Cervical Instability? Breathing, swallowing, speaking

Hi. This is my first post (other than a journal entry) and I could use some advice.

It is assumed that I have EDS III as a primary cause to my POTS disorder. I was a dancer for many years but never had injuries. All my pain I attributed to normal wear and tear. I don't think I'd shown signs of EDS other than being able to turn my fingers into a freak show (no, they don't dislocate - just very bendy) and the POTS diagnosis.

My biggest complaint: BREATHING!!! I weigh next to nothing but it feels like I have 200 pounds sitting on my chest. To take a deep breath, I often have to reach my arms over my head or bend over allowing my diaphragm to push upwards. Grabbing the flesh in my traps/upper back and pulling upward helps, too.

#2. I'm weak in my neck often giving me a "boble head" and weak in my arms and traps. Things didn't start this way, this is a recent (in the last year) phenomenon.

#3. Swallowing feels funny. Not like there's something stuck in my throat but like it's being stretched thin when I sit up. I have pain in my esophagus but not specific to GERD.

#4. I can speak a few sentences and feel like I've just given an hour-long speech. It's actually painful to push my voice through. I go hoarse very quickly. (That could also be because I have issues with my salivary glands - they often don't work well.)

#5. Torso is feeling a little unstable but it's probably from lack of exercise since I can't breathe well.

Below the waist - It's all good. If I could breathe, I could run, dance, whatever. My legs aren't really affected.

I have no one managing my EDS. I've had brain and neck MRIs. A neck CAT scan. Two barium swallows. And of course, everything comes back normal. But are the wrong people reading my scans?

I've heard mention of Dr. Durrani in Cincinnati. Should I contact him for a spine eval? At this point, I don't trust anyone in Michigan to care for me. Unfortunately, I'm getting worse and I'm tired of struggling to breathe.

Any suggestions from those in or near Michigan?

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Ps I think I forgot abt the hideous blue veins covering my arms, chest, neck, forhead, and legs.... And the relationship I'm killing because I cringe when my bf even lightly brushes me.... I can't stress how much it hurts/ irritates my skin... He thinks I'm just not attracted to him anymore..... And forget abt S-E-X... Unless I wanna be sitting on the toilet, hunched over in pain, sobbing afterwards. Sorry abt the tmi! I just need to vent to people who can relate.... = )

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Hi, I've just found this site, I live in Australia and have been diagnosed Type III/Hypermobility EDS after 40 years and 26 of those in relentless searching for diagnosis. The past 18 months have been full of weight loss, lump in throat, barium etc etc 2 x ENTs, partial thyroidectomy (even though I said lump on L side and benign tumour was on R side...). My research suggests that swallowing difficulties and voice changes are quite common in EDS. Muscle weakness and muscles uncoordinated not helping. I read all this with great interest. I seem to be getting weird pituitary related stuff like producing breast milk, surges of epinephrine, no thirst, bad autonomic control, can't control my body temp, get dizzy etc and migraines with auras.
I'm starting a Masters in Nursing Research soon and hope to set up a broad whole health questionnaire of EDS affected individuals so that we can get a better clinical picture of EDS out there. May be then we can reduce all the paralleled medical misadventures we seem to be on.
So many times I've been told things are "nothing to worry about" "unrelated" or offered anti-depressants!!!! Ho hum.
Greetings from Australia and good luck to you all.

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Wow. I never thought that maybe my hatred of turtlenecks could be EDS related. I was able to wear them until... well, about the time I started having chronic pain as a teenager. Go figure. I cannot stand to have anything around my neck now. I can't even do mock turtlenecks anymore. The only thing I can stand (and actually like) are oversized hoodies so that the front of the neck is very loose and away from my throat , but the hood can be situated just right so that it cradles the back of my neck and keeps it warm. If I think about it now, it's sort of like a pseudo cervical collar. Interesting.

I too have a sternum that pops multiple times a day. My ribs where they attach in the front of my chest and my sternum have been extra "crackly" the last few weeks and anytime I stretch my arms or roll my shoulders back to stretch I can feel and hear the pops. When trying to explain to my new physical therapist (who has heard of EDS and believes me, thank GOD) that the only joints that do not sublux constantly through out the day are my elbows and jaw. My jaw only cracks every once in a while, but when it does holy cow is it loud. Other than that though pretty much everything else is constantly settling, popping, or subluxing. I am very muscular so often I can just flex my back muscles and push the vertabrae back in, etc but there are some things I can't put back myself, like ribs that attach in the back or my right shoulder (which subluxes in my sleep every night.)

