Carol Sidofsky has here own homepage full of informations about VCD (in English).

See: cantbreathesupspectvcd by Carol Sidofsky

Dear Marianne,

Here are answers to your questions about our personal experiences with VCD:

Did we know what the causes of our VCD were?

YES, and I will describe these causes:

My husband first got VCD, 2 years before I did. He got severe VCD about 1998. Looking back, he realized that his immediate ("inciting") causes of his first severe VCD attack, were: snowmobile exhaust fumes, cold air, exertion (trying to pull the stuck snowmobile out of a snowbank), & stress (being in an unfamiliar location)

Later, he discovered that he had the following pre-disposing factors for getting VCD (causes, triggers, aggravators, pre-disposing conditions):

1) a sinus condition, that had been worsened by a failed root canal dental job, on an upper molar tooth. Also, his sinus problem probably was aggravated by his former painting profession, and, by his LPR:

2) LPR (Laryngeal-Pharyngeal Reflux),--a high up type of gastro-esophageal reflux (GER). My husband was tested for this, with an esophageal pH probe, but the test result was "borderline" positive. He does have LPR, however. The pH test is not 100% reliable, because LPR is an intermittent condition.

3) previous mold in our basement, from a water leak,

4) situational stress

5) toxic fumes, from his former painting profession,

6) cold air,

7) exertion (but, it may be that exercise caused gastric reflux "episodes", leading to VCD attacks.)

8) possibly, childhood tonsillectomy.

About two years later, in the spring of 2000, I got VCD (No--VCD is not contageous!). Looking back, I realized that my immediate ("inciting") causes of my first VCD attacks, were a lot of severe coughing and much thick phlegm, due to a severe (possibly viral) case of bronchitis.

I also later discovered that I had some pre-disposing factors (causes, triggers, aggravators, pre-disposing conditions) that included the following:

1) a sinus condition (post nasal drip),

2) LPR (Laryngeal-Pharyngeal Reflux). This condition may have been somewhat aggravated (worsened) by the migration of viruses from the bronchitis, over to the vagus nerve.

3) previous mold in our basement, from a water leak,

4) situational stress (loss of a close family member),

5) bronchitis,

6) possibly, childhood tonsillectomy

7) possibly, childhood exposure to the insecticide DDT ( mögliche Aussetzen des Insektizide DDT in der kindheit)

I discovered that I did indeed have a sinus problem, by trying the SINUS TIPS that my husband had used. By doing this, I had fewer VCD attacks. So, I empirically discovered (trial & error) that I had a sinus problem, that I didn't even know that I had, earlier.

I still use all these "tips", every day, as "maintenance".


I discovered that I too had GASTRIC REFLUX, by trying all the GASTRIC REFLUX TIPS, every day, for about 2 weeks. This resulted in NO MORE VCD ATTACKS! Since these "tips" stopped the VCD, I was amazed to realize that I did have gastric reflux (the LPR type)! I still use these "tips", every day, with good results. No more VCD attacks, for almost 3 years, now. . ( more than 230 people have already contacted me, about VCD, since spring of 2001, because they found my website. The MOST COMMON CAUSE of VCD, among these particular 230+ people is...GASTRIC REFLUX!!! (But most of these people also had other VCD causes, in addition to the reflux.)

How long did we each suffer with VCD, before a doctor correctly diagnosed us?

About one week, for each of us:
I have heard from people who have suffered with un-diagnosed VCD for days, months, years, & even decades! This is because most doctors don't know much (if anything) about VCD. This is why I made the website!

Each of us suffered for about one week, before getting correctly diagnosed with VCD. It felt like much longer than a week, because we each had many VCD attacks, every day, including while sleeping, until we finally got correctly diagnosed.

We each were repeatedly MIS-diagnosed, as having asthma, at several Emergency Rooms, in our local area, and in the closest large city.

We don't have asthma.

We were each given an asthma inhaler called Albuterol, a "beta-agonist" bronchodilator, which worsened our VCD.

