*** Nose feels too empty/hollow/absent. *** Extreme sensation of dryness of the nasal cavities, with or without crusting. *** Hardly any moisture production. *** Dryness of the pharynx, soft palate and back of the tongue. Feeling of needing more nasal resistance (or membrane responsiveness) to breathe. Difficulty breathing in deep. *** Nasal cavities and sinuses over sensitive to cold air.
***Increased pulmonary sensitivity to air-borne irritants and cold air. Breathing difficulties due to: nasal dryness and/or pharyngeal dryness and/or over taxation of bronchi with cold and dry air. Diminished nasal airflow sensation feedback ('paradoxical obstruction').
*** Phantom limb sensations (which some experience as actual pain).
***Increased hypersensitivity to different volatile scents like - smoke, perfume, gasoline, which cause gagging and feeling sick, but at the same time a marked reduction in the ability to smell casually during relaxed breathing or eating.
Difficulty projecting or resonating speech. Feeling weak and depleted of energy. Poor quality of sleep.
*** Difficulty concentrating ('aprosexia nasalis'). Marked reduction in sense of self and very crippled sense of well-being, coupled with very irritated and/or depressed mood, avoidance of social interactions, anxieties, difficulty making simple every day decisions, and often clinical depression.
Other charateristic symptoms that many ENS patients may develop:
Thick constant drainage at the back of the nose and throat. Chronic sinusitis. *** Dry eyes. Worsening of pre surgical nasal symptoms, such as allergic rhinitis, etc'. Epitaxis.
***Hardly any mucus production, or the opposite - unstopable rhinoreah. Foul smell from nasal cavities.
I put stars in front of the symptoms that I have.
I am shocked! In a way I feel terrible and almost want to go for an X-ray to see if I have any remaining turbinates. I feel like mine are gone.
Also I feel as if the tissue cant/wont grow back.
Its funny this lyme thing. You think you have it bad, but then you find someone else who thinks they have it terrible but they only have some of your symptoms.
Posts: 2905 | From New England | Registered: Sep 2004
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lymeHerx001
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Has anybody every heard of this?
Posts: 2905 | From New England | Registered: Sep 2004
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bettyg
Unregistered
posted
outstanding find! never heard of this...
reading all symptoms; i have majority of these too! i'll add this to my newbie package.
please copy this link to TREEPATROL'S in MEDICAL so he can add it to his links as time permits; thanks ************************************
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lymeHerx001
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posted
Yes betty, we are on the cusp of new science arent we?
Docs dont have anything on us. I email the site operator and am still waiting for a supply. I also dontated some money to their cause because right now these symptoms bother me the most.
My nose just feels so dry and hollow! I cant explain it. Thats why I posted this.
These symptoms best describe what I/we are experiencing.
I hoped it would never come to this.
Posts: 2905 | From New England | Registered: Sep 2004
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quote:Originally posted by lymeHerx001: Well I found a new syndrome called "Empty Nose Syndrome."
Apparantlly this happens to people who have their turbinates reduced or removed in an effort to correct a deviated septum or for chronic infections.
I've never heard anyone else, not even doctors, who knew what Empty Nose Syndrome is, so it's a surprise to see a post from someone else on this related to Lyme disease. I developed breathing problems in February of 2007; the feeling like I wasn't able to breathe got me to the ER a couple times, but they never could find anything immediately wrong. I had to hold my finger in front of my nose to feel if any air was coming out because it didn't feel like it. The only thing that resembled what I was feeling was ENS, but I've never had any nose surgery. It started right after I developed an allergy to ceftriaxone where my nose started to burn, and my body started to itch. I still wonder if the membranes in my nose got so irritated and damaged that I'm not able to sense the airflow passing through my nose making it difficult for me to regulate breathing. Has your doctor been able to explain anything about this to you? Every time I brought it up, they looked at me like I was crazy.
Posts: 20 | From Portland, OR | Registered: Dec 2007
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lymeHerx001
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Well its not exactlly like the air hunger you describe.
What I have is a chronically empty feeling nose.
Also I am very sensitive to chemicals that I breathe in through my nose and my throat gets sore.
My nose feels dry and when I breate in I can feel the air hit the back of my tounge.
