In Desperate Need of HELP! PLEASE read my story...

  • Thread starter Thread starter Zoe26
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For some types of symptoms there is a higher NF success rate than for other types. There are lots of different research articles out there on this. It really depenRAB on the population they did the surgery on.

For some, there is also temporary success that doesn't last long term. That may skue the nurabers of the studies depending on how long post-surgery they were researching.
 
I suggest trying a foam bed wedge. Get a good one, such as memory foam. If you are a side sleeper, get the "Side sleeper bed wedge" from "Relax the back". It's expensive, but your doctor can prescribe it, and your insurance should pay for at least some of the cost. I've had LPR for years and while medication and diet help, I'm finding that you also have to elevate your head at night. Don't try just pillows - that won't work.
 
OK, apparentely only a biopsy for a h pylori or whatever other infection was done, but only from the stomach area.

ENTs look into the throat with a scope but its not an accurate test for acid reflux, I've been told by my GIs. He obviously saw some redness or something, but it might not necessarily be acid, but this doctor was very old, experienced, top-notch, so I trusted him when he said he saw that I had severe acid reflux.

What kind of spray would clear up the irritation in my throat if its not indeed acid reflux related?

My GI doctor the other day mentioned doing another endoscopy but doing a biopsy of my esophagus to see if it could be Eosinophilic Esophagitis, which I read up on and that doesn't sound right. But he did mention that if it were that, I would stay something down my throat instead of into my nose.
 
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.
 
Your problems sound very similar to what I had about 3 years ago. I went through the same things for about a year until they found my problem. Has your doctor check the function of your Gall bladder and not just take a picture of it like they did to me? All my test were normal except that one. My Gall bladder was only working at 8% which was causing my chronic nausea. I had surgery within a few days of finding out to remove my gall bladder and my nausea is 100% better than it was before. I still have a little nausea usually once a month causing by reflux, but I'm much better now. Hope this helps.
 
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 cyrabalta, it helped me so much with the pain, I did research on cyrabalta and it said it treats pain as well as depression. You should do a research on nortriptylene, see what it tells you.

Sunny
 
In response to Trymester's question, I had the Nissen Fundoplication last fall. While it has been effective for me, it really is too serious to be a standard treatment.

The NF is not 100% effective for everyone. Certain types of reflux symptoms have more success in being "cured" by this procedure than others. There are alwyas potential side effects for any surgical procedure. Since my NF procedure, I've had problems with Nausea that I never had before. On top of that, I'm no longer able to vomit because the NF physically keeps that from happening. I just end up wretching when those episodes hit.

With the Nissen, the stomach is stitched around the esophagus. Every time the stomach contracts, it becomes like another lower esophageal sphincter and keeps things from coming up. It is good for the acid and food reflux. It isn't so good if you need to vomit. It also prevents a lot of gas from passing back up. This can often result in uncomfortable stomach gas bloat. It is called Gas Bloat Syndrome. This is a lifelong thing. I also have a lifelong restriction on swallowing large bites. My surgeon really stressed the need to chew food well and take small bites so the food goes down. If not, it gets "stuck" above the wrap. Believe me, it is really painful what that happens. I was also warned against any future weight gain as it could pull the stitches apart.

If your acid reflux is mild, it really isn't a good option. For severe reflux, it may be an option depending on your symptoms and what the tests say.

In my case, I had severe breathing problems caused by acid constantly irritating my lungs. NF for people with respiratory symptoms does have a high success rate.

I think the NF typically has about an 80-85% success rate overall.
 
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 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 kinRAB 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 meRAB long term. The only med side effects I've had have been to meRAB I was on short-term.

Other things you might try avoiding in your diet are: fatty and greasy fooRAB and citrus drinks and fooRAB 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 sounRAB like you need to do more follow-up with your Vertigo.
 
