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Medical Forum / Diseases and Disorders / Sinusitis / November 2005Sinusitis and sleep
I have been labeled as having chronic sinusitis. cat scans show "diseased" and "unhealthy" sinuses cloudy with "tissue" and/or "mucous" some of my sinuses are wider than others but even where wide they look murky or cloudy so a recent ENT didnt think it would necesarrily help to widen my forehead sinuses, even though the opening was narrow. Fine with me, i have had 2 surgeries and if anything, seem to be in worse shape afterwards. my biggest complaint is of persistent, relentless thick PND or feeling that i always have some mucous at the back of the roof of my mouth that i just cant clear. I irrigate regularly but it seems like my body never stops with its mass production of this stuff. i am probably going to go once again for allergy testing and am currently being treated with an anti-fungal nasal spray. When my PND is at its worse i cannot sleep. i chew gum and if i am lucky enough to fall asleep, usually wake up after 1 and one-half hours needing to snort, spit and/or swallow. when my PND is at its least bothersome I can sleep but will wakeup with "sinus?" pain at the bridge of my nose and a light-headed dizziness. but still, to be able to sleep is such a much needed thing, often, as i can go 5-8 days straight with just 2 hrs here and there. does anyone else suffer from the inability to sleep? i used to (6-7 years ago) be able to hit the pillow and i would be out in minutes. has anyone ever taken any sleep aids? my doctor had mentioned this but i am reluctant because i dont know if i will just be a zombie, still unable to sleep or if my body is making me wake up on purpose--might i drown in my mucous? thanks > my biggest complaint is of persistent, relentless thick PND or feeling > that i always have some mucous at the back of the roof of my mouth that i [quoted text clipped - 4 lines] > > does anyone else suffer from the inability to sleep? Yep, that's how I used to be all the time before I had surgery. I was in worse shape than you in that regard: I would wake up in the middle of the night with a flood of mucus pouring down the back of my throat, causing me to gag and choke. Even now I sometimes wake up coughing from stuff going down the back of my throat. What helped me is to sleep in a more elevated position. I have a (non-rocking) recliner in my living room. And when things get bad, I will sleep on my recliner rather than sleep in my bed. The upholstery is leather so I get less dust mites too.  SignatureSteven D. Litvintchouk Email: sdlitvin@earthlinkNOSPAM.net Remove the NOSPAM before replying to me. thanks, you sound as if you benefitted from surgery. i dont seem to have. the first was an old school type that has been criticized by subsequent surgeons as being too aggressive--a hole was put in my septum and an entire turbinate was cut out. the second surgery widened my sinus openings.\ what type of surgery did you have? thanks > thanks, > [quoted text clipped - 6 lines] > > what type of surgery did you have? First surgery: septoplasty, bilateral antrostomy, double ethmoidectomy Second surgery: another ethmoidectomy, further widening of sinus openings from the first surgery SignatureSteven D. Litvintchouk Email: sdlitvin@earthlinkNOSPAM.net Remove the NOSPAM before replying to me. Loxaluck - sorry you are having such a rough time. I've seen your other posts. Trust me it will get better! When I was at my worst, I also had trouble sleeping and benefited from taking a sleeping pill. I took trazodone 50mg for sleep (an off label usage of this drug is for sleep). It was fairly easy to get off once I didn't need it any more. You have to be careful as some of the sleeping pills are quite difficult to get off of and people can become hooked. I had a relative that took Ativan (generic name: Lorazepam) which was incorrectly prescribed for her for sleep. It is actually an anti-anxiety drug not really a good sleeping pill. This was a terribly addicting drug so I would try to avoid this one. My doctor said that sometimes when people are having a tough time of it medically they give them low doses of anti-depressants such as Paxil, Zoloft etc. These can help with sleep also. I think taking the trazodone helped me as you really need sleep to recover. One thing I also did was go out and buy a very comfortable reclining chair. Some nights I slept in this chair and this helped me when I was at my worst. I got a leather one so the dust mites weren't a problem. Have you tried a food elimination diet? Foods such as milk, cheese, etc. can cause a lot of post nasal drip in some people. Other common culprits are