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Post by eliuri on Jan 3, 2015 17:07:09 GMT -5
The condition itself was triggered by a fall and emerged out of that over the ensuing few weeks. Rocking sensations at first were like little attacks of "floor moving up and down" sensations with more clear cut perceptual stimuli. This generalized, over a period of months, to a persistent "ambient rocking" whenever I walk on a hard surface. It typically wont occur if that surface is sloping upwards or downwards.
The daily triggers now are very much different from that precipitating event.
1) Sleep deprivation: A good night's sleep seems to "reboot" my system, and the rocking is much less upon waking. Much depends on how much I've slept.
2) Anger: It doesn't take much of that to make the rocking feel like there's storm on the sea
3) Reenactment of fall: Preparing to go down that particular stairway where I injured myself will bring on the rocking. As does passing that particular step that was dislodged.
4) Fears: Most specifically any roadblock to change of living conditions. Once such setbacks bring on relapse, it'll stay worse for a long time.
5) Muscle pain and tension: Mostly in shoulder blades. Occasionally neck as well. Even mild tension headaches, which I do get frequently nowadays, will make it very much worse. Flare ups of pelvic floor type tension will make it much worse as well. But pretty much any type of muscle tension affects the rocking.
6) Texture and slope of surface I'm walking on: This is the most paradoxical and least logical of my triggers. A hard unyielding surface will cause rocking. A softer more pliant surface, such as grass, snow, foam, etc.. will not. The flatter the surface, the more likely it'll trigger rocking. The steeper it's sloped, even if its hard surface, the less the rocking. It's paradoxical because supposedly the easiest surface to balance on is a hard, flat surface. Yet that causes the most rocking sensations...
~eliuri
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Post by jools on Mar 17, 2015 12:41:45 GMT -5
Hi eliuri,
I've had the same rocking/bouncing dizziness while walking as you since 2009. It all started in a punk rock show when I suddenly started to feel extremely dizzy and I was sure I would faint. I don't know what caused it, maybe it was poor oxygen levels at the club, stress, alcohol, something else or all of them combined. Yet I managed to get out of the building to the fresh air and it got a bit better. I thought a good night sleep would clear the rest of my head but unfortunately it completely didn't. Since then I've had that dizzy bouncing feeling almost everytime I'm walking.
It took 4 whole years for me to tell someone about my condition or go to a doctor because the symptoms were luckily pretty mild (and I was too afraid of a brain tumour, stupid me). The symptoms were there every day but I could live with them without problems. In 2013 the dizziness got worse for some reason and the bouncing sensation got stronger. Then I finally went to see a doctor and told my family about it. The neurologist said it was a classic case of neck/muscle tension caused dizziness. After the diagnosis I've tried fysiotherapy, ostheopathy, chiropractic and lot of different massages but with little or no gain.
Last autumn I read about CSD in dizzytimes.co.uk and it really made much more sense than just the muscle tension theory. In february I went to see a new neurologist who sent me to ENG and MRI exams. He said we would try the SSRI route next if those results were fine. I've now had the tests taken and I'm going to see him again in two weeks.
It's really strange like you said that harder the surface you're walking on the stronger the symptoms are. It's also strange that I can run, go to the gym, ski (both downhill and cross-country), skate and cycle without that bouncing but almost at the second I switch to walking the symptoms are back. It's comforting to see that we are not alone with this condition and that together we can fight it.
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Post by eliuri on Mar 30, 2015 13:59:01 GMT -5
Thanks Jools. Just saw your post here today. Please let us know how it goes with results and treatment plans.
Question: When they thought it was neck or muscle tension, were there any findings on scans or such to back that up? Was there much pain in neck or shoulders?
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Post by jools on Mar 31, 2015 12:35:20 GMT -5
Good to hear from you. There were no x-rays or anything like that, the doctor based the diagnosis on manual evaluation and his "prior experience". I do have minor problems with my posture because my thoracic spine is flatter than it should be. That brings my shoulders forward and causes constant tension on my neck, shoulder and chest area. Sure I also got some pains sometimes but nothing to cry about. Like the new doctor who I met last month said, almost everyone have nowadays neck and shoulder tension and pains but they still don't feel dizzy. In my case that may be one of the reasons but I think there's something more than just that. I was supposed to see him again today but unfortunately he had gotten ill so the possible new treatments are now postponed.
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Post by eliuri on Mar 31, 2015 13:59:34 GMT -5
Thanks Jools:
I too have forward head posture, which probably plays some contributing role, but so do many millions of others...