I never had this before.
It almost feels like some kind of chemical burn inside my nose, like some of the tissues or membranes have gone or atrophied.
Its very depressing and annoying.
The closest thing that I found to this was ENS,,, but I dont have crusting or thick discharge.
What I do have is vertigo on top of all this!
But the term "empty nose" couldnt be more fitting. It feels like my nose is empty! I lost most of my smell too. Everything is just irritating.
Posts: 2905 | From New England | Registered: Sep 2004
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lymeHerx001
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bump for answers
Posts: 2905 | From New England | Registered: Sep 2004
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lymeHerx001
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anyone else experiencing this?
Posts: 2905 | From New England | Registered: Sep 2004
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posted
I have had hardly no mucus in my nose for months now. Even when I sneeze, nothing comes out except air. When I told my LLMD a few months back, he said thats a new one.
The ENT specialist I saw said I have a chronic Eustachian Tube infection and blockage but he did see mucus when he did the scope.
I don't have any of the other symptoms but I have a feeling the Lyme is the reason why I have no mucus.
Mike
Posts: 21 | From NJ | Registered: Jul 2008
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
me, me, me!!!
i posted about this a couple of weeks ago. yep, exactly that.
my nose feels constantly dry and the right side of my face hurts. it gets stopped up but there's not mucus.
so how do you treat this?
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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tailz
Unregistered
posted
I have every one of these symptoms. Do you hear 'swooshing' in your ears?
Be on the lookout for tightness in the jaw and either teeth that feel too tight or wiggle. It starts in the sinuses, but can easily clog your ears and jaw up.
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lymeHerx001
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up
Posts: 2905 | From New England | Registered: Sep 2004
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lymeHerx001
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up,
anybody have catscans done?
I am curious if I really do hae atrophy of my nasal tissue.
Posts: 2905 | From New England | Registered: Sep 2004
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posted
Mine is exactly as randibear described. I feel constant pain and pressure and congestion, yet everything is open and dry, but the ENT's do say everything is swollen and red in my sinuses...they have no clue why or what it is (lyme)
Posts: 499 | From Indiana | Registered: Oct 2007
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lymeHerx001
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I used to get this where everything is dry but swollen when I had a sinus infection.
What I have now is simliar but chronic.
ENTs are a waste. At least the few that I went too.
I would rather be a "test" subject for some PHDs paper then willinglly go to an ENT>
I feel that we all are test subjects in a way.
Posts: 2905 | From New England | Registered: Sep 2004
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posted
I was dealing with alot of the symptoms for a long time.I did see an ENT and had a sinus scan done.
I was thinking possible polyps in there. The scan was CLEAN for polyps and infection. It did show I have a deviated septum on the right and a bone spur on the left.
The ENT asked if I had heard of Sjogren's ? I said yes, but was ONLY told it caused dry eyes. The ENT said No,its more like chronic dehydration to the WHOLE body, and affects everything.
He felt the driness, was causing the swelling and that was hitting the bone spur, causing the pain and blockage.{ In my case the ENT was right!}
He didn't know what would help, but said to research it. Of course surgery is an option. But I said no to that.
I have been using saline nasal spray, but it didn't stay moist long. All the drs just tell me to drink more water...But it dosen't seem to stay with me, unless I add a pinch of sea salt, several times a week. Then things stay moist.
My nose has been much better (abt 4 months, now), since I can now keep better hydrated. Even with the heat on, I don't feel like I am choking all the time. I don't " gulp" full glasses of water, sipping it and holding it in your mouth for a few mins really seems to work better. It sort of soaks into the tissues.
I don't have that constantly blocked feeling and less postnasal drip. Cause its being moistioned and thinned from the inside.
The chemical smells still bother me, depending what they are. Mostly gas/fuel smells.
I also noticed alot of my other symptoms have lessened,dehydration does alot more than make us thirsty. Hope this may help you to find some relief.
-------------------- Take Care, DakotasMom01 Posts: 371 | From NJ | Registered: Dec 2007
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lymeHerx001
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Wow, Dakotas!
It seems a little of my story and something unique.
Are you dehydrated all the time?
I didnt understand if you drank water if this helped any.
