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  • LPR Sufferers who don't respond to ppis. Have you tried a GABA agonist like Lyrica?

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    Old 11-17-2010, 05:21 PM   #1
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    LPR Sufferers who don't respond to ppis. Have you tried a GABA agonist like Lyrica?

    I think a lot of us on here are struggling with faith.

    We have these obnoxious and real symptoms. Real mucous comes up after we eat for instance. We really have to cough from a tickle. We really do feel some annoying ball in the back of our throat, and we'd love to think we are just imagining it.

    So we end up with the GI or ENT and he throws a pack of ppis at the problem and says "try this for 3 months or so" and tell me if it's working.

    So over 3 months, you take 5 nuclear bombs to the stomach that would immediately relieve the heartburn of a typical GERD sufferer. But.... your throat still hurts.
    "Have faith," you are told, "Try a different ppi. This one is not right for you. Try kapedix." So you try it. Maybe this one will work. But does it? Well, after another 5 months, there were some fluctuations in your symptoms. Maybe it was the kapidex, you tell yourself hopefully.

    My question is this: Does anyone on ppis for LPR (that had a sudden onset with no previous heartburn/GERD issues) ever actually experience any relief from their symptoms, besides the comfort of faith that maybe someday, if you are a good boy or girl, it will clear up?

    I think we need to try a new first line of medication when we exhibit these symptoms. I think we all need to try elavil and pregabalin (lyrica). I've heard it's good for fibro-myalgia and diabetic/herpes/arthritis neuropathy. We basicallly have fibro-myalgia of the throat. Wouldn't it work there? That's what I'm going to try in the next few months, after I talk with a pain doctor in Germany. I will definitely be posting the results if it works for me. If it doesn't, at least I tried to look for a solution rather than clinging with blind faith to a ridiculous solution that did not work, and was not going to work.

    Any sudden-onset, no-GERD sufferers of LPR, and anyone in general, please let me know what you think. I hope my message didn't sound too confident, or like I know what I'm doing. I just think we have to start trying different solutions instead of pretending this ppi thing around the clock with no results makes sense. It's becoming a ridiculous fairytale.


    Last edited by Seeking Sunrise; 11-17-2010 at 05:35 PM.

     
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    Old 11-19-2010, 11:49 AM   #2
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    Re: LPR Sufferers who don't respond to ppis. Have you tried a GABA agonist like Lyri

    Symptoms improved during the treatment period in both study groups with no significant difference. Adequate relief by the end of the treatment period was reported by 40% in the pantoprazole group and 42% in the placebo group.

    From:

    http://pubmedcentralcanada.ca/articlerender.cgi?artid=1101851

    Important article for ANY LPR sufferer who does not have typical GERD symptoms. If you have GERD and esopagitis, that became LPR, then I really think that is a different thing, and of course you need ppis, for the GERD anyway.

    But for those of us who have LPR symptoms only, I am firmly convinced we need to drop the ppis and try something else. We have to dare to say that yes the ppis are all we've got, but they don't do anything, so in fact, we have nothing. It's up to us to try to find something. We should just try every single thing out there, and let others know how it worked. The ppis do not work. If you got better on them, great, but so did the same proportion of people who took sugar pills!

     
    Old 11-19-2010, 12:22 PM   #3
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    Re: LPR Sufferers who don't respond to ppis. Have you tried a GABA agonist like Lyri

    i wouldn't try Lyrica (a neuroleptic) even if i was paid to do it, neuroleptics in some people cause Akathisia which is basically restlessness, it's extremely desperating not to be able to sit still or watch movie and focus like normal people, not everyone has this sensitivity though, i happen to be one of the lucky ones, happened to me with Reglan as well.

     
    Old 11-19-2010, 12:24 PM   #4
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    Re: LPR Sufferers who don't respond to ppis. Have you tried a GABA agonist like Lyri

    Thanks for your feedback. Yeah, lyrica isn't for everyone. But I still think, if it doesn't have side effects, it could be really good for that person's LPR symptoms. I'm going to guinea pig myself for this experiment. But yeah, I hear a lot of people just sleep. Still, don't worry about sleeping with a full stomach, since you probably don't have acid reflux anyway.