Also ..its beginning to seem that subjective dizziness in itself may cause some degree of neck-shoulder issues. I'm not certain of this, so I'm wondering if you're being told the same...
The pattern of : "The more difficult the balance task, the better the balance" which we both noticed--that pattern is a hallmark of the "Phobic Postural Vertigo" syndrome, as is the strong dependence of symptoms on the postural state. Whether these "signature" qualities are also found in some forms of purely cervicogenic dizziness, I do not know.
Please continue to keep us posted on this.
Thanks
~eli
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Post by Michael T on Mar 31, 2015 16:30:42 GMT -5
There is no doubt to me that CSD eventually causes significant shoulder and neck pain. I'm going through a bout of ridiculous pain as I type this.....
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Post by eliuri on Mar 31, 2015 16:33:12 GMT -5
Michael:
Before the dizziness began, did u have the neck pain?
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Post by Michael T on Mar 31, 2015 16:58:10 GMT -5
never !
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Post by eliuri on Mar 31, 2015 17:08:31 GMT -5
That pain might be caused by that tensing of specific muscle groups as shown in that study of those with fear of heights...Whats not yet clear is whether this tension is also contributory to the subjective dizziness as well, engendering a vicious cycle such as the one I posted about earlier.
Brandt's writing suggests muscle co-activation in the lower legs as a culprit..But might not the shoulder/neck muscles play a role as well?
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Post by Michael T on Mar 31, 2015 18:46:58 GMT -5
Absolutely....I have no issues with muscles except for the neck / shoulders, and it started really hurting about 3 weeks ago
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Post by jools on Apr 1, 2015 9:03:04 GMT -5
The doctor #1 (muscle tension theory) said that it's completely logical if my symptoms are absent when I'm running because that warms up my muscles. I don't think that's very convincing, hardly those muscles warm up at the same instant when I change to for example running or skiing.
My symptoms are also much lesser if my mind is really occupied with something else, like was the case in my wedding, bachelor party or graduation ceremony. That doesn't fit to the muscle tension theory either imo.
One strange thing is that I don't think I ever really had neck pains before I was diagnosed that I have neck tension problems. So maybe it's all psychosomatic or then I just didn't pay any attention to them before.
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Post by eliuri on Apr 1, 2015 17:02:13 GMT -5
There's such a thing as overly anxious attentional control of upright posture. This inevitably creates muscle tension in the muscles used to keep an upright posture--the so-called "anti-gravity muscles." This "attentional control" is often suspended automatically when the pace is increased such as by running. It's also suspended when distracted or attention diverted to more complex things. Sounds familiar?
I had put forth some of the speculation on this in a very schematized from here back in February. Let me know if any of that makes sense in terms of your own experiences: chronicdizziness.freeforums.net/thread/83/vicious-circle-phobic-postural-vertigoAlso, another more detailed post by me on this at: chronicdizziness.freeforums.net/thread/82/muscle-contraction-csdinkLet me know if any of this makes sense... ****************************
"One strange thing is that I don't think I ever really had neck pains before I was diagnosed that I have neck tension problems. So maybe it's all psychosomatic or then I just didn't pay any attention to them before. "You're saying that the pain began when the neck muscle tension diagnosis was given, and wasn't there before? I find that quite interesting. I get things just like this. Can be quite dramatic at times... Best wishes and please let us know bout future consults, treatments and progress ~eli
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Post by Michael T on Apr 1, 2015 21:22:24 GMT -5
"One strange thing is that I don't think I ever really had neck pains before I was diagnosed that I have neck tension problems. So maybe it's all psychosomatic or then I just didn't pay any attention to them before. "
The element of all this that troubles me the most....
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Post by eliuri on Apr 1, 2015 22:19:53 GMT -5
What is?
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Post by jools on Apr 1, 2015 23:17:30 GMT -5
Those are great posts Eliuri and they totally make sense. If we only knew how to break that cycle.. It's a huge amount of energy that we all spent thinking about our balance and condition, if we could somehow forget to think about it we probably would feel much better.
