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

Daxter
Regular Member


Date Joined May 2013
Total Posts : 406
   Posted 8/6/2013 3:59 AM (GMT -6)   
The more I read about LPR, the more I feel utterly depressed. If I have one fear in life, it's having a lifelong disease, especially one as horrible as LPR. I've been trying everything possible to fix it, but it just keeps going after 8 months and nothing I can do can even slightly relieve it at present, except for a single medication (see below). I experience:

- Mucus in the throat after eating anything. That means a lot of throat-clearing.
- Burning in my throat, even after drinking ALKALINE water (Saka brand, pH 8.2 with a little B.Soda added to make it 8.8). Even my own saliva makes it worse..!
- Constant belching and gas stuck in my throat if I so much as stand up. The gas also causes burning.
- Occasional "lump in throat" feeling, but not every day.
- Absolute anxiety, made worse by SSRIs and CBT.

I've tried the following to counter it:

- Alkaline water, and water with baking soda when this isn't available.
- Manuka Honey
- Koufman's Reflux Diet for 4 months, but even foods in the induction list make me worse.
- Nasal sprays for the mucus; no effect.
- 3 different PPIs, 2 H2 Blockers and Gaviscon Advance in both liquid and tablet form. The only one that helps slightly is Cimetidine, but it can only stop the burning throat temporarily.
- CBT/Hypnotherapy for anxiety; Hypnotherapy only worked while I was in the session itself.
- Excercise, volunteering and new hobbies to take my mind off things. Nope, still bad.

Finally a few tests I've taken and things about my body:

- Peptest saliva test; showed a very low result in only 1 test of 3. It's possible that might have been natural reflux, but I wish all 3 had come back clear...
- Endoscopy/Barium; nothing of course.
- I am only 22, and very skinny so weight loss won't help, although it is currently happening in my despairs. My diet has never been out-of-proportion unhealthy, but I do suffer anxiety due to Aspergers Syndrome.

When I walk through the town streets, I see people binging on junk food or enjoying sweet treats, and I feel like falling on my knees and bursting into tears then and there. How do people like them get away with it? Nobody in my family believes me - even my GP thinks the Peptest results are a hoax, and that LPR doesn't exist. I'm awaiting a 24 Hour Test from an ENT, but what if I get the wrong test or no reflux happens on the day? I have so many worries right now, I don't know how I'm making it through each day without throttling myself to end the pains. What depresses me even more is that a H2 Blocker - WEAKER THAN A PPI - is working, which means it MUST be a real disease right?

I spend every day wondering how bad I'm going to feel, and why some things make me burn when others don't. I've desperately tried to prove if it's anxiety but I just can't do it. Every post I read online says I'm doomed to suffer all my life, without improvement. I can't go on like this. Someone either needs to cure me or kill me.


Part of heading removed per forum rules. Daxter we all certainly understand your feelings,unfortunately the forum doesn't allow us to discuss nor indicate those feelings with words.

Post Edited By Moderator (nvrthesame98) : 8/6/2013 6:59:29 AM (GMT-6)


GC1pink
Veteran Member


Date Joined Nov 2012
Total Posts : 532
   Posted 8/6/2013 5:50 AM (GMT -6)   
Hi Daxter,

I'm so sorry to hear that you feel so down and I can completely sympathise as I have recently been diagnosed with LPR after 14 months of being told that I don't have acid! I had a "normal PH Study" done last year which showed NO reflux at all - yet both my bariums show that I have a H Hernia and reflux, my mouth is so sore and I have trouble now swallowing. I also had the peptests last year and they were all a 0 - so I am now going for a RESTECH airways study - which will show up any acid that comes even in a gas form. I have also ordered some new peptests. I am on a huge dose now of ppi's and it's not making a blind bit of difference to my throat at the moment but I guess that it takes time to heal. My vocal chords are fine but the back of my throat is red and I now have a cyst.

A basic PH study does not show LPR you need a dual impedance test or the RESTECH test - on the day of your test be brave and eat as much crap as you can that will set off your reflux - there is no point in having the study unless you get a reaction.

Anxiety makes your acid levels worse, have you asked your GP for a small amount of Valium for a few weeks to see if that helps?

There is always surgery - although not always 100% for LPR a lot of people have been helped by various surgeries. May I suggest you look at the LINX, and ask another poster JPT for advice - he's great with LPR

Also the REZA BAND is coming out early next year which is supposed to help LPR Sufferers, there are also the shaker swallowing rehabilitation exercises that you can do to strengthen your upper oesophageal sphincter.

I would also ask my GP/Consultant for a motility drug such as domperidone to help your food move quickly out of your stomach, this will decrease fermentation and gas bloat, and reduce your burping.

Another thing I am doing is a mild salt gargle to help heal the throat tissues 4-6 times a day.

