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Post by jessica on Jan 4, 2015 12:39:32 GMT -5
3 Jan, 2015 - Had my first dizzy free day yesterday! No rocking, no head spins or swimming, limited hazy feeling. It was a busy day too: MRI in the morning, a trip to the bookstore, a trip to my doctor, and a trip to the grocery story! Had a head ache, sore eyes, and some muscle pain in the evening but I'm so glad to know that it is physiological possible for me to have a dizzy free day!
Major Changes that I made not sure if they correlate: started having coffee again, tried to close my eyes for breaks frequently throughout the day and not focus my vision as much when walking (to avoid fixating on bouncing things in the distance).
Yippee!
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Post by Michael T on Jan 4, 2015 13:55:58 GMT -5
Had my first dizzy free day yesterday! No rocking, no head spins or swimming, limited hazy feeling. It was a busy day too: MRI in the morning, a trip to the bookstore, a trip to my doctor, and a trip to the grocery story! Had a head ache, sore eyes, and some muscle pain in the evening but I'm so glad to know that it is physiological possible for me to have a dizzy free day! Major Changes that I made not sure if they correlate: started having coffee again, tried to close my eyes for breaks frequently throughout the day and not focus my vision as much when walking (to avoid fixating on bouncing things in the distance). Yippee! That's great news Jessica, glad to hear a good news story, how about a second day!
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Post by jessica on Jan 5, 2015 21:05:15 GMT -5
Jan. 5, 2015. My non-dizzy state lasted for a day and a half. Then yesterday in the evening I got a pretty heavy dizzy spell for 3 hours (spinning mostly in my head). Eventually I took a Lorazepam, which calmed the dizziness down. Might have been triggered by too much time on the Wii Balance board or pushing my caffeine too high (I tried to sneak in 2 cups of coffee). Can't really say I've found a clear correlation between my dizziness and activities yet. Today I visited my eccentric eye doctor who always makes me happy no matter what kind of symptoms I'm having because he takes me seriously, never gives up on finding a solution, and always thinks outside of the box. He has suggested that as a designer I've been over taxing my eyes for years and that my sensory-visual preferences and attention to my visual environment aren't helping me with this inner ear stuff. He said he may escalate my case to an Neuro-opthamologist. He also says that I'm seeing things "I'm not supposed to" that the brain normal hides or tunes out...which I found a kind of fascinating way of thinking about my eye issues. He also said cases like mine tend to fly below the radar in the medical system because when I walk into a doc's office my coloring is good, I can have a straight-forward fluid conversation and my blood work comes back clear every time. Had a dizzy spell again tonight in the evening...which is weird because before I was having less dizziness at night and more dizziness in the morning. Your guess is as good as mine. My eye doc figures I should start documenting my dizzy levels every day. I'll start tonight. Health Log.pdf (176.01 KB) I modified the symptoms log from vestibular.org because the lines were not fun to look at.
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Post by Michael T on Jan 6, 2015 5:52:52 GMT -5
That's a very useful log Jessica, I am going to use it as well.
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Post by jessica on Jan 6, 2015 12:43:11 GMT -5
Jan. 6, 2015. Been getting these spinny head dizzy spells. They seem to come more often when I haven't taken a dose of Lorazepam. Not sure what to do when they come...lie down, walk around, ignore them. I usually take 1 dose of my meds between 9-11 am. I'm tempted to push it later in the day today because I have physical therapy at 1:45 and to see what happens. This is a very uncomfortable experiment...headed to the gym with my mom. I want to see if just some light walking/a ride in the car does anything. I'm struggling a lot with developing a routine for all of this...going to talk to my PT about it today.
UPDATE: My PT thinks "there is more at play" in my case because I can do the full tandem with eyes closed on a mat without looking like I'm going to fall over... As per the routine I'm supposed to provoke the symptoms every two hours. VRT is pure masochism. She gave me the most difficult tandem positions so at least my balance is good...a glimmer of hope.
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Post by Michael T on Jan 6, 2015 14:29:36 GMT -5
This stupid illness makes me so damned mad....
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Post by jessica on Jan 6, 2015 19:51:46 GMT -5
This stupid illness makes me so damned mad.... Yeah it's the absolute worst.
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Post by eliuri on Jan 6, 2015 21:35:03 GMT -5
Jessica wrote: That indeed is extremely difficult..so wouldn't this be a good sign? At least of excellent balance.. What do you suppose she meant by "more at play"?