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Post by Michael T on Apr 2, 2015 15:40:34 GMT -5
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Post by eliuri on Apr 2, 2015 16:29:55 GMT -5
Those are great posts Eliuri and they totally make sense. If we only knew how to break that cycle.. It's a huge amount of energy that we all spent thinking about our balance and condition, if we could somehow forget to think about it we probably would feel much better. Thanks Jools. I'm not sure how to break this cycle. But since more is known about how to ameliorate muscle tension than how to tackle dizziness, my hunch would be to focus on muscle relaxation. If the premise of the vicious cycle here is a correct one Another approach might be cognitive dual tasking, whereby u try your best to do complex mental tasks at same time as walking.Thereby diverting attentional focus away from balance control. If you find this almost impossible to do, as I have personally found in my own case, at least it would help give some confirmation that this attentional control is going on...
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Post by jools on Apr 3, 2015 3:41:28 GMT -5
It indeed sounds extremely difficult, my own mind is the the mightiest opponent I could imagine. Especially if I'm walking alone my thoughts too easily just wander to the bouncing sensation I'm having. What comes to the muscle relaxation I've tried so many things already like I said in the first post. Probably worth mentioning is that in last autumn my chiropractor, after a ten time treatment sessions, finally came to a conclusion that my problems must be breathing related instead of neck related (his spine manipulation efforts didn't really have no effect at all). He examined my breathing and told me I was probably slightly hyperventilating all the time. He ordered me to sit in the chair and told me to breath in a way that my exhales are twice as long as the inhales. I tried 4s inhales, 8s exhales and a small pause after the exhales pattern for ten minutes in that chair and when I stood up and started walking I had no dizziness at all for a couple of minutes (!). And I can tell you that felt huge because normally my dizziness starts after a couple of seconds when I start to walk. I started doing those same exercises also at home and work plus I went to see a yoga therapist who the chiropractor recommended. She changed the breathing pattern to 4s inhales, 6s exhales and 2s pause after that. Unfortunately though the effects were never so drastic again that they were the first time at the chiro (was it also a psychosomatic effect, I don't know..). But there might be a link between the dizziness and breathing also. Have a happy Easter Eli and Michael and also everyone else who might be reading this thread.
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Post by Michael T on Apr 3, 2015 7:17:01 GMT -5
You too Jools ! You too !
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Post by eliuri on Apr 4, 2015 14:40:33 GMT -5
"He examined my breathing and told me I was probably slightly hyperventilating all the time. He ordered me to sit in the chair and told me to breath in a way that my exhales are twice as long as the inhales."
************************
Hi again Jools:
Rapid breathing rate may actually go along with muscle tension. I cannot say for sure. It's very possible both are going on. My own initial breathing rate, before attempting to slow it down, is quite a bit over the average norms. I can slow this down and lengthen exhale in proportion to inhale as was recommended to you, but it inevitably returns to its more rapid rate quite quickly. Perhaps thats why the relief you had vanished after only a few minutes of walking? Or perhaps breath rate is only one factor here.
There's a biofeedback device which helps guide you through lengthening exhalation, which is marketed for blood pressure reduction. It is a bit overpriced for the technology it uses. I've used this to readily slow my breathing, at least in temporary way. However , it is designed to be used while reclining or seated. It can potentially be tweaked to be used while walk ing as well--which is when the breath rate is more crucial here. But you would somehow need to find a way to carry this small device with you as you walk which is wired to a belt that measures the breath rate. I'd been hesitant to recommend this on forum before because it was so pricey. But i now see it being sold for $99. Maybe look at eBay for even cheaper one..If there's good chance that rapid breathing is playing a large role in your own dizziness or muscle tension, this way of slowing the breath and lengthening exhalation duration is a much more gradual one than the more deliberate methods often used. The methods often used to slow breath may create a tension of their own. So maybe this biofeedback way is more beneficial. Anyhow , here's link to this device: www.resperate.com/Start with the least expensive one, because you don't yet know if this will help you much..Happy Easter to you and all here.
~eli
=========== PS:
I posted about this in greater length here:
chronicdizziness.freeforums.net/thread/88/biofeedback-device-slowing-breathink
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Post by jools on Apr 5, 2015 1:49:46 GMT -5
Thanks again for the tip Eli, looks like an interesting device. I'm not sure though if that adds enough extra to the breathing exercises and yoga lessons I've been taking. Maybe I'll consider it again if they make a smaller portable and wireless version of it. Btw I had a pretty good and almost symptom free day yesterday, I was doing some lumberjacking with my family at our summer place the whole day, fresh air really does wonders.