wheat. You could try giving up these foods for a month and see if does any thing. See Dr Weil's web site for info on food allergies. That is good that you will be tested for environmental allergens. Once you know what/if you are allergic you can hopefully avoid it. Thanks, i did eliminate wheat (and gluten) from my diet as well as dairy for a while with no real difference. i eliminated most everything except sugar and caffiene, for a period of time. i also did get allergy tested twice before, the first time by the same guy who had done my first sinus surgery and after a year of allergy shots, i stopped. the 2nd time i tested, the test said that it wasnt as bad as the first claimed so i started to question the whole thing. i didnt notice a difference even by the time i had reached my maintenance on the allergy shots but i am beginning to question if i gave it enough of a chance and maybe i needed to take it in connection with something else. Hello, I do not think there is one or two answers. Each person is different enough to require personal treatment. In my case, (inflamed sinus and nasal passages and constant continuous drainage), the following works. Sleep in a semi-reclining position (a board can be designed to fit under the mattress), use plastic covers for pillows and mattress cover with cloth covers that are changed daily. The one drug that works for me is Prednisone 10mg in the am \ 10mg in the pm. Because of the side effects of Prenisone I use several more drugs to counter some of the side effects. I have 4 doctors,(3 specialist and 1 GP), and every type of treatment has been tried over the past 10 years. You may have allergies, out of wack immune system and/or some combination of problems. There maybe no permanent answer just a regimen that allows you to live close to a normal life. Wish you well. Take Care. beamish. >I have been labeled as having chronic sinusitis. cat scans show "diseased" > and "unhealthy" sinuses cloudy with "tissue" and/or "mucous" some of my [quoted text clipped - 29 lines] > > thanks I really feel that one day i will find the answer and if it is the inclusion of certain things (or exclusion) which will help me to live a close to normal life, than that will be the answer. my condition did not start until late in life. i am 45 yrs old and only began suffering from these symtoms 6-8 yrs ago. however, before then I may have still had related problems, i was often stuffed - but this was never a real complaint. and i have had 5 grand mal siezures which i think might be related, the first at age 27, i have been siezure free (400 mg dilantin) for over 10 years. i have been to numerous ENTs, i have had blood work done so i guess they would have seen any immune system problems but then again im not altogether sure what it is that they are looking for. i am reading these emails and submitting my questions to help build a list of questions and suggestions. i am right now being treated with an antifungal - itraconazole nasal spray but m not noticing any change but I will continue to take for the prescribed time. Am i going to the wrong type of doctors? why would you need to be seeing 3 different specialists? there is the ENT (otalara---?), maybe an allergist, what other type might i seek out? >I really feel that one day i will find the answer and if it is the >inclusion of certain things (or exclusion) which will help me to live a [quoted text clipped - 18 lines] >3 different specialists? there is the ENT (otalara---?), maybe an >allergist, what other type might i seek out? Mainly a good internist if you do not already have one. This is the best type of primary doctor to have for an adult (rather than a Family Practioner). This might or might not be considered a specialist. Have you tried Have you tried taking a long walk before bed? I am sure that the response of a lot of people would be "I do not have time for that?", If that is your reply, then probably your life is just too hectic and the stress is preventing sleep. I have tried exercise and it does give me some relief, in that it seems to thin out the mucous enough for me to clear it out--as does irrigating or a hot shower. but the relief is very short-lived and shortly after i again have difficulty sleeping because of the thick, relentelss stuff that i am calling PND. > I have tried exercise and it does give me some relief, in that it seems to > thin out the mucous enough for me to clear it out--as does irrigating or a > hot shower. but the relief is very short-lived and shortly after i again > have difficulty sleeping because of the thick, relentelss stuff that i am > calling PND. What color is this PND? SignatureSteven D. Litvintchouk Email: sdlitvin@earthlinkNOSPAM.net