Jump to content

Some questions for newly diagnosed


Recommended Posts

Hey everyone,

I was finally diagnosed with dyautonomia yesterday! Im excited after 14 years of struggling and docs calling me crazy but i didnt give up and i finally got an answer. I still have a couple tests to do to pinpoint which kind inparticular.

I just had some questions.

First, i have really bad brain fog and my eyes are really effected. My dizziness has increased. I have poor balance which is not only from dyautonomia but from severe scoliosis too. When i walk it feels like everything is rocking back and forth and it makes me unsteady and dizzy. This is a constant all day everyday feeling as opposed to vertigo that hits suddenly and makes things spin though occasionall i have gotten that too. Does anyone else experience this rocking sensation?

Its also like my brain has trouble processing certain info through my eyes. For instance i cant walk on pattern carpet cuz the pattern moves and shifts. This also happens on floors with light reflection or with heavy shadows. The light and shadow shift and colors and patterns shift when im walking. Stores and libraries are especially hard because walking down the aisle i just see all the product, colors and words on the shelves out of my periphereal and it about takes me down. If im browsing through a shelf of books or product everything is moving and shifting as i try to read. Anyone experience this?

 

Lastly for now, my digestion is highly effected. Nausea and indigestion are daily and i never thirst or have an appetite. I have to time my water and food cuz otherwise i wouldnt know to eat. Anyone have any tips on handling digestion with this? Im underweight and my symptoms get worse when im underweight. 

Thanks guys!

Link to post
Share on other sites

I have that same rocking sensation.  I genuinely feel like I'm off balance, however I have tested myself by standing with my eyes closed and I don't follow over lol so it must be more of a perception thing.  I've also passed the neuro tests.  Mine feels more like I'm on a boat but I definitely thinks it's ear or eye related.  And I feel the same way with patterns.  I can't handle patterned carpet or tile floor.  Even striped shirts bother me.  If you get an answer on why this is please share!  Stores bother me too, but I attribute that to the fluorescent lights and insane amount of stimuli which I struggle to process.  I'm actually planning on running to Walgreens tonight for a few things and my anxiety is already taking over.  The whole ordeal is so draining.  I can't stand in line so I have to go late when it's less crowded.

Link to post
Share on other sites

My sister ( who also has POTS ) has a condition called heterophoria, which means ONE eye points up, down, right or left instead of straight ahead. In other words: cross-eyed in one eye. Her brain does not process the information from her eye correctly and she constantly strains to see, cannot see patterns or many colors without getting overstimulated etc. She had this all of her life but just recently was diagnosed with it. She also cannot drive at night b/c of the lights. 

https://medical-dictionary.thefreedictionary.com/heterophoria

Link to post
Share on other sites

I had the problem with patterns for several years and still get really dizzy in moving vehicles at greater than 35mpg. I also sway quite a lot if I stand still for any length of time. It has nothing to do with my eyes/ears, that’s all been extensively checked. I even had a brain MRI. One neurologist thinks it’s a pain free migraine and suggested topomax which I couldn’t tolerate. What has helped is 4 years of physical therapy for general strength and especially for proprioreception in the ankles/feet. Treating my underlying autoimmune disease has helps and I rarely stand still, I always move/walk. Fluid load helps somewhat but not the car issue. 

Link to post
Share on other sites

@RobinB my neurologist orders it and I was seeing a physical therapist. I see her virtually now for tweaks. It’s helped quite a bit except for mornings or if I am upright too long. I can now do things that were impossible at first but it’s taken a long, long time. You have to never stop.

Link to post
Share on other sites

I have a lot of the same symptoms you do.  Mainly brain fog/lightheadedness and I also have the visual problems.  A few years ago, I went to a neuro-ophthalmologist who diagnosed me with visual vertigo (also know as shopping cart syndrome).  Basically, it's a disconnect between the eyes and brain and causes dizziness/lightheadedness when in certain complex environments (such as the grocery store).   Unfortunately, there's no cure and the drug he prescribed to me didn't work (Diamox), so I have to live with it.

I also have spinal problems - cervical myelopathy that causes imbalance, unsteady gait, numbness, etc.  My spine surgeon tells me that my autonomic problems are not being caused by my spinal compression, but I'm not sure I necessarily believe that's correct as I've read a few places that cervical stenosis can cause autonomic issues.  According to my spinal surgeon, I need surgery, but I'm putting that off as long as possible.

So, like you, I've got different problems and different doctors telling me different things.  I don't have POTS, but do have issues with my heart rate going from bradycardia to tachycardia upon standing.  I have an abnormally low heart rate upon resting (45-50) which jumps into the low 100's upon standing - and then drops back down within a few minutes.  There are no autonomic specialists near me and the one I was going to travel to isn't see anyone during the pandemic, so no real answers yet.  My cardiologist is pretty worthless when it comes to these issues.

 

 

Link to post
Share on other sites

My eyes are a big big problem. I feel I'm constantly on a boat! I can't seem to focus on anything and if I do I feel like I'm swaying very fast. So looking at my phone, talking to people (making eye contact) I'm struggling with. The lights in the supermarket are terrible also

Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...