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Old 05-01-2009, 10:01 PM   #1
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In Desperate Need of HELP! PLEASE read my story...

I'm begging anyone with any knowledge about acid reflux or anything close to it for advice.

Since November 1st, I suddenly felt very nauseous while out one night with my friends. Had dinner and a drink and was driving around. Came home feeling very sick, assuming I was going to throw up due to eating something bad, a stomach virus, or even suffer from a Vertigo episode. I have 2 times in my life suffered from an acute Vertigo episode. Once 5 years ago, dizziness lasted only a couple days, and once in the Summer of 08, dizziness was more severe and lasted a couple weeks, but eventually went away. Having done several tests with ENTs, they never really found anything wrong with me or gave me any answers besides, "This just happens to some people, it's unavoidable, and it might happen again. Maybe you just have sensitive inner ears." My hearing tests and things all came out fine. In my ER report, they called it "Viral labyrthitis."

ANYWAY, I did not throw up that night despite wanting to. I forced myself to somehow sleep and woke up feeling just as nauseous. This feeling of nausea stayed with me for several days until I saw my general doctor who only prescribed me Zofran for a week. It didn't help much.

Long story short, I saw several ENTs, gastros, neurologists, etc. I even saw an allergist and discovered I have high environmental allergies (despite never feeling symptoms of this) but apparently no food allergies. I tried Pepsid. Then a sample of Aciphex for a couple weeks, while being on Meclizine, which is a medication for Vertigo. I'm not quite sure why I was on that, but one of my doctors was desperate to make me feel better so said I should just try it.

I got by for a month or two like that. Didn't feel 100% but was better.

Suddenly I felt extremely nauseous again, the worst. Gave up the meclizine, as I was not feeling dizzy this entire time, never threw up, and decided it had nothing to do with my Vertigo.

Saw a gastro doc who did an endoscopy, which was normal. At that point, I was so SICK I had completely lost my appetite, was losing weight, had to have my mother force food down my throat, so something was wrong. I took Reglan for a week, still felt sick on it, but actually felt better once I came off of it - since I had to in order to do my Gastric Emptying Study, which, guess what, came out normal.

I finally saw an ENT who looked up my nostril down into my throat and claimed I had severe acid reflux, allergies, and sinus issues. I was given a strict regimen:

-Neil Med sinus rinse twice or three times a day
-Allegra, once at night
-Clonazepam, 0.5 mg, 3 times a day (he claimed this was for the stomach, while I was aware this is a medication for anxiety, which I never suffered from)
-Nexium 2x a day
-Nasacort, one spray each nostril, 2 x day
-Bland diet, no caffeine, alcohol, spicy or fried food, smoking, etc.

Luckily, after a couple days, I immediately felt like 75% better. It was a relief because I felt literally deathly ill before, bed-ridden, and unable to eat. I felt much better, but still was not 100%.

Since then I've still been on ALL these medications, which has been at least 4 months now. I have not gotten better, but kind of worse again. I'm now on Kapidex twice a day, and switched to Nasonex since it's cheaper and apparently the same thing as Nasacort.

I still go to several doctors weekly to figure out what's wrong. I've done MRIs of the brain, sonograms of the stomach, throat, you name it...all normal. "Nothing is wrong with me."

Yet I still feel perpetual nausea. Like every moment of every day. It never goes away. It doesn't matter what I eat or drink. Nothing makes a difference. There are days, weeks, that I feel fine. And then suddenly days or weeks that I feel completely nauseous again. I can not find ANY pattern to what causes the nausea.

I don't drink, smoke, have coffee, eat tomatoes or spicy food, stopped sushi, chinese, chocolate, eat less processed and salty foods now. But I've always been a healthy eater and never smoked or drank heavily anyway. I used to jog often, but now can barely get through the day functioning like a normal human being to even make it to the gym for a walk.

I can NOT be on this high dose of medication for this long and still feel sick. This is not normal. There is something wrong and the fact that no one can find it and no medication works literally depresses me to death. I cry every single day cause I don't feel well enough just to go hang out with my friends and be normal.

