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Posted 6/12/2014 8:08 PM (GMT 0)
I probably almost did have a breakdown just yesterday actually; my symptoms are not budging, and if anything they're worsening. I cannot take much more of this, and fear I might actually go mad if there isn't a cure for what I have. I'm being given "treatment" for my anxiety, but it isn't going to work because the source of my anxiety is in the symptoms, which just WON'T GO AWAY.

- Burning throat
- Tight throat, so tight I become dizzy
- Lump in throat/Sore throat first thing in morning
- Cannot take a full, deep breath
- Arm/Chest/Head pain
- Worse when swallowing or after standing up first thing in the morning.

The only thing that even remotely helps is to not swallow. Alkaline Water (ph 9), saliva and even Gaviscon Advance bring on my symptoms. Only eating dry/thick food like bagels gets rid of it for about 5 minutes, or until I swallow again. I even become dizzy when I swallow saliva. THIS IS NOT NORMAL. It scares me, it couldn't be anything other than reflux but I CAN'T CONTROL IT!!!

I know I say this all the time, but this time really, I cannot take much more of this. I cried my eyes out yesterday but the symptoms kept going. I've never been so stressed. Every time I Google it all, the answer is the same LP-incurable-R-! I'll go insane if I'm proven to have that-! I've been screaming to the heavens when I'm alone, begging for help.

I can feel the damage taking place in my throat, a cold or burning feeling, lump in throat, tightening airways. So why are the Peptests negative? Why is the Restech probe's study "inconclusive?" Why can nobody see any actually damage with their scopes? Why don't the "miracle cures" that work for everyone else work for me?! I can't take this!!

Post Edited (Daxter) : 6/14/2014 5:17:56 AM (GMT-6)

Posted 6/12/2014 10:49 PM (GMT 0)
I'm sorry Daxter.. Hugs...

Have you tried taking Magnesium supplement? I am planning to try it, as I found out That it has a big role in our health. It's a muscle and mind relaxant. It may help our muscles (throat, esophagus, diaphragm) to relax so that we could breath easily and release tightness in other areas like back, chest, or arms. It also helps lessen our anxiety.
My main problem today is breathing, muscle pain and cough. I am hopeful that if I try magnesium, I will see a lot of improvements, like most of the people did.
Posted 6/12/2014 11:00 PM (GMT 0)
sorry you feel so rough. please hang in there, it will get better... not as soon as you want but it will get better. Get on a very restrictive diet. see someone to get supplements. try to relax. reach out to friends and family for support. you do not have to face it alone. I recall the time i was hugging everyone in my household - i just felt very needy and down and hopeless. it takes time. I am not 100% but mentally turned the corner and dealing with it. Just remember, it is not life threatening, it will get better and you will get better or learn to manage it better. Good luck and hugs... white cabbage juice and carrot juice taken before meals seem to help me. a lot of herbal tea - camomile, etc. yoga, breathing and stretching seem to help. sleep more if you can.
Posted 6/13/2014 1:50 AM (GMT 0)
Daxter I feel your pain! There are moments I want to go insane too. All my tests do not point to acid reflux. Barium swallow (doing my 3rd in a week), scopes, restech, Peptest negative, ph, manomtry... you get it. Right now I can't breathe and I literally have no solution for it. It does get a bit better at times and thats my only spark of hope when things are bad. 3 weeks ago had terrible chest pains everyday multiple times..it has eased up a bit so I look at that as positive. It just seems when one symptom gets better another jumps in and takes it place. Going to another ENT next week. Hoping for a miracle. I understand you and want to tell you to hang in there. we have to (WILL) find an answer for this! Sending healing thoughts to everyone
Posted 6/13/2014 1:51 AM (GMT 0)
What are you taking for your anxiety?
Posted 6/13/2014 3:08 AM (GMT 0)
Hi Georgi,
Me too, my symptoms seem to circulate. If one symptom subsides, the other one will appear. It's so annoying and it feels like there's no end. But I am also thinking positive, because if the symptoms come back, they are not that severe unlike before.
Hoping everyone feel better soon

Post Edited (angelcat) : 6/13/2014 1:02:54 AM (GMT-6)

Posted 6/13/2014 10:18 AM (GMT 0)
Have you ever been tested for non-acid reflux? Have you been to see a throat specialist? Your throat sounds like its very sensitive, thats probably why even gaviscon and alkaline water aggravate it. Gaviscon advance is pretty strong stuff, even in my mouth I feel a slight burn, you might be better off sticking to tablets.

