Feeling overwhelmed. Long post

Hi folks, This is a long one.

Since 2010 I've had several "rare" or "unusual, but not unheard of" health issues.

In April 2010 I woke up, sat up and the world went upside down. Aftr a trip to the ER and dozens of tests I was diagnosed with BPPV. Benign Paroxysmal Positional Vertigo. The treatment was the "Eppley Chair". Basically it turns you upside down and inside out to get the escaped "ear rocks" (otoliths) back where they belong. It was harrowing...but it seemed to work..mostly.

A few weeks later I was awakened with the worst ringing in the ears I've ever had...and it went down hill from there. I became so sensitive to sound I could not stand the sound of my own voice. After several failed drug trials... I got with an audiologist who treated HYPERACUSIS.

Eventually things settled down to where I had a "new normal". I had a life...a good one...just not able to tolerate a lot of noise or certain frequencies. Some folks get cured of it... but not me.

Fast forward. Saw a new doc in May... did some labs and she tells me I have Hashimoto's disease. Lucky me. Some of you have told me your Hashi stories and I appreciate the help. This doc also said my my ALT liver enzymes have stayed high. Maybe fatty liver...but she wants me to get HepC antibody test in a few months. And to get off gluten. Got off the gluten now for a month.

Also, Been seeing a new chiropractor (NO RACK AND CRACK) activator only... but seldom needed. Mostly exercises... Got a massage Friday and a chiro check up. No adjustment.

In the last week I started doing yoga again. Nothing weird.. downward dog, happy child etc.

Noticed a little dizziness..but it went away pretty quick.

Saturday had just come back from breakfast...nose was a little stuffy so I blew it and out came BRIGHT YELLOW watery stuff! I mean NEON yellow water. I thought... dang how did vitamin B get in my nose??

Didn't think much of it at the time because it eventually quit. Later I Binged/Googled "bright yellow" nasal discharge and it all lead to Cerebrospinal Fluid Leak. I almost lost my breakfast right there.

Apparently...a "spontaneous CSF leak" through one or both nostrils (or even the ears!!!) happens...sometimes it's clear...but not always. Anyway.. I spent the better part of yesterday...and today... searching all this out and I'm feeling really overwhelmed.

We're in a new area...Tampa. I don't know any really good docs. The current one is nice enough...but has a lot of her own health issues.

At anyrate... I do need to find someone really good here...pretty quick. I plan to call a neurosurgeon I know back in KC tomorrow.. he fixed a ruptured disc for me in 92 and the brain is his specialty too.

In the meantime... I feel like maybe some...if not all of this weirdness is connected somehow. I mean... how many different "rare and unusual" things does ONE person get in a few years??

Has anyone else out there dealt with hyperacusis/BPPV and maybe a CSF leak through the nose too??

Sorry about the ramble... I'm just really overwhelmed with it all.

thanks

cts

RV Lifestyle

covetsthesun
Explorer
Aug 04, 2013
Thanks folks. It has seemed that I barely catch my breath from one bizarre health crisis and another comes along to swamp my boat.

I know CFS leakage in the nose can be bad... meningitis is mentioned a lot. So, I'm not letting any grass grow. I'll be on the phone tomorrow to my old neurosurgeon's office...and to my new doc here. I don't intend to get blown off.

I read from one of the medical websites (Nat'l Inst of Medicine.. not the flaky ones) that proper diagnoses in an ER is ZERO percent for this. And apparently there was a lady in Arizona (March) who had been misdiagnosed for months before someone finally caught her CSF leak. They all thought it was allergies.

This is not the first time I've had to fight to get a correct diagnoses... but with no real medical home to rely on... that makes it scarier. I don't know...or trust...any docs here. I'm hoping the KC neurosurgeon can give me a trusted referral.

I am working on the "diary" of all the weird stuff and the dates. I forgot to mention that since 2005 I also have had something called brachioradial urticaria. It's ANOTHER "unusual" neurological thing. Some say it's an injury to the neck that causes an irritation of the brachial nerve in the wrist or top of the elbow/forearm. Itches like you would not believe. Being in the sun makes it worse... in fact it usually only shows up in July and August when the sun is strongest.

