JakeJohnson008
12-29-2004, 11:16 PM
Right now I feel so depressed and disgusted by this disease I have that it pervades every aspect of my life and prevents me from being the person I want to be. If i can't get rid of it or at least alleviate it, i'm gonna feel only half-alive for the rest of my life. I'm at the breaking point...
Ok, I have this really strange disorder where I basically get hypertension in my upper throat/back of tongue (globus hystericus). What happens is this area gets all tightened up and uncomfortable. The pain dominates my consciousness, and I am unable to function normally as a human being.
(I.) Here is an overall description of the symptoms, with the most important symptoms marked by star chains of designating magnitude (*):
- Sore tongue (esp. the back of it)**
- Sore jaw *
- Oral discomfort (There seems to be no natural, relaxing position that my lips, teeth, and tongue automatically lock into place. I am constantly aware of their positions when this disease is severe and I can't relax the tension in them) ****
- Dry lips *
- Aching teeth *
- Sore eyes *
- Poor facial complexion **
- Hypersalivation (overproduction of saliva) ****
- Globus Hystericus *****
- Foamy, bubbly, sticky saliva (as opposed to normal runny, consistent drool) ****
- Difficulty swallowing (although there is plenty of juice available, it's hard to get it down naturally. I take a long time to eat meals) ***
- Fatigue and languishness ***
- Insomnia (It's impossible to get to sleep when the symptoms of my disease are severe, but after a large snack i feel very tired and can fall to sleep easily) **
- Trouble talking (My voice has a sort of saturated, liquidy quality instead of a vibrant, resonating, smooth substance. Talking releases extra saliva and makes me have to swallow, increasing discomfort.) ****
- Chest pain (feels like my skin on my chest over the top/center of my left lung is stretched very tight across the bones of my ribcage, a sort of tearing sensation. It's bad when i eat only a little for a sequence of a few days instead of my normal big meals. If i sit still for awhile the tearing pain settles out and almost disappears, but when i make sudden movements it flares up) ***
- clumsiness, throat discomfort, awkwardness ****
- lack of appetite and abnormal signals from my stomach (I hardly ever feel hungry, but i can almost always eat a meal. I use the severity of my oral discomfort to calibrate when I need to eat and when I am ok. My stomach hardly ever rumbles, and when it does, i usually feel relaxed and it feels almost good).
- [others that don't come to mind immediately]
(II.)Now I am going to list what aggrivates my condition and what gives me relief. I'll order them from top to bottom to show the magnitude of aggrivation/relief:
LIST I: AGGRIVATORS
TOP: LEAST POTENT/LEAST AGGRIVATING
- standing in a shower
- gradual accumulation of tension over the course of the day
- heavy, grating, exaggerated
- talking
- drinking water (esp. cold water) (esp. sipping [as opposed to chugging])
- social situations, being in crowded places with bright lights, or giving a speech (although sometimes at the podium i can get very relaxed)
- eating a small snack (a cereal bar) and not eating anything else for awhile
- drinking orange juice
- chewing gum
BOTTOM: MOST POTENT/MOST AGGRIVATING
LIST II: RELIEVERS
TOP: LEAST POTENT/LEAST RELIEF
- listening to music (atmospheric)
- sitting in a supportive recliner or lying on a hard surface so my back is supported well
- lying down flat on such a surface/ meditative relaxation
- chewing gum (sometimes it gives me a dynamic equilibrium position for my mouth, teeth, and tongue, while other times it just makes that knot on my throat clench up intensely. It has more of the negative effect at the beginning when the juices are still in the gum, and more of the positive effect afterwards. However, sometimes the negative effect stays and keeps incrementing itself over time, forcing me to spit out my gum. Gum provides more of a postive effect when i have a waste basket near to spit saliva into periodically.)
