Hi I really could use some advice I’m reaching the end of my rope trying to deal with these issues, I first posted about 4 or 5 months ago and although some people really where kind and reached out offering their support I got discouraged about not getting any practical advice. I have horrible hypersalivation and at times I feel like what it must feel like to get water boarded. I have to spit constantly and to get it out I have to…how shall I put this violently cough it up if that makes sense, making guttural noises. I feel like my throat is being crushed and I’m increasingly having difficulty swallowing my salvia which at times makes it difficult to breathe and I’m gasping for air. I also have horrible nerve pain, when it’s at it’s worse my rib cage, spine, shoulder blades, arch of my left foot and my left toe feel like they are on fire, I have nerve pain in other areas but those are the most constant. Throughout my day I feel like I’m going to suffocate on my salvia.
A couple of months ago my Neurologist prescribed something called Rubinol for the hypersalivation and up until a week ago 3 1 mg pills made it tolerable then I had to start taking 4 then 5 the last 2 days I’ve been taking 7 and 8 and it’s not helping and the maximum dose is 8! My Neurologist doesn’t thing the Hypersalivation is related to my nerve pain issues but when the hypersalivation starts getting bad so does the nerve pain they get worse at the same time and recede at the same time. I’m getting a second opinion October 2nd. I had my first endoscopy about 3 months ago which revealed that I have Barrett’s esophagus and I’m on several meds for Gerd which never helped as I mentioned the only thing to date that helped was the Rubinol until a week ago. Before that my GP prescribed Elavil but that helped for less than a week. I had a second endoscopy about 3 weeks ago and when I went to get the results last week my Gadtronoligist said they didn’t have to dilate my esophagus, that it was ok and not causing me my symptoms. I also had Barium swallow study which revealed I have something called Esophageal dismolitity.
I’m still waiting for my insurance to approve a speech therapist. I’ve had a brain Mri which my Neurologist said ruled out MS he also did a nerve conductivity test which revealed pinched nerves in my neck. I’ve seen a Rheumatologist and had bloodwork which ruled out auto immune diseases. I had a CT scan of my neck which found a 1 cm tumor and a 5 mm tumor on my trachea although although apparently that was a misdiagnosis because in the notes it recommends a isolated CT scan of my chest which found that my trachea and airways are clear and their is no mention of tumors in the diagnosis report.
Tonight was the 3rd time I’ve gone to 3 different ER’s because I feel like I’m going to suffocate on.my salvia after taking my blood pressure and doing bloodwork which was ok they discharged me!
I was rereading the report of my CT Angiography of my neck before going to the ER and had never noticed that it says in my history that I had Cerebral infarction which I had to Google to find out it means stroke which I have no recollection of having I panicked and then although my memory is bad I remembered my Neurologist talking about what I think was white matter that the brain Mri revealed and then his asking me if I use to use cocaine when I was younger which regrettably is true as well as Crystal meth Im now clean and sober and attend A.A. meetings every night. It’s hard to wrap my head around the thought that my previous addictions concluding a heavy smoking habit are likely the reasons for my health issues. I stopped smoking cigarettes about 22 months ago but at times I think I did this to myself.
I was prescribed oxycodone 7.5 mgs and asked my sponsor how he felt about it and he was ok with ut unfortunately after it giving me relief initially 3 7.5 pills now basically give me very little relief and I’m not sure if the pain would be so much worse if I wasn’t taking them or if opioids just are not effective for what I have and if it’s worth the nausea, headaches and feeling tired all the time.
I’m really getting desperate for some answers and not sure how much longer I can deal with the pain plus I fear that I’m going to suffocate on my salvia in the not too distant future my next Doctor’s appointment is with a ENT on the 18th of this month and since my symptoms have progressively gotten worse this week especially the hypersalivation, feeling like I’m being choked and difficulty swallowing that I’m not going to make it that long even water is difficult to swallow the last few days and eating food really hurts!
I really appreciate any comments anyone might have.
I’m also going to give the ER at USC county a shot I’ve been told that although it’s going to be a very long wait that they do comprehensive testing and they likely will admit me for observation…does anyone have experience with them or knowledge about that?