incidental finding.

Only after the diagnosis of Chiari (and being told it's nothing, basically the equivalent of a crooked little toe or something - as he put it) did I go on the 'net just to see where this chiari was situated, in the brain.
Afterwards, I thought to myself: "ah, yes, I choke on food literally every single day" and other 'symptoms' listed...hmmm...

Symptoms that no doctor cared about before, if I'd mentioned it during a routine physical.
You know how it is...
But, again, apparently it's not a problem supposedly.

The neurosurgeon's report didn't even give a "millimetres" number -- which I think they are supposed to state (degree of blockage).

But it's just asking for more hassle when you point out this type of discrepancy: "Well, I read on the 'net that you're supposed to give the degree of blockage ...bla bla bla". (If they are going to state that it's not causing my dizziness, then back it up with numbers, no?) ..

I've been chastised by docs b/c I've gotten info looking at the 'net! They hate it. Even if it's info from a reputable source, such as the new England Journal of Medicine or the Mayo Clinic site or something and makes us better informed. It's as if they're afraid they'll lose their usefulness on 'minor' issues. (Think "drinking daily cranberry juice" knowledge in prevention of UTI's for instance...). I don't buy the "don't look at the 'net b/c you'll be more afraid than you could be!" line. I'm not stupid and have very good comprehension skills. I had actually considered med or law school once, but hated the attitude of it all and nixed that idea! lol

I did keep very detailed notes of the problem, I'm a devoted journal writer.

It all started in 2003 upon my attempt to return to the sport, and apart from a severe 3 weeks bout with it in Jan. 2004 (vertigo, officially) (where I was literally in bed for 3 wks, unable to read, watch t.v., turn over, etc. - just spent time sleeping/head thick feeling/staring at the ceiling) -- it has only been problematic when I try to skate.

Docs answerered: " Just Don't Skate - chuckle, chuckle, tsk tsk - that's for kids anyway! It's not like it's a real problem."
True, I suppose. Except for that 3 weeks in Jan. 2004.

What a odd response they give in the end!

I mention this because when I finally DID get to see a specialist (ENT), he actually chastised me for not calling an ambulance (!?) when I was hit with it during that 3 week period in Jan. 2004!

In response, I said: 'Well, look at what's happened since? You guys are telling me that there's nothing you can do & that I shouldn't actually care about this litle problem anyway!"

(This whole ambulance thing - the drama, being taken out on a stretcher? - and then just being sent home to keep crawling to the bathroom with my husband's help anyway? I mean, really!) :roll:

That's why I came here, to post, in hopes of a miracle - perhaps someone knew someone who had this degree of dizziness (when they never had a problem in the first place, not a newbie) and was able to overcome it and skate again.:frus:
:)

[Bothcoasts]

But it's just asking for more hassle when you point out this type of discrepancy: "Well, I read on the 'net that you're supposed to give the degree of blockage ...bla bla bla". (If they are going to state that it's not causing my dizziness, then back it up with numbers, no?) ..

I've been chastised by docs b/c I've gotten info looking at the 'net! They hate it. Even if it's info from a reputable source, such as the new England Journal of Medicine or the Mayo Clinic site or something and makes us better informed. It's as if they're afraid they'll lose their usefulness on 'minor' issues. (Think "drinking daily cranberry juice" knowledge in prevention of UTI's for instance...). I don't buy the "don't look at the 'net b/c you'll be more afraid than you could be!" line. I'm not stupid and have very good comprehension skills. I had actually considered med or law school once, but hated the attitude of it all and nixed that idea! lol




Becky--I wish I could offer you some advice. Unfortunately, I haven't the faintest clue as to what could cause your dizziness and know that my information would be no better than yours in coming off the internet.

That being said, it made me sad to read about the doctors you've seen who have criticized your conducting research on the internet. I also like to research information on the net so that I'm more aware of possibilities--not to second-guess doctors, but simply because I'm the one who is ultimately responsible for my body, and I want to know that every option is considered. As a result, I seek out doctors who don't mind my being curious and asking questions. Do you have the option of finding doctors who are a little more receptive to patients like us?

[becky_girl]

Thank you for your kind words and understanding!

Wow - I'm realizing that I sound like QUITE the Rant-Queen, don't I?

About other docs:
I am currently debating that very idea... That's the debate inside me now: Do I bother trying again & again? Since it makes me feel sort of worse afterwards (in my heart I mean). It has been 3 yrs of "getting nowhere slow".

(too bad there isn't a figure skating doc on the board here) ...

Hey! THAT'S an idea!

Is anyone out there near the Mariposa Club in Barrie, Ontario, Canada?

Or near the National Skating Centre for Excellence in Vancouver, British Columbia?

If there is someone out there, I'd ask a favour?
Maybe mention it to a pro-coach or someone involved in National Team health issues? Maybe a doc who GETS this kind of thinking: "skating is good, wanna keep doing it!" ? Who could maybe send me in the right direction in relation to THIS specific skating thing - neuro doc, ear doc, someone?

[mikawendy]

Mikawendy and Moto Guzzi, have you heard of The Epley or Semont Maneuver for treatment of BPPV? According to this article (http://www-surgery.ucsd.edu/ent/PatientInfo/info_bppv.html) on the UCSD site, it has a 75% success rate on the first attempt.

Thanks for the link, dbny! I had a PT who tried that maneuver with me, but it didn't work. However, he did it a bit differently than the article described--didn't warn me against lying down on the affected side, or bending over, etc. Another PT who treated me for piriformis syndrome and SI pain noticed that I had some neck and upper spine problems, partially from some old injuries and partially from some misalignments in my lower back and pelvis that were causing misalignments higher up the spine. When he fixed some of those (as they were contributing greatly to my SI pain), my vertigo also lessened the most it has in the past few years. I've recently had a flareup (after a bad cold/sinus thing), and I'm thinking of going in for a tune-up soon. That PT is great with spine/back/neck issues, plus he treats patients with BPPV. (And he's treated a number of skaters, some who post on this board.)

[Thin-Ice]

Is there a sports medicine doctor you can talk to? I find even if the problem isn't in their specialty, they often know and can refer you to other doctors who have the same attitude as they do. (One reason I LOVE my sports MD is when I went to him with ankle problems, the first thing he said was "Let me guess, you came to me because the other doctors told you to give up skating, right? I'm not going to tell you to give up skating, if you won't tell me to give up running.")

[becky_girl]

well, it's going to take many phone calls but I've decided that today I will try to wade through the "no's for referrals to any other specialists" from the general physician today.

In Canada, or at least here in Ontario, you can only be referred by your GP with an official medical "good enough" reason to see any kind of specialist.
It's not a private insurance kinda place - unless you're a pro hockey player!:lol:

Since the ENT & neurosurgeon have both decided as their "last word" report that there's nothing to be done for my "little skating problem" (this despite the - what I would think would be considered two fairly serious 'incidental' findings of a brain cyst & brain malformation - eek!), this will be a big challenge.

Putting on the kickboxing outfit...Hoping to knock down some limitating Ontario Health "Care" system walls today. :frus:

Wish me luck!
:)

[Moto Guzzi]

Mikawendy and Moto Guzzi, have you heard of The Epley or Semont Maneuver for treatment of BPPV? According to this article (http://www-surgery.ucsd.edu/ent/PatientInfo/info_bppv.html) on the UCSD site, it has a 75% success rate on the first attempt.DBny, thanks for the link. My ENT and I had discussed the possibility of trying this, but he preferred to wait until I had fully recovered from my concussion. He told me that the vertigo most likely would get better with time, and he was correct. I've had a few nasty episodes of vertigo since that were brought on by inner ear infections.