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Old 10-20-2011, 12:17 AM   #76
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Re: My Story of Eustachian Tube Dysfunction

Mia, for many people chronic and/or acute sinusitis is the leading culprit. The trick in such cases is to determine and resolve the cause of the sinusitis.

Based on what I've read, it appears that ETD is multifactorial. It can be caused by sinusitis, GERD, TMJD, allergies, Sternocleidomastoid (SCM) Syndome, and who knows what else! Some cases of PET (patulous eustachian tube) are associated with weight loss and hormonal changes. And it's possible that my case of ETD stems from the year-long Herceptin treatment I received for breast cancer. Since Herceptin can affect alveolar epithelium cells it could certainly be implicated.

Wish more people were studying ETD. Found a couple good articles on Eustachian Tube surfactants and their possible role in middle ear pathologies, but I can't post links (it's apparently a violation of board protocol). The majority of the ET epithelial surface lining is comprised of lipids, around 90%, and I believe the remaining 10% consists of proteins. One article noted that "an 'antiglue' function of ET phospholipid secretion could therefore be more critical for the proper functioning of the tube than any ability to reduce surface tension," a function associated with lung surfactants. In reading these, I thought, maybe something -- an allergy, pathogen, or other agent -- has disrupted the production and/or balance of these surfactants. With respect to ETD, such disruption/irritation/damage could conceivably affect the 'antiglue' phospholipid secretion necessary for healthy functioning. Seems reasonable. Improving recovery of these surfactants would, then, be key in resolving ETD.

 
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Old 10-20-2011, 10:51 AM   #77
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Re: My Story of Eustachian Tube Dysfunction

Just a quick note to say, from the minute I woke up from my et surgery, all my clicking and crackling was gone!! Along w the pressure in my head. It was so weird sleeping last nite. I didn't sleep much because I kept swallowing to make sure there was still no noise!! It was so quiet! I was up at 4 still listening to..... Nothing!!! I tape the show tomorrow and hopefully will find out when it airs. It should show the whole surgery from inside my head. I can't wait to see it.. Easy too, I was eating pasta 3 hrs after. Couldn't even tell he was in my head. Hopefully it will help others like us. That has been my main goal thru all this!! I will keep u posted. I hope u r all feeling better and getting more answers. Thank u for all your support, don't know what I would do without u guys!!!

 
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Old 10-20-2011, 12:43 PM   #78
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Re: My Story of Eustachian Tube Dysfunction

Dlt, soooooo excited and happy to read this! I will write more soon; am on a bus touring Savannah, GA, right now, ha ha! But had to log in and see what u had to say.

 
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Old 10-20-2011, 05:36 PM   #79
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Re: My Story of Eustachian Tube Dysfunction

Oh, DLT, that is FANTASTIC news!!!! Hooray! Hooray! Hooray! I'm soooo happy for you. Can't wait to read more updates. Keeping you in my thoughts. May this be the conclusion of your ETD journey. Blessings!

 
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Old 10-21-2011, 01:33 PM   #80
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Re: My Story of Eustachian Tube Dysfunction