I haven't read through this entire thread yet but I've just read some more and yes acid reflux disease can last the rest of your life just like any other disease. It kills me on a daily basis. I get relief from acid medication but the problems always ALWAYS come back for more. Once you develop chronic inflammation from this, it's literally impossible to get rid of. Acid reflux pills will hide the problem but truthfully, long term use of acid pills can mess with your proper digestion and make things worse. With lack of acid in the stomach, you cannot properly digest food.

I use them only as needed though I am fair warned I could end up with esp cancer if I don't take them everyday.

I agree about the digestive enzymes. If you've taken acid pills too long and lack acid, it can cause the same exact problem as having too much acid. Digestive enzymes that include Betaine Hydrochloride can really help that. Infact I had barrett's esophagus and after months of using this multi-enzyme formula, had myself retested and the barrett's disapeared.

Are you doing anything to irritate your insides? Ibuprophen, Aspirin, any anti-inflammatory's (big no no for these type of problems). Do not eat food too hot, it will stir up a spasm like that worse than anything.

Nortriptlyine does not help this type of problem you are referring to. Infact, it can cause it. Medications like clonazepam, beware, can cause you to get into a chronic depressive state. They are infact, downers.
 
One of my ENTs suggested a CT scan cause he saw that I was still apparently very congested even while on all these nasal and sinus and allergy meRAB. I just don't like to do cat scans unless they are absolutely necessary and this seems like an unnecessary test. What would he find in there anyway? And for it to be accurate, I'd assume I'd have to get off all my medication, which again, scares me to death cause I'm scared I'll suddenly get back to feeling horribly nauseous like in the beginning.

The confusing thing is, my original symptom was nausea. Now on all the meRAB, its just the throat thing. So I don't know what my REAL symptom is to base my diagnosis on. It's getting very confusing. Whatever the case, my doctors covered every base of what could be causing this problem, and I still feel sick, so what the hell????? That's all I want to know. Why isn't anything working? What else can it be, what else can I do, it's like neverending with trying all these meRAB for months and months and not getting better, only causing my frustration and depression and messing with my body.

Btw, about sinus issues, I never noticed having any before this. Can you have chronic sinus problems with no noticeable symptoms until suddenly?

Anyway, thanks again, Never again.
 
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.
 
Thank You for your response Mountain,

I guess in your case you saw that the Nissen would have done you more good than harm. Do you still think you made the right choice?

I personally, have a mildly incompetent L.E.S., I have some breathing problems, but I'm not really sure if that is related to my minimal GERD. It may be related to a mild scoliosis I have, or to my slightly enlarged liver. So, I don't know if I would be a candidate for the Nissen, because I'm still not sure what's up. I'm 24 yrs old now, and I'm soon going to go on Nexium for 1 month to see what will come of it.
 
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?
 
I had my reflux under control for about 7 years. Then everything just stopped working. I even tried taking every PPI on the market, twice per day. Nexium messed up my gut pretty badly and gave me symptoms I didn't have before. Aciphex, Protonix, Zegrid all did OK, but not great. Prevacid Solutabs work best for me, but even on that my reflux was far from being under control.

I continue to sleep on an incline. I try to watch my diet and I've lost weight.

When the reflux got to the point I had a scary breathing incident, the surgery became a very real option for me. In fact, it was after testing, Modified Barium Swallow and Esophagram, that my Pulmonologist actually recommended the surgery.

I'm very happy that I had the surgery. Being able to breathe well is worth the price to me of the other consequences I have to live with.

Your Gastroenterologist would be able to tell you if you are a surgical candidate. They will want you to try all other options first though.

If you continue to have breathing problems, even mild, I'd recommend finding a good Pulmonologist. Having action plans and treatments in place have made all the difference in quality of life, and life itself, for me.
 
It's called a HIDA scan. In this test, a radioactive material called hydroxy iminodiacetic acid (HIDA) is injected into the patient. The radioactive material is taken up by the gallbladder to measure gallbladder function. This test also is referred to as cholescintigraphy. If you have any problems what so ever with the function of you Gall Bladder, you will have constant nausea that can't be relieved even with meRAB. I was told by my Doc that a normal Gall bladder works at a percentage rate between 40 to 60%. My rate happen to be at 8% which was the lowest she has seen in awhile. The test is not bad, it takes about two hours. You can get alot more details about the Hida scan on WedMd.
 