What treatment are you having for anxiety? You could perhaps try an anti-depressent like Elavil, which also reduces nerve sensitivity in the esophagus and will hopefully reduce your anxiety levels.

Try and stay relaxed, when you have symptoms find a comfortable position either lying or sitting and do some relaxation exercises like progressive muscle relaxation for half an hour. I found those really helped my symptoms.
Posted 6/13/2014 5:54 PM (GMT 0)
Hey, I'll try to respond to as many things as I can in one reply!

Andy; I assumed the Restech probe and Peptest kits also tested for Non-Acid reflux since pepsin is behind the damage anyway. Right now I'm not on anxiety meds as they might mess with my upcoming manometry.

angelcat and georgi; I've taken a multivitamin before with high levels of magnesium, and I still take vitamin d3 by the bucketload, but neither has helped after many months.

I actually got in touch with JPT (justpassingthrough) a little while ago. He said I can't have LPR because none of my tests say I do. Is he right? What else could it be? When everyone online says "LPR/acid/non-acid reflux" and when symptoms start so specifically like when swallowing/bending, I can't help but convince myself that's what it is.
Posted 6/13/2014 6:22 PM (GMT 0)
Hi Daxter,

So sorry that you are having such a rough time.

When I first got my symptoms of LPR it was 2 years ago, it started with globus, and a burning tongue, I was told it was geographic tongue syndrome. - rubbish it was LPR, I had 2 ENT consultants check my throat I saw for myself nothing there no damage at all that you could see. I did a peptest it was negative, I was told I did not have reflux, and carried on eating a more normal diet, I then got crushing chest pains, a ph study told me I was fine, then the upper dysphagia started, only 3 months after the dysphagia started this was now over a year later did my throat turn red and swell, then I got cysts on my tonsils, and a very red angry throat - finally they all agreed it was indeed LPR. New peptests confirmed my pepsin levels were off the charts - I believe that both pepsin and weak acid caused my dysphagia - and it's really odious to try to live with.
Had the doctors believed in my symptoms rather than on science I don't think I would be in the hideous position that I am in now.

I actively encourage you to fire any doctor that is not on your side, keep going until you find someone who cares enough to go that extra mile.
Keep a daily diary of symptoms, and foods and appointments and discussions. Also write out a timeline and take that to every doctor, be proactive, this is your body and you know that something is wrong.
Research like mad, pubmed is good, find email addresses of professors and email them your history and ask them for some opinions.

Most of all - do not give up - ever. You will get there, it will get better, but it may take some time.

Pink
Posted 6/13/2014 6:34 PM (GMT 0)
Daxter I remember one person saying he had throat symptoms with negative tests and eventually found they where caused by a spinal injury, it might be worth going to see a Neuro doctor and have them look into it for you, if only to rule it out.

I was thinking of bile reflux causing you problems rather than acid and pepsin, not familiar with Restech but if its an impedence test rather than pH then it will have tested for that.

Has anyone ever looked down your throat at the vocal chords and stuff? Usually a doctor can instantly spot inflammation or damage there.

Keep pressing the doctors, and dont let them fob you off with anxiety. Its important to keep it in check but there's obviously a reason you're anxious.
Posted 6/13/2014 6:57 PM (GMT 0)
More multireplies;

GC1pink; What concerns me is how I've submitted 21 Peptest samples where I've done my best to have "Normal" diets and no meds, and they're negative. I can understand one or two being negative when the rest are positive, but when none are positive at all, and when my symptoms appear the same regardless of my diet, I have to wonder.