I was just officially diagnosed with neurocardiogenic syncope (or POTS) on Thursday when I failed my tilt table test. I have never passed out and at age 35 I was told I was "old" to be diagnosed. I survived the regular portions of the test: 5 minutes supine, 5 minutes 45 degrees (felt awful upon raised), 1 minute down, then 20 minutes up at 90 degrees where my head felt fine but my legs were killing me, especially my right leg. My BP and heart rate supposidly responded appropriately except the nurse told me that my BP rose to 130/90 and then slowly came down to 110/90 and that I should mention my diastolic pressure not falling to my doctor so it could be watched. My BP at doctor is always 110/65 as I explained to him so if it was something other than that during the test perhaps there was an issue as I did NOT feel good and my legs were killing me (and I am not a complainer.) Anyway, to provoke a reaction their protocol is to give nitroglycerin under the tongue. It is optional, but I chose to go ahead because I want an answer. Nitro under tongue, 1 minute wait in supine, then raised to upright. I felt fine for 20 seconds, then didn't feel good at all. 10 seconds or so later I told the nurse "I'm not gonna be here much longer." To my body's credit it fought off the faint for long enough to talk to the nurse for a while about how I had never passed out and how weird this was going to be, etc. I might have lasted another 90-120 seconds. I am told I went out when my heart rate was 134 and BP was 130/90 and it dropped to BP of 60/40 with heart rate of 60. I was out for 20 seconds with seizure-like activity. Upon waking I recognized the feeling immediately (the cold sweats) as how I feel every once in a while in the middle of the night when I wake up but I was too out of it to tell the nurse. I will tell the cardiologist though. Anyway, long story short, cardiologist and nurse each asked me 3 or 4 times why I was there if I had never passed out since that is what the test is for. Dr asked how long I had been getting lightheaded and all I could say (still had not opened my eyes yet) was "long time" and then "years" when asked for more info. He then asked for more details and he got out of me that I was lightheaded multiple times per day for years and that I had never passed out. He seemed incredulous. I don't know if I went down too easy or what, but I have always been able to catch myself before the point of no return. It was weird to go all the way though a full episode. At least now I know what the full thing feels like and what all the stages of the aura for me are, but it pissed my body off something fierce. My legs are still twitching and having spasms. I have soaked in epsom salts, worn compression stockings, taken tramadol, etc.

I also have seen the info Sarah44 is helping put together on the Elephant Project and believe that I fit that mold too. I have lots and lots of "freckles" everywhere and am constantly getting new ones. Even in places where I don't get sun. My mom was the same way. Interestingly enough my doctor started me on Zantac 150 twice a day because being on one antiacid a day was not touching the severe nausea I was having. I was also having all the other symptoms associated with a mast cell disorder (which I had never heard of till reading about the Elephant Project). I am going to follow up with my dermatologist to see if he has any knowledge of mast cell disorders and if not, find someone who does. Seems I am already doing the right things if I do have it; taking Zantac 150 twice a day, Loratadine once a day, and avoiding my triggers as much as possible (perfumes, aerosol sprays like lysol/scented sprays/cleaning supplies/etc, bee stings), too much sun, etc). However, if I could identify the "freckles or moles" as mast cell clusters maybe that would save the dermatologist from wanting to keep cutting the damn things off all the time because they look suspicious (and always come back benign.)

Oh, and as for swallowing I never thought I had a problem, but did you know you are supposed to swallow food with you teeth touching???? I didn't! I did not know that the "proper" way to swallow is that the teeth are closed together in a closed bite fashion and then the food is swallowed. Who the heck can do that? If I have to answer the question "do you have difficulty swallowing?" per that definition then HELL YES I have trouble swallowing. If I do it my way then no, I'm just fine thank you. My way is teeth apart so that there is a space about the width of my index finger between my molars, tounge pressed against roof of mouth just behind front teeth, and along the upper teeth and then food is swallowed. Guess it is more like a shoveling the food down the gullet maneuver, but it is what I have always done. I didn't know until a few months ago that there is a "proper" way to swallow and that my way is considered "tongue thrusting" and is BAD per dentists and orthodontists. Whoops. I can hardly swallow water if I try to do it the "proper" way.