To Mountain Reader: Hello. You have been a constant contributer to the message boarRAB regarding Nissan fundoplication, and always have good insightful information. I had a Nissan fundo in Feb. 2009 and I am losing weight (cannot afford to lose anymore), but am most concerned with the gas bloating syndrome and lump in my throat that I have as a result of the surgery. Do you know of others that have these issues and are you able to burp? I cannot burp and have a lot of gas and I am miserable. I am returning to the doctor later this month and getting another upper GI done. I wish I had never had the fundoplication done - it has not helped my original symptom of bad taste in mouth and a lot of congestion. Now I have more problems than ever. Can anyone help????? Please write soon
 
Did this ENT CT scan your sinuses? Chronic sinus issues will make you feel like crap + cause chronic fatigue. If this is not a spasm issue in your throat, and I believe it is, but otherwise, you can have constant ongoing pain in your throat simply from the sinus/allergy/post-nasal drip issues. Reflux can also make your throat chronically hurt.

A normal gastric emptying study does not mean reflux doesn't exist. Mine was normal, and I've had SEVERE reflux. Even an endoscopy cannot pick up the fact that your throat muscles are tightening and going into a spasm. That is something a doctor isn't going to see on a test.

Try Levsin for that pain. You can even try Flexeril or Skelaxin if that doesn't help but I'd recommend that first. Flexeril is actually my fave muscle relaxant.

Promethazine, I always had great success with that for nausea, using the suppository, not the pill form.

The fatigue I go through makes me cry like you are talking about but I only do it on my worst days. I feel like my body has aged to 150 and wants to die. Being eat up with cancer, I wouldn't be shocked by either. When I was in physical therapy, they said my body had aged twice of my actual age.

I think we both need to learn a good way to cope with our health problems, I know how it can drive you mad.

You need something to make you feel better. Try a switch in medications, you might consider therapy to have someone to talk to about how down this is making you feel, and maybe physical therapy to try and build your strength back up.

I'll quit being a pest now, but I hope this helps ya.
 
Took an Arabien, went to bed, and could not go to sleep, because there's one more thing I felt like I should talk to you about.

The reflux. If your gastroenterolgist did the endoscopy and did not biopsy your esophagus and stomach area, they cannot determine just by looking, whether or not inflammation is there, FACT IS, it may look okay to the visible eye, doesn't mean it is.

But if a biopsy was done and no inflammation exists, I don't think I'd worry too much about acid reflux being an issue. Too much acid production in turn causes irritation to your esophagus, stomach, and even possibly your throat.

But where your ENT looked down in your throat and obviously saw a problem visible to him, something had to of been wrong there. With the types of problems you have with your sinuses/allergies/post-nasal drip, it could cause that irritation and be the cause of what is bringing on the spasm in your throat. The anti-spasmotic or muscle relaxants could very well make that problem go away but whatever is causing the irritation down in your throat neeRAB treated. CorticosteroiRAB may be a good option to try. One of those little suckers can make the worst sore throat vanish in a days time. I've tried allergy, sinus meRAB myself, nasal sprays: flonase, nasonex, etc, with only temporary help from them, might work a few weeks then nothing. You might just need something that will help clear up the inflammation down in your throat & dry up that mucus production, if possible, because inflammation is a hard one to battle and get rid of completely. Maybe you should ask your ENT about doing a biospy where he saw those problems down in your throat. It could clear up the question of what's wrong. Goodnite.
 
yh dats y im havng Laparoscopic nissen fundoplication surgery coz my meRAB are nt helpng n also i dnt want to keep tkng meRAB . Do you suffer from acid reflux everyday? howcome your not any meRAB? is it under control?
 
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