Hi, I have something similar wrong with my ears. It started with impacted wax and an infection before the ear drum in one ear and before & after the ear drum in the other. Then I developed a bad flu. My college-aged child had Strep-throat and my high school child developed Mersa, and I was doing their laundry and thought I had Mersa. I have seen 8 family practitioners, 1 internist, 1 pulmonologist, 6 ENTs, 1 NP, and 1 allergist (air- born and food all negative). I had no health/dental insurance, was going through a divorce, putting a child through college, and unemployed. I went to a community clinic and was given an expired antibiotic, Vibramycin. The pharmacist insisted I stop taking it and gave me the generic Doxycycline, but my ears were now blocked and numb, they felt like someone put a drill bit into my ear and turned on the drill! I could hear myself breathe very loudly and my voice was coming from inside my head. It was sometimes hard to concentrate on what I wanted to say. My ears hurt even after the antibiotics, so they gave me Z-pac. My condition worsened and I now had awful post nasal drip, sore throat, and painful bronchitis symptom, so they tried 90 pills of Bactrim DS. The ENT said I had Eustachian Tube dysfunction, basically inflammation, and there was nothing he could do. I was miserable and my head felt like it was going to explode. I had a constant fever and sweats that subsided after the Bactrim DS. I couldn't work with the fatigue, hearing loss, and intense brain fog. They tried Avelox, & Levaquin, never once asked me if I had a yeast infection or told me to take a probiotic or even eat yogurt! I was sore all over my entire body like I was getting rhuematoid arthritis or something. A Naturopath said the yeast was probably going into my organs and joints, told me to take a probiotic. It made me feel so much better! I went on a good multi vitamin but it had a yeast base so I went off of it and found a different one-much better, no more bloating. Started a candida diet; this helped, but hard to continue. One of the last ENT's I went to was so rude, he was not interested in hearing of my ear infections or anything and he wouldn't explain anything to me, just wrote down vasomotor rhinitis and inferior turbinate on a prescription pad and told me to look it up at the library! He said it takes hours to do tubes in the ears operation, so he wanted to try the corticosteroid flonase first, which I already tried once before & it didn't work. He insisted it was first line therapy, which my allergist said was not true since I already tried it. This time it caused my arm to go out on me. The ENT said that was impossible, but when I stopped taking it my arm use came back. It also made me get the bronchial symptoms back. One doctor said I had water behind the ear drums, the next one said I didn't. I have had 2 CT scans in 2 years that said I didn't. One ENT says it is caused by TMJ that I've had over 20 years, but this never happened before. I went off birth control and went through menopause, how much are those things factors? Is it amalgam tooth fillings ? Where is a holistic dentist? Sinus irrigation with McNeil Saline Kit helps with the post nasal drip as do the vitamins. I developed vertigo after 3 years of this condition, which I understand is incurable. Is this PET? It would make me feel somewhat better to give this a proper diagnosis as it is a very difficult thing to hear the doctor say, "Do you have cancer? when I explain how hard this is, and "You will just have to live with it". It doesn't seem as though they're really trying to help. When new doctors find I have been to 15 other doctors, they just quickly say the exact same thing they see the others have said, and leave the room within 5 minutes flat. With this condition, heat and humidity wipe me out. In the winter, cold brings pain to my ears and rips through my nostrils. My sinus facial area after 4 years is starting to feel cold and tingly.Any help would be extremely appreciated. An otoscopy (finally) showed nothing. I'm happy for you that you found a doctor to help you and wish I could go to be operated on with you! Also, can anyone shed light on why Silver Biotics colloidal silver takes away the PND and sore throat and halitosis?

Last edited by SundanceWoman; 10-22-2011 at 01:22 AM. Reason: Extra important detail

 
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Old 10-21-2011, 03:11 PM   #81
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Re: My Story of Eustachian Tube Dysfunction

Had the best nights sleep in almost 4 yrs. No ear clicking still. Its so quiet. I love it when I drink my ears dont make a sound. But the best is my face pain really is gone. Right now I'm still in shock. Dr. Weeks told me he dilated them almost 40% more so we should have this thing kicked!! I'm taking all precautions tho. Wearing a mask on the plain and disinfecting my hands constantly!! Can't wait to share more about this whole unbelievable adventure!!! Probably on tv in nov but after that the surgery will be on u tube. It was amazing to see it, but everything seemed to happen so fast today!!

 
Old 10-21-2011, 04:02 PM   #82
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Re: My Story of Eustachian Tube Dysfunction

Yay yay yay, DLT! I have been click-clicking my e-tubes all day nonstop except for 2 hours after taking a klonapin. Pressure has been building up off and on at rando
during this whole trip. Went into some antique stores and had a bad reaction; ears blocked within minutes. I hate to give up on my career and my passion for old things. How I look forward to being free of the noise and the pressure sensation. I am so hopeful that you are on the cutting edge of what will soon become a routine procedure to fix all of us sufferers for good. What a journey! Can't wait to hear more and to see your episode.

 
Old 10-26-2011, 03:43 PM   #83
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Re: My Story of Eustachian Tube Dysfunction

I developed my ETI when I lived by a small woods. Never had one before and have always been suceptable to over production of wax and ear infections as a result. I had the flu and strep in my household too. Sinus irrigation of the sinuses helps using the McNeil Saline Kit (or Neti pot). My throat is sore and lungs feel like it is hard to breathe at times, so drs thought it was allergy but I've been tested for air born and food allergies, not allergic. I now have vertigo which is uncurable. Thought you would like to know about the saline rinse, it does help.

