posted
I haven't been here much lately, I just tried to relax and take a brain break on research for my Angie.
But, she has been making a weird hissing noise. It is random and uncontrollable.
We have all gotten to where when we hear it, we try not to react. She is embarrassed by it.
The sound comes from her mouth. No odor, she can't explain what happens.
This has got to be the craziest disease ever.
Just to bring you all up to date She is seeing Dr D in OH and has been on abx since March, with no improvement.
She was undiagnosed for 5 yrs. Then saw Dr R and got a diagnosis, but one year on supplements only.
Posts: 50 | From KY | Registered: Jan 2016
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me
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posted
Does her doctor know about it?
Some people have vocal tics. I'm not saying that is what it is. It's just the first thing that came to mind bc I have a friend with tics.
Posts: 1431 | From USA | Registered: Mar 2015
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me
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Again, it could be something totally different. This was just my initial thought.
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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posted
Thanks ME. It may be just a type of gas release. So many strange things.
She has also been having pains like a pin stick, followed by tiny red dots.
These happen in all different areas on her. My heart breaks for her.
Posts: 50 | From KY | Registered: Jan 2016
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Keebler
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- It won't be weird once the explanation is found. And I'm certain there is something to this that will make perfect sense.
Hissing from mouth? Some kind of fistula in the roof of the mouth, back behind the uvula, or nasal passages -- possibly even with the ear tissue?
For some people with tinnitus, others can actually hear that ringing alongside of their ears / face. Hissing can also be a type of tinnitus. With movement of the mouth the ear tissues are all moved about, it just seems like a fistula of some kind should be explored.
But it might take a very skilled neurotologist to examine. Vanderbuilt has a very good vestibular department. -
[ 06-22-2016, 12:20 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- If she is very weak, the hissing could also be attempts to talk. After seizures, when I'm trying to get my ability to move and speak back, I've has some hissing at times. Seems that my vocal cords just don't have the oomph it takes to move them properly. I can't really describe it, though.
But it brings me to that it could be some vocal cord issues. If there might be growth on the vocal chords where they don't close just right all tight and such, some hissing might be the result.
Or if the vocal cords spasm. That seems most logical, actually as a place to begin. Wonder if maybe the lungs or esophagus could have a minor thin tissue "leak" or fistula (ulcer)?
There must be some logical explanation. Seems a doctor with a good ear and a stethoscope should help.
You mentioned in February of her slurred speech, so there might be some connection with the weakness / ability to form words and have enough breath. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- Might the "hissing" also be interpreted as degree of "wheezing"?
Causes of Stridor and Wheeze (Breathing Sounds) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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- If a regular doctor does listen and thinks it's inflammation and decides steroids are in order - be sure to know that only in a life threatening situation and then only IF certain antibiotics are on board.
You might mention this hissing to the LLMD by phone just in case it's a clue they need to know about.
As a point of reference, as I recall Angie is a young woman, close to your family (?). That she has been on abx since March, with no improvement, that is not uncommon for someone so very ill as you've described. Not uncommon at all, actually.
You say that "this has to be the craziest disease ever" -- well, not really. It's not crazy at all. It all makes perfect sense, once we come to know more about it.
I worry that what seems "crazy" to others might make the patient feel "crazy" - I recall my former husband having called me "crazy" due to my severe hyperacusis.
Of course, then, I had no word or explanation for it (and I really did think he kept turning up the TV when I had my back turned - which may or may not have been the case). But his determination that I was "crazy" still hurts today, after 30 years.
Is lyme very UNIQUE, though? Absolutely. Does it have twists and turns one never would have ever thought existed? Oh, yeah.
But I think it's only through the incompetence and outright abuse by so many doctors who dismiss it that has the ordinary person think it's a "crazy" disease and those who are dealing with are further stigmatized and crawl in a hole in the ground.
So that term is a trigger for me, I admit yet it all does make sense once we find doctors who know about it. Then it all makes perfect sense, albeit still a rough & tumble road for all.
I know you care about Angie very much and would never do a thing to hurt her, though. This has very much been a "Twilight Zone" marathon, though, and even I have to remind myself that it does make sense, all things considered.
There are explanations for the most confounding things. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Thank you all soon much. Angie is very special to us. She is engaged to our son. She seems to think the hissing has to do with gases. She told me let yesterday that it feels like a ball (air bubble) sometimes is rolling up her throat, then comes out as a hissing noise. We see the LLMD on Friday. It is on our list. I never say anything to Angie that is not encouraging. I tell her we will get through this, and we will not give up. Her parents are not supportive at all. In fact, her mother tells her not to be telling anyone that she has Lyme, cause they will think she is crazy. I have seen so much and read so much, that I am beginning to find some since in some of it.
Posts: 50 | From KY | Registered: Jan 2016
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