Remove the NOSPAM before replying to me. varies. it can be clear, or milk-white. it is frequently yellowish or green or even brown. i have stopped getting anti-biotics everytime i see color. in a morning when i have been able to sleep it will usually be at its darkest. i am not sure if this is the PND or if the PND is clear while the other stuff that i am bringing up by snorting is something else other than PND. > varies. it can be clear, or milk-white. it is frequently yellowish or > green or even brown. Well, that could be a continuing low-level infection. > i am not sure if this is the PND or if the PND is clear while the other > stuff that i am bringing up by snorting is something else other than PND. When you irrigate, what is the color of the stuff that comes out? BTW, I should have remembered there is another safe, effective way to help get some sleep. It's called: having sex. I'm serious. It's a great way to become sleepy and blissful, better than any meds. SignatureSteven D. Litvintchouk Email: sdlitvin@earthlinkNOSPAM.net Remove the NOSPAM before replying to me. On 11/17/05 7:40 PM, in article 83cff.1956$jI5.340@newsread1.news.pas.earthlink.net, "Steven L." <sdlitvin@earthlinkNOSPAM.net> wrote: > I should have remembered there is another safe, effective way to > help get some sleep. It's called: having sex. I'm serious. It's a > great way to become sleepy and blissful, better than any meds Is this covered by insurance ? only if you stay "in-network". same colors when I irrigate. if i went on anti-biotics everytime there was color in my mucous, I'd never be off them. my bloodwork has come out clean. wouldnt this show an infection? and wouldnt i have a temperature or some other symptoms? Having sex is of course great, but it is tough to feel very sexual with my condition, and i would hazard to say that my wife is not all that enthused as i come out of the bathroom after irrigating, snorting away. also, i have to say that even through my youth, and even after highly physical sessions, i was never really one to feel "spent" after sex. I know that i differ from most people in this (or i think i do based on televised accounts of men blissfully passing into sleep following sex). Rather than rolling over and passing out, i would be more likely to feel awake and head for the refridgerator and television. The minute our heat goes on I am the same way with clear mucus. I am useing warm salt water to gargle, saline rinse for my nasal membranes before going to bed and when I get up in the morning. I have been waking up every couple of hours with the feeling of a full nose, but I gently blow it, there is not much there but it feels better. shirley loxaluck - having sinusitis you have to be such a detective to figure out what is causing the problem. It may not just be one thing. Just to be sure make sure you have considered the following: 1) Home and work environment. Could your heating system making you sick? - do you have forced hot air system? May be there could be mold or dust in the ducts and vents. May be it is too dry for you. Do you use a good humidifier in winter in your bedroom? Could your work environment be making you sick? Many companies have bad ventilation systems or mold problems. Did your problems start after you changed jobs? 2) Mold and Dust Allergies. Are you sensitive to mold or dust mites? May be you have allergy to mold or dust that doesn't show up in the allergy tests. The tests aren't 100% accurate. You can do all the things to reduce your exposure to the dust mites and see if this makes a difference by adding dust covers on mattresses, box springs, pillows, removing clutter from the bedroom, removing rugs from bedroom, washing sheets weekly in hot water or adding dust mite additive to laundry, etc. Also the mold allergy shots are the least effective of the allergy shots according to my allergist. He quoted they are only 70% effective versus the dust and pollen related allergy shots which have a much higher rate of success. For mold make sure you get rid of any sources of mold in your home environment. Clean out mold sources in basement, garage, etc. Mold needs water and organic source such as wood, paper, cloth, to live on. Fix leaks and any water coming in. Make sure the basement is dehumidified and ventilated to reduce mold levels. 3) Side Affects. What prescription/non-prescription drugs are you taking? Look at all the side effects may be something you are taking is contributing to your problems. 4) Diet, Sleep, Supplements and Vitamins. Make sure you eat a healthy diet and take needed vitamins. As you've stated you aren't sleeping well. You need to get sleep to heal your body so you'll have to figure out what to do for this - temporary take sleeping pills, use a recliner, changing bed configuration. Ivker book has vitamin recommendations for sinusitis. 