Visual Vestibular Dysfunction?

[jem15]

Hi,

Visual-Vestibular Dysfunction has recently come up as a diagnosis of sorts, in relation to the lightheadedness/dizziness, and my doctors say it may or may not be related to the POTS. Either way, vision therapy, prism glasses, and vestibular rehabilitation seem to be the recommended therapies which may or may not work. Just curious if anyone has tried any of these therapies yet and what their experiences were? I just started so it's too soon for me to tell. And just curious how many POTS patients, are also finding this come up as a condition?

[bkweavers]

My daughter started vestibular rehab 4 weeks ago. It was recommended to try by her other physical therapist who thought that maybe her vestibular system was off. My daughter has POTS and has such bad dizziness that she's been basically down for 2 and 1/2 years.

So far, she's been improving quickly but we are pushing her much more than we were before this began. Her therapy has consisited of using a recumbent bike, walking with the help of a gait machine and she just started using a walker. At home, the therapist has encouraged us to get her walking with one hand, sitting up for longer amounts of time, standing in a corner with a high back chair in front of her, and standing in the pool.

I'm curious as to what you've been doing in vestibular rehab so far. I've never heard of visual-vestibular dysfunction. What is your dizziness like or how would you describe it?

Brenda

[jem15]

Hi Brenda,

Thanks for your reply. I'm interested to exchange experiences. My symptoms started at 16, and have gotten progressively worse each year, I'm now 31 and was just diagnosed! So I'm glad they caught your daughter still in the teen years and that she seems to be responding to therapy. Though I'm not well enough to work or drive anymore (but i think the cancer/chemo made it unbearable, before that, i was barely hangin on, but still able to push it, just had to keep modifying my activities and doing less/less) , I can physically walk, I just do so feeling dizzy/faint. And I just have a really low tolerance for activity, so I can't hold out for that long and I feel off balance. My lightheadedness is a constant feeling of floatey-ness and imbalance, kind of like youre on a ship, but all the time. A very uncomfortable topsy turvy type feeling, sometimes with a sort of pressure in the head. Ha, hard to describe, but that never has gone away, it's there all the time, and some days it's just even worse than others. The "dizziness" comes and goes randomly, which I describe as more of a true spinning feeling, or when I feel like I'm falling quickly, that usually last for a couple seconds, and then I feel really weird and more lightheaded after. Occasionally, I'll get stuck in that spin or fall, but that's not that often.

Many things make the symptoms worse in addition to the usual POTS triggers of heat, menstruation, over activity, exercise..etc... Vestibular triggers are like elevators, sloping ground, pools, cars/buses, treadmills (when it stops a true vertigo spin will happen), swings, basically anything with movement, even turning my head back and forth makes it's worse now and i kind of feel like I'm often almost falling alot, though I usually dont', it just feels like you turned yourself upside and back again, but you might have done nothing more than turn around. Visual triggers are like anything moving on movie/tv screens, busy shopping centers where a crowd walks towards you or if there are alot of items to scan on shelves, computer scrolling, and for me, it kind of takes so much effort to focus my eyes when dizzy, it's often just keeping my eyes open to look at or read anything. Some of the lightheadedness around my eyes will get better if I close my eyes. A person with just vestibular issues, might do worse closing their eyes, with me, since both systems are messed up, sometimes it helps me, and I often would find myself closing my eyes during different tasks.

As for therapy, I started with vestibular rehabilitation for about a month, but that therapist noticed I also had visual issues from doing the SOT(sensory organization test-you can google it). Did your daughter have one yet?? That's what led to all my vis/vest discoveries. I scored extremely/unusually poor, zero in both categories. The exercises the vestib. therapist did (and you want to find a "certified vestibular therapist" if you dont have one already- some people say they do it, but give wrong info, that happened to me first) ... since my symptoms were so severe, she started with alot of vision type exercises, things like....

-looking at a letter on the wall, keeping my eyes fixed on it and moving my head side to side, up/down

-looking from point A to point B , with just eyes, side to side,up/down

-following a pen side to side, etc, with eyes and head

Sometimes, she'd have me stand between the therapy bars and walk back and forth with eyes closed, or with eyes open and shaking my head side to side, while looking at a spot, stuff like that.. If you progress well, she said they do stuff with having you bounce on therapy balls, and go on the treadmill, etc...