 
Old 10-26-2011, 04:43 PM   #84
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Re: My Story of Eustachian Tube Dysfunction

Sundance, Not sure why the colloidal silver helps those symptoms. I read something about the antibacterial properties of silver somewhere, how people used to put silver dollars in their raw milk before pasteurization was common practice. What's interesting is that when I took colloidal silver this summer (via nasal spray) it immediately got rid of a recurring sore throat I'd been having. Haven't had a sore throat since. It didn't help all that much, though, with my ETD, but I couldn't afford a second bottle, so perhaps over time it would have. I wish there was an answer for us all. I can't imagine living with this long-term.

Last edited by msMarieC; 10-26-2011 at 04:45 PM.

 
Old 10-26-2011, 05:31 PM   #85
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Re: My Story of Eustachian Tube Dysfunction

Hi everyone, just checking in after my trip to the southern east coast.

The flights were uneventful (except for the last flight, which I'll get to later), and the trip had its highs and lows, as far as ETD symptoms. I did not get a break from mold allergens as the two hotels we stayed in were historic and very old...one even had a strong musty odor that I noticed as soon as I entered the building. I just did the best I could so that my condition wouldn't ruin the trip for my family members or me. After all, with the mold comes charming architecture, etc.

I had a weird experience on the flight home. I took 4 flights in all, two going and two coming home, and was perfectly fine on the first 3. But the last flight was different at the end. About ten minutes before landing, I suddenly began to feel very weird...I felt nauseated and so lightheaded that I started to pass out. My eyesight became dim and red, and my hearing reduced greatly. My heartbeat felt shallow and fluttery. I had a huge hot flash and broke into a drenching sweat. I almost rang for the flight attendant as I was kind of worried I was having a heart attack or something, but I wasn't sure what she would be able to do for me, so I rode it out. By the time we were landed and everyone else was collecting their things and getting ready to exit, I was recovered enough to do the same. But afterwards I went and sat down for a long time, very shaky. I almost missed picking up my bag at the baggage claim!

Now, this is the second time this has happened to me in the past month or so. Both times I have felt like I was dying or having a heart attack. It's not precipitated by any feeling of panic or anxiety. The last time I had my blood pressure checked at the doctor's, it was REALLY low for me. Like 90/60, if I remember correctly. I think something I'm taking for the ETD is causing my blood pressure to plummet or be unstable. So I have decided to scale back on all the supplements I've added over time, and just stick with the two prescription nasal sprays and klonapin as needed when my tinnitus spikes and I can't stand it. I am not going to take sudafed any longer, as I read it can interfere with blood pressure. Actually, I read that it can increase blood pressure, but in my case, my blood pressure has become uncharacteristically low.

I'm on day two of no sudafed...I've been taking it every day for about the past 10 months in a vain attempt to keep my ears from blocking/clogging. So far, so good...I don't feel much different from before, ETD-wise. My ears haven't blocked or clogged. I'm avoiding mold/musty situations...now have two HEPA filters running in the house, and another industrial-sized one on order for my studio, since it gets very musty. When I have to be in my studio, I wear a respirator mask. Seriously, I feel like a freak...good thing I work in these situations alone.

I'm still struggling with OCD-like needs to secretly click my eustachian tubes. I don't think I'm doing myself any good with this nasty and insidious habit of mine. Before ETD, I don't think I even really knew where eustachian tubes were located, much less how to move muscles in my palate to open them on command. *sigh*

The one other thing that flared on my trip was my middle ear myoclonus, which is a twitch-like muscle spasm that makes a thumping sound against the eardrum. Mine is mainly in my right ear and has been mostly dormant lately. It is, for me, noise-activated. For whatever reason, the myoclonus in my right ear had several flare-ups on the trip. The sound of someone's voice, or once, a tour guide's voice over a loudspeaker, caused it to thump away madly. I guess the only true "cure" for this part of my problem is to have the muscles inside the middle ear severed. I'm hoping to avoid that drastic solution. I'm telling it to calm down, hoping it will go dormant again.