5) Irrigation. You say that you do this which is good. May be the irrigation method you are using isn't working for you? 6) Major Medical Center. Could you need to see another doctor for related problem? Sounds like with your other problems you just mentioned you could benefit. Are you in a part of the country where you can go to a big medical center? May be it is worth traveling out of state to a major medical center for a second opinion. 7) Nasal Steroids. Are you using a nasal steriod? You may need to switch the one you are on. Different ones work for different people. Nasal steriods will reduce the inflammation in your sinuses and are used when patients have allergies or don't have allergies. You have to use every day for sometimes a month before they work for you. You also have to use them correctly. Read the package instructions. Don't aim towards the septum. Also, you may want to use them 30 minutes after you irrigate when your sinuses are cleared out so the medicine can work. If you use them right after irrigating the salt water solution and action of the cilia may wash them out before they have time to work. I am sure other people have ideas for you to try. Have you checked the books recommended in the FAQ? You can get most of the books at your library or most libraries have inter library loan. The Ivker book mentioned in the FAQ has a lot of good things to try. Good luck. These are all the things I considered and did to deal with my sinusitis problems. I would say that my sinus problems are reduced by 95% once I found what worked for me. Thank you so much for the detailed response. i know that the questions asked are primarily rhetorical and not in need of response but i would just like to assure you that i am taking everything seriously. my condition has existed throughout a change in my work environment and my residence. i will ask further questions in a separate posting re the ivker book. postings have a way of drifting off, especially mine becasue i have so many questions. my basic question with this one is: would it be safe for me to take some sleeping pills? i do have difficulty sleeping and i do wake up, like Steven L, needing to clear the mucous out of my throat. my concern is that, with sleeping pills, I might sleep right through my drowning. But then again, like you say, getting adequate sleep is essential for good health... thanks I had quite a bad time of it and had similar problem to you of bad PND, coughing/choking at night, etc. although I did not have it as long as you've had it. The sleeping pill I took Trazodone was a mild one and I took a low dose (I think you can take up to 150mg a night and I only took 50mg). Trazodone obviously isn't as strong as when you go in the hospital and they put you to sleep for surgery and you can't fight it and stay awake if you wanted to. In my case it allowed me to get more sleep and I felt so much better. I was very hesitant to take sleeping pills since I had heard so many horror stories. But I like you was only sleeping 2 hours a night so something had to give. So at the time, I took the sleeping pill and I was also sleeping in my leather recliner many nights. Once I got my sinuses under control I was able to move back to a regular bed then eventually stop taking the sleeping pill. I would discuss the options with your doctor. Since you've had the other seizure problems it may not be good for you. One good thing about Trazodone is it is generic so it is small copay not like the new sleeping pills that may/may not be covered by insurance. You could also try low doses of anti-depressants like Paxil, Zoloft. My doctor gave me this option also. These drugs help with mood and sleep problems. At the point I had all these sinus problems it was very depressing and I considered them as well and would have probably used them if the trazodone hadn't worked. > I had quite a bad time of it and had similar problem to you of bad PND, > coughing/choking at night, etc. although I did not have it as long as [quoted text clipped - 18 lines] > had all these sinus problems it was very depressing and I considered them > as well and would have probably used them if the trazodone hadn't worked. All these psychotherapeutic meds can have a drying effect on the nasopharynx and can thicken secretions. None is recommended for sinusitis sufferers unless absolutely necessary. If you absolutely, positively, must get some sleep, a choice with fewer side effects is Ambien, a pure soporific. But since it can be habit forming, don't take it for longer than a