I went though a phase where I drank alot of water and it just made me excrite more. It didnt help my symptoms so I stopped.
I see that your also more sensitive to smells then you used to be is this correct?
For me I am very sensitive to gas/ammonia/mold.
Mold is the worst.
I also dont understand why I have vertigo 24/7.
It really still upsets me all these years later.
I feel cheated out of life.
Posts: 2905 | From New England | Registered: Sep 2004
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I was very dehydrated all the time, without realizing it. I was drinking alot of water but like you, it was going right through me. Because there is nothing in water, to make it stick with a person.
Example, take coffee or tea. Drinking it totally black that dosen't stay with me...But if I add milk or sugar it stays with me. Along with the calories, which I don't need.
The pinch of sea salt, sort of makes the water a similar viscosity as your blood would be, so the body dosen't expell it as quickly.
Whats the first thing they give you when you are sick in the hospital? An IV bag of saline solution, right.
As I understand it, when people drink huge amounts of water, they tend to create an electrolite imbalance. Which in turn causes more problems.
With chronic deydration, the joints and spinal disks dry out, the nerves become more sensitive, the skin, brain and organs are also affected.You have brain fog, more conjestion when sick, vision disturbance, etc.
Many people do not note, on many of the meds they are taking, they can cause "dry mouth", which I think is a sneaky way to disguise or down play the dehydration the meds cause.
If a person is on several meds that can cause "dry mouth", chances are they are very dehydrated with out knowing it. Now, with people having to turn the heat on, this will add to the dehydration.
There is s good site to check out, called http://www.watercure.org/ that goes into a lot of detail on dehydration. I learned lot at this site too,http://www.sjogrensworld.org/ .It can also be a thyroid problem.
Actually, Herx001, the chemical sensitivity has diminished a little for me, since I am now staying better hydrated.Its just the ones I mentioned above that still bother me. I can handle the soap isle in the store, and using bleach again.
Places that have strong smells like candle shops, will get to me. But not as much, if I am hydrated. I seem to rebound faster too, from exposiure. Maybe the water is pushing out the toxins faster?
I don't know if its because the re-hydration, is making the tissues plumper, there fore reducing the irritaion, or if being so dehydrated, makes those senses that much stronger.
I can say, most nights I sleep better and longer and don't wake up feeling like I am being choked.I can tell when I haven't had enough water, I get very low on energy and more symptoms re-appear.
I sometimes add a splash of lemon {no sugar} or lime juice to the water. I was drinking alot of herbal teas, but I think some of those we causing me to have other/ more symptoms.
Since the skin is the largest organ, maybe try soaking in warm bathtub, with just a little sea salt added. Not really hot water, cause that will dehydrate, too. Many people take faster showers, but thats not enough time to hydrate a person.
In the summmer, I found I wasn't bothered as much by the heat, when I soaked in a cooler tub of water.
I think vertigo is also a symptom of dehydration, look on water cure. I haven't been there in awhile, and have forgotten some things.
I also wonder, if its not the dehydration, that causes some of the hypercoagulation?? Because most blood tests they want you fasting, before hand...they tell you no food or drinks, for like 10 hrs before.
One day pre-lyme dx, I had to get labs done and the blood wouldn't flow it was so thick. The lab lady said she wished they'd stop telling people NOT to drink water before blood draws, because that makes the blood thicker and harder to draw!
I asked her abt it and she said, theres no reason not to drink plain water before labs, it keeps the blood thinner and flowing. Its NOT going to alter the test results in any way. Since then I always drink water and have never been told I was hypercoagulated again. I ask all the lab techs and they say no hypercoagulation.
I agree with you on being cheated out of life!! All of this stuff sinks!!
Perhaps you should look into it more and give it a try? Its very cheap and just might give you some major improvements. I hope you feel better.
-------------------- Take Care, DakotasMom01 Posts: 371 | From NJ | Registered: Dec 2007
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lymeHerx001
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thanks
Posts: 2905 | From New England | Registered: Sep 2004
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Leelee
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posted
This is one of my problems.
Although not officially diagnosed (my appointment with a LLMD is March 17), I attribute my dry nose symptoms and the difficult breathing I have to Lyme or a co-infection.