At this point, if I don't feel just plain nauseous (that feeling like you have to throw up, but I never do), I just have a feeling of a lump in my throat or difficulty swallowing. There is something definitely in the throat area. My stomach never hurts and I don't feel heartburn.

I know this was the longest post ever, but I'm so desperate for help. Please, I beg someone to give me any advice they can. Share your knowledge. Suggest whatever.

I can't live like this. I'm only 29, about to turn 30, and have spent the last 6 months of my 20s feeling like I'm 80 and suffering from cancer. I'm extremely depressed and cry constantly and can't live a normal life.

Anyone?????






.

Last edited by Zoe26; 05-02-2009 at 04:46 PM.

 
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Old 05-02-2009, 08:52 AM   #2
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Re: In Desperate Need of HELP! PLEASE read my story...

I have a nephew that went thru all that you talk about, they in the end put him on nortriptylene, it took a few weeks, but he is 100% better now. Antidepressants do more than treat depression, they also treat the pain associated with it.

Sunny

 
Old 05-02-2009, 09:35 AM   #3
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Re: In Desperate Need of HELP! PLEASE read my story...

You have to just keep plugging away. I know it is hard so hard in fact that it seems at times you just want to quit. But the truth is you're not going to quit because you want to live and you want to live feeling like you did before all of this started. I know because I am in the same boat. I felt great and happy and tehn all of a sudden out of nowhere and for no reason I was so ill I thought I was going to die. I have been feeling this waqy for a little over a year. I would go in to a dr. and tell them where I hurt and they would run a test that would end up NOT showing anything wrong that could be causing my problem yet they would find some other thing. I kept getting a feeling of a lump in my throat and things would stick every now and then. But not my main problem. Anyway they sent me to a gastro who did an endoscopy and found i had barretts disease. Not going to go into what that is but to have barretts you have to of had SEVERE reflux for a LONG time. Which of course I never once felt and I am 42. They started prescribing antacid stuff like prilosec and nexium kapidex. Why did they do all of these? Because once I started them I sarted having heartburn from hell so much so that I had it all day all the time. It never went away. So now I had this new symptom to worry about and still no answer to my first problem. I said all of this to let you know that you just have to keep trying and keep talking to doctors and keep researching on the internet. make sure and write down in a journal everything u eat drink when u go to bed when u get up and I mean everything u can , and here is why. You have a problem that no one can figure out YET. This will indeed begin to frustrate your dr. and he may or may not say it is anxiety, even though you know it is not also he may start having you have all these tests that you dont need for what you feel.By having this journal you can discuss with him how it is not anxiety nor is it a cause for seeing a gyno. I would sau that you have silent reflux which means that you have it but dont feel it like most people with "heartburn" do. Have an endescope and get checked for h-pylori bug which could cause the nausea. I would try omeprazole 40 mg it works wonders. They want to put everyone on all this new stuff due to the drug reps. and drug companies. This can be gotten with a prescription or u can now get the 20 mg over the counter. Just dont give up keep looking and keep going to a dr. Find out if you can indeed go into a place like MAYO or Vanderbilt for some testing. Please let me know how it is going. I feel for you because I am in the same boat. As I said one day fine the next like I was also 80 years old with some debilitating disease and going to die. I am better than I was a year ago but still nothing like I was before I got sick. Seriously, email me and let me know how you are and what you are trying and what your docs say. I am new to this board stuff and have no clue as to how to find things. LOL. Just keep trying honey afterall it is all you can do if you want your life back.

 
Old 05-02-2009, 09:56 AM   #4
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Re: In Desperate Need of HELP! PLEASE read my story...

I was diagnosed with "silent" reflux at age 32. I think I had it for years before that without realizing what was going on. I had a chronic cough that wouldn't go away. I was diagnosed with asthma and severe allergies (which I already knew about) and sinus problems causing my cough. It wasn't until my reflux became so severe that my asthma was out of control, despite treatment, that I realized how serious reflux could be. It was just in this last year that I got the nausea you are dealing with.

