completely miserable

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

lobstahguy
Regular Member


Date Joined Jul 2013
Total Posts : 332
   Posted 2/14/2014 12:31 PM (GMT -6)   
I think i am at the point of no return. I feel like i have permanent vagus nerve damage. Nothing works right anymore. My nose, sinuses and ears are all full and hurting, throbbing, runny, stuffy etc. and this morning when i didnt think it could get worse, my ears started to itch on top of everything else, i have a tooth ache. How do those of you with all this misery keep going. I am losing my mind.

DontStealMyBacon
Regular Member


Date Joined Jan 2013
Total Posts : 186
   Posted 2/14/2014 1:05 PM (GMT -6)   
The only way to feel better when you are sick is to find something to distract yourself with. It's not easy, and it doesn't necessarily always work, but it's definitely better than concentrating on all of your problems. If you can't figure out a way to solve your problems no matter how much you focus on them, then you should stop making mental notes of every new problem you have. The months leading up to my brain surgery when I was having multiple seizures every day were the most stressful months of my entire life. Focusing on the upcoming brain surgery only brought more and more stress, and it isn't exactly easy to say, "don't think about brain surgery," because that's not how it works.

To take your mind off of obsessions like GERD (or at least it is an obsession for me), you have to fill your mind with other ideas and tasks. For me, that means making myself as busy as possible. As a college student, I can sign up for so many things that my mind is too busy to think about the pain sitting in my throat, or the acid splashing onto my teeth. You can't make yourself not think about something, but you can change your focus to be on something else, or a lot of other things. Give it a try.
Right Temporal Lobectomy 4/5/12
Laparoscopic Nissen Fundoplication 12/17/13

Diagnosed with GERD, Eosinophilic Esophagitis, and Epilepsy.
Studying biomedical engineering to research a better fix to at least one of them.

musicchick581
Regular Member


Date Joined Jan 2014
Total Posts : 34
   Posted 2/14/2014 5:45 PM (GMT -6)   
Are you gluten intolerant or have food allergies? I know they can cause issues.

lobstahguy
Regular Member


Date Joined Jul 2013
Total Posts : 332
   Posted 2/14/2014 6:10 PM (GMT -6)   
Im too sick to focus on anything else. I try but it just doesnt work. I can barely get out of bed. Had my gallbladder out 2 months ago and was hoping that would help but it didnt. I have been on a gluten free diet for years. I have a candida infection from the acid blockers i was on for 3 months among other health problems that may or may not be from reflux. My story is so complex that the doctors dont even know what is happening. Many of my symptoms match silent reflux, but they came on overnight without and previous reflux problems. I literally woke up with a hoarse voice and lump in my throat when i had a Bravo probe attached to my esophagus. (they did this to fill a quota, told them i had to reflux and the Bravo probe showed that i didnt) Ive been put on a hundred different prescription meds in the past year. Sick and tired of being sick and tired. And in pain. p.s. i never feel heartburn pain

DontStealMyBacon
Regular Member


Date Joined Jan 2013
Total Posts : 186
   Posted 2/14/2014 11:12 PM (GMT -6)   
I didn't mean that I use it specifically for heartburn troubles, but rather for all medical problems that rise up for me. I've been on that many medications, and I've had the large variety of symptoms that you have had and similar patterns with seeing doctors that don't know how to treat you. You have a new job now. It's not easy to do, but I swear that it can work if you put all your effort into thinking about other things and trying to not let yourself take mental notes of new symptoms that come up. Find tasks to do to distract yourself, even if they aren't productive tasks.
Right Temporal Lobectomy 4/5/12
Laparoscopic Nissen Fundoplication 12/17/13

Diagnosed with GERD, Eosinophilic Esophagitis, and Epilepsy.
Studying biomedical engineering to research a better fix to at least one of them.

liang7079
Regular Member


Date Joined Dec 2013
Total Posts : 34
   Posted 2/15/2014 9:04 AM (GMT -6)   
Sorry to hear about what you are going through Lobstahguy, remember that lot of us are going through similar debilitating symptoms too - I have not been myself since last July from a fitness gym nut to not able to even get out of house and function normally.

Have you had pepsin level tested ? That seem to be the easiest way to confirm LPR (http://www.rdbiomed.com/peptest/resources/) Has any endoscopy been done to look for Hiatal Hernia etc. and manometry to test for UES/LES function?
gastro empty test and SIBO breathing test would be something I will hopefully get once I am back in the UK.

The strange thing for people like you and I is that even with LPR-like symptoms, NOTHING works like alkaline water, Viatmin D3 and yet taking betaine/pepsin capsules have not created any discomfort yet haven't seem to do much either?

