I was doing some research on Jamie Kaufman and found really interesting stuff. I am definitely going to discuss these two meds when I see my ENT this coming Tuesday. Some of my symptoms are a a little different from others but from my research I've found that they are all symptoms such as: ear fullness, or ears feeling congested, unable to pop kind of feeling. Also, the clicking I sometimes get on one side of my throat I've also had in my ears at times (I would like to know if others have this specific symptom?) Gland swelling is the other difference I have (don't know if I cause this myself by always messing with my throat or not, it comes and goes) does anyone else ever notice any slight gland swallowing right under the jaw area, specifically on just one side? Then of course all the nice other symptoms, the mucus, throat clearing, feeling of lump in one side of throat, pnd, and alas the anxiety and stress that it all causes! I feel like a total nut job!
But, I'm wondering about these specific meds, what is Gabapetin and Peptigon and are they available? I also agree on what alot of people have said that an anxiety/relaxer drug should be prescribed to all of us suffering with this as it really causes alot of anxiety, stress and fear which seem to take over your life. Does anyone else feel that way? I mean this disease has consumed my every waking thought, worrying about if it is this or that, etc!! I already had severe Acid Reflux disease before this and then this started when I developed an URI, like so many others.... ughhhh...... well, let me get off my soap box now... Just would like to hear others thoughts!
Peptigon has mysteriously gone quite. There was a small trial (very small) with some success and then radio silence. You can find a few posts relating to Peptigon on this board. So pretty sure that it is not available yet, not sure if hasn't reached the expected efficacy, etc., etc., . I too have been trying to find out the status. There is a website, but it is pretty much a shell. Plus, my understandng is that Peptigon attacks Pepsin which Dr. Kaufman and others charge with being the evil do-er in your throat that is activated by acid. Pepsin eats away your throat tissue when activated by acid since there is no protein there for it to breakdown. The throat just doesn't have the protecitve layer of the esophog. If your problem is vagal though - not sure how this would bring total relief? You are spot on that folks are having success with neuro drugs. I have many of your symptoms.. and some others, and was told that I have LPR and PVVN - placed on 2x daily PPI and Klonopin to treat the malfunctioning Vagus Nerve - which seems to be the typical culprit. I have also seen (sorry for spelling) Neurontin, Elavil, Lyrica all providing relief - additionally, Xanax has helped many - including me. The Xanax seemed to relax the neck and ease my breathing and throat tightness/globus. The Klonopin didn't work miracles for me, so I am back to the doc in about a week to adjust to something else. I just didn't like the fact that it zoned me out which wasn't good for work and being happy in general. It is clear to me that it is trial and error to find the combo that works for you - - there isnt a LPR drug cocktail out there yet that is a universal solution. Problem might be that, for some, the problem is more of an acid/pepsin issue, for others it could be that you have nerve damage caused by a trigger event or virus. Both are complicated. In my instance, I am refluxing (PH test confirmed) but esophogeal mahnometry shows that my UES and LES are functioning just fine. Totally strange. LEMG shows nerve damage at 4 testing point is the throat. This "LPR Thing" is not a one size fits all problem. Look for postings by Seeking Sunrise... he has some nice summary info on members who have had success with nerve-focused drugs. On a good note, I woke up today and my tongue was only slightly white and chalky - better than yesterday which looked like I brushed my teeth with milk. Also, stopped the Klonopin last night, and both of my eyes are open. Thx -
The Following User Says Thank You to tclarklpr For This Useful Post: worrywartmom39 (05-14-2011)
I took Gabepentin for a year for a seemingly unrelated problem...burning mouth syndrom. Didn't do anything to make that better, but I haven't had many LPR problems in quite a while. I used to take at least 2 40 mg omerprozoles a day and now I take one 20 mg. I have moved up from Gabepentin to Lyrica for my burning mouth and that is working quite well for that and still have my LPR under control. I don't know if this relates to anything here, but does anyone feel like certain things applied to your skin leak into your mouth? I don't even know if this is physically possible, but I've been using different kinds of sunscreen...for yet another unrelated problem...and I swear I can taste it in my mouth.
I'm interested in your thoughts of burning mouth syndrome being related to LPR. I also have both, but never thought about them being related. I got the BMS about 10 years ago after a dental procedure, and suffered with it for years. It SLOWLY got better, and finally settled in my upper molars, causing me to clench or press my teeth together constantly. (Yes, I have a mouth guard, but I still clench and press!) Anyway, I also have LPR. No heartburn, but bad reflux during the night when I'm asleep. I wake up most mornings with sore throat and tons of mucous and dry cough. I have big problems with most meds, so have been unable to take Prilosec, Prevacid and Pepcid. Right now my only "treatment" is a wedge pillow to raise my head, neck, upper body. I never get a good night's sleep on the darned thing, but it does help the LPR.
I never thought much about BMS and LPR being related, but the more I research, the more I see there may be some connection. I also clench and press my teeth together, which I know doesn't help BMS. I never had LPR until after an unsuccessful TIF procedure to correct my acid reflux. a few years back. I already had BMS at that point. I have tried everything possible to correct or make it torrerable my burning mouth. I now am taking Lyrica and clonnzipam for my mouth and have had no LPR related issued in quite a while. Either the meds help both problems or they are somehow related. My gastro doctor says there is definitely no connection because for awhile I though the burning was caused by reflux into my mouth. I have yet to find a doctor or dentist who knows anything about burning mouth syndrom. I really had never heard the theory that nerve meds helped LPR. Any info anyone has will be appreciated
Sad but true - dentists and ENT doctors know nothing about BMS. You try to explain it to them and they sit there and look at you with a funny little smile on their face that says, "This woman is nuts!" LOL
The only doctors who know what BMS is, and will treat you correctly are Neurologists. I had a fabulous one for many years, but unfortunately, he retired about a year ago. I haven't seen anyone since, but will have to soon, as I'm running out of meds.