~eliuri
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Post by Michael T on Jan 6, 2015 22:28:55 GMT -5
Psychogenic perhaps?
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Post by jessica on Jan 8, 2015 12:36:21 GMT -5
Jessica wrote: That indeed is extremely difficult..so wouldn't this be a good sign? At least of excellent balance.. What do you suppose she meant by "more at play"? ~eliuri Yes, definitely good news about the balance! Very happy there. It's my vision that is driving me crazy right now. I think she is waiting to get the formal diagnosis through my ENT...still waiting on the vestibular testing and the results from my MRI. She did say at this point my symptoms are somewhat similar to a post-concussion syndrome case...so Dynavision Training, and Cognisens Neurotracker are good therapies. I'm going to do those over the next two weeks along with acupuncture and chiropractic.
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Post by jessica on Jan 8, 2015 12:41:16 GMT -5
Not sure. Generally her philosophy seems to be that anxiety is not the causal factor in most vestibular dysfunction but it is a neurological player that needs to be managed.
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Post by eliuri on Jan 8, 2015 17:41:17 GMT -5
Jessica wrote: Very interesting about the post-concussion syndrome. Had the neurologist you consulted mentioned this at all? I think it's neurologists who diagnose this, often in cases of mTBI which don't heal in a timely manner.
I've at times wondered if this is not what I have. This was precipitated for me after I had fallen down some stairs and suffered a bump on the head. There was no loss of consciousness nor any memory loss, nor did doctor I consulted ~6 weeks later mention this possibility. But by then the concern was mostly about the pain.
Post-concussion, when you look at the symptoms carefully, does resemble much of what's reported for CSD, especially given the many perplexing symptoms people here are reporting. It also overlaps much with the PTSD except for the specific "dizziness" symptom..
In any case, what does "Cognisens Neurotracker" refer to?
~eliuri
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Post by jessica on Jan 8, 2015 20:33:08 GMT -5
Jessica wrote: Very interesting about the post-concussion syndrome. Had the neurologist you consulted mentioned this at all? I think it's neurologists who diagnose this, often in cases of mTBI which don't heal in a timely manner. I've at times wondered if this is not what I have. This was precipitated for me after I had fallen down some stairs and suffered a bump on the head. There was no loss of consciousness nor any memory loss, nor did doctor I consulted ~6 weeks later mention this possibility. But by then the concern was mostly about the pain. Post-concussion, when you look at the symptoms carefully, does resemble much of what's reported for CSD, especially given the many perplexing symptoms people here are reporting. It also overlaps much with the PTSD except for the specific "dizziness" symptom.. In any case, what does "Cognisens Neurotracker" refer to? ~eliuri My brother had post-concussion syndrome. He had symptoms for close to two years. It was awful. It's true a lot of our symptoms are kind of similar. The vision therapies I am going to try (Dynavision Training, Cognisens Neurotracker) are used for people with post-concussion syndrome, my PT thought that in my case they would make sense because of my vision complaints...but there was no concussion in my history. Here's info on that one therapy: neurotracker.net/
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Post by eliuri on Jan 8, 2015 21:49:26 GMT -5
Thanks much Jessica.
What helped your brother most with the post-concussion symptoms?
Was going to post here on this forum last week about some interesting things regarding post-concussion and CSD, but stopped myself because often just seeing and especially writing the word "concussion" makes my symptoms act up badly..Go figure...
It might be that the therapist was thinking along those lines because there was some trauma to the inner ear during those "rough" ear cleaning procedures you had done last Fall?
Not sure how helpful this is, but I've come across study which showed that symptoms, if they emerge after any injury, are not distinguishable from those following a concussion even if no concussion occurred in those. It's all a very hotly debated topic.