- listening to music (with headphones)
- sauna/ hot bath
- absorbing activities (video games, sports, drawing, etc.) that take up my concentration so that I can't think about my symptoms. Then when i take breaks during these activities, I notice a decline in my symptoms
- eating process (chewing and swallowing bites of dry foods)
- eating large meals/snacks (esp. those consiting of dry foods like popcorn)
- sleep (i feel like a god when i wake up from a good sleep and am still groggy, although this sensation deteriorates with rapidity)
- drinking beer/ mild intoxication (almost complete relief, although chewing gum while intoxicated still creates minor tension)
BOTTOM: MOST POTENT/MOST RELIEF
(III.) Ok, now i will create a sort of timeline to show the progression of this disease. In junior high, grades 7-8, I experiended somewhat intense heartburn
after eating chili about 3 times, even though I can eat chili now without much of a problem. Then during these years I had about 2 or 3 of these really wierd episodes where I would do the following: I would wake up in the middle of the night with a searing pain in my chest. Then i would crawl on all fours, an inch at a time, down the stairs and to the fridge. Then i would pour myself a few glasses of milk and eat about a half box of dry cereal. Then i would feel ok again. But the pain was so bad initially I thought I was going to die. Once i sat on the stairs crying, unable to move because the pain would flare up once again. Then I pulled myself together and got to the fridge. I didn't think much of these episodes back in the day and so i never told anyone. I remember these nights i had been kind of hungry before going to bed, but I hadn't eaten anything, if i remember correctly. Now I always eat a large snack of dry foods before bed.
In sophomore year I remember riding the bus home and just drooling all over the floor one day. usually I would swallow all the saliva that welled up in my mouth, but this would greatly accumulate tension. Letting it fall down was less clenching. I sat with my head down and mouth open, and created a sanddollar-sized puddle of saliva on the floor.
Also in sophomore year, i remember the progression of this pain building up over the course of the day. In first period and homeroom, i was only mildly uncomfortable. In second period, the symptoms started to dominate and i felt moderately tense. In third period, i felt like complete **** and just watched the clock in continuous pain. Then at lunchtime i would cram food down and be alright through fifth and sixth periods. Then at seventh and espeically eighth i was again full of tension and pain. The ride home was even worse.
In junior year, i remember doing homework at a desk in my room with a waste basket right beside me. I would spend three hour sessions reading from textbooks or doing homework, and spitting/drooling into the waste basket every five minutes or so with a mouth full of saliva. It was so distressing and uncomfortable that i was very inefficient, and i took frequent breaks to play video games and just try to chill out from the tension.
Now i have this under control some of the time. I don't eat breakfast, and that actually helps me to relax although i do feel faint. If i eat massive meals, i at least feel euphoric for part of the day. I snack on goldfish, teddy grams, etc. like a madman and that helps although it is unhealthy.
Actually right now I am feeling pretty good, so it is hard to be any more precise than that. I'll update this later. The periodic (almost every day at certain times more than others) presence of this disease is like a ball and chain on my ankle, preventing me from doing what i wanna do with my life. It makes clam up instead of being talkative, etc. If anyone can offer some insight, it would be very helpful. I am visiting a doctor next tuesday, but if anyone here can help give me some feedback before i go, it would be much appreciated. Thanks, and have a good one.
Ok, I have this really strange disorder where I basically get hypertension in my upper throat/back of tongue (globus hystericus). What happens is this area gets all tightened up and uncomfortable. The pain dominates my consciousness, and I am unable to function normally as a human being.
(I.) Here is an overall description of the symptoms, with the most important symptoms marked by star chains of designating magnitude (*):
- Sore tongue (esp. the back of it)**
- Sore jaw *
- Oral discomfort (There seems to be no natural, relaxing position that my lips, teeth, and tongue automatically lock into place. I am constantly aware of their positions when this disease is severe and I can't relax the tension in them) ****
- Dry lips *
- Aching teeth *
- Sore eyes *
- Poor facial complexion **
- Hypersalivation (overproduction of saliva) ****
- Globus Hystericus *****
- Foamy, bubbly, sticky saliva (as opposed to normal runny, consistent drool) ****
- Difficulty swallowing (although there is plenty of juice available, it's hard to get it down naturally. I take a long time to eat meals) ***
- Fatigue and languishness ***
- Insomnia (It's impossible to get to sleep when the symptoms of my disease are severe, but after a large snack i feel very tired and can fall to sleep easily) **
- Trouble talking (My voice has a sort of saturated, liquidy quality instead of a vibrant, resonating, smooth substance. Talking releases extra saliva and makes me have to swallow, increasing discomfort.) ****
- Chest pain (feels like my skin on my chest over the top/center of my left lung is stretched very tight across the bones of my ribcage, a sort of tearing sensation. It's bad when i eat only a little for a sequence of a few days instead of my normal big meals. If i sit still for awhile the tearing pain settles out and almost disappears, but when i make sudden movements it flares up) ***
- clumsiness, throat discomfort, awkwardness ****
- lack of appetite and abnormal signals from my stomach (I hardly ever feel hungry, but i can almost always eat a meal. I use the severity of my oral discomfort to calibrate when I need to eat and when I am ok. My stomach hardly ever rumbles, and when it does, i usually feel relaxed and it feels almost good).