There has to be a connection to all of this. How can so many of us all have the same issues and not have it be related? As more of us put the pieces together and help others identify the signs of EDS in themselves and others there will be more and more knowledge gained and hopefully as the gene pool grows the geneticists and scientists will be able to discover more.

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When I get out of bed & stand up, I spasm everywhere but it's really bad in my jaw to the end of my sternum. I feel like everything is being pulled down. It even hurts to talk. I feel spasm pain in the very back of my tongue and voice box area. It helps to hold a little pressure over voicebox area when talking. Otherwise it feels like it being strained. Of course, don't know what's going on with me. I have had these symptoms that showed up 3 months ago. No apparent reason. I was tested for everything 2 or 3 years ago and they couldn't find anything. Also new is 2 spasms on each side of my neck. They are 1 inch wide and radiates lower front of neck to the back of my ear. My jaw area looks swollen as

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I haven't been able to read all of the replies to your initial message, but it sounds like you are definately on thr right track. When you are able to get a new doc to look at your MRIs - inparticiular your Brain/spinal cord/cervical spine - ask about Basilar Invagination/Impression. That's one of my maladies. Similar to you, I have cervical instability, bobbleheaded-ness, with chronic hoarseness and sometimes dificulty breathing. It's a parlor trick for my nieces and nephews because when you press directly straight down on my head, I REALLY can't breath.

Good luck with your new docs!!!

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I about fell over when I read about leaking breast milk and your other symptoms! I haven't heard of anyone else with weird pituitary symptoms!

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First of all I wish everyone the very best on the way to resolving these symptoms- I have had the swallowing, vocal, dropping things, reduced sensation and autonomic dysfunction/POTS issues, along with recently (in the past year) falling and unsteady gait (and I was a musician, teacher, violinist, pianist, vocalist, actress and dancer previously). It wasn't until I went to see Dr. Francomano at Baltimore Medical Center, who recommended a consult with Dr. Fraser Henderson, a specialist in EDS related neuro. issues that I learned what was causing some of the neuro. issues. We went in expecting simple Chiari, but came out with diagnoses of C1 and C2 atlantoaxial subluxation, hypermobility and instability, and C5-C7 stenosis, myelopathy sclerosis, osteophyte complex and abutting cord, mild Chiari, occult tethered cord, foraminal narrowing (bone pushing into the cord), and neurogenic bladder. If anything, a consult with Dr. Henderson might bring you some answers, because he does some very specialized MRIs and CTs in both forward, backward and lateral positions, which allows a radiologist to see what happens when the neck is turned a lot. (When I turn my head in any strange position, I also go into a full aura). If you can get a really good neurosurgeon workup (and one that does these specialized tests), you may find the root cause of your symptoms and be able to at least figure out a course of action while still young. I am 49, and it seems I've reached a tipping point; all my joints are more lax than ever, and we have carotid and distal vertebral artery issues as well, early family deaths from aneurysms (and brain dye tests), so I'm really scared of anyone monkeying with the neck area. It's always about benefit-risk, and so far we have only found one Boston area neurosurgeon who will even do a consult. You might want to do this especially as you dance; in the past year, I can no longer dance, because my balance is all off, and it is this that I miss the most (even as I was trained as a musician/violinist/vocalist.) Now, I have to be very careful about how I swallow, because the food gets stuck, and the other night a sip of soda went halfway down, then back straight up my nose. The tachycardia can be caused by venous pooling in the legs, but it also can be caused by C1-C2 problems (atlantoaxial subluxation) which can be very tricky and serious, particularly with a lot of hypermobility in the transverse ligament. I now have to wear a neck brace 24/7 and hope that I don't end up getting into any accident that causes the "hangman's issue" which leads to paralysis, and even the cessation of breathing. If you get a good workup now, maybe you can find some answers- all the best to you and your dancing!