I have a follow-up appointment with my ent-allergist on the 2nd, so I am going to ask that we go ahead with allergy testing. I'd like to do the shots and see if I can't kick this thing in the butt. I think I'm getting more allergic-reactive with time...sneezing fits have become a new thing, for me. It's either get it kicked, or move away, and I keep threatening to move to Baja Mexico if I have to! I know a lot of people locally who have lived here about as long as me, and we all seem to be developing awful sinus and allergy problems...I'm the only one who has it in her ears, but everyone else is having head pressure so intense they feel like they will explode.

 
Old 10-26-2011, 05:33 PM   #86
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Re: My Story of Eustachian Tube Dysfunction

dlt48 , good to hear your iprovement.It gives me hope.

Anne Marie, thanks for your input. I am still trying to figure out what is now driving the ETD & I guess it is the sinusitis.....it is all a viscious cycle.

Miracle of miracles i have an ENT appointment the 31st....I am afraid of being told nothingcan be done, & just live with it.

I am trying to think of the right questions to ask !

I am so grateful for all the sharing. My ears are bad these days, ringing all the time, feeling so full, & when the pressure changes, it makes me feel light-headed & all I want to do is hide away.

Best wishes to all.

Mia

 
Old 10-26-2011, 05:37 PM   #87
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Re: My Story of Eustachian Tube Dysfunction

Jenni,

Thanks for the up-date....wow, you did really well to keep calm on the plane !

Do you think your blood sugar might have been very low ? Just a thought.

M

 
Old 10-26-2011, 07:21 PM   #88
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Re: My Story of Eustachian Tube Dysfunction

Hi Mia,

It could have been a weird blood sugar thing. I ate "Chinese" food at the airport between flights, so it wasn't on an empty stomach, but I'm pretty sure that doesn't count for a healthy meal. I was thinking blood pressure because it reminded me of when I was giving a med once during labor with my second son. I was told it would lower my bp for a few moments, and the experience did feel very similar to these two recent episodes.

The body is a weird and mysterious and interconnected thing sometimes, isn't it?

 
Old 10-26-2011, 07:47 PM   #89
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Re: My Story of Eustachian Tube Dysfunction

Sundance, did your allergist do scratch testing or intradermal? Reason I ask is that often eat allergies are missed when allergist relies on less sensitive scratch test. Blood test might pick up a little more info, but the more expensive, labor-intensive intradermal testing is going to pick up what the others may miss. That's why I changed to an ent-allergist -- their protocol is intradermal testing for allergy, and they have a better grounding in how the ear can be a target site for allergy and allergic inflammation. Inflammation = eustachian tube swelling closed = a setup that is a perfect breeding ground for recurrent middle ear infection. I have had 3-4 since moving to this region of the country, the last leaving me with this chronic state of ETD. I am at 10 1/2 months but am slowly seeing an overall reduction in symptoms. However, I do have pe tubes in both ears now, so who knows how much is healing and how much is tubes masking the problem. Hate to sound pessimistic. It has just been the longest, most baffling health problem for me yet.

Last edited by jenni9033; 10-26-2011 at 07:49 PM.

 
Old 10-26-2011, 08:50 PM   #90
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Re: My Eustachian Tube Dysfunction

Hi Jenn,

I started out with a double ear infection before & after the eardrum w/impacted wax. I tried to get the was out myself w/a home kit hydrogen peroxide wax remover, and thought that I might have hurt the cilia or skin inside my ear. I lived by a woods and had the flu and the strep and mersa bugs were in my family from my college aged kids. The first ENT I went to did hearing tests first. I tried soooo hard to pass with flying colors I thought I was going to blow my head open listening for the very high frequency sounds. The Doctor who administered the test was kind of rude. He knew how sick I was and went at a very fast pace with the tests, which really stressed me.

The ENT saw me next, I had to ask him to remove the wax or he wouldn't have done it. They itched something awful inside. I thought the skin PH was damaged from the H. Peroxide kit, which you can do. The ear canal before the ear drum burned, like someone stuck a drill bit in my ear and turned it on. Then the itching got worse. Now it is numb and burning, with stabs of pain. The post nasal drip-which I didn't know that's what it is, I had gone to several doctors and no one defined anything to me in medical terms you know what they call a diagnosis !?