Finally, my husband went to see a Pulmonologist, and this lung doctor had heard of VCD. She laryngoscoped my husband, in the office, and saw his vocal cords twitching, but not in a full VCD spasm, at that moment in time. She recommended that we go to National Jewish Hospital, in Denver, Colorado.

Nat'l Jewish knows the most about VCD, so we immediately went there, where the doctors diagnosed my husband very quickly, using fiberoptic laryngoscopy.

Two years later, I didn't suspect that I had VCD, at first, because we had been told that VCD was rare. Actually, VCD seems to be common. But, very few doctors know much about VCD, and this creates a big problem for undiagnosed VCD patients!

Also, the thick phlegm, from the bronchitis, had prevented me from recognizing that it was the vocal cords that were spasming closed, blocking my upper airway. I mistakenly thought it was just the phlegm that was preventing air from coming in.

For a week, I didn't sleep very much, because the coughing and/or terrifying breathing attacks (gasping for air) would wake me up from sleep, so I was afraid to go to sleep. I then began to suspect that I might also have VCD.

I lost several pounds that week, because every time I tried to eat, I would either cough, or, choke, from swallowing food and liquids "the wrong way"! The actual choking would then cause me to have a VCD attack!

I later found out that this temporary swallowing problem most likely was caused by the bronchial viruses migrating over to the vagus nerve.

I also tried to use the speech therapy that my husband had learned, 2 years earlier, and it worked for me. So, that is another reason I began to suspect that I might have VCD, like my husband.

So, we then went right over to Nat'l Jewish, and I was diagnosed with VCD, using laryngoscopy. I was immediately taught the speech therapy, by a good SLP (Speech & Language Pathologist). The speech therapy, with abdominal breathing was a wonderful tool, that helped me stop every VCD attack, right away!

How did we get over the VCD?

By using a combination of SYMPTOMATIC treatment (using the special Speech Therapy, with Abdominal/Diaphragmatic Breathing), plus working on ELIMINATING all our UNDERLYING CAUSES of the VCD:

1) To see a description of the special SPEECH THERAPY, with ABDOMINAL/DIAPHRAGAMATIC BREATHING, that we were each taught, please READ PAGE 4 of my VCD website, which is about how to stop every VCD attack right away. Here's a link to web-page 4:
http://cantbreathesuspectvcd.com/page4.html

We used the exhaled "f f f f f f" (like blowing out a stubborn candle), along with abdominal breathing. This worked for us, every time!

2) We each began to use the very helpful SINUS TIPS, and GASTRIC REFLUX TIPS, every day, and this helped us both, very much, to conquer the VCD within a few weeks! These tips are on web-page 10. Here's a link to page 10: http://cantbreathesuspectvcd.com/page10.html

3) We worked to improve our indoor air quality. For details about doing this,
please READ PAGE 5 and, read the SINUS TIPS, on page 10. Here is a link to web-page 5:
http://cantbreathesuspectvcd.com/page5.html

Marianne, the way we controlled ("cured") our VCD was to TRY TO ELIMINATE ALL OUR CAUSES of VCD!

When we weren't able to fully eliminate, or avoid all the causes, we tried to LESSEN the causes.

When we couldn't eliminate, avoid, or lessen a particular cause, we tried to gently treat such causes (without medications, -using natural remedies, whenever possible).

4) For me, this included using a FLUTTER VALVE, to help control the coughing associated with the bronchitis. Also, my husband and I used the SINUS TIPS, and the GASTRIC REFLUX TIPS, every day, which we still do, as "maintenance". My husband also had the bad tooth pulled (extracted). He decided: No more root canals, ever. And, we also paid more attention to improving our air quality.

I suggest that people who want to find out many of their causes of their VCD, can get some help with this, by:

reading pages 5 & 3 (and page 4), to help them find out many causes of VCD, triggers of VCD, things that aggravate the VCD ("aggravators"), and associated conditions that pre-dispose people to getting VCD. Here is a link to web-page 3: http://cantbreathesuspectvcd.com/page3.html

Marianne, I was happy to hear that you have created the first VCD self-help group, in Germany! I think your group will help many VCD patients! I think your website and group can inspire other people, in various countries, to also create VCD self-help groups!

Sincerely,
Carol