[Mother of Dragons]

Hey everyone,

I just got back from my last session of vestibular therapy. My therapist checked my eyes out and said that my VOR cancellation was good (my eyes and head are moving well together) and that I no longer need to go to therapy! YAY! But...

I am still constantly dizzy. Always rocking or swaying and it has been a lot worse the past month. So I asked her what it could be. She mentioned neck issues (my neck is suuper tight still), sinus issues (cold, dry air got my nose all stuffed), possibility for vestibular migraines, and this new disorder I had never heard of...Chronic Subjective Dizziness.

I looked it up and it basically seems like a condition that follows an acute vestibular disorder (like from a head injury), and even when that injury is healed, the brain still think its dizzy. One link described it as like PTSD for the brain, the neurological connection is somehow still compromised and being super sensitive to motion. We're fine lying down or sitting, but standing and walking around bring on symptoms. Through studies, researchers have shown that anxiety is a big factor in this disorder, which is also called Persistent Postural-Perceptual Dizziness.

I am going to see a neurologist soon who is aware of this disorder (not many are it is still very new), and hopefully he can treat it. Treatments so far have been with SSRI's to a degree of success. In clinical trials, primary symptoms were reduced by at least half in 60%-70% of patients to entered the trials and 80% of patients who completed at least 8-12 weeks of treatment.

Anyway, I hadn't seen anything on this disorder so I figured I'd share and see if anyone else has heard of it or been diagnosed with it. I can post a link to the Vestibular Disorders Association webpage which describes it much better than I can.

Persistent Postural-Perceptual Dizziness | Vestibular Disorders Association

[Mark in Idaho]

It sounds like a persistent version of dry land sea legs. There are a few names for it. It is common when somebody has been on a boat or ship that moves and the brain/vestibular system has developed an accommodation for the movement. Then, when you get on dry land, you feel like the land is moving.

I experienced it once for maybe 5 or 6 hours after spending about 40 hours on a sailboat. It was a strange sensation.

[Mark in Idaho]

This sounds interesting.

What to Do When Your Brain Insists You’re Always on a Boat

[Bud]

Interesting!

[RidingRollerCoaster]

Thanks for posting. I did vestibular therapy on and off the last 2 years and the benefits started to taper off. My vest. therapist said the same thing to me.... that my remaining dizzy / off-balance feeling is probably a combo. of CSD / PPPD and neck issues.

I am going to try some other things before going on an SSRI just because I don't like being on medication. Going to try some vision therapy along with fixing my posture and trying to find someone that can give me an actual diagnoses for what is wrong with my neck (have seen chiros. and PTs, but none that have actually given a definitive diagnoses).

I should also mention that about a month ago I changed my diet to no gluten, no dairy, low carb (except for non-starch vegetables), and larger amounts of protein and healthy fats. Since then I have felt a significant change in my energy and dizziness for the better. It is not gone, but definitely better. I am going to stay at it for a while and see if it keeps going like this.

I am interested to hear about your neurologist and how treatment for you goes, neurologists I've seen so far have not been helpful - so keep it posted if you can. Thanks. When I read your signature and posts, it's amazing how similar our problems are.

[Mother of Dragons]

RR,

I hope one of us solves this mystery and can share because we definitely share similar symptoms.

I am not too certain the neuro will be able to help me, CSD seems more psychological than physiological and I know my dizziness is physiological. Regardless I am going to see them just to make sure and to check it off my list if necessary.

I have been doing at home vision therapy and while I've seen improvements in the exercises themselves, I have not noticed any difference in my daily life. I see the doctor Friday and will discuss this.

I did a similar diet to yours and agree it really helped clear my brain fog and upped my energy levels. I fell off it the past week because I was stressed and felt considerably worse so it definitely works for me. Didn't help with dizziness though.

I am 99% sure my neck is causing most of my remaining symptoms, the trouble like you said is finding the right practitioner to help us. I believe the issue at least for me is really tight muscles and nodules around my upper cervical spine, which is compressing on my nerves. I'm giving PT another go and going to get trigger point injections. Hoping all that helps.

[RidingRollerCoaster]

MOD

The way my vest. therapist explained CSD/PPPD to me is that there is still a physiological reason for the dizziness because your brain has learned a conditioned response to any stimulus to always be dizzy and it is somewhat based in an anxiety-like response. (or something like that) I know it is confusing, but she specifically told me that the diagnosis does not mean that it is psychological or that it is just all anxiety.

Anyways, the search goes on... I have a couple questions for you... Are you able to work? If so, what do you do and how much? I have a hard time trying to balance the search for things that could help me with trying to "move on with my life". Have any tips?

I have been seeing a PT that is highly skilled in fixing posture with methods such as Feldenkraus. It has helped my neck problems a bit and eased some of the muscle tension. I always had bad posture, so I know that was part of the problem. I may try dry needling as well.

[Mother of Dragons]

RR,

I am in school part time and doing well with it. I work one day a week for four hours at an office doing administrative work. I'm also starting to do more volunteer work on the weekends and am hoping to get an internship over the summer in my field. I'm finding a balance between living and still going to appointments but sometimes the scale tips in either direction. I think with my symptoms specifically the dizziness it's just better for me to ignore it at times and just do things throughout the day. If I'm sitting a lot of the day I just focus on the dizziness and think it's worse than it is. Doing activities takes my mind off it. Of course I know when I really need to rest but I was so scared for so long to do anything for fear of setbacks. I'm not anymore. I know that if I need to rest I'll just rest and I don't have to attach a horrible story to it. I'll be fine by the next day or two. We just have to live life the best we can and try not to let our symptoms control us. At least that it what I have realized in the past few months and it seems to be working!