So maybe it really is the nerves that we should be looking at, as over sensitivities from these nerves can affect LES closing,stomach acid production and also produce LPR-like symptoms when there is very little or even no irritants present in the throat. What really intrigues me is how patients with fine working LES and negative PH meter reading (especially in the throat) can still have LPR, even if it was caused by gas containing acid/pepsin then how were these produced and got up, and how do we eliminate them?

Another to be thankful, although it will be difficult to do, is to think that at least you are not in constant pain and can still move around, and that there might just be answer around the corner if you stick around a bit longer. Please let us know if you can get other tests and try things like betaine capsules and Iberogast (seem to improve gastro emptying which will probably eliminate the wanted gas)

Here's a pretty interesting video on a gal who HAD gastroparesis and GERD, the authenticity might not be verified but it's worth a try:
http://www.youtube.com/watch?v=1sCCNnSXj1o

lobstahguy
Regular Member


Date Joined Jul 2013
Total Posts : 332
   Posted 2/15/2014 10:18 AM (GMT -6)   
I am in constant pain. My larynx is so inflamed and the inflammation has spread into my sinsues, ears, and chest. I feel like im getting asthma now. I have horrible headaches, earaches, throat pain and weakness. I also think my liver is bad so there is more going on than just reflux. I was put on ativan a year ago for the globus sensation and that is probably making me sick too. There is just too much going on. Ive had the peptest and it showed high levels of pepsin. Did the Restech and the catheter malfunctioned. Tried the manometry and they couldnt get the tube thru my nose because my nose has been badly broken.

I was miserable when i just had the throat pain but when it went into my sinuses and chest everything got much much worse. I dont have the energy to get out of bed some days and even if i do, the headaches come on by afternoon and i have completely lost my voice so theres not much i can do.

lobstahguy
Regular Member


Date Joined Jul 2013
Total Posts : 332
   Posted 2/15/2014 10:19 AM (GMT -6)   
How do you not take mental notes of shortness of breath, severe ear aches, tooth aches, headaches that are like migraines? A throat that feels like its closing shut?

CaryF
Veteran Member


Date Joined Nov 2007
Total Posts : 505
   Posted 2/15/2014 10:52 AM (GMT -6)   
Hi Lobsta,

Please forgive me if this sounds overly simplistic. I don't mean to trivialize your problems.
You mentioned tooth ache. Have you considered a dental problem? Years ago I suffered chronic
sinus & throat infections for a year with many of the same symptoms you describe. It turned out to be a cracked molar that went undiagnosed by 3 dentists and their x-rays. Finally a 4th dentist found the culprit, pulled it & it cleared up almost immediately.

Just my $ .02 worth, trying to be of help.
Cary

corgislover
Regular Member


Date Joined Oct 2013
Total Posts : 22
   Posted 2/15/2014 11:11 AM (GMT -6)   
Lobstahguy - I've had many of the health issues you mention. I've been diagnosed with GERD/LPR by an ENT after many tests. The first issue I had was asthma and that was 3 years ago. I went to a pulmonary specialist, 2 ENTs, GI doc, and have been through numerous primary care physicians. One trip to the ER not too long ago for what I thought might be a heart attack (wasn't). Not too long ago I thought I might actually be dying from this. I've been on PPIs and had all of the side effects. I've been on asthma medicine and got thrush and severe fatigue. I've had the most success from lifestyle changes and diet changes. I went on Jaime Koufman's diet (Dropping Acid). It helped but I still had symptoms - especially phlegm - seems like everywhere. I've recently tried the Fast Tract (Heartburn) diet (Norman Robillard). I started eating the foods with low fermentation potential found in a chart in his book but I wasn't weighing the foods until a week ago. I bought a kitchen scale (digital) and started tracking the fermentation potential of the foods I'm eating. I'm also making a concerted effort to drink more water. I'm tracking that too. I'm keeping a food chart and write down how I feel at the end of the day. When you do that, you'll see patterns in what might be bothering you. I noticed that I had gas after eating eggs. Everybody is different and your triggers might be very different than mine. But it helps to write it all down. After a week of weighing the food and limiting foods with high fermentation potential, I can say that I'm feeling better. My digestive system has settled down. I had loose bowels for months (ever since the last PPI I tried). Much better now. I'm not belching as much as I was. My throat is not as sore as it was. My sinuses are clearer. I still have phlegm but I think that will be the last to go. I'm not choking on it like I was though. It remains to be seen how much better I'll feel but I plan to stay on this diet! Previously I had tried many diets and nothing seemed to matter much. I've given up dairy products, bread, most sugar and most recently eggs. It's a simple diet but I'm not hungry. I was trying to eat vegan but I've added back some meat (turkey and chicken). I've lost a lot of weight in the last 3 years. I started out at 162 pounds and I now weight about 105 (give or take). The weight dropped off me when I gave up dairy and bread. My headaches went away too - I rarely get them anymore. My symptoms are not completely gone. But they are better. And I've only started this diet. I know how discouraging this thing is and how hopeless one can feel. It's one step at a time and sometimes it doesn't feel like any progress is being made. You're in a bad place now and I can tell you feel very bad. If you haven't tried this diet, maybe you could try it. The book is on Amazon. I have Jaime Koufman's book too and still refer to it occasionally. I hope you find something that helps you because it sounds like you are just miserable. This is helping me so I wanted to share it with you.

