ease someone help

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stacey77
Regular Member


Date Joined Dec 2012
Total Posts : 109
   Posted 12/26/2012 9:06 PM (GMT -6)   
Hello all. a few months ago i was diagonosed with lpr. My ent pretty much told me what i had, threw me a pamplet and told told me i'd be okay soon if i took dexilant for awhile. I had no clue what he was talking about. I began researching immediately. Since then I have gotton off dexilant and now taking ompralozole 80 mg twice a day plus zantac as needed. I thought it was helping a little bit but now i feel just as bad. I get horrible ear aches and headaches with this. I have a lump in my throat, excess mucous and either too much saliva or not enough. The saliva i do have tastes different too...almost acidic tasting. My tongue is also white on top and bumps in the back. I went to a GI and got an endoscopy and they found nothing so he did two biopsys. I've been drinking aloe vera juice and drink alkaline water when i can afford of it. ive most 20 some lbs since this all started in october. All i read is negative stuff about lpr and that it never goes away. It leaves me very discouraged. I feel like im just slipping through the healthcare system and i feel like im never going to be the same again. I have a fifteenth month old daughter and i want to try new foods with her and not feel so sick anymore. I feel so sick all of the time that I'm not even able to take care of her by myself anymore. It brings me to tears just by sitting here writing this. I need success stories. I want to be able to eat some chocolate again and yummy pizza. I will of course change my eating habbits when i am cured...compared to the eating habbits i had before i got lpr, it should be very helpful. But everyone needs a cheat day..to splurge a little bit..right? I just need some encouragment and maybe some ideas that could help me relief the pain until they figure this out. Sometimes I Even wonder if i have lpr. The ent said my voicebox wax irritated and thats how he knew. Tonight my throat is so swollen..it hurts soo much. I usually take klonipin but now im wondering if that is making it worse...i used to take xanax and i wonder if that caused this. I also wonder if a diseased galbladder can cause these symptons. Please anyone who has gone through and knows imformation i would appreciate it so much.
 
always, stacey

thegspeak
Regular Member


Date Joined Nov 2012
Total Posts : 196
   Posted 12/26/2012 9:32 PM (GMT -6)   
Hi Stacey, I'm sorry you are having such a hard time and with a child that age it must be very difficult. I am newly diagnosed too and seeing a top LPR doc here in NY. She puts most of her patients on very strict low acid diets. I did it and am seeing results (without any meds) I also got a wedge pillow so i'm not flat on my back at night and am surprised how comfortable it is. I think you have to attack this in three ways.... diet (and there is a chance you can't cheat for a long time) I know and you know that if you feel awful enough you will do anything to make it better an unfortunately diet is a big part of this. I don't expect i'll ever have chocolate again. OR beer for instance two of my favorite things. I mourned it and was upset for a few days but now I don't care. I just want to feel good. You might not enjoy trying new foods or eating your favorite foods but things are different now and you need to accept that to get better. I hope i don't sound harsh but I know how awful you feel. Besides food you have to try and relax yourself (breathing, yoga, whatever) because stress makes it worse. and finally you MUST raise your bed or get a wedge pillow. I noticed a difference when I did this the very first night! Meds don't seem to work for me but these lifestyle changes of low acid diet, stress reduction and raising my head at night (you can't just put pillows under your head that makes it worse, your head and torso need to be in a straight line)
Klonipin (and Xanax) ARE NOT GOOD FOR LPR! They are in a medicine class called Benzos (well that's the short name) and they are known for relaxing the LES (lower esophageal sphincter) I was taking Ativan which is also a Benzo and my doc took me off that immediately. It might actually be making you feel worse. hope this helps. I'm a newbie but i read about this day and night and i'm lucky enough to be seeing a great LPR Doctor. So I wanted to share everything I knew with you. Good luck! You will find a way to manage this! Don't be discouraged.

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7181
   Posted 12/26/2012 9:50 PM (GMT -6)   
Hi Stacey,
Welcome to Healing Well!  This is a great forum with lots of experenced members.  There is a very good chance you will be able to control your reflux enough to live a normal life through careful eating and PPIs.  thegspeak has given you lots of great advice.
 
There is one other thing that you could keep at the back of your mind.  While I'm confident that you'll get things under control through less extreme methods, there is one last resort alternative--a Nissen fundoplication surgery.
 
I had atypical LPR reflux symptoms--mainly asthma and very unhealthy lungs.  After trying everything and finding that nothing was helping, I opted for this surgery and after my lungs healed for two and a half months, they were cured.  I am able to eat pretty much anything I want to eat, and have been very happy with the results.
 