It sound like you are being aggressive in trying to find a treatment that will work for you. That is a good thing.

I wouldn't worry about taking so much medication in the short term. For about 7 years now, I've been on: Allegra, Flonase, Astelin, Singulair, all kinds of PPI's twice a day, Advair 500/50 (for asthma that is triggered by reflux in addition to environmental things), Albuterol, and now stomach anti-spasmotics. I've done sinus rinses for years. I'm also receiving immunotherapy. I can't say I have had side effects from taking these meds long term. The only med side effects I've had have been to meds I was on short-term.

Other things you might try avoiding in your diet are: fatty and greasy foods and citrus drinks and foods for the reflux. Also, you might try reducing your dairy. For the IBS I was diagnosed with, I also avoid eating raw fruits and veggies, especially lettuce.

Have you been to a hearing specialist who specializes in balance? ENT's often have different areas they specialize in. It sounds like you need to do more follow-up with your Vertigo.

 
Old 05-02-2009, 11:14 AM   #5
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Re: In Desperate Need of HELP! PLEASE read my story...

Quote:
Originally Posted by 1sunny1 View Post
I have a nephew that went thru all that you talk about, they in the end put him on nortriptylene, it took a few weeks, but he is 100% better now. Antidepressants do more than treat depression, they also treat the pain associated with it.

Sunny
It is funny you mention nortriptyline. At one point, since nothing was working, the doctors said maybe it's anxiety. I told them I'm not an anxious person and don't have anxiety. They told me, maybe you have anxiety but don't know it, like it's subconscious. So I went to see a psychiatrist only once, and he prescribed me nortriptylene. I took it for 3 weeks only and stopped because at the same time was when I went to the "miracle" ENT who prescribed me all those other things which made me feel much better. So I stopped the nortriptyline since I thought that was no longer relevant.

Maybe I should go back on it? But I really don't feel I have anxiety or depression. What I feel is that this illness is GIVING me anxiety and depression.

The other thing that threw me off was that when I would ask other people or doctors about nortriptyline, they had no idea what it was.

 
Old 05-02-2009, 11:17 AM   #6
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Re: In Desperate Need of HELP! PLEASE read my story...

Quote:
Originally Posted by MountainReader View Post
I was diagnosed with "silent" reflux at age 32. I think I had it for years before that without realizing what was going on. I had a chronic cough that wouldn't go away. I was diagnosed with asthma and severe allergies (which I already knew about) and sinus problems causing my cough. It wasn't until my reflux became so severe that my asthma was out of control, despite treatment, that I realized how serious reflux could be. It was just in this last year that I got the nausea you are dealing with.

It sound like you are being aggressive in trying to find a treatment that will work for you. That is a good thing.

I wouldn't worry about taking so much medication in the short term. For about 7 years now, I've been on: Allegra, Flonase, Astelin, Singulair, all kinds of PPI's twice a day, Advair 500/50 (for asthma that is triggered by reflux in addition to environmental things), Albuterol, and now stomach anti-spasmotics. I've done sinus rinses for years. I'm also receiving immunotherapy. I can't say I have had side effects from taking these meds long term. The only med side effects I've had have been to meds I was on short-term.

Other things you might try avoiding in your diet are: fatty and greasy foods and citrus drinks and foods for the reflux. Also, you might try reducing your dairy. For the IBS I was diagnosed with, I also avoid eating raw fruits and veggies, especially lettuce.

Have you been to a hearing specialist who specializes in balance? ENT's often have different areas they specialize in. It sounds like you need to do more follow-up with your Vertigo.

I never had ANY symptoms or problems before this for anything. The only thing I had were the 2 acute vertigo episodes. I've followed up and they have nothing to say. If I'm currently not feeling dizzy and they do hearing tests and check for fluid in my ear, and find nothing wrong, what's there to do? The only thing they did find was something in my VNG tests which does show a slight imbalance in one of my ears, but it is not that abnormal. Again, if anything, this would cause dizziness or imbalance, symptoms I'm not feeling. The only way to cure that "imbalance" is by doing physical therapy which makes you feel dizzy. I just can't put myself through that on top of everything right now. I don't feel this has anything to do with the Vertigo.