- [others that don't come to mind immediately]
(II.)Now I am going to list what aggrivates my condition and what gives me relief. I'll order them from top to bottom to show the magnitude of aggrivation/relief:
LIST I: AGGRIVATORS
TOP: LEAST POTENT/LEAST AGGRIVATING
- standing in a shower
- gradual accumulation of tension over the course of the day
- heavy, grating, exaggerated
- talking
- drinking water (esp. cold water) (esp. sipping [as opposed to chugging])
- social situations, being in crowded places with bright lights, or giving a speech (although sometimes at the podium i can get very relaxed)
- eating a small snack (a cereal bar) and not eating anything else for awhile
- drinking orange juice
- chewing gum
BOTTOM: MOST POTENT/MOST AGGRIVATING
LIST II: RELIEVERS
TOP: LEAST POTENT/LEAST RELIEF
- listening to music (atmospheric)
- sitting in a supportive recliner or lying on a hard surface so my back is supported well
- lying down flat on such a surface/ meditative relaxation
- chewing gum (sometimes it gives me a dynamic equilibrium position for my mouth, teeth, and tongue, while other times it just makes that knot on my throat clench up intensely. It has more of the negative effect at the beginning when the juices are still in the gum, and more of the positive effect afterwards. However, sometimes the negative effect stays and keeps incrementing itself over time, forcing me to spit out my gum. Gum provides more of a postive effect when i have a waste basket near to spit saliva into periodically.)
- listening to music (with headphones)
- sauna/ hot bath
- absorbing activities (video games, sports, drawing, etc.) that take up my concentration so that I can't think about my symptoms. Then when i take breaks during these activities, I notice a decline in my symptoms
- eating process (chewing and swallowing bites of dry foods)
- eating large meals/snacks (esp. those consiting of dry foods like popcorn)
- sleep (i feel like a god when i wake up from a good sleep and am still groggy, although this sensation deteriorates with rapidity)
- drinking beer/ mild intoxication (almost complete relief, although chewing gum while intoxicated still creates minor tension)
BOTTOM: MOST POTENT/MOST RELIEF
(III.) Ok, now i will create a sort of timeline to show the progression of this disease. In junior high, grades 7-8, I experiended somewhat intense heartburn
after eating chili about 3 times, even though I can eat chili now without much of a problem. Then during these years I had about 2 or 3 of these really wierd episodes where I would do the following: I would wake up in the middle of the night with a searing pain in my chest. Then i would crawl on all fours, an inch at a time, down the stairs and to the fridge. Then i would pour myself a few glasses of milk and eat about a half box of dry cereal. Then i would feel ok again. But the pain was so bad initially I thought I was going to die. Once i sat on the stairs crying, unable to move because the pain would flare up once again. Then I pulled myself together and got to the fridge. I didn't think much of these episodes back in the day and so i never told anyone. I remember these nights i had been kind of hungry before going to bed, but I hadn't eaten anything, if i remember correctly. Now I always eat a large snack of dry foods before bed.
In sophomore year I remember riding the bus home and just drooling all over the floor one day. usually I would swallow all the saliva that welled up in my mouth, but this would greatly accumulate tension. Letting it fall down was less clenching. I sat with my head down and mouth open, and created a sanddollar-sized puddle of saliva on the floor.
Also in sophomore year, i remember the progression of this pain building up over the course of the day. In first period and homeroom, i was only mildly uncomfortable. In second period, the symptoms started to dominate and i felt moderately tense. In third period, i felt like complete **** and just watched the clock in continuous pain. Then at lunchtime i would cram food down and be alright through fifth and sixth periods. Then at seventh and espeically eighth i was again full of tension and pain. The ride home was even worse.
In junior year, i remember doing homework at a desk in my room with a waste basket right beside me. I would spend three hour sessions reading from textbooks or doing homework, and spitting/drooling into the waste basket every five minutes or so with a mouth full of saliva. It was so distressing and uncomfortable that i was very inefficient, and i took frequent breaks to play video games and just try to chill out from the tension.