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Post by eliuri on Apr 5, 2015 17:50:18 GMT -5
Thanks again for the tip Eli, looks like an interesting device. I'm not sure though if that adds enough extra to the breathing exercises and yoga lessons I've been taking. Maybe I'll consider it again if they make a smaller portable and wireless version of it. Btw I had a pretty good and almost symptom free day yesterday, I was doing some lumberjacking with my family at our summer place the whole day, fresh air really does wonders. Hi Jools. A much smaller wireless device..That's exactly the type of tweaking that would make it useful for the type of dizziness we both have...So that the breathing control continues as we are walking, when it likely is going faster.. The Resperate company had ignored my emails suggesting such changes.. Great news about symptom free period due to distraction!! Look for such things as distractions and symptom free periods you notice as signs for yourself that attentional control may be driving much of this. Along with phenomena such as the paradoxes of the rocking going away during more difficult tasks. These are all hallmarks of this syndrome. Along with having good balance unaffected by the rocking sensations. I'd ask the physician you're going to see soon about VRT for this type of dizziness. It's done somewhat differently from VRT with true vestibular deficits. It's a bit more unclear in cases where it's always there simply by walking, such as in the type we have. VRT is more commonly used when specific provoking actions are deliberately done in repetitive ways so that one compensates/habituates to the sensations. It's not like you can keep repeating head turns or complex stimuli to provoke it in cases such as ours. One of the pioneers in the CSD field, Dr Jeffrey Staab. believes that VRT should have a 60--80% success rate with CSD. But other than to say its to be be done much more slowly and gradually, he unfortunately doesn't go into much details as to how exactly one goes about it in such cases. I think its wrong to subject those with such conditions to long term psychotropic medication unless a less intrusive approach such as VRT is tried first. Here's link to summary of Dr Staab's views on VRT for CSD: chronicdizziness.freeforums.net/thread/48/jefferey-staabs-comments-vrt-csdBest wishes ~eli
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Post by jools on Apr 6, 2015 2:27:18 GMT -5
In fact I already asked him about VRT the first time I saw him, but his answer was a bit problematic. He said I don't need any spesific VRT because in his opinion skiing, biking and all the other activities I can do are enough for "VRT". But I don't think doing activities that don't cause dizziness help me cure entirely the dizziness I experience when I'm walking. The term he uses instead of CSD/PPPD is "phobic" or "psychogenic" dizziness and it seems he's not completely familiar with the latest findings in the chronic dizziness reseacrh.
Have you had supervised VRT and what kind of exercises has it included?
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Post by eliuri on Apr 6, 2015 3:19:10 GMT -5
In fact I already asked him about VRT the first time I saw him, but his answer was a bit problematic. He said I don't need any spesific VRT because in his opinion skiing, biking and all the other activities I can do are enough for "VRT". But I don't think doing activities that don't cause dizziness help me cure entirely the dizziness I experience when I'm walking. The term he uses instead of CSD/PPPD is "phobic" or "psychogenic" dizziness and it seems he's not completely familiar with the latest findings in the chronic dizziness reseacrh. Have you had supervised VRT and what kind of exercises has it included? Hi again, Jools: I had standard VRT at first, but none of the exercises he had me do provoked those sensations. He kept having me do them anyhow for months, and to no avail. I later discovered that if I stand in the Sharpened Romberg (heel to toe with eyes closed) the rocking comes on stronger. So this was some sort of "provocation". I continued doing only that one. Sometimes doing it while walking that way with eyes closed as well...(So you might want to give this a shot yourself as well. Just be careful walking with eyes closed..) I then went to another center, where the chief of vestibular therapy ran quite a number of in-office tests and concluded my issue is "non-vestibular" , my balance is excellent, and that VRT wont help me. Since its essentially an issue of how I perceive my own self-motion... By that time,the first center had already used up most of my insurance allotment for VRT by having me do those useless exercises which provoked nothing. So unfortunately, I'm now stuck with trying to figure out my own "VRT path" in this... I do feel rather lonely in this journey, with little support at this point from professionals. Until the new quota period kicks in...I don't do well at all on SSRI's Maybe you can show him that excerpt from Dr Staab's journal article on VRT which projects a 60--80% success rate in CSD? Perhaps he can look into this further after he sees that? He's right in part, that those activities you're now doing may help , especially since you're doing such a large range of those. But it's also the case that those aren't addressing the outstanding fact that the rocking sensation we feel are specific to simple walking on the simplest of surfaces. It might also be the case that the notion of needing to "provoke the dizziness" or bring forth a more intense form of it in order to heal it via VRT may not apply to CSD type disorders. Perhaps it only applies to those who