But she never was able to do more with me since my symptoms were so severe and said she feels my vision issues were getting in the way and preventing me from progressing with the vestibular stuff, and that i should do vision therapy first. at some point i may have to go back to vestib. rehab. So then, i was referred to a Neuro-optometrist, who further diagnosed some vision issues (nothing an ophthalmologist would know about, my actual vision is fine, 20/20) the problem with people with vision/vestib dysfunction is in the way the brain processes the input from those systems, not necessarily a problem with the structures themselves. In a way, it kind of makes sense to me that if you have dysautonomia and wacky wiring, that this can also happen. it's all weird neurological stuff.

Anyway, so I just went to vision therapy for a month so far, and am in the process of updating the program. So far that includes a variety of computer programs, wearing special glasses and performing tasks, different muscle exercises, etc...I saw another neuro-optometrist specializing in vis/vestib. stuff, and he feels in addition to the regular vision therapy, to also use special prism glasses, to try and help. there's also traditional vision therapy that focuses on your central system, and then stuff for the peripheral system. This dr feels that focusing on the peripheral system first is key to vestibular problems, where vision is involved. Soo.. I'm not sure if I'll respond or not, but hope I can "re-train" my brain after 15yrs of being ill. That's the theory behind both vision and vestibular therapies. To start re-training the brain to react appropriately to stuff , so that it eventually becomes unconscious, and naturally does what it's supposed to, without the symptoms... My vision therapy is being done by an occupational therapist, instead of the optometrist, just since I have both issues, it was a better fit, and the therapist I go to works with alot of vis/vestib patients... usually optometrists do vision therapy, but it's expensive, and not all of them know about vis/vestib problems.

Ok, sorry if that was too long, but I wanted to share my experiences thus far in case it's helpful. I"d see if the vestib therapist, can do an SOT test if she hasnt already, and if you/they feel there may be a vision component, check the neuro-optometrist association to get referrals for drs in your area.

Also, the therapy you mentioned your daughter was doing, ie the bike, pool, etc.. was that the vestib therapist's recommendation or the regular PT, I know it might be the same person.. but just curious.. they havent given me an "exercise program" yet. I've just been doing the recumbent bike on my own. as well as home strength training, different exercises with leg weights, and free weights for upper body. But I know legs/abdomen is good to focus on for POTS. I've been exercising consistently for over a year (since my chemo ended, that's what really hurt my functioning) and still see no improvement. I've even been doing worse the past couple months. the exercise doesnt seem to get easier, and i dont seem to feel better from it. But.. i keep trying... hoping one day something finally works!

And one last question, has your daughter found any meds to work? I never responded well to beta blockers, right now they decided to try me on Mestinon for the POTS. I'm tolerating it, usually I don't do well with meds, but I'm on a low dosage. no worse, but no different yet... For vestibular/dizziness issues, doctors tend to like things like Valium or Ativan, some try Meclizine, but none of that has worked for me... if your daughter hasnt tried those, it's something to look into if she's stuck in dizzy spells... some patients apparently respond to them.

Best of luck to you guys, and if you have any further questions, let me know,

Tara

[bkweavers]

Thanks for replying so quickly!

My daughter doesn't have the visual issues that you're talking about. She describes her dizziness as "she is spinning around clockwise." She hasn't ever complained of some of the visual problems that you've experienced.

The vestibular rehab therapist has recommended Liz standing in a corner with a chair in front of her, sitting up in a chair, walking with help and/or a walker. Her old physical therapist before this was having her do strengthening exercies for arms, legs, and abdomen but also was doing exercies to help her proprerceptors(sp?). She had her crawl, roll, do crunches, anything to help retrain her brain what it feels like to be upright. The new doctor she's been seeing said that we need to retrain her brain to be upright again. Liz does exercises 4 times a week or so and swims in our pool or stands up in it. So, I guess she's doing a number of different things right now. It sounds like you're doing a good amount of exercise but did they ever recommend physical therapy as well?