Now i have this under control some of the time. I don't eat breakfast, and that actually helps me to relax although i do feel faint. If i eat massive meals, i at least feel euphoric for part of the day. I snack on goldfish, teddy grams, etc. like a madman and that helps although it is unhealthy.
Actually right now I am feeling pretty good, so it is hard to be any more precise than that. I'll update this later. The periodic (almost every day at certain times more than others) presence of this disease is like a ball and chain on my ankle, preventing me from doing what i wanna do with my life. It makes clam up instead of being talkative, etc. If anyone can offer some insight, it would be very helpful. I am visiting a doctor next tuesday, but if anyone here can help give me some feedback before i go, it would be much appreciated. Thanks, and have a good one.
Sponsor
Meridith
01-05-2005, 01:22 PM
That is alot of stuff and I feel for you. I just don't know what to say other than it does sound like extreme anxiety. I am sure the Doctor will help. Make sure you don't miss the appointment and please know that I hope your life will get better.
JakeJohnson008
01-07-2005, 04:26 AM
That is alot of stuff and I feel for you. I just don't know what to say other than it does sound like extreme anxiety. I am sure the Doctor will help. Make sure you don't miss the appointment and please know that I hope your life will get better.
Thanks. Anxiety definitely exaggerates it, but it's still very bad even when i am by myself and have nothing to be anxious about. Such as taking a walk by myself, i feel terrible, worse than i do in many social situations. A lump in my throat that i cant swallow down. And if i didn't feel this, i would be able to get up and give a speech in front of anyone. This pain just chains me down.
I went to the doctor, and he wrote 'DYSPHAGIA' on the med sheets. I'm not sure if he's correct, but at least it's encouraging that someone listening to my story can use a single word to describe all the pain i feel.
He couldn't do anything or tell me anything except to schedule a videofleuro barium swallow test for me tomorrow. Then he says he'll send me to a speech therapist or something. He believes something is wrong with my epiglottis, perhaps.
Thank God for beer. I can at least enjoy life sporadically. When I'm drunk, people love me and i love life. Everything is great. I don't feel any tension at all.
If they figure out what's wrong with me tomorrow, i'll live an awesome life. Otherwise, it'll probably stay hellish but at least i'll try to make something of it. Thanks for the reply, and thanks to those who read but dont know how to reply. I myself don't even know how to reply. I wonder if God does.
Thanks. Anxiety definitely exaggerates it, but it's still very bad even when i am by myself and have nothing to be anxious about. Such as taking a walk by myself, i feel terrible, worse than i do in many social situations. A lump in my throat that i cant swallow down. And if i didn't feel this, i would be able to get up and give a speech in front of anyone. This pain just chains me down.
I went to the doctor, and he wrote 'DYSPHAGIA' on the med sheets. I'm not sure if he's correct, but at least it's encouraging that someone listening to my story can use a single word to describe all the pain i feel.
He couldn't do anything or tell me anything except to schedule a videofleuro barium swallow test for me tomorrow. Then he says he'll send me to a speech therapist or something. He believes something is wrong with my epiglottis, perhaps.
Thank God for beer. I can at least enjoy life sporadically. When I'm drunk, people love me and i love life. Everything is great. I don't feel any tension at all.
If they figure out what's wrong with me tomorrow, i'll live an awesome life. Otherwise, it'll probably stay hellish but at least i'll try to make something of it. Thanks for the reply, and thanks to those who read but dont know how to reply. I myself don't even know how to reply. I wonder if God does.
JakeJohnson008
01-07-2005, 04:28 AM
btw guys i am pretty convinced that this is not GERD. The epicenter of my painful lump in throat sensation is located at where my epiglottis is, according to my doctor, almost a foot above my UES [upper esophogeal sphincter]
by the way have a nice day and enjoy these waving guys:
:wave: :wave: :wave: :wave: :wave: :wave: :wave:
by the way have a nice day and enjoy these waving guys:
:wave: :wave: :wave: :wave: :wave: :wave: :wave:
JakeJohnson008
01-09-2005, 02:14 AM
Ok, i did the videofleuro barium swallow. results: negative. I swallow completely normally.