     
    Old 11-19-2010, 12:28 PM   #5
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    Re: LPR Sufferers who don't respond to ppis. Have you tried a GABA agonist like Lyri

    Quote:
    Originally Posted by Seeking Sunrise View Post
    Thanks for your feedback. Yeah, lyrica isn't for everyone. But I still think, if it doesn't have side effects, it could be really good for that person's LPR symptoms. I'm going to guinea pig myself for this experiment. But yeah, I hear a lot of people just sleep. Still, don't worry about sleeping with a full stomach, since you probably don't have acid reflux anyway.
    i hope lyrica works for you, i don't have the balls to try a neuroleptic again, i've had horrible experiences with others, i'm interested to know if it actually helps you though, i would do anything to get rid of the 1 month and counting lasting hoarseness :/

     
    Old 11-19-2010, 12:46 PM   #6
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    Re: LPR Sufferers who don't respond to ppis. Have you tried a GABA agonist like Lyri

    Strange that you would make the connection between LPR and some neurological problem. I have had a problem for two years...burning mouth syndrom, which they feel is neurological, for lack of knowing anything else. I have been on Gabepenten, which is what the insurance company will pay for instead of Lyrica. I take 600MGs 3 times a day. Now, for my LPR...I used to take two to three PPIs a day, but now I find I can eat anything, never have heartburn and I only take one PPI. The trick is I can't eat two hours before I lie down. It never occurred to me that there might be a connection between my LPR/acid reflux, which the doctors keep telling me is very minor and my other neurological (or whatever it might be) syndrom. I;ll have to check that out.

     
    Old 11-19-2010, 12:51 PM   #7
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    Re: LPR Sufferers who don't respond to ppis. Have you tried a GABA agonist like Lyri

    One thing for sure though: Really don't be quick to believe that this is acid reflux. First of all, placebos work just as well which means:

    1. it could actually be partially in our heads or related to overall health
    2. it could be nerve related
    3. it could be some virus or something that they just haven't identified
    4. maybe a bizarre allergy

    The point is, there are many of us getting this, and they are just treating us with the catch all of GERD essentially, and it's not GERD at all. This is something that the doctors don't even know. Try Asian medicine or naturopaths if you don't want to try nerve drugs, but I just really am strongly against ppis, because it paralyses both patients and doctors for months from looking for a real solution. It's totallly totally counterproductive and agreeing to take them for months is just buying time for the good for nothing doctors, who are being released from their actual obligation to diagnose and find a real treatment. A huge waste of time and money, and added suffering for the patient who has to wonder "why don't these ppis work for me? Do i need a different brand? maybe two in the morning? am i just different? maybe my throat needs 6 years of time without acid exposure to heal?" What a bunch of complete horse-s##t!!! If a drug doesn't work more or less instantly, it ain't working. If it ain't working for LPR, acid is not the problem. Sorry but that's how I see it.

     
    Old 11-19-2010, 12:58 PM   #8
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    Re: LPR Sufferers who don't respond to ppis. Have you tried a GABA agonist like Lyri

    by the way, hawkins,

    burning mouth is an lpr symptom for many that really bugs them. you can check it on these boards. it's neurological.

    now we are getting somewhere. you only need one ppi now you say! funny that, with the neurontin and all... You'd think it would loosen your LES, spilling the magical and invisible acid on your larynx (being sacrcastic)

    Try lyrica, and you might only need half a ppi, one time per 2 days.

     
    Old 11-19-2010, 01:12 PM   #9
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    Re: LPR Sufferers who don't respond to ppis. Have you tried a GABA agonist like Lyri

    Quote:
    Originally Posted by Seeking Sunrise View Post

    The point is, there are many of us getting this, and they are just treating us with the catch all of GERD essentially, and it's not GERD at all. This is something that the doctors don't even know.
    i agree they automatically think it's GERD therefore treat it like GERD just because they don't have a clue it's a completely different disease or maybe they do but they have no idea how to treat it, i wonder what my next ENT and gastro will say. What i really hate thought is that in this situation is not the doctor who ends up looking bad for being ignorant (because that's what they are when it comes to this disease) is the patient who seems to be too anxious or "stressed", i've been reading studies that proof that PPI's don't make much difference i told my mom about it (i don't work so my parents pay for treatment and drs.) and told her there's a probability i wont respond to the treatment so she will be prepared for what will happen in a month or 3 and she said "oh so you know more than the doctors" facepalm...

    Last edited by neptunian808; 11-19-2010 at 01:12 PM.

