To all PET sufferers,
This is my first post on here but I have viewed the site frequently for the past two years. I've had PET since the summer of 1995. Premarin nasal spray is the first thing I have tried that worked. Premarin is, of course, estrogen, and is prescribed for PET sufferers to artificially lubricate the E-tube and seal it. I took two snorts per nostril and tilted my right side (bad PET ear) over the side of the bed for 15 minutes and it sealed me up real well. I got that relief that you PET sufferers know you only get when you have a cold. Each dose usually lasted me about two hours, and I was very pleased with it. UNFORTUNATELY, the company that makes this special form of premarin is no longer doing it, as of a few months ago. I don't know what the status of it is for those of you in the UK or elsewhere. I live in Wichita, KS. My doctor found me a substitute-namely Estradiol-which is also estrogen. It seems to initially burn my nostrils as I snort it, but it provides comparable relief. Premarin was slightly better. But I am satisfied with Estradiol for now until a better option comes along. Those of you with PET, ask about it-and make sure you tilt your head towards the appropriate ear when you administer the medicine. JEREMY R.
The Following User Says Thank You to JeremyR For This Useful Post: coveredwagon (03-16-2012)
Jeremy again. I haven't looked into the teflon option, I am a little more on the conservative side since I only have one PET ear that bothers me. I also don't have any of the other distressing side effects that others report. Nathan seemed to have many problems. As for side effects on premarin/estrogen-I was told that there are none that we know of. But I was somewhat skeptical of snorting female hormones. I'm a 25 year old male and am obviously not having menopause(sp?) problems! The pharmacists look at me funny when they see that I get estrogen. I have noticed no side effects. Also, I was was permitted 4 dosages a day so that's roughly eight hours of relief. The people in Santa Barbara, CA. sent me a nice information packet and I was prepared to become one of their experiments until my doctor suggested I first try his estrogen method. Hopefully that medicine in Santa Barbara will get approved so that we have one more option. Peace. Jeremy
I only have PET in one ear too..my left, and I'm also in two minds as to whether or not I need to go to such extremes. I'm going to ask my specialist when I next see him about this stuff you mentioned but he'll probably look at me blankly.
I hope this stuff in S Barber becomes available on prescription soon..it sounds quite promising. But then so did those Chinese herbs and they were a waste of time (did you try them?)
I have looked into the chinese herb option, but it was not realistically one of my choices. I was looking mainly at artificial lubricants of the E-tube, and I'm not sure how the herb would do this unless it increases mucus production. Also, I didn't want to try too many things at once because then I couldn't be certain which treatments were working and which were not. But I probably would have eventually given it a shot if nothing else worked. But from your post, it seems that the herb didn't work anyway. I noticed from one of your posts that you tried seeing a chiropractor about PET. I met a chirporactor who was able to reverse severe childhood ear infections, and keep ears open through chiropractic methods, but he had never tried to keep E-tubes closed before. Nevertheless, I think that chiropractic adjustments could be beneficial for the simple reason that all our organs and nerves are intricately connected and if something is messed up at one end of the body, it could have dramatic effects of something that is seemingly unrelated. If nothing else, the chiropractic adjustments could relieve stress, and I have noticed less PET problems when stress is low. Do not be discouraged if your doctor has not heard of the medications I mentioned on the other post. As we know, many people have been to a dozen or more ear specialists who have no solutions for PET. I think I was just lucky. But if your doctor is serious about helping you, it shouldn't be difficult for him/her to find out SOMETHING about premarin or estradiol for PET treatment. Their main use IS NOT for PET, so this is why many doctors are unaware. I don't even think that they are ordinarily in the liquid form. My doctor was so impressed with my research that he actually told me to contact him when I find out about new treatment options. If it helps, my doctor is Thomas Kryzer and his contact information can be found at www.wichitaearclinic.com. Maybe he can relay some information to your doctor. E-mail crosses oceans fairly quickly! Also, I hear Dr. Dennis Poe in Boston is really good and I hope your info from him is helpful. Oskar Kujawski in Switzerland is also supposed to have some innovative treatments for e-tube problems as well. Sorry about the long post, but I hope it helps. Let me know how things go. Jeremy
Thank you Jeremy, your help is much appreciated. I feel like I'm getting closer to having some control over things. I'll email your doctor now. I haven't heard anything back from Dr Dennis Poe yet, which is highly frustrating. I wish I could find out what that stuff he used for Nathan was before I see my specialist in two weeks. You're lucky that you live in the states you know because I think you get better treatment. I too have become quite the researcher, I've had to do everything for myself, I even had to diagnose myself because the doctors I'd seen either didn't have a clue, or told me I had a blocked tube (a common mis-diagnosis), and then I had to tell them what tests to do to make sure it was PET! (I'm in the wrong job). If I just had some spray or something that could give me some control over it I would be happy with that, I'm not sure I want stuff injected into my ET..I'm scared to be honest. I'm also 24 and I've missed out a bit on a social life over the past few years..I'm not bitter, PET has made me stonger person but it would be nice to have a propper breather from it. You don't have a contact for this bloke in Switzerland do you?