I'm not suggesting that this is an option that you would consider now.  Just know that if all else fails, and your quality of life is compromised, it's an option that you can consider.
 
Again, glad you've joined us!
Very best wishes,
Denise
GERD/Heartburn Moderator
Nissen Fundoplication 2/09
Allergy/Asthma

"Whatever you fight, you strengthen, and what you resist, persists.”

“Worry pretends to be necessary but serves no useful purpose”

“Accept - then act. Whatever the present moment contains, accept it as if you had chosen it. Always work with it, not against it.”
Eckhart Tolle

stacey77
Regular Member


Date Joined Dec 2012
Total Posts : 109
   Posted 12/26/2012 11:58 PM (GMT -6)   
thanks so much for both replies! This is the first forum i have found that is up to date. It is very comforting. Thegspeak thank you so much for the advice. I think i know what dr you are going through. That is soo awesome that you are getting in with her. It seems like you are on the right track. I try getting off the klonopin but i feel im having withdrawl symptons. People tell me its impossible because i only take .5 mg a day and sometimes skip a day. I dont know if the withdrawl is mental or not. Anyways, I take it now beacuse it helps me to get food down. BUt i had this weird feeling it was making me worse And i have a feeling that it has maybe caused this problem. Plus eating an excressive amounts of chocolate and mints almost daily:( eek. Also, dencha...thank you so much for the encouragement as well. I really want to get the surgery but was told that you have to go through everything before a dr will even consider it. Is it my choice...or do the doctors have the deciding factor in this? I'm just so confused on all of this and very depressed. Ive heard mixed reviews on surgery but i honestly think it'd be the best route for me. My family is or typical "get together and lets eat" type family...food is such a social thing and i never realized that. I do want to eat healthier when i'm better and not go back to my old ways but i just want to enjoy life again. I dont hang out with any friends because i get to many coughing/mucous attacks throughout out my day. I also eat by myself in the corner of the kitchen every day because i dont want to even be around my family when i eat. Its very embarressing for me. HOw long did you have lpr before you got the surgery?? Thanks again. stacey

stacey77
Regular Member


Date Joined Dec 2012
Total Posts : 109
   Posted 12/26/2012 11:59 PM (GMT -6)   
Also i have been trying to do a more alkaline diet but im having trouble even eating those things. I'm basically having symptons with amost everything i eat. Minus water.

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7181
   Posted 12/27/2012 9:22 AM (GMT -6)   
Hi Stacey,
It seems that how long and difficult it is to get the surgery with LPR symptoms depends upon how enlightened your GI doc is, as he/she will be your gateway.
You will need to jump through lots of hoops before the surgical option is offered, and in many cases it will require a lot of effort on your part.  That said, it's all worth it in the end.
 
I had horrible lungs for 6 years before I finally was passed off to a surgeon by my GI doctor.  My problem was that the 24hr PH monitor scores I had were quite low.  My PCP and allergy/asthma docs who knew me best, were certain that the reflux was making my asthma uncontrollable.  The GI doc didn't buy it, and told me that my reflux wasn't causing the problem.  My asthma doc said that GI docs don't really understand how a very small amount of reflux can create havoc in the lungs.
 
You'll need to try all kinds of PPIs (BTW, research shows that people with LPR need 24hr coverage, so need a two-times a day dosage.), change your diet, elevate the head of your bed, and get tested with: barium swallow, endoscopy, 24hr PH monitor, manometry, and sometimes, a stomach emptying test.
 
While the GI doc is the ultimate decider, I'm certain that the patient's advocacy does make a difference.  My PCP worked hard to get my GI doc to recommend surgery.  If I'd been more confident about the surgery and had pushed as well, I believe that the GI doc would have acted sooner.
 
Hang in there...it's tough, but there are answers out there.
Feel better!
Denise
 
GERD/Heartburn Moderator
Nissen Fundoplication 2/09
Allergy/Asthma

"Whatever you fight, you strengthen, and what you resist, persists.”

“Worry pretends to be necessary but serves no useful purpose”

“Accept - then act. Whatever the present moment contains, accept it as if you had chosen it. Always work with it, not against it.”
Eckhart Tolle

stacey77
Regular Member


Date Joined Dec 2012
Total Posts : 109
   Posted 12/27/2012 10:04 AM (GMT -6)   
thank you denise. that is all very helpful!

thegspeak
Regular Member


Date Joined Nov 2012
Total Posts : 196
   Posted 12/27/2012 10:54 AM (GMT -6)   
Stacey, i could have written some of the things you wrote about your family and being embarrassed by your cough. It actually makes me feel better that someone else out there is experiencing the same thing as me. I haven't found too many people with "the cough from hell" It's my dominant symptom. Occasionally I get the dreaded "vapor burn" which is actually worse. It's weird how the symptoms can change but I know it's typical.