     
    Old 11-19-2010, 07:06 PM   #10
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    Re: LPR Sufferers who don't respond to ppis. Have you tried a GABA agonist like Lyri

    Honestly, tell the doctor to go to heck, if he wants to do the 3 month (it will buy him time while he checks the good for nothing journals) trial ppi period. What good will that do you? Nothing. Our only progress is a united stand that these ppis don't do anythingfor us, and we aren't prepared to any longer accept them as the first line of treatment. Now this either requires that we offer ourselves to experiments (I'd be the first volunteer), or that the doctors start offering new alternative first line alternatives to ppis. Nobody believes Jamie Koufman anymore. She's paying for her beach front properties with money from nexium. Let's not kid ourselves.

    Last edited by moderator2; 11-20-2010 at 05:12 AM.

     
    Old 11-20-2010, 05:07 AM   #11
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    Re: LPR Sufferers who don't respond to ppis. Have you tried a GABA agonist like Lyri

    i'm curious though, how were you able to get lyrica? doesn't that need a prescription? i would try it, i'm desperate to get my voice back, but i can't get my hands on it without going to a dr. first and if i tell them to give me a specific pill, they wont, i know i've tried it before, they just see me as anxious, the fact i have dysthymia doesn't help my credibility with doctors either.

    Last edited by moderator2; 11-20-2010 at 05:10 AM.

     
    Old 11-20-2010, 09:39 AM   #12
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    Re: LPR Sufferers who don't respond to ppis. Have you tried a GABA agonist like Lyri

    Hi Hawkins,

    Instead of being sarcastic, I should be constructive. Did you find that when you started taking gabapentin, your LPR symptoms noticeably improved? Also, do you find your symptoms now to be very managable, or do they take up a lot of your thought still?

     
    Old 11-20-2010, 09:41 AM   #13
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    Re: LPR Sufferers who don't respond to ppis. Have you tried a GABA agonist like Lyri

    about getting a prescription, maybe i just have to tell them i had sudden pain in my throat after a virus, sometimes my tongue burns, and do they think it might be nerve damage. Also, I talked to a larynologist already, and asked him he had used those drugs for so-called LPR, and he said yes.

    In any case, does anyone know how many people actually have this disease?

     
    Old 11-20-2010, 10:10 AM   #14
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    Re: LPR Sufferers who don't respond to ppis. Have you tried a GABA agonist like Lyri

    It's hard to tell if the Gabepenten has anything to do with my acid reflux/LPR. So many different drugs and treatments have happened that I can't point to just one. I had very bad acid reflux and I also had very bad burning mouth. I had a TIF procedure with the hopes that it would improve my reflux AND my burning mouth. At the same time, the doctor (my internist) put me on gabepenten. So, ever since that time I have had no reflux during the day...with the help of my one omerprozole, but at night, I get the acid in the back of my throat if I eat before bed. So, sorry, I can be of no help to you with regards to that issue.

     
    Old 11-23-2010, 08:50 AM   #15
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    Re: LPR Sufferers who don't respond to ppis. Have you tried a GABA agonist like Lyri

    By the way, an interesting fact about Jamie Koufman, the doctor who coined the term "LPR" in the 1980s, and suggested it as an explanation for a spectrum of laryngeal symptoms.

    She was actually a man named James Koufman, and had a sex change, and a documentary was made about it!!!! Not to judge too harshly, but that does seem weird to want a camera crew to film your sex-change when you are respected doctor....

    When I saw that on the internet, last night at 4:00 am, I thought I was in the Matrix or something. "So this is the expert on my condition," I thought, slowly reaching for a nearby box, or two, of paracetomol.

    So I hope this doesn't sound bigotted or backward.
    Another thing about Jamie Koufman is just in January of 2010, she wrote an article called chronic cough on the internet, you can just google it. Basically, she says, "I came up with the idea of laryngeal sensory neuropathy/post viral vagal neuropathy in the 1980s, but didn't both mentioning it until basically 20 or 30 years later."

    WHAT???? Then in the article she describes all kinds of unfortunate souls, like 19 year olds who got a URI, had a chronic cough, even got surgery to stop their "acid reflux" and then showed up at her office. She gave them ppis of course because they are all "super refluxers" and "abnormal". Then even though their throats cleared up, they had all the unpleasant symptoms still, so she gave them........... elavil and neurontin. It seems like every one of the stories ends with the symptoms clearing up.

    Anyway, food for thought. By the way, if you want non-acid producing food, sure to clear up your nasty throat symptoms, be sure to purchase Jamie Koufman's cookbook on her website! This is the leading expert on LPR in the world, I guess.... We are up the proverbial creek, friends....

    Last edited by Seeking Sunrise; 11-30-2010 at 07:33 PM.

     
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