week. Another way to induce sleep safely is sex. SignatureSteven D. Litvintchouk Email: sdlitvin@earthlinkNOSPAM.net Remove the NOSPAM before replying to me. On 11/16/05 8:39 AM, in article e6492899760f604b65c25d21f79ce6cb@localhost.talkaboutsupport.com, "loxaluck" > I have been labeled as having chronic sinusitis. cat scans show "diseased" > and "unhealthy" sinuses cloudy with "tissue" and/or "mucous" some of my [quoted text clipped - 31 lines] > > Thick PND is associated with slow cilia function. Steps to remedy include Pulsatile irrigation Increase fluid intake Increase tea and chicken soup Ask your doctor about adding medicions to the Hydro Pulse Proteolytic enzymes such as Clear.ease - papain and bromelain are useful to break down thick mucus. Hope this helps. This is a rather drastic move on my part and something you should carefully consider before trying. But I've had exactly the same symptoms except sometimes it doesn't drain and then I get tremendous pain. It alternates and both are equallly disabling. I have been diagnosed with osteitis in the ethmoid bones. It has been very difficult to diagnose; doesn't show up as a sinus infection, but there is reactive bone formation on the CT scans. It didn't show up on limitied scans. I had to have a detailed CT scan. I have also had the pain and pressure mainly behind my nose. Surgery is not an option because it is do close to my brain. My new ENT has described it as like having COPD of the sinuses and says the type of drainage I am having is from inflammation. It has been anywhere from dark brown, to clear jelly-like or semiliquid like glue, to creamy whitish. It was greenish to yellow when I was on IV antibitotics, so I am awaiting another culture results to see if I need to go back on them. That may be another option, but finding someone to do that is very difficult. I was placed on relatively high dose prednisone (40 mg. a day for a week), then down to 20 for 2 weeks. I'm now down to 15. It has helped tremendously so far. When I have the pain it is not as severe and the drainage has decreased also. Again, this is a drastic step, but I had no options. I was also waking up in the middle of the night feeling like I was draining in the mucus. I too have been afraid to take sleep medications for fear of drowning in the mucus. Xanax does help somewhat and you can wake up with it if you have to. Needless to say, I'm not getting much sleep with the prednisone, but at least I've been able to function. You might want to find a good ENT, one fairly out of residency, who knows a lot about new theories. This may not be your problem, but it surely sounds too familiar. I wouldn't want to advise you to take this much prednisone if you don't have a definitive diagnosis as there are tremednous side affects with long time use. I hope you find relief soon as I know exactly how you feel. kathyw Enough sleep is a *tremendous* anti-inflammatory agent, and lack of enough sleep a tremendous pro-inflammatory one. And 8 hours is nowhere near enough for me. What I do now is sleep whenever I feel tired, paying no attention to normal daily cycles or couting hours. This has made an enormous difference not only to my sinusitis, but to my overall health as well. My blood pressure is way down to tremendous levels now. Also my stamina is way up. Operating in this mode, I can stay up a whoel day any time needed for meetings etc. without being exhausted. I am beginning to think now that the inflammatory sinusitis that many of us have is actually caused by lack of sleep. If this is the case, watch out as systemic inflammation is going to affect your heart and circulatory system adversely as well. The sinuses may just be "the first to go." I have the luxury of working mostly at home. Every now and then I need to go in to meetings and there is cigarette smoke in that place (even though smoking is banned in most departments). Being there for even 2 hours causes my sinuses to be inflamed for up to days. They will clear finally by running for an hour and getting lots of sleep. It is like an on-off switch. They are either horribly blocked filled with fluid which is draining into my throat, , or quite fine echoing nicely empty. By the way, I know now what post nasal drainage really is. It is one continuous clot of fluid extending down from partly fluid-filled sinuses. As long as your sinuses have fluid levels, you are *not* going to eliminate post nasal drainage. Once you do empty yoru sinuses though, it will clear. Your cough will clear too and your voice improve. I find that I get a tremendous amount of drainage after sleep when my sinuses were irritated. I think that this drainage is good! It is your sinuses recovering! I will