 
Old 05-02-2009, 11:19 AM   #7
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Re: In Desperate Need of HELP! PLEASE read my story...

Quote:
Originally Posted by mythought View Post
You have to just keep plugging away. I know it is hard so hard in fact that it seems at times you just want to quit. But the truth is you're not going to quit because you want to live and you want to live feeling like you did before all of this started. I know because I am in the same boat. I felt great and happy and tehn all of a sudden out of nowhere and for no reason I was so ill I thought I was going to die. I have been feeling this waqy for a little over a year. I would go in to a dr. and tell them where I hurt and they would run a test that would end up NOT showing anything wrong that could be causing my problem yet they would find some other thing. I kept getting a feeling of a lump in my throat and things would stick every now and then. But not my main problem. Anyway they sent me to a gastro who did an endoscopy and found i had barretts disease. Not going to go into what that is but to have barretts you have to of had SEVERE reflux for a LONG time. Which of course I never once felt and I am 42. They started prescribing antacid stuff like prilosec and nexium kapidex. Why did they do all of these? Because once I started them I sarted having heartburn from hell so much so that I had it all day all the time. It never went away. So now I had this new symptom to worry about and still no answer to my first problem. I said all of this to let you know that you just have to keep trying and keep talking to doctors and keep researching on the internet. make sure and write down in a journal everything u eat drink when u go to bed when u get up and I mean everything u can , and here is why. You have a problem that no one can figure out YET. This will indeed begin to frustrate your dr. and he may or may not say it is anxiety, even though you know it is not also he may start having you have all these tests that you dont need for what you feel.By having this journal you can discuss with him how it is not anxiety nor is it a cause for seeing a gyno. I would sau that you have silent reflux which means that you have it but dont feel it like most people with "heartburn" do. Have an endescope and get checked for h-pylori bug which could cause the nausea. I would try omeprazole 40 mg it works wonders. They want to put everyone on all this new stuff due to the drug reps. and drug companies. This can be gotten with a prescription or u can now get the 20 mg over the counter. Just dont give up keep looking and keep going to a dr. Find out if you can indeed go into a place like MAYO or Vanderbilt for some testing. Please let me know how it is going. I feel for you because I am in the same boat. As I said one day fine the next like I was also 80 years old with some debilitating disease and going to die. I am better than I was a year ago but still nothing like I was before I got sick. Seriously, email me and let me know how you are and what you are trying and what your docs say. I am new to this board stuff and have no clue as to how to find things. LOL. Just keep trying honey afterall it is all you can do if you want your life back.
I've checked for H pylori multiple times and am negative.

What's omeprazole?

 
Old 05-02-2009, 03:27 PM   #8
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Re: In Desperate Need of HELP! PLEASE read my story...

Maybe I should go back on it? But I really don't feel I have anxiety or depression. What I feel is that this illness is GIVING me anxiety and depression.

The other thing that threw me off was that when I would ask other people or doctors about nortriptyline, they had no idea what it was.[/QUOTE]

The above is exactly why you should take it, the problems you are having would give anyone anxiety and depression, so please go back on it, like I said before, antidepressants treat more than depression. Let me know how you are doing?

Sunny

P.S. my son is also going thru the same thing, I just had the same conversation with him, he is in his 30's.

 
Old 05-02-2009, 04:00 PM   #9
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Re: In Desperate Need of HELP! PLEASE read my story...

Dear Zoe....bless your heart. I am so sorry you are going through all this. Expecially at your age. You are so young and in your prime. You shouldn't be feeling like this. Most likely I would think it would be some depression and anxiety. Even when you don't think it's going on in your life, sometimes it is and your body is just telling you that it's under pressure. I also think you might have silent acid reflux. I have that too. A good indication of that is the lump in the throat. I have alot of reflux where I don't feel the burning sensation but I will have this gunk in my throat and a little cough. It is a post nasal drip thing that comes from the reflux and come back down your throat. All of this can make any of us depressed.