I had to go to the library and online (which they hate) to figure all of this out. I had no insurance and I got $4,000.00 worth of nothing with 15 doctors, 2 ct scans, pulmonology tests and hearing tests and allergy tests. No one ever told me in this country it is very possible for you to fall between the cracks between income, debt, housing, and being jobless. You could actually die. The eustachian tube dysfunction is not really a diagnosis, it is a symptom turned into a diagnosis for their benefit because on starts the flonase or any number of one of the other 8 nasal costeroids. I saw one person on this site say they were prescribed prednisone, which I was told by another ENT isn't given for ETD. It can cause muscle weakness to the point your limb goes out on you. It can also cause your body to stop naturally producing steroids which is bad, you will be on meds the rest of your life because this is your adrenal system! (Get acidity tape everyone and find out your acid/alkaline balance.

GET BLOOD TESTS to determine deficiencies before you start with supplements you are unfamiliar with or invest in a holistic osteo or naturopathic appointment just to see what they say. If they are pushy leave until you are ready.) This happened to me on Fluticasone which is the generic Flonase or vice-versa. I think I have a candida overgrowth because eating icecream, chocolate, and candy makes my symptoms worse. My nose burns inside like it does when you swim alot upside-down in chlorine water and I have a filter on my shower which really helps. I was told we were going to start with fluticasone because ear tubes take 4 hours to put in and I am on BadgerCare, nice, huh?

I then got my second episode of Vertigo. This occurs because of the labrynthitis or imbalance in my inner ears. I have heard none of this from any doc- they all just give me this blank look as soon as they see that I have been to 15 doctors. There were MAYBE 2-3 I heard something useful from, but not much. I have been going through this including in the beginning hearing my own heartbeat, breathing, echoing of my own voice, etc since 2007! I got fevers because the ear infection was not totally gone, although my ear was said to look healthy with a pearlie-white ear drum. My 4rth antibiotic the fevers left. I was right, it wasn't menopause! But I kept up with more antibiotics to get rid of the inflammation. One doctor said I could kill myself with them but didn't say how. Not one doctor told me about the use of Probiotics for the good bacteria maintenance.

I started getting serious body aches and thought I had rhuematoid arthritis or another immune disease. I sat at my computer for hours and hours. That too will make you sick, but I had no choice. We have more than enough doctors around here but I feel that they are all robotized for the HMO's with a prescription only mentality. Every once in awhile someone will say what they know about vitamins and supplements and such, but it is not often. Through all of this I was trying to find a job, moved 2 times, and had family telling me, You don't LOOK sick. Nice. It can be debilitating. The post nasl drip went into my lungs somehow and I got something called Tietses syndrom which is inflammation of the breast bone. I am also at risk for inflammatory breast cancer. The T. syndrom is irritating and hurts. The facial pain and aches by my sinuses started next.

This has pretty much been 4 years of hell and I am fatigued easily. I had my allergy tests from an allergist because the ENT did not test for food allergies and the allergist does. I am slightly allergic to dogs, very mildly. I do not own a dog. Now I hear there are ear allergies? Again, no one has said anything about this. Allergist thought I should try prevacid for Acid reflux although I was never told I have that either. Vitamins dry the sinuses, so I take a double dose of that. I heard that even besides the differences in vitamin manufacturing if you are deficient you might require more vitamins to corrrect the deficiencies. I was told to double the probiotic serving and that helped.

I am trying 5 HTP as some other people on this site say is good for tension relief that allows the ear tubes to relax. I guess stress plays a part in this. Colloidal silver does help, but did not help inside my ears, although I've been told to drink 1 Tsp Bragg apple vinegar in 8 oz of water and use Oreganol ear drops as oreganol is an anti-fungal. My symptoms are slightly different than everyone else on here so I'm not sure if I had patulous Inflammation in the beginning and now it has evolved to something else or what. It is bad though, and my hearing has been affected, hopefully not permanent. The Vertigo is, I have had two severe episodes and mild vertigo constantly. Neil Saline kit helps. Getting enough sleep helps. Drink lots of spring water and stay away from mushrooms (fungus) caffine, sugar, and white bread, I eat SPELT grains instead.

Sorry so long; this disease is the pitts!!! Good Luck and lets see what happens with the surgery dlt48!

Last edited by moderator2; 10-27-2011 at 05:12 AM. Reason: please do not post a commercial website, for any reason.

 
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