Diana Cleaveland

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Oh yes, the voice and breathing problems, I get that too. I can no longer predict when I will be able to sing, and for years I lost 2/3rds of a 3 octave range. Also, this can be neurologically caused, but until you get worked up, you won't know whether it's the POTS from venous pooling that might be causing the symptoms. All the best, ~Diana

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Yep! I have-had all these types of problems. And like some of the others, I´m a dancer as well. All the skinny bendy chicks are doing it, lol. I've always done one type or another, but the last few years all Latin club (Salsa, etc.) and Ballroom.

And I still dance, though on a much reduced schedule. Now I keep to social stuff weekly, instead of the heavy competition training I did for several years. I had to stop because of the kinds of symptoms you describe. Actually, I was so sick I had to stop everything and go on disability. It was discovered that the building I was working in was water-damaged and heavily contaminated by mold. I got piles of testing and treatment, traveling all over the place to get it done. Bottom line, I'm not allergic to it, but I can't process the toxins it produces (otherwise known as antibiotics or mycotoxins, doh!)

What those exposures did to me was horrid. And I remember lying in bed barely able to breathe or speak. It IS scary. But try to keep in mind that the panic reaction is absolutely normal. If somebody held your head under water, you'd also panic, and that's the right response. It's built right into us as a survival instinct. The difference here is, you are still breathing, just not really well.

For me, the mold exposure was the trigger that sent my immune system into the dumper. And it turns out, the setup for that kind of immune response is extremely common - about 25% of all people. Until or unless you get exposed, nothing much happens. But once you do and you reach the point where your immune system is overwhelmed, all hell breaks loose. The particularly harsh result is extremely common amongst EDS people, and especially women. In some people, it shuts off completely when they get treated and avoid further exposures. But in people like me, the full recovery doesn't happen. There is more work being done on this, but my best find has been supplementation of vasoactive intestinal peptide (VIP), which is currently in trials. Inhaling it activates what is called the alternative complement pathway, allowing your immune system to begin functioning more normally. It's not a cure, but it's a great treatment.

That's only one tiny part of all the things I have done in that regard, but it yielded the most effective life-restoring results of all of them, with the exception of adderall (which gives me the energy to get upright and get my pulse rate up). The VIP trials are being done by Ritchie Shoemaker, M.D. in Pokomoke City, MD. (He's not particularly interested in EDS as a main dx. He works with the immune problems. And you won't find more than a couple around the country working in his particular area.)

Amongst any group of physically active people, you usually only see very obese people or people with COPD and such just starting out with this kind of breathless reaction right out of the gate. That should NOT happen to a trained dancer who's in shape and training 6 days per week! But it did.

And it's still there, to some extent. But I have found that if I can break movement into 3-minute segments (about the length of a song) and then rest as I must until I can breath, then I catch my second wind up front instead of way down the line as we would usually see. Standing still is the enemy. Once moving, I can get my heart rate and blood pressure up, then I'm good to go and it improves from there until actual muscle fatigue instead of breathlessness finally sets in. On a good night? That can take hours, to my very great joy. My legs are still strong. And I must do something to maintain muscle tone, or I'm toast. (Or, I'm already toast, but I can't stop. Karen in 'The Red Shoes', anyone?)

But there were other problems, of course. This thing has been compared to peeling an onion layer by layer, and rightly so!

I also have the cervical instability, with a herniation at C3/C4. If you consider that any instability in the cervical area can cause the kinds of troubles you describe, then it makes Chiari only one of many other possibilities. By last year, I could not walk without high heels because landing my heels would be so incredibly painful. And I mean, it would stop me right in my tracks.
I started getting facet blocks to help with the pain. And I was looking into disk replacement (which Duranni apparently does, though I don't know his success rate).

But before any of that happened, I located an osteopath who treats EDS and who has made the nerve blocks unnecessary. The muscles in my neck were spasming VERY hard, just as you described. I've always had those very pronounced tendons in my neck, but this was getting cra-ZAY! And incredibly painful, too. I still can't hold my head up all day long. But the doc has done very well in doing muscle releases that have eased those spasms greatly. The spasms are also in my traps. But they are all getting less and less as I get treated regularly. Of course, any place your spine moves out of line, some other part moves out of line to compensate for it, so they have been working on all of it, from my misaligned public bones to my skull.