The link to information that lymeHerx001 gave in the first post could have been written about me.
About three years ago when my troubles began in earnest I went to my PCP and begged (seriously begged) for a Lyme test. I didn't know a thing about Lyme tests at the time. Of course she sent me for an ELISA test and it was negative. I took the results at face value.
Time went on and I kept suffering so I decided it must be allergies. After three trips to the allergist for testing it was determined that wasn't the cause either.
I had a CT scan done of my sinuses and nothing showed up there either.
A few months ago I considered Lyme again and did more reading. Now wiser and better educated about the subject, I completely think the dry nose syndrome can be attributed to this horrible disease.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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lymeHerx001
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doesnt it just bother you that you cant get any serious answers?
My sinuses flipped to the opposite direction.
They used to be too stuffed up and moist and now they are dry!
Yale was a joke. Dont go there what ever you do. The main head honcho surgeon told me that it was because of the dry winter air. Winter air my big foot!
Posts: 2905 | From New England | Registered: Sep 2004
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Leelee
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Hi lymeHerx001,
Yes, the lack of answers drives me insane. What makes it worse is that doctors are so dismissive and incompassionate. I have been so humiliated in my search for an answer to what is wrong with me.
The doctor that ordered the CT scan for me was nothing short of rude. But at least he did it. When nothing showed up he said I was probably just extra sensitive to changes in barometric pressure. Crazy!
I'm counting the days until my LLMD appointment, dry nose and all. LOL!
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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lymeHerx001
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BS BS BS times a million!
This is america! Where have all the edisons and einsteins gone?
Does the government have them horded away working on new ways to harm us or what?
My point is a doctor should be interested and helpfull in finding a cause and or resolution to our disease.
Posts: 2905 | From New England | Registered: Sep 2004
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I'm new here, and I don't know you or how much you know about MCS or how long you've had it, so forgive me if I'm telling you things you already know.
I'm not familiar w/empty nose syndrome, although I think I might have seen a reference to it in Our Toxic Times.
That's the newsletter of the Chemical Injury Information Network (CIIN.org). I'd bet they have info. My guess is that it's another term for one syndrome that's part of the larger illness of MCS.
The symptoms you list are all extremely common MCS symptoms, particularly symptoms that occur during, immediately after, or delayed after, a chemical exposure.
You may be aware it's something you're sensitive to, or it may be a new sensitivity (due to the mechanism of "spreading") that you're unaware of.
A friend who has MCS (much recovered now, see below), had polyps in her nose, which sometimes had to be shrunk or removed. She had many of the symptoms you list.
I'm wondering if you have set up a "clean room"? If you have, do you experience these ENS symptoms in that room?
You spoke of a cure. Definitely, that would be nice!
Many people with MCS view the illness not so much as a disease requiring a cure, but as our bodies' natural response to the poisonous soup we all eat, breathe, wear, etc., which we are not equipped to withstand.
Viewed in this light, the "cure" will occur when the products we and our neighbors use, and the environment at large, is not filled with toxic chemicals.
I often try to explain MCS to people by explaining that it is not an allergy (not IgE mediated), but a form of systemic poisoning.
Thus, while people with MCS try all sorts of treatments, and what is successful varies greatly, the only widely accepted treatment for MCS at this time is avoidance of triggers and of likely sensitizers (toxic chemicals).
While this doesn't generally result in a cure, it does provide *substantial* relief from symptoms. Avoidance comes at a price, but feeling better is a really terrific motivator!
Additionally, the people I know who have recovered to a large extent are those who have avoided exposures, and detoxed, over many years, which has allowed their bodies to repair some of the damage (sometimes a surprising amount).
This often means that they can eventually withstand exposures that they would not have before, or that the "payback" from a given exposure is less severe, in terms of length of time for recovery and/or severity of symptoms.
Personally, my MCS has slowly improved over the years. There are many things that I couldn't tolerate before that I can now, e.g., natural toothpaste, fragrance-free shampoo, pens, and many more.
Also, now there are some exposures that I can be around and only have a few hours or a day or two of payback, whereas before it would have been weeks or months.
However, there are some exposures that will never be safe, never worth the risk, things like new carpeting, turpentine, and especially any form of herbicide or pesticide.