Liz became ill when she was 1 month shy of her 11th birthday. She is now 14 and we've tried so many medications, it would take me an hour to mention all of them. Currently, she's on Pindolol, Alprazolam for headaches, and synthroid for her congenital hypothyroidism. (She's been on the synthroid since birth and has no thyroid gland.) She just went off of Mestinon after trying it twice and she's been on Ativan before with no results. We've never tried Meclizine though. The new doctor doesn't want to try anything new right now since he says with the history of all the meds tried, it wouldn't be worth it. He says she's one of those people who don't respond to meds. He did talk to my husband and I about putting a port in Liz for extra fluids to help the dizziness. Not sure what we're going to do about that yet.

Good luck to you and God bless!

Brenda

[heathmcev]

Hi Tara,

I'm resurrecting your post because I'm going through something very similar... your description could be about me! I was just doing a search for vertigo and found all of this very helpful. I've been dizzy almost constantly (to varying degrees) since early July. Tried going on & off florinef & mestinon without seeing any effect on the dizziness. Then a month ago today I was in the hospital for my first full-on episode of severe vertigo (major spinning!). The recovery with the standard at-home PT (Brandt-Daroff exercises) helped a bit but didn't take and my second episode hit last weekend. That one wasn't spinning, but more like being on a rocking boat. I was holding onto the walls to keep my balance. The last week I've been dizzy everyday, and today the vertigo/rocking boat feeling has returned. Needless to day I am sick of this.

I've been to my POTS neurologist who said he has other POTS patients with a lot of daily dizziness that's unrespnsive to meds, and hasn't found a cause or solution. He said he sent one of them to Vandy and they didn't know what to do with him either - and that I may just have to learn how to live with it (something we POTSies hear way too much, right? grrrrr...). My ENT was more helpful. He thinks all of the dizziness and motion sickness/nausea are connected to migraines with a "multifractional vertigo component". He's sending me for balance system testing (ENG, VEMP & ECOG), to a vestibular physical therapist (I'm going to someone at a hospital, so i hope that means they're a certified vest PT, as you meantioned. i'll ask)... and finally to a neurologist to address the migraines properly. I'm also going to my eye doctor this week and will ask him about a referral to a neurological opthamologist - that was a very helpful suggestion. I'm just getting started with all of this and don't have a definitive dx yet.

Have any of your doctors mentioned a migraine component in your case? I do have painful migraines every now & then, but apparently the dizziness and nausea/motion sickness may be migraines as well - just wthout pain. Now that it's been a few months, how are your symptoms? Have they subsided at all? I really hope so! Please let me know how you're doing. Also - was it a neurologist who got this treatment plan going for you? Did he have specific knowledge of POTS or was he just a regular neuro?

Hope you're feeling well and everything you're trying is paying off...

best,

dzzyde

[jem15]

Hi dizzyde,

Glad my post could be of some help. And it's helpful to me to hear your post as well, I always like to know what others are doing/finding with similar symptoms.

(Oh and first, before I forget, it's a neuro-optometrist that I had seen, as opposed to neuro-ophthalmologist... the first is the one that deals more with vision therapy and functional problems eventhough your eyes themselves may be "healthy" and eyesight fine... that's the one that picked up my vision issues, not the opthalmologist, who would deal more with conditions, diseases, etc.. that affect the eye)

So to answer some of your questions/comments...(and sorry this is long, but ha you dont have to read it all if you dont want, but in case youre interested..i know i would want to know everything if it was me;-) so i'd figure i'd share)

I also have not responded to Mestinon yet either, still trying to increase it though for now. And always responded poorly to betablockers.. not sure what they'll try next. I've had some true spinning vertigo, occasionally lasting for hours, but that's more rare for me, it's usually the constant lightheadedness boat feeling, and dizzy imbalanced feeling. Before the POTS diagnosis, "vestibular migraines" were mentioned to me as a possible diagnosis. It didnt explain the other POTS symptoms of faintness, fatigue, heat intolerance, etc... or why my symptoms get progressively worse each year... but the doctor thought possibly it could all be migraine related, and yes, you can get the symptoms without headaches. They tried me on Topomax, but it didnt do much, and it was hard to tolerate, and they kept just wanting to increase it, but it's a strong drug and I wouldnt have been able to go up that high. I get headaches in phases too, when I get them they can be daily or every other day, and then they kinda fade away. So yea, there could be some sort of migraine component, cause i sometimes get occular migraines too... but i dont think that's what's causing my day to day constant lightheadedness. i thought maybe it was possible in the beginning, pre-diagnosis of POTS, etc.. but now I dont think that's all that's going on.. cause that would mean i've had a migraine 24/7 for 15years now... my symptoms are too constant... perhaps, some of the occasional spinning vertigo or increased dizziness is from that.. sometimes around headaches, it worsens. but i havent ever responded to any meds for headaches either..so it's hard to tell how much of a part it plays... ha, so who knows... so yeah.. it's a theory I've heard... and for some people, depending on their symptoms, may explain everything... if the dizziness is a new thing for you, and/or on and off thing.. it's possible.. for me though, it seems like a lot of interelated overlapping things... and i still wonder if it's the dysautonomia just causing all of it..