guess that you have a dust-free bedroom. If the bedroom is very dusty, my sinuses do not get that drainage during the night,, but rather block up, and I do not get drainage until the morning. Something must be happening during the day to put them back in bad shape again. It could be allergens and irritants or it could be just the stress of living if you have not got enough sleep. > Something must be happening during the day to put them back in bad shape again. > It could be allergens and irritants or it could be just the stress of living if > you have not got enough sleep. I'm beginning to suspect personal computers themselves as a prime suspect. The innards contain all manner of resins and chemicals on the circuit boards and disk drives, which outgas as the machine warms up and the fan runs. The keyboard is extremely difficult to keep clean as dust and pollen falls between the keys into the circuit board underneath. Additionally, those of us who have monitors with our desktops are also subjected to all the dust and pollen and mold spores that the monitor's static electricity collects. If you open up an old computer monitor, you'll find a real chamber of horrors inside from all the gunk that fell thru the vents over the years. And we spend many hours sitting right in front of the computers at a close distance, breathing in whatever is in there. It is already known that repairmen who repair laser printers have a relatively high risk of cancer, probably from continual close exposure to the toner. SignatureSteven D. Litvintchouk Email: sdlitvin@earthlinkNOSPAM.net Remove the NOSPAM before replying to me. > Enough sleep is a *tremendous* anti-inflammatory agent, and lack of enough > sleep a tremendous pro-inflammatory one. This post may have been for the original poster, but I have some comments and questions. I agree, but it is hard to sleep with gunk running down your throat and waking you up feeling like you are going to suffocate. I have to get up and rinse it out, then it's hard to go back to sleep, because it then just stops up again and I get the pressure or pain and then can't sleep. I've been taking a xanax and 1/2 lortab at a time. It doesn't help me get much more sleep, but it kind of puts me out for a while and I think my body rests some. I don't like using these drugs. I don't want to become addictied. I've never had to use anything like this before the last couple of years and I'm 57 years old. > I am beginning to think now that the inflammatory sinusitis that many of us > have is actually caused by lack of sleep. If this is the case, watch out as > systemic inflammation is going to affect your heart and circulatory system > adversely as well. The sinuses may just be "the first to go." You may be right, but I used to get 8-10 hours sleep before this latest nightmare epidsone hit, and it really didn't help. The more I slept the more stopped up I was and the worse I felt. I'm actually feeling better now without that much sleep, although I am getting more since I am tapering down on the prednisone. Maybe it's a false sense of well being from the prednisone and I'm going to completely crash when I go off. I was down to 10 mg. a day now , but the buildup is starting back, so I've gone back up to 15. I don't want to stay on this stuff any longer than I have to. > I have the luxury of working mostly at home. Every now and then I need to go > in to meetings and there is cigarette smoke in that place (even though smoking > is banned in most departments). That is good. I had to quit my job I got so sick 2 years ago so I don't have to worry about that. I keep HEPA filters running in the rooms I'm in most often. > It is like an on-off switch. They are either horribly blocked filled with > fluid which is draining into my throat, , or quite fine echoing nicely empty. Exactly my symptoms, but when it doesn't drain I get the tremdous pressure or pain. Pain hasn't been bad since on prednisone though. Although I only have a few hours at a time that I have neither. > By the way, I know now what post nasal drainage really is. It is one > continuous clot of fluid extending down from partly fluid-filled sinuses. As > long as your sinuses have fluid levels, you are *not* going to eliminate post > nasal drainage. Once you do empty yoru sinuses though, it will clear. Your > cough will clear too and your voice improve. So how are you getting yours to stay clear without steroids or antibiotics? I use saline rinses several times a day, have used gueifenesin, sudafed, and about everything else. Nothing has worked except the prednisone, and it's not doing as well since I went off the 20 mg. a day. > I find that I get a tremendous amount of drainage after sleep