Windpipe Seizures

I don’t think this is the proper medical term for what I experience considering the proper name of the windpipe is Trachea. But, this is what I call them when talking to my doctor and he has yet to correct me. No matter what I call them they are scary! Even scarier than having one is knowing I’ve had them since I was a kid. Medically treated as an asthma attack. But, they aren’t asthma attacks.

I loved to cut the grass as a kid. Something about music coming through headphones and the hum of the mower was relaxing to me. I didn’t like what came with it though. The wheezing, coughing, sneezing and itchy eyes. I have a grass allergy but you couldn’t keep me from it. As I got older either things changed or I started noticing patterns. These wheezing episodes were happening at random times for no apparent reason. I went to the doctor and he told me it was nothing more than anxiety and sent me home with Xanax. That seems to be the default answer for everything. I wasn’t convinced, but I said okay and took the Xanax. Needless to say, it didn’t help.

In 1996 I had switched primary doctors and went in after I had one of these wheezing episodes and told him, “I know everyone thinks I just have anxiety, but please listen to me. I can’t breathe.” He decided to send me to an allergist. My allergy test proved I am allergic to just about every airborne particle including; tree pollen, dust, ragweed, grass, etc.. It showed my food allergies are extensive also they include; legumes (peanuts, cashews, peas, green beans, etc…), wheat, gluten, soy, dairy, eggs, plums, mushrooms and the list goes on. I’m not talking about food intolerance’s these are actual Immunoglobulin E (IgE) responses from my body. My immune system also cross reacts to certain foods. The foods are so similar that my body mistakes it for the actual allergen and reacts. For example, my test showed I’m allergic to plums but not peaches. But, they are so similar that I can’t eat a peach because my immune system mistakes it for a plum. Cherry’s are another one that is similar but I can eat those. The human immune system is complicated! And, yes, we did try shots but they didn’t work. I am still a walking allergy attack to this day!

After learning I was allergic to just about everything out there my allergist referred me to a pulmonary doctor. He said my allergies were so bad and we needed to confirm or rule out an asthma diagnoses and start a plan of action since the shots weren’t working. When I saw the pulmonologist, I had one of these “asthma attacks” in his office. He listened to my lungs and looked confused. I asked him what was wrong and he said he didn’t know. He ordered a chest x-ray and PFT (pulmonary functions test) immediately. I was scared to say the least. The chest x-ray was clear. The PFT test showed some things he couldn’t explain. It showed I was getting air in, but not out. He gave me an emergency inhaler (Proventil) to use and then did the test again. It only showed slight improvement. He said it was neither indicative of asthma, COPD nor any other pulmonary disorder. This doctor had 20 years’ experience and was perplexed. He gave me a script for Proventil and a diagnosis of “mild asthma.” Even though he was not sure what it was, no other testing was done.

After I had the tonic-clonic seizure on August 7, 2013 we were told a lot of things that didn’t make sense before would now. So, we started looking at everything. Ben and I were both so out of it and trying to come to terms with what happened and the aftermath that it took about 3 or 4 months until we realized I wasn’t using that inhaler anymore. I hadn’t had an “asthma attack” since the seizure either. We mentioned it to my epileptologist at one of my follow up visits and I said “I don’t have asthma, do I. Those were seizures.” He didn’t say no. He is very quick to say “NO” when I’m wrong, but he didn’t. That scared me! I had used an unneeded inhaler for over 20 years. Had it damaged my lungs, would problems come out years from now; the thoughts that went through my head were running rampant. I decided there was nothing I could do about it and I should just be thankful they were gone. Or so I thought…

About a year later, out of the blue, my throat instantly closed up and I began wheezing and gasping for air again. Ben noticed I was jerking, foaming and drooling. He said my face turns blood red. He timed it and while it lasted about a minute I was stuttering and couldn’t put sentences together for a long time after. I was exhausted and wanted to do nothing but sleep. When I went to my next follow up visit I mentioned it as a “windpipe seizure” in the mix of the other issues I was experiencing at that time. Again, my doctor did not tell me I was wrong. So that is my official name for them and we treat them like we do any other kind. We track them, time them and report back to my doctor.

I am still trying to find some sort of trigger, but haven’t found one yet. They hit suddenly and out of the blue. I don’t have any warning one is coming. They are the scariest thing that happens to me with epilepsy. It feels like I am going to suffocate and die. I’m not getting any air. And, I am fully aware! I get really scared if Ben is gone and they happen. I try not to focus on them or worry about when the next one will happen. I average about one of these a month in addition to the other types I have daily. I know that doesn’t sound like very many but when my airflow is completely cut off because my windpipe is convulsing one of these EVER is way too many.

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3 Responses to Windpipe Seizures

  1. Traci Maxwell says:

    I just had a VNS in May. The Vagel nerve control the nerve, your throat and heart. Every 5 min it goes off & I sort of cough a little and get a tickle in my throat. Well, I was at CVS dropping off a RX at the drop off counter when I thought, this thing started closing my throat off. I couldn’t breathe. I was drooling. Could hardly stand up. But I was cognizant of every thing going on around me. I had no post ictal period. My dr said that has never happened to him before. But what you described was exactly what was going on with me. I thought I was dying. My phone was off otherwise I would have called 911.

  2. Pingback: I Know Someone Who Is Severely Epileptic - My Purple Friends

  3. Pat says:

    My son has the same experience. His trigger is eating a high salt meal and then drinking too much water. Also, if he doesn’t have any food with sodium in it first thing in the morning. It’s scarier than a tonic clonic seizure.

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