As for how I'm feeling, still pretty bad, if not worse, i keep getting sick for some reason and it seems to be aggravating my POTS symptoms, I also had bad vertigo for hours with it, and since then things have been rough. I had to stop the vision therapy over the summer due to insurance, and just started up again for about a month. 1wk only this time, and with a different focus in therapy, and no response yet.. so this week they're gonna change things up again, and add more vestibular stuff to the program,though not vestib therapy by a PT yet.. i may have to go back to that at some point. but right now, we're trying to deal with it, in relation to the vision stuff first.

Also to answer how i got started with all this... i was the one who initially asked my "regular neuro" to send me to vestib rehab. this was before the POTS diagnosis. so at that point, we still had no idea what was going on with my and i was undiagnosed for 15yrs. it was there at vestib therapy, that they did the SOT test which showed the vis/vestib problems. the 1st "development" in my case and then it was the vestib therapist who suggested the neuro optometrist. it was him who recommended the vision therapy, and to be done by an OT, cause he considers the vis/vestib thing a kind of sensory integration/processing disorder and since some OTs have sensory background, he thought they'd be better working with the vestib stuff. The center i go to has some patients with vis/vestib issues that they treat with vision therapy there, so it just worked out that i had that kind of place nearby.

After discovering the vis/vestib dysfunction, i then happened to be diagnosed with POTS by a neurologist whose specialty happens to be sleep disorders, which is why i initially went to him, to see if it was anything with my sleep causing my symptoms. But he also has neurophysiology background, so i think that's why he happened to pick up on it. He doesn't have anything to do with the vis/vestib stuff though. i just asked him about it, if the POTS causes it, and he said it may or may not be related, or part of it may be related, they just don't know. In relation to the POTS, when I went for 2nd opinion/testing, it was also a neurophysiologist at Columbia who knew about the POTS, so I've had the most luck with that kinda specialty hearing of POTS. I think it's a subspecialty of neurology though not exactly sure. I did just try a new local neuro, in hopes that he'd work with the POTS guys so i dont have to always travel, and he happens to know the POTS guy at Columbia.. apparently this local dr did his fellowship in neurophysiology there... ha, so if you find anyone that has "neurophysiology" listed, maybe youll have some luck there??

And it's funny you mention the ENT.. i'm actually goin to see one tomorrow who's supposed to specialize in dizziness/vestibular stuff, "neuro otology" ... so since the "neuro" prefix has helped before with the POTS and the optometrists, hoping it'll help here. i just want to see if he has any insight on things, what his perspective is.. if there's anything he can treat or any causes he determines. i did have an ENG done few yrs ago.. it came up a a little bit off in my right ear which i just learned recently.. the first dr told me it was totally normal. so i'll see where this dr weighs in tomorrow. i didnt have any VEMP/ECOG yet. I'll let you know if this dr has any interesting thoughts to add.

And one last thing.... at therapy, i'm learning more about how the vis/vestib stuff relates to sensory issues.. my experience with sensory issues is when i worked with kids with autism. many had sensory dysfunction and i used to joke that sometimes i feel like the kids. well apparently there's truth to that.. not only did the first neuro-opt. mention it. but the other day, during retesting on the SOT machine, i was getting more dizzy between trials.. and still felt the floor moving... the therapist pressed on my shoulders, giving compressions, something i'd do with the kids w/ autism... and i laughed... but it actually kinda helped a little, to reground me. and after he put a weighted vest on me.. something else we used with the kids... well it was hilarious, but when i walked across the gym, dont know if it was coincedence, but i was a little less lightheaded/floatey.. i felt the ground more firm/flat.. not like walking on clouds like usual... this fascinated me... especially with my teaching background.. .and some i contacted some of the agencies i used to work with, and had them find a "sensory OT" for me to talk to.. i'm gonna call one on Tues... to see if there's any things they can suggest to help. i might get myself a weighted vest, and see if that helps when walking.... it does make sense though... 3 systems control your balance... vestib.. vision.. and somatosensory, which is your sense of touch/proprioception... and my first two arent working.. .so i'm relying on my touch to figure out where i am in space.. and now it makes sense why i hold onto walls when i walk or why i stamp my feet when i come off an elevator or feel really floatey.. .i'm trying to give myself that input/grounding... and the vest i guess did it more... and it was weird.. i never feel a difference with anything.. but with the vest i did that day.....