I just wanted to tell you that I also have a big social life that revolves around food. I even sell Balsamic Vinegar for a living! I can never eat that again, i'm sure that was my ultimate trigger. I was depressed too. Esp. over not having wine which was something i drank a glass of most nights while I cooked all the yummy things I can't eat anymore.

After living through this for a few weeks i've figured out a way to eat that I can deal with and even like. I'm even going out to dinner tonight for the first time. Japanese, I thought i'd have sashimi and plain rice. I'm sure i can have edamami and a salad with a little carrot ginger dressing on the side. No beer obviously, just water. Will it be my ideal meal? No but i'm out and that's a step in the right direction.

I would be more than happy to write up what i'm eating for you. I'm not hungry anymore and I am able to feel like I enjoy what I am eating. I am hoping that in time I'll be able to reintroduce certain things one at a time because I have heard that not every trigger food is a trigger for everyone. I'm hoping I will be able to go back to the occasional glass of wine since I never had a problem before I started eating a lot of Balsamic Vinegars. But I have to do this for a while so i'm symptom free to figure all that out.

I am telling you my story because I think i'm just a few weeks ahead of you in coming to terms with all this and i'm no longer depressed. It stinks, don't get me wrong, but I'm optimistic that if i take care of my body my body will eventually take care of me the way it should. And that food isn't more important than health. (I've also told myself it's not cancer more than once when i'm really in bad shape)

The embarrassed issue i can also relate to. like REALLY relate to. first of all everyone thinks im' infectious so i have to explain to virtually EVERYONE that it's not infectious. But it looks infectious because my nose runs and I blow it after i cough. I've been hiding a little, just taking care of myself and not talking. Days I don't talk much are better since talking seems to trigger the cough. I am also a mom though and it's very difficult to not bend over after a meal...anyway i can relate to you and I hope you will come to terms and fight this thing off by taking incredible care of yourself.

Hang in there!

stacey77
Regular Member


Date Joined Dec 2012
Total Posts : 109
   Posted 12/27/2012 9:46 PM (GMT -6)   
Thank you so much for that thoughtful reply..may i ask how old you are. I am 26 and of course none of my friends nor family have ever heard of this or have it. I obviously dont wish it on anyone but i feel so alone. Someone to talk to would be great. Could we exchange email or something? I tried to do a private message but i dont know how. I just want to know if this ever goes away. I stopped taking my klonopin today because of what you said..and thats not the first time i have heard it. It scares me to quit cold turkey because I feel worse when I do that..but in the long i know it will be better. I only take .5 mg a day...so hopefuly cold turkey wil be okay. I'm also wondering if this is a nerve thing? Ive only done the endoscopy and the only thing the gi saw was an irritated voicebox. I saw the picture of it..and its definately red around it...but not very alarming...so its weird that this is causing so much chaos in my life. Sometimes I feel as if im going crazy from being in pain all of the time. Night time is the worst. My ears ache so badly..and my head hurts...my throat feels like its burning..and i always look into the mirror to see if its red. lol. Which of course the outside of it is not red, just feels that way! I'm trying to follow the kaufman two week induction diet right now. I had a salad today with mostly greens and a little bit of vitalian dressing. It says you can have vingarette so i figured itd be okay...but now my throat hurts so bad. I also do vanilla activia yougert three times a day...or i was and then stopped.but ive noticed a difference since ive stopped and its worse. I plan to continue that tomorrow. I honestly just want to get the surgery. I go to my gi next thursday and still waiting on the biopys he took from my stomach lining and esphoagal linging. I'm not even sure what the biopsyes could show. Ive always had swalling problems and my doc said it was anxiety..and sometimes i go through these phases where i stutter or stammer on my words...im jus trying to understand all of this. Thanks again for replying and i hope we can talk soon:)

thegspeak
Regular Member


Date Joined Nov 2012
Total Posts : 196
   Posted 12/28/2012 1:55 PM (GMT -6)   
Stacey definitely! I'm in my mid 40's but I have a five year old. I don't know how to share email addresses on here...maybe someone will see this and help us get in touch!

Pat Tall
Veteran Member


Date Joined Aug 2012
Total Posts : 950
   Posted 12/28/2012 9:50 PM (GMT -6)   
Go to Members above. Then go to Profile You can add your email address if you don't mind people contacting you.
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