Hi Cindy, I think by now you see that your truly not alone in suffering from this horrible condition. A few years ago I got my first episode, and it was the second most scariest thing I ever experienced. ( the "first" is for another day
. All I did was take a zip of my tea and BAMM! my throat had completely closed up. I couldn't get any air in, it was so bad that I was seconds away from fainting. It took three days to get over the headache I had from being deprived of air for that long. That year I had only two episodes, but now I pretty-well get these chocking fits once or twice a month.
The doctor visites were as disappointing as always... The first visite I was told I had something called Lingual-Dystonia. The doctor scratched his head and said it was very rare for an adult to get this. Usually in happens in children and they grow out of it. I was so happy to finally get a diagnose. HOWEVER... When I did my own research on L-D, I found out it's not at all what we have. Apparently it affects your tongue, it's spams to the point were you can't talk. But no chocking was mentioned, the only thing that matched my case was a trama to the neck can cause this condition.
So a month ago after having a really bad episode to were I hurt my knees from falling to the ground cause NO air getting in. I decided to see the doc again. Well long story short... Now he says it's either a reaction to the long term medications I've been on for my chronic neuro-condition.(which I can't stop) OR.. A sensitivity to the environment. In otherwards my allergies to life??? Lol
He told me that it's rare to faint from this, however if you do it's actually a good thing. Because the muscle will relax when your out, that way you'll automaticaly breath on your own. Right!.. easy for him to say that. He said that no matter how closed the muscle is, you have to try to breath out of your nose. It gives the muscle a chance to relax and it should open quickly. He also mentioned that you should always have water with you and to drink as much as you can to keep your throat moisturized. We also did the test where they put the camera in my troat, and they saw that my whole throat was extreamly red. Did you have a chance to do this test again and see if you were as raw as I am, in the back of your throat?
I quess you of all people can understand my fustration. Not much of a diagnose to be happy with. I'm trying to find a way to put together a community of people, to were we can support each other with this conditon. And my hopes is to get a large enough community, so we can petition for more research on this frightful-problem. Their are many people who suffer from this and have all been left to fend for themselves.
I wish you all the best and to keep strong. Remember to breath through your nose and try to remain calm when it happens, it will help to relax the muscle. I know thats the hardess thing to do in the moment. Keep returning to your doctor untill he find the reasons why this is happening to you. Then....Please let me know what he says.