Note: Osteo is VERY different from what chiropractors do. And I wouldn't go anywhere near a chiro again, to tell the truth. Throwing some heat packs on your back and mooshing vertebra back into position only to have them go wherever they like the moment you stand up is a waste of time and effort. Osteos do some mystical and mind-bending things with individual muscles and nerves that goes far beyond that. (There are bad ones and good ones, to be sure - but when it goes well, that's what they are doing.) But it makes sense, if you think of the way that a nerve can cause a single muscle to contract or release, and the effect that can have on an EDS bod. It hardly takes anything to get a vertebra or other bones to slide around. Just let the wrong one move the wrong way, and the additional stresses that places on other nerves and muscles will set yet another reaction in motion. It isn't always all in the spine. Ultimately, those nerves always connect to your brain, and your brain can start doing some freaky things when it's getting wrong info, because it's not just using those nerves. It's using glands and peptides and a whole host of other chemical signals to operate these skin suits we live in. And it's doing it in a body that doesn't produce all the linings and barriers between organs correctly. So, the cascade of events can get real crazy, real quick and look like they are disconnected events. I won't claim to understand all of that school of thought, or even a little of it. But it's very different than the way traditional western medicine organizes that knowledge. I use both, because each is expert at different things.

MRI's also revealed bone spurs causing nerve entrapments in my shoulders. I see the surgeon Monday, and should be getting my arms back shortly. I can type, but I'll very, very happy to get some arm styling and shoulder shimmies back. Crossing alllll my digits for that one!

Those same MRI's also revealed a bunch of cysts in my thyroid. So I'm seeing and endocrinologst about that. He found a goiter, which could help explain my inability to get my voice to project. (I can't sing any more, that's for sure!) But I've always had a soft voice. So, like everything else with me, I suspect that's another problem that has multiple sources. The difference these days is, I have to practically shout to get any sound to come out.

So basically, everything from the bottom of my skull to my shoulder blades is a multi-car pileup on the Freeway of Life. News at 11.

My sternum also pops regularly. At one point, I found that pushing down on it actually gave me some relief. I can't explain that, really. Just discovered it accidentally once when I was writhing around waiting for the pain meds to kick in.

You would think that AS dancers and having to be so very aware of what our bodies are doing and having all that muscle control, that all of this would make sense to us easily. I know how to fix most of the things that go out of place on any given day. I have to! You probably do, too. I've barely crawled out of bed at times just to stretch and move things around a bit. Actually, I MUST. I can't NOT do it, any more than I would just stop dancing. That's just how I'm built. And, because there are other dancers here, I assume we're pretty much the same that way. It's almost as if dancing is just an organized and expressive way of doing some things with our bodies that we were going to do anyway, if that makes any sense.

But it just isn't always that simple. All I can tell you is to be open to more ideas and be willing to explore more solutions. It's not quick, it's not cheap, and it can be extremely frustrating peeling the onion like that. It's just not a linear thing, and there isn't always a single answer. You could have several things happening all at once, multiplying their results and this is what you got. And none of us can be certain which ones apply to you. But don't panic! It's possible these things you have going on are all at a very fixable stage and it's just that reaction to difficult breathing that's leading you to assume perhaps the worst.

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You are HILARIOUS! What a wonderful writer you are! You've truly made my day.

I met with a surgeon in Cincinnati this week and I'm not currently a candidate for the fusion surgery (C1-C2 and occiput). I'm absolutely thrilled! My next step is to try more physical therapy but not necessarily on my neck. It (my neck) CAN'T tolerate it but I'm trying my damnedest to keep my muscles strong and tight. About the only thing I can tolerate is a basic ballet barre (which I love anyway), port de bras and soup can curles (actually, I've worked up to spaghetti sauce jars).