Because any progress you make can be reversed by a large enough chemical assault. And you never know what your threshold is.
Peace, Sharon
Posts: 223 | From Western Mass. | Registered: Nov 2008
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lymeHerx001
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Glad to hear you are feeling better Sharon.
My situation is kinda a unique on meaning:
I used to have a high tolerance for chemicals, I loved loved loved cologned and fragrances.
Then around the time I started smoking cigarettes I had my first attack of vertigo. I quit the cigarettes but would still get bouts of vertigo around mold.
Then when my LLMD started treating me for Lyme, I think that the herx overloaded my system and caused the vertigo to become chronic and gave me a subltle form of brain damage or dysfunction.
I say subtle because it didnt come up on an MRI.
My diagnoses recentlly from 3 physicians at YALE NEW HAVEN was migrane associated vertigo. That basically means that my brain is having a migrane all the time with or without me getting a headache.
Just thinking about the whole thing gives me a headache. I can describe it generally but beyond that its mostlly theory.
Posts: 2905 | From New England | Registered: Sep 2004
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I'm sorry about the migraines. All the time is a nightmare. I have them very often, sometimes weeks at a time, but thankfully I get respites.
Sometimes I get them w/out the pain, and then that's confusing: Is it a migraine or isn't it?
Actually, the bizarre thing about sensitivities (and this applies to food sensitivities, too), is that often people either *love* OR *hate* what they're sensitive to.
For example, I've always had some chemical sensitivities, I just didn't know that's what it was. But I loved the smell of gasoline. Filling station, mmmm.
That's not uncommon for MCSers.
But the smell of rum gave me headaches.
I liked perfume or being really close to someone with cologne/perfume because it gave me a little buzz. (I was getting mildly high off it - the petrochemical ingredients- but didn't realize that.)
It's in-TOX-icating, like alcohol.
That's what happened w/me w/smoking, too. I always got buzzed on the first few smokes of the day, or even enough smokes at the end of the day, even at a pack-a-day, while most smokers lose that buzz once they're regular smokers.
I was being mildly intoxicated/poisoned, which felt very enjoyable at the same time as it also made me sicker than my friends, which is why I would quit and restart so often.
Good luck with the nose! -s
Posts: 223 | From Western Mass. | Registered: Nov 2008
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lymeHerx001
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Very interesting yes.
I have read that those who develop MCS used to get an immense pleasure out of highly scented products. And then when the sensitivity happens they cant tolerate them any more even in small amounts.
I was literally addicted to scents and would have to wear huge amounts of cologne and smell clean.
Now I cant stand it!
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map1131
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I too developed a MCS since being ill. I'm become a fanatic about cleaning supplies and cleaning up toxins used in my home.
If I must use a product in home I use masks and gloves, air flow etc to rid my home of the smell.
I also have the dry nose, sinus thing. I actually am a water addict. My mouth, nose, brain, etc is all dry. Scott has responded to some of my posts about "illnesses" that are water dehydration related.
I also have problems with my ears which now I'm wondering if it's due to dryness also????
I use essentials oils in my home for aromatherapy and also to try to address some benefits of different oil for health benefits.
Some essential oils do not sit well for me, too strong and give me headaches. They stir the MCS up.
Interesting thread. I missed it the first time around. I still wonder how Tailz is doing???
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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lymeHerx001
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Pam, you dont know untill you have been there!
I feel for you and everyone who is sick.
I hope Tailz is doing well and we wont see her for a while.
We all know that if we are still posting on this board that means that in all likellyhood we are still sick!
Posts: 2905 | From New England | Registered: Sep 2004
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feelfit
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sorry guys Tailz was banned some time ago...so it's not a matter of improvement..sorry,
Posts: 3975 | From usa | Registered: Aug 2007
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posted
My brother-in-law was diagnosed with empty nose syndrome about 5-10 years ago. He had some type of nasal surgery and the doctor took out too much tissue.
My sons & I have had our turbinates reduced. I also had my septum fixed. This was done in 2000. Our turbinates have grown back.
All 3 of us have a lot of sinus pain/pressure.
If you nose is dry, try using the spray gel. You can have swollen nasal tissue from allergies.
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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