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Hypersalivation, difficulty swallowing and breathing
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?
Thank you!
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@jcbonne1 It might be worth asking your neurologist what the effect of the pinched nerves in your neck could be and where do you expect to have a deficit? I'm wondering if these are nerves that go to the salivary glands that could be causing issue. You also talked about what you think is a misdiagnosis on an imaging report. You may want to ask your neurologist about that too. Sure, mistakes can be made, but it would be worth checking into it with someone who can give you a medical opinion. Potentially, a mass sitting on your trachea could be in the thyroid which is on the front of it. Nodules are common with thyroid disease and I have them with Hashimotos which created multiple benign nodules and that was confirmed as non cancerous by a needle biopsy.
You also mention rib, spine and shoulder blade pain. I have had similar pain from thoracic outlet syndrome that causes tight muscle and fascia from my jaw through my chest, shoulder blades and down to my hips. I also did have a spine problem in my neck contributing to all of that and shoulder blade pain is also common with a cervical spine issue. The fascia can get overly tight all through your body and it is a net that extends through everything. A neurologist may be able to diagnose TOS also, and usually the specialists in this are thoracic surgeons. TOS can be more common in spine patients when a spine injury was involved or it could be related to physical build or repetitive stress.
Physical therapy with myofascial release is my treatment method for TOS. TOS can also cause a tight jaw and that is connected to the neck. I wonder if that could be related to the issues with your salivary glands. Do you have neck pain and tightness, and tightness in your jaw or a misalignment like TMJ? You can have choking sensations in your neck from a spine problem, and there is a bone that sits in front of the spine called the hyoid that is involved in swallowing. You could have muscle tightness around that. When I was having pain from a collapsed disc in my neck, it often felt like a choking sensation. Spine issues cause muscle spasms that tend to pull on neighboring muscles.
Here is our discussion on Myofascial Release. A physical therapist who specializes in MFR might be able to assess and say if this is a physical problem.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988
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3 ReactionsHello @cal1972, Welcome to Connect. I'm sure it must be distressing not knowing what's causing the hypersalivation and the swelling. There is another discussion on hypersalivation started by @jcbonne1. I'm tagging our moderator @ethanmcconkey to see if we should combine your discussion with the following discussion. @jenniferhunter my also have some thoughts to share with you.
> Groups > Brain & Nervous System > Hypersalivation, difficulty swallowing and breathing, nerve pain
-- https://connect.mayoclinic.org/discussion/hypersalivation-difficulty-swallowing-and-breathing-nerve-pain/
Medical News Today has some information that may be helpful -- Everything you need to know about hypersalivation
-- https://www.medicalnewstoday.com/articles/318728.php
If you are able, can you let us know the outcome of your upcoming Mayo appointment?
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1 ReactionHello everyone, I’m finally going to post about my health issue that I’ve been struggling with for 3 years. Out of nowhere, in 2015-16 I began hyper salivating. Initially it started off intermittently then progressed to nonstop salivating. It never really subsided but would be worse if I drank hot coffee, so I tried to lay off to avoid making it worse. The salivating has caused me a tremendous amount of frustration since it has affected my ability to speak to people, I have to constantly stop talking to swallow which has made me very self conscious. In my line of work, I have to interact with a lot of clients and I’ve found myself avoiding situations where I would be speaking to a group. As if the salivating was not enough of an issue, a few months after it started I began to notice a slight bump on the inside of my bottom lip. No big deal initially, I thought I must have bit my lip or something. It subsided for a while but then came back. Initially it was just my bottom lip but began to spread to my top lip. In the middle of 2016, the inside area of my lips became permanently swollen. It does not hurt at all, has no redness or signs of irritation. So I lived with the problems for quite a while, then my tongue also became slightly swollen. It didn’t just swell up immediately but was gradual, it never became so enlarged that it was an emergency issue but has remained permanent. So I went to a rheumatologist in 2018 hoping for a solution, he’s one of the best around and was very thorough. He ran all kinds of tests but had no idea what was causing the symptoms. He referred me to an allergist and he could not come up with any answers as well. So since last summer my face has begun to swell, mostly above my top lip under my nose and then out through my cheeks. I’ve never tried any meds because there has never been anyone who suggested any solution. I’m going to an appointment at Mayo next week but I’d like to know if anyone has ever experienced all these symptoms together. It’s very distressing and I’d appreciate any help or insight that can be offered. Thank you.
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1 ReactionHi @cal1972 I wanted to join @johnbishop in welcoming you to Connect. You may have noticed I moved your post to this existing discussion on hyper-salivation as John suggested. Simply click VIEW & REPLY in your email notification to get to your post.
That must be so frustrating to see your symptoms continually increase, while seeing new ones arise. Have you been given any treatment or suggestions to help with the hyper-salivation? @jcbonne1 may be able to offer suggestions and share their story.
As John mentioned, please let us know how your appointment at Mayo goes next week.
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2 ReactionsI've also experienced hypersalivation for over a year now. And some difficulty swallowing although I drink water or some liquid that then helps. And flem from my throat periodically during the day. I've been to primary care, ENT, and all the tests you mention, including Botox. Nothing has helped...at all. I don't have the drug or smoking history you have (or your neurological symptoms. That must be very painful along with the salivation. So I don't think I have the severity of the symptoms you describe but I do have the hypersalivation and for over a year. And nothing seems to help. So like yourself, I feel I've run out of options and am thinking I need to step out of the health care system I use and look elsewhere.
Rich Passoth