If you were old like me ( I am 44) I would say you might be going through perimenopause. Ugh! Believe me you won't like this at all. I am totally confused with my symptoms right now to be honest. I feel so crappy and also wonder if I am dying....and I am not sure if it is my pms, low hormones,perimenopause and low thyroid issues, or if I am depressed and needing medication for that and then it will treat all my aches and pains. It's like which is causing which? I don't know which thing to treat or to treat them all. I don't want to over medicate. I am sure you don't eithor.

Today is rough for me. I am curled up on my bed with my heating pad just feeling like my good life has been robbed from me. You may have to look at your circumstances too. In my case...my husband and I are close to losing our house in a few months to foreclosure, we are barely paying the bills, I am sad because my two daughters and grown up and in their early 20's and moved out, so I have the empty nest syndrome. I am kind of having a midlife crisis. I don't know where to go with my life and I feel all broken down.

You on the other hand are just 29. I don't think it's hormonal. Maybe you are under stress. Regardless you will get it figured out. Don't let this rob you of this happy time in your life! Hang in there! Find all the help you need.

 
Old 05-02-2009, 04:41 PM   #10
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Re: In Desperate Need of HELP! PLEASE read my story...

If I have silent acid reflux or post nasal drip, then why isn't my SEVERAL MONTHS of taking nasanex, allegra, and nexium or kapidex helping? How can you be on such high dosages of medication for months and see no improvements?

What makes post nasal go away? Can acid reflux literally just not go away, ever? I don't understand how people can live with this.

I can't go out, can't eat, can't be happy really. I know people have bigger problems in their life and thank god I apparently don't have some sort of life-threatening illness, but I feel like my life has literally stopped anyway and I can barely find any happiness during any point of my day. It just gets worse and I hate feeling physically nauseous PERPETUALLY every moment of every day.

I've done probably everything everyone has come up with and nothing works. I'm young, healthy, thin, eat right...I just don't see how this can suddenly pop up and never disappear and apparently doesn't happen to anyone else in the world cause all my doctors are stumped.

1SUNNY1 - Should I go back on the nortriptyline as a way to just mask my symptoms or do you think it's taking care of the CAUSE of my symptoms?

By the way, THANKS SO MUCH to everyone who is providing their 2 cents. Greatly appreciated.

Quote:
Originally Posted by TEdds83 View Post
Dear Zoe....bless your heart. I am so sorry you are going through all this. Expecially at your age. You are so young and in your prime. You shouldn't be feeling like this. Most likely I would think it would be some depression and anxiety. Even when you don't think it's going on in your life, sometimes it is and your body is just telling you that it's under pressure. I also think you might have silent acid reflux. I have that too. A good indication of that is the lump in the throat. I have alot of reflux where I don't feel the burning sensation but I will have this gunk in my throat and a little cough. It is a post nasal drip thing that comes from the reflux and come back down your throat. All of this can make any of us depressed.

If you were old like me ( I am 44) I would say you might be going through perimenopause. Ugh! Believe me you won't like this at all. I am totally confused with my symptoms right now to be honest. I feel so crappy and also wonder if I am dying....and I am not sure if it is my pms, low hormones,perimenopause and low thyroid issues, or if I am depressed and needing medication for that and then it will treat all my aches and pains. It's like which is causing which? I don't know which thing to treat or to treat them all. I don't want to over medicate. I am sure you don't eithor.

Today is rough for me. I am curled up on my bed with my heating pad just feeling like my good life has been robbed from me. You may have to look at your circumstances too. In my case...my husband and I are close to losing our house in a few months to foreclosure, we are barely paying the bills, I am sad because my two daughters and grown up and in their early 20's and moved out, so I have the empty nest syndrome. I am kind of having a midlife crisis. I don't know where to go with my life and I feel all broken down.

You on the other hand are just 29. I don't think it's hormonal. Maybe you are under stress. Regardless you will get it figured out. Don't let this rob you of this happy time in your life! Hang in there! Find all the help you need.