Do let us know how you get on with the PH test, and chin up!

hopegood
Regular Member


Date Joined Jun 2013
Total Posts : 93
   Posted 8/6/2013 8:44 AM (GMT -6)   
Hi Daxter,

LPR is not the end of the world. Many people have it and it is a common disease. Many research is going on to fight it.

Take care of yourself with proper diet, lifestyle, mood, medicine. GC is right, we also have surgery options.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16288
   Posted 8/6/2013 8:14 PM (GMT -6)   
Sorry you're dealing with this dreaded LPR. I can relate because I have it too. I am ALWAYS clearing my throat, especially in the morning and often times in the evening. I've tried a lot of PPIs and I am currently trying prevacid but it doesn't seem to be helping too much. In the past I tried taking a double dose with a zantac in the evening and got no relief from that either. I've tried nasal sprays, an inhaler, allergy pills... I know none of that is related but it seemed like it might help at the time. It didn't. I actually get a lot of comments from people, especially my family. They always tell me to STOP clearing my throat. It has gotten to the point that I have felt like my relationship would end over this throat clearing. While it's awful and I hate feeling like i am choking all morning/night, I have to say, the ulcerative colitis I suffer from, for me, has been a much worse illness to deal with. My LPR certainly isn't fun or comfortable or convenient for that matter but at least it doesn't cause me to nearly poop without a moments notice.

Did you try avoiding all the of trigger foods? I can't seem to stay away from chocolate/wine no matter how hard i try.
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis, Laryngopharyngeal Reflux & Migraines. Battling Extreme Exhaustion.
Currently: 6mp (25mg) + Lialda (2400mg) + Canasa (1g PM)

Mindbodynsoul
Regular Member


Date Joined Jul 2013
Total Posts : 32
   Posted 8/6/2013 8:54 PM (GMT -6)   
I totally understand where you are coming from. I felt as though I was going nsane with all these symtoms and refused to go on anti anxiety meds because I was sure it was something else. Of course I was right, and diagnosed with LPR after a PH test shoed I was in reflux 60% of my day. Normal level is 15 and under mine was 176. I am due to have my fundo next Thursday and it can't come quick enough. I went through absolute hell the last 14 mths or so and thank God that I now have a name for it. I also decided to try anti anxiety meds and only 10 mgs 1/2 tab and I have never slept better and feel great psychologically. I have lost a lot of weight and need to put some on. Its a harrowing experience trying to find ur way through the miriad of tests. But there is definitely light at the end of the tunnnel, just hang in there.

shifting
Regular Member


Date Joined Jun 2013
Total Posts : 28
   Posted 8/7/2013 9:08 AM (GMT -6)   
Could you tell mote about the Shaker exercises?

Daxter
Regular Member


Date Joined May 2013
Total Posts : 406
   Posted 8/8/2013 7:59 AM (GMT -6)   
Thank you everyone. I just discovered my local hospital doesn't use Restrch ph tests; is that the only test that could honestly tell me I have LPR or should I try something else? Worried this specialist won't know what LPR is... ;(

GC1pink
Veteran Member


Date Joined Nov 2012
Total Posts : 532
   Posted 8/8/2013 10:00 AM (GMT -6)   
Shifting -

Here is a link to the Shaker exercises - http://www.youtube.com/watch?v=YQqIugfbEB4

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2895999/

It is supposed to help tighten the UES.

Daxter,

You can still get a dual impedance test done for LPR - I would contact RESTECH directly to find out if they have a consultant near you that does it - that's how I tracked down my consultant.

http://www.restech-corp.com/

Hope that this helps :)

StephanieJean
Veteran Member


Date Joined Jun 2013
Total Posts : 500
   Posted 8/8/2013 10:54 AM (GMT -6)   
Hi Daxter,
I was having horrible throat pain, with none of the normal GERD or heartburn symptoms. I had a whole battery of tests from the barium swallow, the gastric emptying study, the Dual Probe PH 24 hour test and the manometry also an upper GI. No OTC medications would help, no special diets helped, protonix twice a day calmed the burn a bit, but as soon as my doctor got the results of my dual probe ph test she said my reflux was off the charts constantly and that nothing but surgery would help me.

It was nice to hear that it was not all in my head, and that there is a solution which would help me, but surgery is scary...mine is tomorrow in fact. But I remember saying to myself, as my throat was burning uncontrollably that I would do the surgery if I knew it would fix me, because I am so miserable.

Just don't give up looking for answers, you will find one.
New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, June 24, 2018 11:00 AM (GMT -6)
There are a total of 2,974,721 posts in 326,202 threads.
View Active Threads


Who's Online
This forum has 161301 registered members. Please welcome our newest member, Susie12.
409 Guest(s), 7 Registered Member(s) are currently online.  Details
logoslidat, hennaheather, Gemlin, Alicethenut, quincy, countrymusic, MacroMan