Regarding the breathing, holy crap - don't know what to do. I'm trying to get into U of M (michigan) to see someone for allergies. My current allergist (along with my own assumptions) thinks that I have a "leaky mast cell" disorder. My breathing problems seem to come from three areas: 1. lung irritation/asthma-like symptoms, 2. esophageal spasms and dry/burning throat, and 3. heaviness in my chest and torso likely from some sort of spinal compression. Right now I'm focusing on what the heck is making me so sensitive. There are fewer and fewer foods I can eat and chemicals, cleaners, allergens (especially ragweed), and even my freakin' FURNITURE is making me sick! Formeldahyde in bookshelves and bed frames! Who knew? Today I removed some of my furniture and may even pull up the carpet. I'm also concerned about this house. Since we've moved in I've had two miscarriages and then POTS and EDS mysteriously came into my life. To get someone here just to evaluate things like air quality is so expensive. With all the doctor bills and babysitters (I can't take care of my son on my own) and now replacing furniture, we just can't afford it. My husband mentioned today purchasing a professional ionizer for the house but those things can also be expensive AND dangerous if you don't use them correctly.

Anyway, it's too much and so overwhelming. But I'm workin' on it. Now that I know that I'm NOT having surgery, it's time to approach other possibilities.

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It had not been mentioned before that Sjogren;s is autoimmune disease that causes dryness - mouth, eyes, nose, lungs . . . yep there too. It can be treated with immune suppresent therapies. The other thing is "slow motility" issues. From the act of chewing, swallowing, digestion, etc. are slowed in people like us.

If swallowing is a problem try changing the consistency of the foods you eat. Record when you have an issue with a food, then eliminate foods like it. For example: if potato chips cause a problem, you may want to avoid crumbly foods like crakers/ I have swallowing problems that come and go . . . cooked chicken breast is really bad news (too dry) . . . I've gone for weeks just eating chicken salad, tapioca, mashed potatoes, etc. to avoid a choking response. I'm sorry I cannot help with the breathing issue.

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So late on to this, but has your motility been looked at? Won't show up on a swallow test or scope. I'm not sure if you were a part of a recent discussion when someone talked about a manometry, but i have been developing gastroparesis and an esophageal section has no tone and other parts over work creating spasms. These spasms create difficulty swallowing, minor aspirations at night that affect vocal cords (as well as lungs) and breathing difficulties when a nerve involving breathing is triggered by esophagus. Can be minor or be like an asthma attack, then I take nitroglycerin. I am seeing a top Hopkins motility specialist who is EDS friendly and has seen this in over a dozen EDS patients. He is a big researcher and believes there is a link between asthma and GERD as well. I have GERD in that I have a sloppy sphincter from the EDS that he thinks is also creating irritation my esophagus, but not really related to diet or triggers, just gravity or fullness. I haven't been diagnosed with POTS, but do have huge dysautonomia issues, which he wants to explore this fall with a neuro guy he works with. He finds this fascinating, which is a nice change up. As far as swallowing, texture is so important to me. Yogurt, tofu and eggs are my friends. when I am aqua- jogging regularly that helps too. Raised up my bed and that is huge.

Hope whatever is causing this can be worked out soon! We have such funky bodies!

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I'm glad if I could send you a chuckle or two. That's a good thing (as opposed to guffaws, which can caused more stuff to sublux).

I think the formaldehyde problem tells the story. Air quality testing can be not only expensive, but a waste of time and money. The very fact that you caught on and did the right thing by removing the offender tells me a few things. For one thing, that kind of sensitivity is Multiple Chemical Sensitivity (MCS). I'm not as severe as some, but it's there and I have a formal dx.

Formaldehyde IS a poison, so having it in your air supply would be a bad deal, any which way you look at it. You were breathing it and noticing. Others (like your kids and husband) were also breathing it, whether they noticed or not. So congrats! OR maybe, condolences - because you, too, are a Coalmine Canary. Welcome to the ranks, flap your floppy little wings in salute if you can. You can use it for good or for evil - just don't expect others to understand. It's a lot like EDS, that way. Same deal. Others don't sense what we sense, and so will assume you're a nutcase and hypochondriac, even if they do it oh-so-politely. But the instinct is right on. Everything in us will scream, "Ruuuuun!". And of course, that's precisely the right thing to do when you're breathing poison. Just like panicking when you can't breath. Nature is still a whole lot smarter than the scientists who struggle merely to explain what nature already gave us. And this sensitivity is part of our innate immune system, which is ancient. That's the very most primal part of the immune system built precisely to help us defend against biological enemies from ancient times.