Sorry if I've diverted from your basic diary here, which is a very informative one. I'll try to do that less
~eliuri
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Post by jessica on Jan 11, 2015 12:01:28 GMT -5
Thanks much Jessica. What helped your brother most with the post-concussion symptoms? Was going to post here on this forum last week about some interesting things regarding post-concussion and CSD, but stopped myself because often just seeing and especially writing the word "concussion" makes my symptoms act up badly..Go figure... It might be that the therapist was thinking along those lines because there was some trauma to the inner ear during those "rough" ear cleaning procedures you had done last Fall? Not sure how helpful this is, but I've come across study which showed that symptoms, if they emerge after any injury, are not distinguishable from those following a concussion even if no concussion occurred in those. It's all a very hotly debated topic. Sorry if I've diverted from your basic diary here, which is a very informative one. I'll try to do that less ~eliuri Interesting...could you post those articles about inner ear trauma? No worries about posting...that's the point ; ) For my brother who hit his head on a rock while boating, it was really an issue of time and managing his days so that he didn't overstimulate his brain. He got really bad head aches and was very sensitive to light, sound, alcohol and caffeine. At one point he had to just sit in a dark room doing nothing, gradually things improved but it was a bumpy improvement...very up and down. He had a good neurologist who would tell him when it was safe to increase his activity level. A second bump to the head during recovery (he hit his head on a shelf) set him back a lot. But his better now, so that's really encouraging ; )
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Post by eliuri on Jan 11, 2015 16:38:48 GMT -5
Hi Jessica: Post-concussion is like CSD in several ways. Same controversies for one.. What baffles neurologists is that whether or not one gets PCS (post-concussion syndrome) seems to have nothing to do with severity of the injury, and more to do with the traits of the person who suffered it. As well as the beliefs of that person early on about the implications of the original head trauma. Thus emerged the theory of the "attraction of the psychological by the organic". www.ncbi.nlm.nih.gov/pubmed/20129739or read article in full at DeepDyve here: PCS: Attraction of the psychological by the organicMore elaborate discussion of this along with some practical suggestions found here: iospress.metapress.com/content/d622320h7h5154k1/fulltext.htmIn this sense, its similar to CSD which emerges after some vestibular event. In the case of CSD, it's a form of dizziness which piggy-backs on top of a prior one. The CSD is not proportionate to the earlier vestibular damage if any, but is more determined by the level of fear and panic of that person during the original vestibular attack. I do find it interesting that the actual symptoms of CSD are quite similar to many of the PCS group What I had in mind earlier was the study which compared those with traumatic brain injury with those who suffered other injuries--not specifically inner ear-- but not head injury either. The "PCS syndrome" was found almost as frequently in either group: those with head injuries and those with other injuries: www.ncbi.nlm.nih.gov/pubmed/25029015They could hardly tell these two groups apart based on the post-injury symptoms. Others are saying that PCS is essentially a form of PTSD. But I think this remains hotly debated PCS scares me when I think of it. It makes my symptoms worse if I dwell on it. So I had hard time writing up what I wanted to say about this for the forum last week. The reason is that there was much fault and negligence involved in my injury. If I think I suffered permanent brain damage as a result, the rage level gets very high. So at times I remind myself that there's no real proof I had an mTBI in the first place. Or that even if I did, it comes down to about the same thing as other types of CSD..I have to come to terms with the fact I may never know for sure, since I hadn't sought medical attention until 6-8 weeks later. Thomas Brandt, a neurotologist who I think is the most brilliant person in the CSD area, suggests that the dizziness often experienced after head injury or whiplash is in fact something that started out as inner ear damage to the otoliths, whereby crystals get detached soon after the trauma as a result of the jolt. He says this often happens in head injuries and/or whiplash.. So in his view, it's often not resulting from the head injury itself but emerges after such a concomitant inner ear injury. The otolithic vertigo clears up on its own via central compensation after a few weeks , leaving the CSD (or PPV) type of chronic dizziness in its turn.. Maybe ask your therapist what her reasoning was in making that connection? She may have a completely different set of ideas in her linking the two. Sorry to hear about how much your brother had suffered. Glad he's recovering.. ~eliuri
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Post by jessica on Jan 13, 2015 0:21:06 GMT -5
Jan. 12, 2015. So I have to admit I always thought Tai Chi looked a bit dorky, but now that I'm a dizzy person can I say that it is such a great experience. It completely removes the sensation of rocking. I felt like ME doing it. Wow! Today was a horrible day for the most part. I felt off-balance, foggy, and dizzy all at the same time...but I ended strong with a bit of cycling and exercise and a new found hobbie. Yay!
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Post by eliuri on Jan 13, 2015 15:41:11 GMT -5
Jessica wrote:
Amazing that your rocking goes away during Tai Chi!!
It used to for me as well. Completely. Then I made the mistake of over-challenging myself by doing the entire form blindfolded, so the rocking returned. Even when doing it normally now, its there but to a much lesser degree than in normal activities...(conditioning?)
I'll often do Tai Chi when I want to "stabilize the ground" below me..