when my sinuses > were irritated. I think that this drainage is good! It is your sinuses > recovering! I will guess that you have a dust-free bedroom. I agree. My head clears up when it drains, but the drainage is so much that it goes into my lungs and I get chest tightness and feel like I'm suffocating. I don't know which is worse. > If the bedroom is very dusty, my sinuses do not get that drainage during the > night,, but rather block up, and I do not get drainage until the morning. HEPA air purifiers are helpful for that. > Something must be happening during the day to put them back in bad shape again. > It could be allergens and irritants or it could be just the stress of living if > you have not got enough sleep. Who knows? Kathw > I was down to 10 mg. a day now , but the buildup is starting >back, so I've gone back up to 15. I don't want to stay on this stuff >any longer than I have to. >So how are you getting yours to stay clear without steroids or >antibiotics? For me it just depends on rest and allergen/irritant exposure,a s well as diet I tend to eat too little at times which suppresses metabolism - but of course, most people are on the opposite side of that. > I use saline rinses several times a day, have used >gueifenesin, sudafed, and about everything else. Nothing has worked >except the prednisone, and it's not doing as well since I went off the >20 mg. a day. Yes the prednisone will definitely always work to elimininate the inflammation *while you are on it" The inflammation will come back once you get off (unless you eliminate the cause) So you have to eventually come up with another solution. It just buys time. I remember that my sinuses echoed completely empty and hollowly when I was on prednisone for months after surgery. They are starting to sound like that again sometimes. >I agree. My head clears up when it drains, but the drainage is so much >that it goes into my lungs and I get chest tightness and feel like I'm >suffocating. I see. I am lucky enought not to have that aspect of the problem. Really my sinuses do not ever drain at night like that. Something is different between you and me in that regard. Maybe your spenoid sinus is infected as I think it drains way into the back of the throat. Or maybe your turbinate anatomy is different or they have been reduced too much and are not blocking drainage in the way they should. As to the rest, you do not need it while you one the prednisone. But after you are off it, you may find it makes a difference. Ot maybe not for you. For me, it is all tied in to metabolism, I think, and the daily rise and fall of natural cortisol levels. These vary drastically if one does not get enough sleep..... >I was also waking up in the middle of the night feeling >like I was draining in the mucus. I too have been afraid to take sleep >medications for fear of drowning in the mucus Have you tried a little food and a walk an hour or two before going to sleep? This should go a long way to emptying out the sinuses. Food and cold things like ice water or ice cream seem to make them drain sometimes. also just sipping on a hot cup of coffee. I haven't noticed a lot of difference in walking or exercise, but maybe it's because I've just been too tired to so that much. I did swim some in the summer, but that didn't seem to help a lot either. > This is a rather drastic move on my part and something you should > carefully consider before trying. But I've had exactly the same [quoted text clipped - 12 lines] > another culture results to see if I need to go back on them. That may > be another option, but finding someone to do that is very difficult. My ENT has seen a number of cases of osteomyelitis like this. My symptoms are similar to yours and he has told me I might have it too. But he admitted that there really isn't a good definitive treatment for this condition. If you've reached the stage of IV antibiotics, then you've probably reached the stage of vancomycin. Which IV antibiotic(s) did they try on you? > You might want to find a good ENT, one fairly out of > residency, who knows a lot about new theories. My ENT seems to keep up with all the new theories. But he hasn't heard of a cure for this. I asked him. SignatureSteven D. Litvintchouk Email: sdlitvin@earthlinkNOSPAM.net Remove the NOSPAM before replying to me. Well, I just got a call today from my ENT doctor's office concerning the culture that I had last week. I now have Acinetobacter lwoffi in my sinuses. Another new one, and it is also gram negative and is water loving. It is a never ending saga. I've been boiling my irrigation water for about 3 months. This was before I started on the prednisone. Now I'm afraid that the prednisone will