so anyway, just thought i'd throw that out there too, not sure if you have a sensory background, so ha maybe my babble didnt make sense, and not saying that's even what's going on with you... but with me... it's a very intriguing part to what's going on.. again, not everything.. but it's related... and again... sensory issues... the theory is that it's a wacky neuro system to blame... so it just makes me wonder if this is all dysautonomia/POTS related and drs havent figured it out yet. they all work separately... i'm trying my damndest to get them to talk, but if they wont' , ha, i'm trying to piece it all together. even if i address each separately,.. meds, etc for POTS, vision/vestib/sensory therapy for the other stuff... maybe it'll work??? ha , probably not, but still hoping, gotta try... i'm 31 and have no one else to help/support me.. .so gotta get better somehow, we'll see....

Good luck to you and let me know how you make out!

[sue1234]

What is the reason for putting a weighted vest on? As I read what you wrote, and knowing the different "theories" we've talked about regarding POTS over the years, my first thought was the vest was offering "decompression" at the level of the upper cervical area. This would point to all the issues some on here have with cervical issues and wondering about compression on either upper cervical spinal nerves or lower brain 'crowding'(?). Have you ever had your cervical area looked at with an MRI

[heathmcev]

Whoa. This is all overwhelming! lol. Thank you so much caterpilly for your reply. You're a wealth of info and have clearly done your homework - having dealt with the dizziness a lot longer than I have. I feel like I need to digest it all since this is all so new to me. At least we're both actively seeking answers, as I'm sure others are with this weird vestibular thing. It's a little disheartening that my POTS specialist/neurologist doesn't see the connection between the vestibular stuff and POTS... or the cervical problems as well, for that matter. There just has to be a connection. I too have all of the neck issues that so many people write about on here... and those trigger points on my shoulders are always tight. Are they the same points that the weighted vest hits?

I'm going to see if my ENT will add the SOT to the script for the other tests I'm having this month. Also going to bring up the weighted best at my PT tomorrow (it'll be my first session, so I'll post what they do with me).

*Really* appreciate your help caterpilly! Would love to pm with you as we go to our various dr appointments so we can compare notes & recommendations...

[jem15]

Hmm..interesting, I'm not familiar with the cervical issues/topics. I don't think I have any cervical problems myself, ha , but who knows. I think I had a cervical mri done years ago... So I'm not sure how or if the vest relates to that. I'm only familiar with it's use for people with sensory issues. But you never know, the same treatments work for different conditions sometimes, maybe a PT would know better?

[houswoea]

Interesting! I have often felt like I could make good use of a lead blanket too!

[bkweavers]

My daughter wore a weighted vest while in vestibular rehab this summer and the therapist would also put leg weights on her from time to time. He told me it was to help her propriaceptors(sp?), what helps a person feel their body in space. Her body had been down for so long that she needed to "feel" what it was like to be standing up or walking. It also made her work harder!

Dizzyde- my daughter's prior physical therapists recommended vestibular rehab because they believed her vestibular was off due to her lying down for 2 and 1/2 years. Originally, when she became ill, we had vestibular testing done and it came back that she was fine. Now, when she had been down for so long, the rehab has really been successful! Those therapists were right and I think doctors need to be more open-minded about it.

I give our physical therapists a large amount of credit for helping my daughter to get better. We've been very blessed to have therapists who think outside the box since there isn't a whole lot of research out there on therapy and POTS. We're also very thankful that the vestibular therapist chose to take our daughter on, even though she was a challenging case.

I hope all of you can find the help you need as well.

Brenda