There are ways to lessen the "dork factor" in this. Much depends on the style used to teach it.
~eliuri
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Post by jessica on Jan 14, 2015 13:40:24 GMT -5
Jan. 14, 2015. I have a love / hate relationship with my meds. I'm on Lorazepam; I take 0.5mg 1-2 times a day. Sometimes I find it works wonders. Like last night...I had a mostly dizzy-free, relaxed evening on the couch watching TV after it kicked in...which felt great because earlier in the day I felt horrible. That bit of relief, of feeling mildly like myself made yesterday bearable.
That being said, I'm curious to see what my baseline is. Sometimes I wish I had never been prescribed it in the first place. Where would I be right now? Sometimes I'm so thankful I have something that works. I'm surprised that my doc keeps prescribing it and that my ENT says it's okay given that neither has yet to give me a confirmed diagnosis...
Waiting until the beginning of Feb for my MRI results and another visit with a neurologist. And then beginning of March for Vestibular testing. A part of me really wants to ween off.
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Post by jessica on Jan 15, 2015 19:19:31 GMT -5
Jan. 15, 2015. Visited a sports psychology clinic yesterday. They offer visual training for athletes and people with brain impairment. I am going to get an EEG test there next week and then begin on some visual training to improve my eyes for driving conditions in conjunction with my VRT.
P.S. Had my second dizzy free day today (barring a little blip here and there) since the onset of my symptoms!
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Post by jessica on Jan 22, 2015 18:16:24 GMT -5
Jan. 22, 2015: It's been a rough week, beginning to ween down on my meds. I did however find a great acupuncturist not far from my place. The thing I like about Eastern Medicine is the time they take to get a full picture of your general health. Western docs could learn a lot from this. I have often felt rushed and belittled in doctor's offices, I never feel this way when I do Eastern therapies. Health evaluation is an experience in it of itself, that impacts the course of the patient's health. The worst symptoms currently are head ache and eye troubles. My eyes feel like I have been spun around a few times. That being said, The dizziness and fogginess have progressively settled down over the last months. Hoping my eyes will follow suit. Currently even a short walk outside is painful, disorienting, dizzy inducing and anxiety inducing...hoping to gradually build this up. The same is for foreign places, my eyes seem hostile to anything new. I've included a goal-focused template for anyone who is interested in building up their skills as they work through their dizziness: Health Goals Template.docx (13.62 KB)
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Post by Michael T on Jan 22, 2015 20:00:20 GMT -5
Great post Jessica, thanks for sharing the template.
Mike
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Post by jessica on Jan 23, 2015 10:58:33 GMT -5
Jan. 23, 2015. It's taken a while to wrap my head around all of this vestibular stuff. The truth is I had never heard of any of this until Oct. 2014 when all this began. I'm now realizing that my visual symptoms are pretty severe. I wasn't sure if this was just "part of it", but I can't even step outside without feeling completely dazed. There are only two rooms in the house that I feel visually "comfortable" in and they are on the ground level in the walk out basement. Being in public right now is so taxing it takes hours and/or days to recover. At first I pushed through, but now I'm thinking I should be more conservative in terms of pacing. I was able to watch TV for two weeks, but now it's more difficult again. My visual symptoms include: - Feel like I'm looking through binoculars
- Trouble watching simulated and real animation/movement
- Trouble watching TV and using the computer.
- Trouble conversing with someone for more than 10-15 minutes when I'm out
- The room swings as I walk
- My visual field bounces as I walk forward
- When I enter a new space the room looks hazy or blurred
- My eyes burn when I look around
- My nose, face and head start to burn and throb in a new space
- Things look surreal and warped.
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Post by jessica on Jan 25, 2015 16:46:24 GMT -5
Jan. 25, 2014. Feel like I had a stroke today, I mean this very literally. My eyes don't feel like they are are the same height, my brain feels like it is not processing visual information at the right speed, there is a strange pulling sensation inside my head on the right side. It's pretty scary. I find it disturbing that I still haven't seen one doctor who has come close to diagnosing or even beginning to treat this. They've told me to drink water, socialize and relax. Seriously, is that what my tax dollars are going to? Feeling annoyed with public medicine right now... I truly have no idea what to do when I feel like this. If I woke up like this on a previously normal day I would have ran to the ER thinking I needed immediate care. My eyes are really not doing well...it's strange that with my glasses I have 20/20 vision but the world looks so different...sometimes I feel almost blind. How does one describe this to a neurologist? "Hey Mr. Neurologist my eyes feel like they are at different heights and I feel like someone is tickling and scratching my brain". I'm pretty sure he would tell me that I need a psych evaluation. The sad thing is my eyes are my livelihood. Feeling worried!!!