Last edited by Zoe26; 05-02-2009 at 04:44 PM.

 
Old 05-02-2009, 05:06 PM   #11
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Re: In Desperate Need of HELP! PLEASE read my story...

Personally Zoe...I know I am not a doctor but sometimes I think people can over medicate. I am not saying don't take your doctors advice, however I have sought out the help of naturalpathic pharmacist and health food stores for alternative things to do. I can't take all those presciption acid reflux meds. I am allegic to sucralose (and artificial sweetner) put in most of those. They use binders too that could be making you not feel well. For this very reason I have made a decision to go back to college to be a pharmacist and go into wellness with it. I am going to help people like you and me. To treat the whole person. Not just the symptoms. I really pray you will be feeling better!! This is no way to live.

I take some natural tablets from the healthfood store, as well as digestive enzymes. I use Tums as needed and take Xyzal for my allergies. (I do have bad allergies) Its so tricky trying to balance our bodies into feeing well. My goal in life is to help others. I pray that God well give me the Grace and ability to go through college in my 40's.

 
Old 05-02-2009, 06:07 PM   #12
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Re: In Desperate Need of HELP! PLEASE read my story...

Zoe26, I definitely would go back on nortriptylene if it helped you in any way. I don't think it is masking anything and for whatever reason you have all these symptoms, it helped. I hear the same thing from my son and my nephew. I have Fibromyalgia and I fought taking antidepressants, but after taking cymbalta, it helped me so much with the pain, I did research on cymbalta and it said it treats pain as well as depression. You should do a research on nortriptylene, see what it tells you.

Sunny

 
Old 05-03-2009, 11:40 AM   #13
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Re: In Desperate Need of HELP! PLEASE read my story...

Quote:
Originally Posted by 1sunny1 View Post
Zoe26, I definitely would go back on nortriptylene if it helped you in any way. I don't think it is masking anything and for whatever reason you have all these symptoms, it helped. I hear the same thing from my son and my nephew. I have Fibromyalgia and I fought taking antidepressants, but after taking cymbalta, it helped me so much with the pain, I did research on cymbalta and it said it treats pain as well as depression. You should do a research on nortriptylene, see what it tells you.

Sunny
I don't know if it helped me in any way. I took it for 3 weeks and didn't feel a difference. I google it but not much information comes up. I still don't get how it would be the right medication for me unless I'm suffering from depression. I want to know what's the actual cause of my problem, which no one can figure out cause no medication works 100%.

Does post-nasal drip go away usually? What's the best medication for that?

Would you guys recommend or not recommend trying Carafate?

 
Old 05-04-2009, 09:30 AM   #14
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Re: In Desperate Need of HELP! PLEASE read my story...

So sorry you're having to go thru this as I know how frustrating it is. I was diagnosed with GERD/LPR at age 48 and have had chronic symptoms ever since. The LPR reflux is much harder to control for me and the feeling of PND has been especially bad causing constant sniffling and feelings of having to cough. The nasal steriods help me some and saline rinses but I get worn out from all this coughing and clearing my throat. Good luck to you.

CharBerry

 
Old 05-06-2009, 10:55 AM   #15
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Re: In Desperate Need of HELP! PLEASE read my story...

So, can anyone else throw in their 2 cents? Is it normal to be on Kapidex TWICE a day, and still feel the lump-in-the-throat symptoms? Do you think maybe this isn't acid at all? What else can I do, eat, take to help?

What else can be causing just the symptom of nausea or lump in throat feeling?

Has anyone ever done the Bravo pH test, is it dangerous/uncomfortable at all?

And has anyone ever also been prescribed Clonazepam to help with the reflux? I'm uncomfortable being on it but when I try to ween off, I feel worse. But what could that even mean? Now I'm stuck in a web of drugs and I don't know what's making me better or worse.

I'm sorry I have so many questions but my doctors are all pretty clueless and unhelpful and I need some answers. Thanks again.

 
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