When i pinpointed the source of my tension/pain on the video monitor, the Dr. said i was pointing to my epiglottis exactly. The next step is to see an ENT and get them to scope out my epiglottis with a video camera.
However, while searching the internet, i found a set of symptoms that match mine EXACTLY. I have all of these, some more than others. Check this out! :
http://www.nexiumresearch.com/cricopharyngeal_spasm.html
I think I may have this 'cricopharyngeal spasm'. Unfortunately there is no real treatment/cure for it, at least according to this site. Can you guys give me some input on this please? Thanks so much. If i don't solve this problem, i cant live life. I'm seriously running out of gas, ive had this for 4 years. This year im going all out and exhausting all options, but if i get nowhere, i may give up. so please help! know that you may save a life.
Thanks.
:jester:
When i pinpointed the source of my tension/pain on the video monitor, the Dr. said i was pointing to my epiglottis exactly. The next step is to see an ENT and get them to scope out my epiglottis with a video camera.
However, while searching the internet, i found a set of symptoms that match mine EXACTLY. I have all of these, some more than others. Check this out! :
http://www.nexiumresearch.com/cricopharyngeal_spasm.html
I think I may have this 'cricopharyngeal spasm'. Unfortunately there is no real treatment/cure for it, at least according to this site. Can you guys give me some input on this please? Thanks so much. If i don't solve this problem, i cant live life. I'm seriously running out of gas, ive had this for 4 years. This year im going all out and exhausting all options, but if i get nowhere, i may give up. so please help! know that you may save a life.
Thanks.
:jester:
suzyshop1
01-15-2005, 11:09 PM
Dont rule gerd out it could still be whats wrong.There are many ppl with gerd who only have the swallowing problem.Please hang in there till you get some answers from the doctor.I can understand how you feel about living with this problem for the rest of your life.Any sickness thats hasnt been diagnosed can be a scary thing,it can play games with your head.Whats tests have you had done,what about meds?Sometimes a diagnoses can take time and many tests,dont give up before you've started.Please keep us posted.Take care.
polettoc
03-10-2006, 01:41 PM
Hi,
I am a scientist who studies the laryngeal control and swallowing. I can not legally give you medical advice, but I have sympathy for you so I will try to help. Although cricopharyngeal spasm would probably not explain all of your symptoms, it is possible that treating it could help you. The treatment available for it is the injection of botulinum toxin (Botox) into the cricopharyngeus (CP) muscle to weaken it. This provides a temporary fix because the effect wears off after a couple of months. If this proves especially helpful, you could opt for a cricopharyngeal myotomy, where the CP muscle is cut to permanently weaken it. The CP is the muscle that is primarily responsible for closing the UES. It should be possible to find an ENT who can give you a definitive diagnosis on this. Off the top of my head, I would have you swallow orange juice (a major trigger for you) while you have a manometer (pressure measuring device) in your UES. If CP spasm is the problem, there should be an unusually high UES pressure when you swallow a trigger substance versus when you swallow a non-trigger substance. By the way, it does make sense that orange juice should be a trigger substance. My best advice is to go see a good ENT. If that fails to get you anywhere, see a good neurologist. There is a lot going on in your case and a neurologist might be best able to piece it all together. Best of luck to you.
I am a scientist who studies the laryngeal control and swallowing. I can not legally give you medical advice, but I have sympathy for you so I will try to help. Although cricopharyngeal spasm would probably not explain all of your symptoms, it is possible that treating it could help you. The treatment available for it is the injection of botulinum toxin (Botox) into the cricopharyngeus (CP) muscle to weaken it. This provides a temporary fix because the effect wears off after a couple of months. If this proves especially helpful, you could opt for a cricopharyngeal myotomy, where the CP muscle is cut to permanently weaken it. The CP is the muscle that is primarily responsible for closing the UES. It should be possible to find an ENT who can give you a definitive diagnosis on this. Off the top of my head, I would have you swallow orange juice (a major trigger for you) while you have a manometer (pressure measuring device) in your UES. If CP spasm is the problem, there should be an unusually high UES pressure when you swallow a trigger substance versus when you swallow a non-trigger substance. By the way, it does make sense that orange juice should be a trigger substance. My best advice is to go see a good ENT. If that fails to get you anywhere, see a good neurologist. There is a lot going on in your case and a neurologist might be best able to piece it all together. Best of luck to you.

