One breath at a time, one day at a time
I am a crazy, fun loving, wife, mom, with a sensitive side, am strongly motivated, to trusting, anxiety ridden, with a sprinkle of depression. I am a police wife, a veterinary professional 17y strong, and suffering from androgenic alopecia, and burning mouth syndrome. I want to be a backbone and a helping hand for those who need it. I want to be able to share my stories and journeys. If I am able to help at least one person within my profession, or suffering from anything mentioned above, that is my why all!
Veterinary technician supervisor, mom, wife, LEOW
I want to start, by telling my experience with a horrible syndrome called burning mouth syndrome. I know right, who in the hell would ever have known a syndrome like this existed.
It all started one fine day in January 2020, I was at home relaxed no more stressed than the normal. Actually i was doing my best in a long time. Then out of no where, my tongue started having this horrible burning/tingling sensation. I freaked out I could not bare the pain and more annoying than anything. I thought was this a possible reaction to a medication or something I ate? As a few days went on it still continued but got worse, I had gotten some ulcers and also had a new metallic taste in my mouth. All my normal taste bud sensations all changed. At this point I got in with a PA who thought it may be thrush, but physically saw nothing wrong on exam. I was treated with fluconazole and to see if that helped. I think it was mental but I felt it helped some. I finished the course of medication and went back to see my PA, as i was not receiving and relief. My PA who then gave me a mouth rinse with lidocane and something called magic mouth rinse, this is what they give to cancer patients it is a compounded medication, Well as you can guess that didn’t help either.
I started my own trials of journaling all the food i ate and medication I’m on. I stopped my medication one by one for about one month at a time. Still nothing. The burning was getting worse and I still had no idea what was going on with me. It hurt to eat, have coffee, anything citrus…
Whelp, my PA and Doctor has now referred me to an ENT, I had an exam at the ENT with absolutely no diagnostics done. No culture, no swab cytology, no biopsy. The doctor did an oral exam, and then the ENT then gave me the same mouth rinse I have already been on, mouth rinse called magic mouth wash and referred me to another ENT, uh!
At this time is was super defeated, so upset in the faith of our health care system. The ENT did at this time tell me he thinks it’s something called burning mouth syndrome which It was outta his realm of expertise. I was Then referred to my second ENT at UT Southwest. The mouth wash helped but didn’t take the sensation away. I am now seeing my fourth doctor this ENT basically says the same exact thing, they physically see nothing wrong, but know I am feeling this horrible sensation of burning, this doctor prescribed the exact same medication as the other doctors had prescribed.
I am now being referred to a Oral Surgeon at this point. Okay, I am not goanna lie at this point I cried for days case I felt like a case (not a human) that no one understood how to help, and did not want to take the time nor day to try and help me find solutions. So once again I got passed around. I am about six moths into my journey at this point. I had a huge halt in finding help when covid hit (which was understandable) .
I am now, finally excited to see this Oral Surgeon, someone who can finally help me (at least that’s what the ENT said) hoping for an answer. I might add this started in January and it is now August. I see the oral surgeon and he gives me some hope he actually has ideas and some treatments he wants to try. One being a dexamethasone rinse, pepto bismol to coat my mouth when I eat, and a medication called capsasin which is compounded. After getting all these prescriptions nothing helped it actually made the symptoms worse. After meeting with my oral surgeon again to discuss what to do now, i get the dreaded well, I feel it best to refer you to another oral surgeon who knows more about this (I am now dying inside) . At this point I’m crying I don’t want to once again be tossed around I want help I want someone to truly listen to me. I explained all this to the doctor, but he just did not feel comfortable treating me with a syndrome he’s never really dealt with himself. As mad as I was, I did understand. I know at this point I am going to have to be my biggest advocate and start my own research on this syndrome.
I reach out on Facebook and fine a support group, this support groups consisting of over 5,000+ people all from around the world suffering from the same thing. All having the same experience with doctors, all of us basically being each other’s stepping stone, for help and understanding, being each other’s support when we felt as though we were alone. It is now November and after doing lots of research and searching for doctors who actually do specialize in this I am getting help, I am getting the pain managed and finally feeling back to my old self.
I am a 37y old female with no underlying issues and have found out this is actually a nerve issue. I am using this platform to share my experience to help others and to help others understand this horrible syndrome. One breath at a time, one day at a time.