The VIP I mentioned is spectacular at reducing the sensitivity, even if the things we sense remain just as toxic as they ever were. It's crazy expensive - runs a couple hundred a month, but it works like gangbusters. For me, the breathing problems stop rather abruptly, and I can be amongst ordinary humans and their gagimous collection of soaps and colognes again. So it's cheap, as near-miracles go. People training in studios are usually only sweat-scented. People in cocktail-dress social situations? Yowzah! Male partners with fake musk in their aftershave? Getting it on me, on my clothes, eventually in my hair, and me getting it in my car upholstery as I speed away from the scene of the Madison-Avenue-induced social crime? Priceless!)

Actually, the Toxicologists and the people who practice Environmental Medicine will generally recommend strict avoidance. And the patients who've been at this a while do likewise, and offer practical suggestions for doing it even better. My own opinion is that we are the finest air quality test kits ever built anyway. The only reason you would resort to formal testing is in anticipation of a legal action. In all other cases, it's better to spend your nickels on avoidance and direct care. Tests are usually directed at merely measuring what your own body is already telling you is there. They'll tell you that the dose makes the poison...but those who really get it will tell you that the it's the patient who determines the dose. If you hear the sound of hooves in Central Park, it just might be a herd of fabulous zebra bringing diabolically-sensitive air quality test kits!

I will bet you lunch that if you thought about it for a moment, you can also spot mold at 100 paces where others will (at most) shrug and say, "Yeah. A little mildew. Get some bleach." Which is the wrong answer, of course. But I won't get into all that here. The important part is that if you can sense it, you can avoid it. Not to mention, you would be precisely the WRONG person to be messing around with either mold OR bleach! If you feel better when you get away from your place (or wherever that exposure has occurred) then that's a pretty good sign that you still have the ability to recover, which is ab fab! Do it. Do it now, and don't look back. If you're not sure yet, go off camping or something for a couple of days and test it out. Don't take anything with you that might already be a problem. See if you feel better. That's wayyyy cheaper than air quality testing, usually way more fun, and if it works? Then you already know most of what you needed to know anyway.

Here's a curious thing - I've seen papers comparing certain volatile organic compounds (VOCs) produced by mold, and some of those compounds are -aldehydes, as well. I'm not certain anyone has finished off the research to the extent that MCS and the -aldehydes produced by mold are fully understood, even now. What we do know, is that these molecules are so tiny you can't even HEPA filter them out, and so stable that they're very hard to break down. They aren't alive, so you can't kill them either. There are a few ways to break them down, but none of those are things a human should really be subjected to directly. Generally speaking, it's better and cheaper to just get the heck out of Dodge and stay out if you can possible do it.

Anyway, the connection between exposures to mold and the start of MCS has been noted, over and over. The existence of both problem in people with EDS? Also noted over and over. And like EDS, we're all different and react to various substances at differing levels. Even I have to be careful and ask questions when I'm around people who are more sensitive to certain substances than I am. There might be a few universals - like Pine-Sol absolutely making you want to hurl, for example. But the rest is just like us here asking one another questions, because I don't know which parts of you are trying to fall apart the fastest or what you did about it, unless you tell me. The difference between us and the rest of the world is mainly that we WILL ask, and then take your word for it.

I won't even blink if you say that newsprint or plastic containers or air fresheners choke you out and make you want run for the hills - except you'd probably sprain an ankle or dislocate a knee running. If ONLY you had some dance shoes on, so you could move really fast without breaking yourself somewhere. EEP! Can't breath, can't stay, can't run? Where's McGyver when you need him most? What was it again? Stop, drop, and roll? Stick wet rag over your nose and mouth and crawl out? Shoot the ugly aliens before they land on your base? Why, it's...Panic Time, Big Time!

I know this is not an exactly pleasant answer, but it's an answer. And if you know what the problem really is, then you can do things about it. What got to me is the fact that you knew enough to start tossing your furniture. That, to me, is an excellent sign that you know what you know, and you act on it. You don't listen to the zombie-like townspeople, you trust yourself and take independent action. You got mad survival skillz, baby!

If it makes you feel any better, things could be worse. I've known people who had seizures over exposures. I know one who has an airlock built onto her house. Others wear gas masks when they leave their homes. Some don't leave their homes at all, and some can't even handle exhaust fumes well enough to drive away. Some are in a raging fight to get product ingredients listed so you can see them (because fragrances are exempted from listing). So, we're pretty much the lightweights in their world and have a much better shot at simply adapting our environments to work for us. Just try the avoidance testing on your own, and if it works for you, then you've got a major leg up on beating this thing. I'm always around, if you want to discuss methods and such.