Andy; Restech was a pH probe, but I was told my results could be seen in normal people as well as people with LPR, so they're inconclusive, and an impedance is therefore on the way. An ENT checked my throat when it was as bad as it is now, but he didn't see any damage. Truth be told, I want it to be stress. That way it's "curable."
Posted 6/13/2014 10:05 PM (GMT 0)
Angel cat, what kind of magnesium have you researched. I have some stuff called Calm but haven't tried it yet. Curious what kind you take?? Also, I have heard of people taking magnesium baths. Some live by it at the nutritional store I shop at.
Dexter and others with throat issues.
I had a bone infection in my Inside far back jaw bone. First they tried crowning my back two teeth but the infection got worse so the dentist realized it was not the tooth but something else. He sent me to a root canal person. I had the root canal after they put me on two courses of antibiotics. The first one didn't last long before it returned. The root canal doc informed that I had two issues. The teeth and jaw a bone infection.
Long story, I think that my throat issue was pain from my jaw bone infection. It was probably brewing for years and years. (Or not...i am not a doctor I am not positive. ) Just reaching for something.
Either way, my throat issues seem to be gone. It could also be the daily baby aspirin I take. That helped my throat tremendously in the beginning. You might even try one baby aspirin in the a.m. And one in the p.m. As doctor oz recommends. .i take one in the morning with my flax seed/oatmeal and fruit breakfast . After I take my ppi. (I have Barrett's, so this whole reflux thing really has/had me scared out of my wits. Either way, It's up to you. I am not a doctor. But, the data is showing great success with aspirin and certain cancers and the one that has the best data is esophageal cancer and baby aspirin. One source showed a 70 percent decrease in EC for those who took a daily aspirin. Google aspirin therapy and cancer.
I know the jaw bone isn't easy to test. No ex ray showed it. It just started to abscess badly one day so we knew it was down there. Lots of puss. Pretty scary. And a root canal and two crowns later along with about 4000 dollars only to find out it was the jaw bone infection causing it all. But, if one thinks about the location it is very close to the throat and the pain could have transferred there. Or the swelling could have caused it.
Good luck. And seriously, try the baby aspirin. There is also a tea called throat coat. Works great but it didn't cure me like the aspirin and or discovery of the jaw bone infection. FYI: I am reaching with the jaw bone explanation but wouldn't be surprised if it was the cause. Good luck. I am not reaching for something when I recommend the asprin. It works and there is data to show its healing effects. But, it can cause issues for some people. Just have to try. :)
Posted 6/13/2014 10:53 PM (GMT 0)
http://voicedoctor.net/therapy/lump

Daxter. My heart goes out to you. Hang in and keep seeing other professionals. They have got to have answers. This is an awful illness.
We discovered a prominent cricoid on an older barium test and have had three subsequent barium tests. No one else spotted this problem. ( you may already be familiar with it). Check the symptoms in the site above and see if they are like yours. Maybe this will turn you into a different direction. Sincerely wish better time in near future. Stress does have an effect too.
Posted 6/14/2014 12:06 AM (GMT 0)
Hi Pink, may I ask what treatment you are on now? I , too have had all negative tests and not sure which way to believe, because symptoms continue.
Posted 6/14/2014 12:19 AM (GMT 0)
Has anyone had the Alcat test? Was if helpful? Have any of the moderators had it. It is pricey. It tests food intolerances (not allergies). Thanks.
Posted 6/14/2014 2:32 AM (GMT 0)
Hi Pat,

Actually, I've never heard of the Alcat test. Sounds interesting, though.

Daxter,
Hang in there! Sorry to hear you're struggling.