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Post by eliuri on Jan 25, 2015 18:36:37 GMT -5
Sorry you're having such a hard time , Jessica.
Does that neurologist specializing in vision that you see have specific enough recommendations as to what to do for this? Does it match what the vestibular therapist suggests?
Or are they waiting for those tests before putting forth a plan?
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Post by kenseth20 on Jan 25, 2015 19:37:13 GMT -5
Jessica: what meds are you weaning yourself off of? Do you feel that you were better before starting PT ? When I started my third attempt at PT/VRT I feel way worse than I did before I went. I'm considering quitting. They all say it's in my neck and my eyes. When they mess with my neck, it sets me back several months. Before I started back to therapy, I was functioning better than I am today. It's F'd up. Jackie Woody
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Post by jessica on Jan 26, 2015 12:40:58 GMT -5
Hey Jackie, I'm going off of Lorazepam. I think my doc dropped my dosage too fast. So I've decided to do 1 1/2 pills a day rather than 1 as he suggested. Sometimes I get frustrated by my VRT. My PT has me doing head shaking movements every two ours pretty much...which doesn't feel great. That being said, I think VRT is the best bet at recovery. I would mention your concerns and listen to your body, you could try doing the activities for shorter periods, or with small modifications to prevent pain. I don't think it's uncommon for things to get worse before they get better...but that's a fine balance. Have you ever tried laser therapy? I do this on my neck weekly and it's done wonders for me. Here's a link on it. www.canadianchiropractor.ca/techniques/laser-therapy-a-guide-for-chiropractors-1001I'll admit it's a bit pricey, but eight weeks ago my neck was a mess and now I have full mobility back...I think it's the one treatment I've done that I've seen considerable results with.
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Post by jessica on Jan 26, 2015 12:48:27 GMT -5
Hi Eli, Haven't seen a neuro-ophthalmologist yet. My eye consultant said he may refer me at our next appointment. The problem is I think there are probably two in my province so I have no idea what the waiting list will be. I'm thinking months and that's being optimistic. I did find a woman who does vision therapy in my city but I hesitant to jump on board until I know a bit more about what's going on. Actually my eye specialist and PT didn't agree on if I should watch videos like these; www.youtube.com/watch?v=kAPtu1WTHYc. The eye specialist says no, the PT yes. Fun times.
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Post by jessica on Jan 27, 2015 11:54:14 GMT -5
Jan. 27, 2015. It's crazy with this how you can have one of your worst days and then the next day things are way more manageable. Perhaps it's just a matter of contrast. Yesterday I felt pretty good, watched a movie, got a massage, listened to my favourite music and drew. Quite relaxing. Today I am meeting with my physical therapist. Haven't seen her for three weeks. I've decided to be more organized in these sessions. It's hard because they only last 25 minutes...which always leads to a sense of being rushed. See the attached template: Physical Therapy Session Template.docx (40.91 KB) Hoping to set some reasonable goals and get a better plan in place for treating my visual issues.
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Post by jessica on Jan 29, 2015 11:12:19 GMT -5
Jan. 29. 2015. I realized yesterday that although I've been to my doctor a half a dozen times over the last 2 months, seen a neurologist and an ENT, my doctor is pretty much clueless about my symptoms and what I'm experiencing. He's thrown me in the "anxiety bin". As a professional in the training sector I'm absolutely disturbed by the lack of training general practitioners and ER professionals are getting on vestibular conditions. Furthermore, I had to be very assertive yesterday in my appointment in communicating the extent to which this has impacted my quality of life. I've realized there are a few key phrases or modes of communicating that seem to lead to a more responsive conversation. For example, when I simply say I am having vision issues with motion...I get little response, versus, when I say "I have been an avid runner my whole life and now everything in my visual field bounces when I run" I get immediate attention. Luckily I mentioned this and now my GP is looking into referral options to a neuro-opthamologist.
I will mention this symptom first to my neurologist and my ENT during my appointments on Monday as I'm realizing this is not common. It's like there is some code language you need to find for them to listen...I could write a bloody auto-ethnography study on this crap.
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