make it worse and I can't just stop it "cold turkey." No pun intented, but I was just going to try to have a nice Thanksgiving and forget about this because I was going back to see the ENT on Monday, and I've been functioning somewhat better. He referred me to an infectious disease doctor 3 weeks ago and they wouldn't see me until I had another culture. Now there seems to be a mixup and the ENT thought the ID doctor referred me to him and they thought that I already had an appointment with the ID, but I don't. So they are supposed to call him tomorrow and canceled the appointment with the ENT because he wants me to see the ID doctor first. Who knows how long I will have to wait and whether they will even see me. ID doctors don't seem to like to work with sinusitis patients and ENTS don't usually prescribe IV antibiotics. I did a search on Acinetobacter lwoffi and it is another one of the opportunitist ones that can normally just colonize and not cause an infection, but it can cause meningitis. Great!! Vancomycin is not an option for this, as it is mainly for gram positive bacteria. Impenem seems to be the only effective drug I've found and it is IV, but makes one more susceptible to the Stenotrophmonas that I had to go on IVs before. It was Timentin. The ENT was going to do a bone scan with radioacitve labeling to look for infection and/or white blood cells in the bone, but the radiologist said there was only a 50% chance of it showing in the ethmoid bones which is where this is. So, I'm hoping he is going to be able to get the ID doctor to see me. They don't have to just because he asks them too. (I've been there before too.) In the meantime, I started putting a few squirts of betadine in the irrigation solution and see how it does. I used it once before with some success. I guess if it's just colonizing, it might help, but if it's in the bone, nothing is going to help except the IV antibotics. Any other suggestions? Kathyw On 11/20/05 8:56 AM, in article FU1gf.1585$rM2.1296@newsread3.news.pas.earthlink.net, "Steven L." <sdlitvin@earthlinkNOSPAM.net> wrote: > My ENT has seen a number of cases of osteomyelitis like this. My > symptoms are similar to yours and he has told me I might have it too. > But he admitted that there really isn't a good definitive treatment for > this condition. At Mass Eye and Ear they use Hyperbaric Oxygen in addition to other therapies. kathy thanks so much for the information. i forwarded this to my dr. and he is getting me scheduled for a CT scan of the sinuses. but is there a special type of scan that i need to have done. you mention that it did not show up on limited scans. how detailed is the detailed scan? does it have a specific name? thanks >kathy > [quoted text clipped - 3 lines] >on limited scans. how detailed is the detailed scan? does it have a >specific name? I think it is a matter of the stepping size. It can be 3 mm. or 1 mm. (fine stepping = detailed scan). Of course, the fine stepping is also three times the radiation..... I had the detailed scan done at National Jewish Medical Center. But they didn't even mention anything about the reactive bone formation and possible osteomyelitis. It did show minimal thickening in both ethomoid sinuses that didn't show up in scans before or after that, except maybe the one I had done when I saw my current ENT. They just told me at NJ to use Flonase. Then when I got the horrible debilitating pain starting last year I sent off for the actual scan and got the full report back with it. I don't know how detailed the last one was with the new ENT, but the report says ostietic bone changes in both ethmoids and mid sinus. That correlates exactly with the symptoms I've had over the years, especially like the pain you describe over the bridge of your nose. So I would suggest you get all of your CT scan reports and actual scans (they can put them on CDs at most places now) and take them to the ENT. I think one has to be aware of the bone changes that can occur to make an accurate diagnosis, if indeed the problem is in the bone, especially when the sinuses themselves appear fine. You said though, that yours showed something, so at least you can get someone to believe you. Most ENTs just looked at my scans and for the fluid levels were not that bad and said I was fine and sent me on my way. So you are going to have to be aggressive, but DON'T make the ENT think that you know more than he/she does. They do not like that. Just pose as possible questions. If you don't get the results you think are appropriate, look for another ENT. I was about to lose hope and was almost suicidal at this point last year. Lots of luck, Kathyw
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