Best wishes,
Denise
Posted 6/14/2014 8:40 AM (GMT 0)
Daxter I had 2 peptests that were negative, and then one peptest that was positive when I had no symptoms showing such as red throat and oedema. My first positive peptest was above 250nl which is off the charts, and the second was 42nl which is low. By this time I had dysphagia, I think peptests are snapshots of a moment in time, it depends on what you are refluxing and when you are refluxing.

My DeMeester score is within normal limits yet I get excessive amounts of tiny reflux events per day usually in the number of 80-120 when the normal is less than 30. This has caused my dysphagia and more motility problems and I am stuck in a catch 22 situation. It will be interesting to see if you are getting a large amount of weak events in your throat.

Georgi303 - I am now on 40mg omeprazole morning and night with an extra ranitidine at night, I also take a lot of rennies and salt gargles, but it's still not helping. I have a hernia and a weak LES so the reflux is still happening. For the upper dysphagia they have just injected 50 units of Botox in one side which although has reduced my pressure from 196 to 26 it has made my swallowing worse by changing the tone of the muscle - I will not be having this again!
Am starting an oestopath today to see if he can help release the tight muscles in my neck.

Hope this helps,

Pink
Posted 6/14/2014 11:16 AM (GMT 0)

GC1pink said...
Daxter I had 2 peptests that were negative, and then one peptest that was positive when I had no symptoms showing such as red throat and oedema. My first positive peptest was above 250nl which is off the charts, and the second was 42nl which is low. By this time I had dysphagia, I think peptests are snapshots of a moment in time, it depends on what you are refluxing and when you are refluxing.

My DeMeester score is within normal limits yet I get excessive amounts of tiny reflux events per day usually in the number of 80-120 when the normal is less than 30. This has caused my dysphagia and more motility problems and I am stuck in a catch 22 situation. It will be interesting to see if you are getting a large amount of weak events in your throat.

Georgi303 - I am now on 40mg omeprazole morning and night with an extra ranitidine at night, I also take a lot of rennies and salt gargles, but it's still not helping. I have a hernia and a weak LES so the reflux is still happening. For the upper dysphagia they have just injected 50 units of Botox in one side which although has reduced my pressure from 196 to 26 it has made my swallowing worse by changing the tone of the muscle - I will not be having this again!
Am starting an oestopath today to see if he can help release the tight muscles in my neck.

Hope this helps,

Pink

So if my demester score is normal, and my impedance doesn't pick up anything abnormal I won't have reflux? I'd go mad/make "plans" if I had this for the rest of my life, it's just not natural. It's already so bad I feel like punching everyone around me who eats chocolate, but if I get an actual solid diagnosis, I refuse to live with it.

Post Edited (Daxter) : 6/14/2014 5:20:50 AM (GMT-6)

Posted 6/14/2014 12:42 PM (GMT 0)
Dont give up Daxter, I've had varying symptoms over the years and sometimes these things just clear up on their own. I used to have lots of throat problems but after a while they just disappeared on their own. Stress definitely makes it worse so try to relax and de-stress as much as you can.
Posted 6/15/2014 8:55 AM (GMT 0)
Daxter, if you are at the end of your tether why don't you try making a prototype of the reza band yourself and wear it as often as you can to see if this helps your throat symptoms. I am just doing this myself with the use of a squash ball, an elastic material and Velcro, I am wearing mine at night as I am aspirating after the Botox, but sleeping upright as dencha suggested is also helping.
The reza band will now not be available until next year.
Posted 6/15/2014 4:39 PM (GMT 0)

Andy1986 said...
Dont give up Daxter, I've had varying symptoms over the years and sometimes these things just clear up on their own. I used to have lots of throat problems but after a while they just disappeared on their own. Stress definitely makes it worse so try to relax and de-stress as much as you can.

It's really hard to not stress. More symptoms are returning, gas is gurgling up my throat, the throat is getting tighter; I want to search for a symptom without Google saying "You have LPR." Even gas just gurgling its way up my throat is reflux..? WHY?!!!!!!?!!?!?!?!?!!!!!!!?!