have specific deficit they need to habituate to. But I do have this gut feeling that there's a more specific VRT-type regimen for this than what we're already doing. One perhaps not based on the model of "provoking the symptoms" altogether?... . I really don't know what this might be. But this remains the most crucial question for me in all of this. I'm experimenting with different styles of walking, attempting to somehow keep muscles from tensing, and even trying different types of ankle motions. All in an effort to retrain my gait and restore it to how it was before. Jools. Not sure I can explain this in a short amount of words. But I think it's to your advantage that he's looking at it in terms of "Phobic Postural Vertigo" if that's in fact why he's using those terms. I may be reading a bit too much into this.. The University of Munich team, which does continue to use those notions of "phobic" and "psychogenic" has a much better grasp on this whole phenomenon , if you were to ask me. We both have the classic from of this disorder, and the hallmark finding of its often disappearing with more complex balance tasks. It's true that CSD or PPPD is a later reworking of this earlier research, but all it added was over-reliance on SSRI's as well as including dually diagnosed, such as MAV+CSD. The latter may be a step forward, but the former is a step backward in my own opinion. I don't see where Staab has come up with an explanation for this which really adds much or supplants what Brandt's team at Munich has developed and is continuously building on. The University of Munich team continues to use the phobic, psychogenic model to this very day in spite of this recent revision. They also continue putting forth much more insightful research on this and the hypothetical mechanism behind it than does Staab's group over at Mayo Clinic, though they do work with very small patient groups in their research. Excuse the choppiness of this post. I'm very exhausted. So if it doesn't make much sense, ask me and I'll try to find better way of explaining it. Best wishes and please continue to keep us posted: ~eli
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Post by jools on Apr 6, 2015 4:24:39 GMT -5
Eli, you really have studied this condition a lot, it's great that you're sharing this all with us. What comes to SSRIs, I don't think that they will somehow magically heal me, in fact I don't think anything completely will. But some things may decrease the symptoms even a little bit (of course those same things can also make them worse) and I'm willing to try them all.
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Post by eliuri on Apr 6, 2015 12:20:48 GMT -5
Hi Jools:
Some do get pretty good results with SSRIs. And some it does make them worse. But do try to keep a positive attitude on it.
I wouldnt expect a neurologist to know specific VRT regimen for this. But he might know of centers/therapists to refer you for it or where to begin to ask around.
My thinking on this is: Why go on long terms medication use if there might be a way to retrain the mind to adopt a more adaptive mode of perception?
Another approach is of course to do both, which is actually what Dr Staab recommends for this.
When this condition was first described by Thomas Brandt of the University of Munich, he found that 75% got significantly better (and 30% resolved entirely) by having the condition explained to them in some detail and making some simple behavioral changes. Most of these did not even need medication at all. Very similar results were obtained in an Israeli study using same methods. When the condition was framed in CSD terms years later, the recovery rate was exactly the same at ~75% with all those patients placed on SSRI. So you can see my line of thinking on this..
~eli
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Post by jools on Apr 7, 2015 10:30:35 GMT -5
My neurologist called me today, he told that my right ear caused stronger nystagmus in the ENG test. I'm going to see him next tuesday, then we know how we're going to proceed.
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Post by eliuri on Apr 8, 2015 18:07:24 GMT -5
I assume this was based on the caloric test component of the ENG? Had you had this test before years back wehn you first went to a neurologist? Some degree of assymetry is regarded as within normal limits. I think its up to 25% depending on the lab. Hopefully the neurologist knows this. But I've read on forums where at first this was seen as abnormality n later it was realized to be within normal limits. Did he tell you by how much percentage one ear was stronger than the other? You might want to look here: www.dizziness-and-balance.com/practice/caloric_test.htminkI know little about interpretation of the caloric test other than some reading. So for what it's worth, here's quote from above link which may or may not be relevant: which to me suggests that disparity between 25% and 40% needs to be confirmed by other tests. So I'm posting this only for FWIW. I'm not absolutely sure I'm understanding this correctly. But false positives here are common.. Best: ~eli
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Post by jools on Apr 8, 2015 23:14:56 GMT -5
This was the first time I had ENG. We talked only briefly on the phone and didn't get much into details, we'll know more on next tuesday.
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Post by eliuri on Apr 8, 2015 23:33:13 GMT -5
Good luck and lets hope for a productive consult. Sorry if I'm overloading you with info. I keep hearing that many professionals are limited in these things.
~eli
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