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I'd like to "friend" you, if you don't mind for further chats. As I've gone through my POTS diagnosis and then my EDS diagnosis, I've been telling my docs all along: My BIGGEST complaint is shortness of breath. Whether it's from an air irritant OR weakness in chest muscles OR esophageal spasm from something I'd eaten - it was my very first symptom three years ago.

My husband is in a bit of denial about this (starting to come around) and I'm looking at a test kit (Air Lab - was $400/now $250) just to try to prove that this house may be making me sick. My husband has asthma but has NOT had an increase in symptoms since moving into this house. My son seems to be doing well (5 y.o. - good energy) but has sniffles a little more often than I'd like. In this economy, there is NO way we could sell our house right now for what we owe on it. But... if we actually found something, then we could at least evaluate our options.

My situation IS bad. I DON'T leave the house except for doctor appointments. I where a honeycomb allergy mask both inside and out. Since my vitamin D level dropped, I've spent more time out on the deck to get some sun but I wear the mask and a scarf in my hair and wipe my skin down whenever I come in. I AM allergic to trees, weeds, molds, etc. per a scratch test. Those allergies are "real." My social life has flown the coup. Asking friends to come over without perfume, hairspray, or lotion but only to have to cut our visit short because of the scented fabric softener on their clothes is just sad, to say the least.

Tonight I'm going to "Parent's Night" for my son's school. I plan to wear my mask but I'm just petrified to be cornered by a mom soaked in Jean Nete (yuck!). Wish me luck. This is a HUGE step for me.


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I see that you've mentioned looking into U of M for treatment of this problem. I've lived in Ann Arbor the past 6 years, and I have to warn you that you might not be pleased with their results. I've been experiencing very similar symptoms for a little over a year now (dysautonomia with syncope, dysphagia, the "bobble head" difficulties, and - most importantly - difficulty breathing with cyanosis that is now virtually permanent). Because my primary care is through U of M, I sought the help of their pulmonology department. The symptoms came on very suddenly, and I ended up at the ER at Saint Joseph Mercy of Ann Arbor. I've been to two ERs now (St. Joe and Henry Ford), and both told me that I needed a bronchoscopy immediately and that the CT scans revealed interstitial lung disease. I brought the records (and my blue lips) into U of M's pulmonology department, and was told that not only was I faking the color on my lips but that those other hospitals must have "inferior equipment" and got my diagnosis wrong. I was shooed out of the office.

I came back to U of M pulmonology a year later (about 2 months ago now) with more records, pictures, and a much better understanding of my triggers. Among those triggers: I cannot wear any bra that isn't a semi-loose sports bra and cannot eat a large meal without loosing my breath so completely that I turn blue and nearly (or completely) pass out. The doctor's response:

"Well, you know a restaurant meal is supposed to be about two servings, anyway. You need to watch your weight. And just don't wear a bra."

I'm 5'4", 150 lbs, and a 36DD. I'm not obese, I wasn't talking about restaurant-size meals, and I can't just go without a bra. But thanks for trying, doc.

He sent me away with no further tests, follow-up appointments, or referrals. Gave me a one-page handout on POTS and told me to quit eating. This is pretty typical of the treatment I've received at U of M. I don't want to scare you away from trying new doctors who may inevitably do wonders for your care, but it is important to remember that large hospitals aren't always the answer. I had similar experiences at Cleveland Clinic with an orthopaedist who told me I couldn't have EDS because my shoulder wasn't limber enough (as if that's a diagnostic criteria...) even though I meet all 9 points on the Beightol scale and a doctor who overlooked ulcerative colitis because when I told him I had substantial pain and rectal bleeding he responded with "It's probably colon cancer....just kidding! You're fine."

Oh, doctors. Long story short: just don't eat or wear bras. D'uh. (Kidding, of course!)

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Have you thought of seeing Dr. Fraser Henderson? He can find issues in the neck that no one else even knows to look for. This girl helped me on my journey to find help, and Dr. H fixed my neck this spring.

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