Since the leak in my nose... the itch has disappeared. So THAT makes me wonder if it too is connected to all the weirdness.

Last night...and today too.. I just sat quietly and prayed.. God please help me.

I'm sure many of you have felt that way too. I want you all to know that I so very much appreciate your support. It's a lifeline.

thanks
cts
robbiesgram
Explorer
Aug 04, 2013
Sorry, this is kind of long, DH has BPPV along with Menieres Disease, lots of ringing in the ears, dizziness, etc. He was lucky to find an ENT who specialized in ears, be sure to ask what their specialty is. The first ENT specialized in throats and sent us to the second ENT.

You are in FL, are you close to a university with a medical school attached to it? The best advise I can give is that if you are, find an ENT or Neuro that teaches there, take your diary, which should list all of your symptoms, dates of each occurance, what treatment you had and the name and contact information of every person who has treated you for your problems with you, also you should have a health history with you, which lists diagnoses, treatments, person with contact info for each diagnoses. Give the doc a copy, make a list of your questions, take it with you, take your spouse or a friend with you to help with writing down the answers to your questions, take all drugs, prescription and over the counter with you to your visit. We have done this for several years, as DH has multiple health issues and this is the only way we could remember everything.

You need to get to a doc, whether it is an ENT or Neuro, ASAP. Your current doc can/must/should refer you to the appropiate one, insist on this. Ask questions, if you don't get satisfactory answers, ask the doc what would he/she do if they had your symptoms. This type question makes them stop and think, instead of giving you their stock answer. You can always look for another doc, this is your health, you have to be your own advocate, the docs won't advocate for you. Keep looking until you find a doc you like and are comfortable with.

Good luck, I hope you find answers quickly.
mockturtle
Explorer II
Aug 04, 2013
I'm not neurologist but it would seem that leaking cerebrospinal fluid (CSF) is serious. For one thing, if fluid can leak out, pathogens could leak in. Another thing is that the pressure of the CSF needs to be intact for normal neurological function. These spontaneous leaks might even be causing your other 'rare' disorders. Please see a neurologist ASAP. Skip the yoga for now.
Janss
Explorer II
Aug 04, 2013
I had the same exact experience that you had with BPPV earlier this year. Woke up, world spinning and wouldn't stop, nausea, in the bathroom, etc. Called 911 because I also have a heart condition. Heart was fine. Diagnosed with BPPV in ER. Did Epley like you. Fixed it "mostly" like you. Still dizzy lying down, rolling in bed, bending to get into outside storage in RV. Just learned to live with it. After a couple months, I got a cold. Unbelievably, after the cold, the dizziness stopped! The stuffiness must have pushed those crystals around in my ear to their rightful place.

I have a friend who has the same hearing problem. Like you, she has learned to live a "new normal". She wears industrial strength ear muffs when in a crowded environment and such, and of course ear plugs all of the time in public. Have to talk softly with her and sudden noises really hurt. It's quite a mystery. She's being treated in Canada so not sure how that's going. Last I talked with her, they were just helping her adjust her lifestyle and giving her some exercises/behavior modification to try. She told me they are considering trying some kind of surgery, but I don't have any details. I know it's very hard to live with. Luckily, it's not life threatening. I have very sensitive hearing. Once heard a cricket in a trash can full of shredded paper in the another room in my house. But nothing as extreme as hyperacusis.

No experience with CSF, but sounds like that deserves a head scan.

Health problems can certainly be scary. But try not to jump to conclusions before you know the facts. That just adds more stress. I would think that yoga helps calm you down when feeling particularly stressed....like meditation.

I know all this doesn't really technically help you. But just knowing there are other people out there with similar problems hopefully gives you something good. There are many discussion forums online dealing with specific diseases, so you might try searching the internet.

Truly hope and pray you get the help you need.
emzee
Explorer
Aug 04, 2013
Oh cts, you have had your share alright!!! I am so glad you are on top of all this. I am sorry I can't be of any help but I can tell you to please make a diary of all those different symptoms. I agree with you, seems they all may have something to do with one another. I hope someone can come in here and add to your knowledge about all this.

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