I want to stand a chance at getting my dream job, which is currently impossible due to how heavy lifting affects me. I want to be able to eat and drink and exercise like everyone else around me. I want to spend a day without worrying what my next action/meal will do to me. I WANT MY LIFE BACK.
Posted 6/17/2014 11:37 AM (GMT 0)
Hi Daxter,

No doubt, your situation sucks, I can feel with you. I have LPR / sensitive esophagus / "who-the-hell-knows-what-it-really-is" issues as well and they have changed and severely limited my whole life and they still do.

I, too, haven't given up looking for a cure, although tons of doctors so far couldn't really help.

Therefore I looked for a way to cope with the situation until a cure is found. The book "How to be sick" by Toni Bernhart was of great help to me. She has Chronic Fatigue Syndrome and writes about how to deal with a chronic illness that came to her from one day to another and which nobody really understands. Although my situation is different and certainly not as bad as hers, I could relate to her a lot. When I have my worst moments of pain and self-pity, I try to use her ideas of coping with that illness and all the limitations brought along by it. 

Being sad and angry about a situation like that of course is normal and absolutely ok. However, I think it is possible to reduce your own stress and improve your life (even if only a tiny little bit) by applying her techniques.

I wish you and all of the other LPR / GERD / PVN / whatever sufferers the best!

Orchid 

Posted 6/19/2014 7:24 AM (GMT 0)
My symptoms will be gone for a while, while the others will stay. Then the ones that stayed, will be gone, and the symptoms that are gone, will return again! That's how it goes for me! For now, I'm just observing if their intensity will reduce or get severe everytime they attack. Fortunately, most of them got better over time. I'm always reminding myself to be patient, though I know a lot of us have been suffering too long.

I also understand, about the doctors who don't seem to fully check our symptoms, they don't see how desperate and in pain we are. Some prescribe medicines that made our situation worse. It's so frustrating. Though there are many many great ones out there, and hope we can find and meet someone that will really help us.

I am still hopeful that one day we'll all feel much better. God bless

Post Edited (angelcat) : 6/19/2014 1:29:01 AM (GMT-6)

Posted 6/19/2014 1:45 PM (GMT 0)
I had all the test performed and I was told by my surgeon that my acid was that of a "normal" person and asked if I had a particularly good day whilst I had the probe down? As I'm sure you know the last thing you want to do is eat ordinarily or go about your usual activities whilst you have the bloody vile tube down. Ordinarily my surgeon would not operate with such normal ph test results He only did on the fact that my manometry test showed a significant weakness in my les. He did agree that when you have those bloody probe things down its sods law that acid wont show up. I had/have the classic LPR symptoms and I really do sympathise with you. Its debilitating depressing and can take over your life. Unfortunately, I'm still plagued with symptoms following my nissen fundo and seem to have gained a few other unwanted side effects too. I pray every night for a miracle and for it all to just go away. I miss my old life pre GERD :-9 I hope you manage to get sorted v soon.
Posted 6/20/2014 2:55 PM (GMT 0)

Masterofgerd said...

Quit whining that there's no cure for your illness. Some people had the worst type of gerd and I belong to these percentage of people. There's no such thing as magic pill, find the real cause of your illness and be optimistic, no one can help you but yourself.

I must admit this rather upset me; of course I have every right to 'whine' if nothing works, but also if things that make me bad one moment don't affect me only a few hours later. And of course all mu efforts are on this problem that has reduced my quality of life as low as it can go.

I need to find answers as soon as possible. My throat was so badly constricted from mucus blocking my airways the other day I almost ran for A&E, but I knew exactly what they'd say. The longer I go without swallowing the worse my airways block, dizziness sets in and my ears/arms hurt as I get breathless/stopped from taking in a full breath (both through my mouth and nose) by the mucus, but the more I swallow the tighter my throat gets. It's a no win always suffering situation.

Post Edited (Daxter) : 6/20/2014 10:08:55 AM (GMT-6)

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