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Mystery Condition, Calling All Angels ...


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Old 06-28-2017, 10:06 AM   #1
Wendy792
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Question Mystery Condition, Calling All Angels ...

Nobody can tell me what is wrong with me, so I'm praying someone out there can point me in the right direction... I don't even know what to try next. Calling all angels...

Symptoms: I have the feeling of "swelling" or inflammation in my sinuses and ears, 24/7 for over 2 months now, which causes this awful feeling of "floating" and dizziness all the time. It's driving me crazy. I have a cough, like I have to clear my throat all the time or something is stuck in there. Mild headache. Fatigue. And lately my inner lips feel like they are a little swollen or inflamed, but it's not noticeable. And my left ear started hurting a little when I yawn or stretch. It's just getting worse every week.

Tests and Evaluations: There is no fluid in my ears, as I have had the adult tubes put in recently. There never was fluid, nor is there any now. Nor do I have any mucous in my sinuses. I do occasionally feel a post nasal drip. But not often.

MRI of inner ears, brain and sinuses came back normal. Hearing test was normal. Tympanogram was normal. Bloodwork is normal. Blood pressure is normal.

Diagnosis (or lack there of): My doctors and I have eliminated bacterial infections with two different types of antibiotics. We have eliminated a viral infection with anti-viral medication for 15 days. We have ruled out silent acid reflux with 14 days of Nexium. We have ruled out allergies, as there is mucous, sneezing or signs of any allergic reaction to anything. We have ruled out BPPV as my dizziness is constant and does not change with movement. We have ruled out Menieres Disease. No blood pressure issues. And we have ruled out tumors and things like that as my MRI was normal.

Medications and Methods: A high dose of step down Predisone (cortisone) takes away whatever this is... had 3 rounds of it and when I go off the 10 day dose, this condition comes right back. But I cannot stay on Predisone because it causes horrible side effects and long term damage to things. And I want to know what is causing this and not just mask the symptoms.

I have tried nasal steroids, large doses of Ibuprofen, decongestants, anti-histamines, anti-biotics, anti-virals, antacids, vitamins, methylpredisone, massage, chiropractic, accupunture, hot compresses, cold compresses, nasal strips, humidity to the air, I even quit drinking alcohol, rest, exercise and I never drank caffine... I don't know what else to try. Nothing works other than Prednisone.

Anyone have any clue what is causing this? Please!

Signed,

Desperate, Dizzy and Going Crazy

 
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quincy (06-28-2017)
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Old 06-28-2017, 10:19 AM   #2
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Re: Mystery Condition, Calling All Angels ...

Interesting as reading and each thought of possibility showed up in your next sentence. I must say I'm impressed with the comprehensive testing and med/therapy regimens you've tried.

Have you tried singulair?
The decongestants you tried....are you meaning sudafed?

Regarding the tubes...what were they for specifically?

Have you had genetic testing done?
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Last edited by quincy; 06-28-2017 at 10:19 AM.

 
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Old 06-28-2017, 11:23 AM   #3
Wendy792
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Re: Mystery Condition, Calling All Angels ...

Thank you, Quincy for your reply.

I have not tried Singular. I have tried pseudoephedrine (Sudafed), Claritin, Flonase, Guifenisen (Mucinex) and Robitussin.

The tubes are for Eustachian tube dysfunction (ETD), which was a result of whatever is causing this inflammation. ETD is when the tube between your sinuses and middle ear doesn't work properly. This tube regulates pressure between your middle ear and the outside. Like when you go on a plane and you need to "pop" your ears. When it doesn't work, you can't pop them. ETD causes dizziness and the feeling of being "off". I thought the ETD WAS the problem, but it's not. It was just caused by whatever is causing this inflammation.

And I have not had any genetic testing done. For what?

 
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Old 06-30-2017, 11:49 AM   #4
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Re: Mystery Condition, Calling All Angels ...

Hi Wendy....lost my reply last night and didn't have enough energy to redo it (stoopid tablet and my fingers).

Short version is that since you've had success with the pred and not when off, my thoughts are there's something possibly going on regarding your cortisol levels or adrenal functioning.

It is possible you were struck with a virus that hit your vestibular system but now left with an autoimmune reaction.

Have you had testing of your heart? Some vertigo can be associated with heart issues, but I don't want to venture from here to find out or I'll lose this reply again lol. I'll do so later today and get back.

No, you cant stay on the pred for obvious reasons.

Curious if you felt somewhat better when you were taking the sudafed?

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Old 07-11-2017, 06:52 AM   #5
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Re: Mystery Condition, Calling All Angels ...

Quincy,

I think you were on to something... just got back some more results of bloodwork and it turns out I have Hashimoto's... autoimmune disorder of the thyroid. Now, typically this condition has nothing to do with ears or vestibular functions... but it's common to have a secondary autoimmune disorder with Hashimotos... that's what I'm thinking is happening. My immune system is attacking my ears/vestibular system...

Oh, the joys of getting older...

And no, no affect on the Sudafed.

 
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Old 07-11-2017, 09:51 AM   #6
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Re: Mystery Condition, Calling All Angels ...

Hi....wow. i didn't venture into thyroid, but it is a hormone central. I'm hoping once you're on meds that your vertigo will show imorovement. That would be amazing for you!

Yes....autoimmune loves to party together. The gift that keeps on giving, which sucks bigtime.

Have you started meds as of yet? And are you seeing an endocrinologist?

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Last edited by quincy; 07-11-2017 at 09:52 AM.

 
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Old 07-11-2017, 12:05 PM   #7
Wendy792
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Smile Re: Mystery Condition, Calling All Angels ...

Qunicy,

Haha! The "gift that keeps on giving"... funny. The idea that my immune system has gone rogue is very disturbing... like why? I was perfectly healthy 3 months ago. And the internet has such conflicting information about it, it's scary. And yes I hope that fixing the thyroid alone will be my magical cure for all my symptoms... especially the vertigo. Ugh! I'm hopeful but certainly wouldn't bet the ranch on it yet.

I started Levothyroxine yesterday. So far, no improvement, but I'm told it may take a while. Curious to see what affect it has... I will keep you posted.

 
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Old 07-12-2017, 11:55 AM   #8
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Re: Mystery Condition, Calling All Angels ...

I believe autoimmune creeps slowly and then whammo. Our genetics nicely prime us for tendencies of autoimmune, and we fo inherit some specific autoimmune diseases. It's the tipping point that seems to set things in positive motion and eventual confirmation.

I have Ulcerative Colitis, asthma, Primary Biliary Cholangitis, and others like depression/anxiety. thankful not the schizophrenia. My sister has Sjogrens and Ankylosing Spondylitis. I have symptoms, but havent been checked for that yet.

I check new posts so will see yours on the thyroid board.

Take good care and I so hope that the vertigo symptoms improve.
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