I almost forgot to mention that I'm now using a toothpaste with neem in it and my gums and teeth feel much better. I recently had my teeth cleaned and she told me they looked much better too. They weren't near as sensitive as they usually are when I have them cleaned.

Sorry this is rambling a bit. I wanted to mention that you don't have to give up all of the things I've given up to be on the Fast Tract diet. I've given up diary because it's a problem for me. The same for bread and most sugar. You're just limiting the foods with a high fermentation potential. I wanted to clarify that because in reading my post it seemed like you had to give everything up!

Post Edited (corgislover) : 2/15/2014 10:14:47 AM (GMT-7)


DontStealMyBacon
Regular Member


Date Joined Jan 2013
Total Posts : 186
   Posted 2/15/2014 2:35 PM (GMT -6)   
lobstahguy said...
How do you not take mental notes of shortness of breath, severe ear aches, tooth aches, headaches that are like migraines? A throat that feels like its closing shut?


There are two ways that you can take mental notes of your health problems. The first way is just noticing them and getting upset that they are present. The second way is specifically paying attention to what your problems are, which can be useful if there is something that can be done about the problems but not so useful if all you do is make yourself upset. If you can make changes like changing your diet then there is a valid reason to pay some attention to when things get better or worse, but still not much reason to stack up everything that is going wrong like you have done with your long list of symptoms. I have had times where I have had long lists with many of the same symptoms, but I try not to stack them up in my head unless I am talking to a professional who has any hope of helping me.

It is fairly easy to stop concentrating on your specific problems. Ignoring its presence takes a little more effort, but it can be done. I do it by giving myself jobs to do or talking to friends that won't want to hear me talk about it (but sometimes end up hearing about it anyway). When I make myself busy enough, I don't have enough time to concentrate on the pain. You can do the same with small jobs or puzzle games that take a lot of concentration.
Right Temporal Lobectomy 4/5/12
Laparoscopic Nissen Fundoplication 12/17/13

Diagnosed with GERD, Eosinophilic Esophagitis, and Epilepsy.
Studying biomedical engineering to research a better fix to at least one of them.

lobstahguy
Regular Member


Date Joined Jul 2013
Total Posts : 332
   Posted 2/16/2014 12:27 PM (GMT -6)   
Thank you all for the replies and advice. I will try to answer each one of you as soon as i can. I am going to the dentist tomorrow. That should be fun considering i have sinus problems and a swollen throat already.

ldrunner
Regular Member


Date Joined Dec 2013
Total Posts : 103
   Posted 2/16/2014 3:25 PM (GMT -6)   
>>>>>I think i am at the point of no return. I feel like i have permanent vagus nerve damage. Nothing works right anymore. My nose, sinuses and ears are all full and hurting, throbbing, runny, stuffy etc. and this morning when i didnt think it could get worse, my ears started to itch on top of everything else, i have a tooth ache. How do those of you with all this misery keep going. I am losing my mind.
 
Do you use Peptac liquid or similar? I use it whenever my symptoms get through the omeprazole and it's wonderful stuff. Sometimes I'm ready to drink it from the bottle I need it so badly.
 
Of course, I wouldn't need it if my stupid, hated, useless, *&*&&***& wrap had actually worked.
 
I deeply regret my surgery...

lobstahguy
Regular Member


Date Joined Jul 2013
Total Posts : 332
   Posted 2/16/2014 4:25 PM (GMT -6)   
ldrunner said...
>>>>>I think i am at the point of no return. I feel like i have permanent vagus nerve damage. Nothing works right anymore. My nose, sinuses and ears are all full and hurting, throbbing, runny, stuffy etc. and this morning when i didnt think it could get worse, my ears started to itch on top of everything else, i have a tooth ache. How do those of you with all this misery keep going. I am losing my mind.
Do you use Peptac liquid or similar? I use it whenever my symptoms get through the omeprazole and it's wonderful stuff. Sometimes I'm ready to drink it from the bottle I need it so badly.

