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My symptoms and who I have seen. Please provide your thoughts


#1

just have no idea what it is that is causing all of this

Symptoms:

Water/red eyes in the morning. Feels like infection/pink eye but it isn’t, and it’s every morning
-headaches every two days always in the same spot (feels like it’s deep within the ear)

  • constant off balance feeling
  • a sense of movement in the car even when it has stopped
  • had BPPV at the onset of this the spinning sensation has since resolved
  • feel like the room is bouncy or not steady
  • feel dizzy when looking down and then look up
  • computers and scrolling cell phone makes it worse
  • sometimes when I am looking down for long periods of time, I get a rush of vertigo
  • When a headache is coming on, I feel leg/muscle weakness and shaky
  • pre-existing anxiety condition from my teenage years and panic attacks and constant anxiety have resumed.
    -11 months post-partum with second child and self-employed
  • Have been under tremendous stress proceeding this - do not talk to my mother, stressful job with long hours at computer, etc. also have a four-year old.
  • Have visual snow at night when I wake up
  • Halos around street signs but eye sight is 20/20
  • tinnitus stronger in the morning

Feel depressed and have thoughts of hopelessness.
Doctors I have seen:

ENT - Hearing test normal - negative for Manieres, positive for BPPV. ENT says to do habituation exercises referred to Neuro-muscular dentist because of "poor jaw alignment."
NEUROLOGIST - BPPV with a component of a migraine associated vertigo
NATUROPATH - SCM Trigger Point not even oxygen or blood flow going to the brain.
NEURO-MUSCULAR DENTIST - Clenching teeth evident with a strongly misaligned jaw bone.

FAMILY PHYSICIAN: Had BPPV but now I have Chronic Subjective Dizziness (possible some migraine) but history of anxiety triggering dizziness/depersonalization symptoms.

Any thoughts?


#2

So it seems you don’t have much confidence in these diagnoses?

I have to say I don’t have much confidence in ENT medicine. In my experience its all a bit ‘nebulous’ and full of hypothetical possibilities but very little is truly concrete and that’s largely because they simply can’t ‘lift up the bonnet and see whats inside’ as the inner ear and other organs are set deep inside the bone of the skull and given its a fluid filled system its very hard to visualise ‘flow’ and ‘pressure’ elements. It’s not possible to determine if there is a leak, for example, with a simple conservative scan. The most high resolution scans available are CT scans but are generally not done unless absolutely necessary because they subject you to radiation. It also concerns me there is evidence of trends and dogma: 50 years ago your symptoms might have been considered Menieres, 20 years ago due to a fistula and nowadays you might get a MAV diagnosis, but what does that tell you?

If you want to get a diagnosis you are more comfortable with then I suggest you get at least two more opinions from ENT experts completely out of the circle of the ones you’ve so far approached. It took me a year to find a diagnosis I was comfortable with because before that I was just told stuff that just didn’t ring true. I saw three ENT’s and one neurologist. Thankfully the neurologist prescribed medicine which made me feel better, though I was not satisfied with her diagnosis, but then again she was only being professional and going by current professional guidelines and they need to be very careful.

It seems to me you at least have some kind of ear trouble. These things usually resolve themselves over time but it can take a long time (like I’ve said, I’m getting better, and I’m much better but I’m still only 2 years in!). Conservative approach is generally the best idea: surgical solutions for ear medicine are usually destructive in nature and that’s not a good way to go imho as time will usually heal anyway and you don’t want to make things worse: let the body heal itself even if this takes time!

The thing you should focus on is trying to find a regime that will make you feel better. Diet’s help people with ear trouble very often (MAV, Secondary Hydrops (SEH) and Menieres patients are all recommended to avoid the 6C’s). Beyond diet is the possibility of using a medicine to reduce symptoms. I’d suggest talking to your neurologist about trying the MAV medicines. Amitriptyline is used to help MAV, fistula and SEH patients.

Hain’s article on drugs is really good:

http://www.dizziness-and-balance.com/treatment/drug/drugrx.html

Anything that reduces stress is also a very good idea: relaxation exercises, meditation & mindfulness and seeing a psychotherapist are also good options.

Make sure you understand health anxiety, worry about chronic symptoms can get out of control and you can end up very stressed and anxious. It’s important to find perspective. If you think this is a factor, consider reading this book:

(NB from admin: these images link to products members have found helpful and at the same time help fund the site: As an Amazon Associate I earn from qualifying purchases. Thanks for your support!)

“Overcoming Health Anxiety”
More recommended books here

A lot of board members follow a diet, but not all. A lot use medical prophylaxis, like me, and some have rescue medicines for migraines and to reduce the impact of acute vertigo.


#3

looking down could either be triggering neck vertigo or MAV as its probably disrupting muscle signals to your cerebellum…


#4

Thank you for responding. The very bazaar thing about my condition is that when I did the Epley, I had spun on the right side which subsided if I held that position for 1 minute. Then after a week or so of doing the Epley as suggested by the ER doctor, the spinning sensation stopped when doing the Epley, so I figured it was BPPV.

But I still felt positional vertigo at times when looking down, tilting my head to the side, or when reaching for my wallet in the car. It was bizarre because the spinning seemed to subside but then occurred randomly at times, too. The VR therapist suggested that because I had BPPV for so long, my brain got used to those distorted signals and therefore, I needed time to compensate through habituation exercises.

But one thing didn’t quite go along with the BPPV diagnosed which is why I kept questioning it. Positional vertigo didn’t come on in bed. It happened when on the phone or driving and it also came with migraines, heavy “cotton head,” confusion, sensitivity to sound, irritability, etc. I also had extremely watery and red eyes that I thought was pink eye but wasn’t.

When I finally went to the ENT, he said it was a bizarre case of BPPV but that the dizziness from tilting or looking down as such was a bout of labyrinthitis which can also trigger BPPV.

But the naturopath who did muscle testing said it wasn’t ear related and in fact was coming from the SCM muscles and trigger points. See, before all of this started I did have bronchitis which subsided, but after that, I spent copious amounts of time using a laptop in the most unfavorable position. Sometimes, when looking up from the laptop, I got a similar sensation compared to one hanging with their head upside down for hours. I also used my phone a lot looking down.

An extremely reputable medical intuitive I consulted said my problems were structural involving the SCM muscles, fascia and occiput.

If I have my phone in front of me and I am looking down, I get a rush of dizziness like an electric pulse or current of adrenaline rushing through me to my head.

On another note, one of the things about labyrinthitis and vestibular neuritis that doesn’t quite fit my diagnoses of that is I did not have any hearing loss whatsoever on both visits to ENT. He said my hearing was extraordinarily good. I also didn’t have any vomiting or nausea, and I didn’t have days on end when I was bedridden from the dizziness.

The SCM trigger point symptoms also suggest a symptom is feeling movement even after the car stops, which is what I am currently experiencing.


#5

The migraine can happen when senses go funny. The body is so acutely tuned for balance that if any of the signals go awry it can stress the brain out and lead it into a migraine … horrid.


#6

Please rule out thoracic Outlet syndrome and Subclavian steal syndrome . When you ask for a cervical x-ray please make sure that your doctor write the following "Rule out cervical rib or an elongated cervical C7 transverse process " because mine was misread years ago. I have bilateral thoracic outlet syndrome and is causing my dizziness . Good luck!

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