Of course, I wouldn't need it if my stupid, hated, useless, *&*&&***& wrap had actually worked.

I deeply regret my surgery...
Hello, did you have the nissen? My symptoms are pretty much constant. I dont really have heartburn.

lobstahguy
Regular Member


Date Joined Jul 2013
Total Posts : 332
   Posted 2/16/2014 4:28 PM (GMT -6)   
corgislover said...
Lobstahguy - I've had many of the health issues you mention. I've been diagnosed with GERD/LPR by an ENT after many tests. The first issue I had was asthma and that was 3 years ago. I went to a pulmonary specialist, 2 ENTs, GI doc, and have been through numerous primary care physicians. One trip to the ER not too long ago for what I thought might be a heart attack (wasn't). Not too long ago I thought I might actually be dying from this. I've been on PPIs and had all of the side effects. I've been on asthma medicine and got thrush and severe fatigue. I've had the most success from lifestyle changes and diet changes. I went on Jaime Koufman's diet (Dropping Acid). It helped but I still had symptoms - especially phlegm - seems like everywhere. I've recently tried the Fast Tract (Heartburn) diet (Norman Robillard). I started eating the foods with low fermentation potential found in a chart in his book but I wasn't weighing the foods until a week ago. I bought a kitchen scale (digital) and started tracking the fermentation potential of the foods I'm eating. I'm also making a concerted effort to drink more water. I'm tracking that too. I'm keeping a food chart and write down how I feel at the end of the day. When you do that, you'll see patterns in what might be bothering you. I noticed that I had gas after eating eggs. Everybody is different and your triggers might be very different than mine. But it helps to write it all down. After a week of weighing the food and limiting foods with high fermentation potential, I can say that I'm feeling better. My digestive system has settled down. I had loose bowels for months (ever since the last PPI I tried). Much better now. I'm not belching as much as I was. My throat is not as sore as it was. My sinuses are clearer. I still have phlegm but I think that will be the last to go. I'm not choking on it like I was though. It remains to be seen how much better I'll feel but I plan to stay on this diet! Previously I had tried many diets and nothing seemed to matter much. I've given up dairy products, bread, most sugar and most recently eggs. It's a simple diet but I'm not hungry. I was trying to eat vegan but I've added back some meat (turkey and chicken). I've lost a lot of weight in the last 3 years. I started out at 162 pounds and I now weight about 105 (give or take). The weight dropped off me when I gave up dairy and bread. My headaches went away too - I rarely get them anymore. My symptoms are not completely gone. But they are better. And I've only started this diet. I know how discouraging this thing is and how hopeless one can feel. It's one step at a time and sometimes it doesn't feel like any progress is being made. You're in a bad place now and I can tell you feel very bad. If you haven't tried this diet, maybe you could try it. The book is on Amazon. I have Jaime Koufman's book too and still refer to it occasionally. I hope you find something that helps you because it sounds like you are just miserable. This is helping me so I wanted to share it with you.

I almost forgot to mention that I'm now using a toothpaste with neem in it and my gums and teeth feel much better. I recently had my teeth cleaned and she told me they looked much better too. They weren't near as sensitive as they usually are when I have them cleaned.

Sorry this is rambling a bit. I wanted to mention that you don't have to give up all of the things I've given up to be on the Fast Tract diet. I've given up diary because it's a problem for me. The same for bread and most sugar. You're just limiting the foods with a high fermentation potential. I wanted to clarify that because in reading my post it seemed like you had to give everything up!
Hi, thanks for the information. I have looked up that diet but havent ordered the book yet. I dont eat any of the things you listed. Can you summarize what the diet is based on??

ldrunner
Regular Member


Date Joined Dec 2013
Total Posts : 103
   Posted 2/16/2014 4:34 PM (GMT -6)   
>>>Hello, did you have the nissen? My symptoms are pretty much constant. I dont really have heartburn.

Hi, yes. But it's not looking like it was successful.

Cheers, LD.
New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, June 21, 2018 4:19 PM (GMT -6)
There are a total of 2,974,246 posts in 326,161 threads.
View Active Threads


Who's Online
This forum has 161234 registered members. Please welcome our newest member, run_sunshine.
403 Guest(s), 14 Registered Member(s) are currently online.  Details
momto2boys, tarawa, SantaZia, LifeCointosses, Tim G, John_TX, acarined, ChickenArise, garyi, danikacs, WifeofPie, Fauntleroy, halbert, Newmommy26