Please help me.

Hi there, first of all I'm so sorry you are going through this. My heart goes out to you. I don't think people realize how bad sinus infections can be and hope much it can affect  your body. I had chronic sinusitis for years, had surgery in 2012 to my maxmillary sinuses. I did better but then last year I got really  sick in the summer and I was pretty much  bedridden too. I was in serious pain in my face, no energy, sick to my stomach. I was on I think 4 antibiotics until finally Avelox worked. But it only worked for  awhile and the infection kept coming back. I had a CT scan and it showed "mild" sinus thickening in the ethmoid and sphenoid sinuses. I felt like I had to really push for surgery. It was as though the doctors didn't believe me that it could make me so sick. Only cause it showed "mild" thickening rather than something major. It was so frustrating and being so ill it was hard to advocate for myself. I honestly felt like a zombie and was thinking about suicide. The doctors thought I was getting migraines but I didn't think so because antibiotics took the pain away abett temporarily.

Finally had sinus surgery to clean out ethmoid and sphenoid sinuses in Dec and have been so much better since. I do have to take pulmicort as a nasal rinse once a day to keep inflammation down as I have a lot of allergies. So that's something you may want to consider. are you taking any medications right now like Nasonext or Flonase? Pulmicort is about a thousand more times affective but some doctors don't know about it yet, as it is an off label use. Usually pulmicort ampoules are put into a nebulizer and asthmatics breathe it in. Instead of doing  that you empty the ampoule into saline and use a neti pot or squeese bottle to rinse your sinuses. I actually just use a tablespoon of saline and one ampoule and hang my head off the bed and syringe it up.

So I guess I wrote this to let you know that even mild sinusitis can cause big problems. Oh and it wasn't until my surgery and they were able to go in and look at the sphenoids were they able to say yes this was where the problem was. Because even CT scans  can't always show everything. 

I wish  you all the best and I hope this helps in some way. 

If you have chronic sinusitis you might get some help from my recent post Chronic Sinusitis - An Efective Treatment. I cured my long term sinusitis with Evening Primrose. Regards Ray

Agreeing with carissa55. I have stopped responding to antibiotics, and even became allergic to the ones that did help...fluorquinolones (Avelox, Levaquin, Cipro). I'm also using Pulmicort by adding it to my saline nasal rinse. It does help, but I can't use it past 5:00 pm, or it will keep me awake. I share all of your symptoms, except for POTS, the discharge, fevers and gastritis. I have pain behind my eyes every day of my life, and my vision is blurry. The ear, nose and throat doctors say that I shouldn't have such symptoms, and blame it all on migraines. The neurologist said that it sinus related. This has been going on for 20 years, so I've just learned to work and live with it. Fun!!

I know it is a frustrating road, I just got to the 'clearing' of a very similar round of infections, and the end result was sinus surgery- three different procedures to ' open the doors in the hallways of my sinuses' as my ENT discribed the procedure to me. Obviously we know that he is just opening things up, but it is what lead up to this which is why I decided to respond. I first was diagnosed with MRSA after a sore on my nose developed, my ENT made it seem like no big deal, gave me the ' everyone has mrsa' speech. But my case got worse. I needed to get to the infectious disease center because the oral antibiotics were not doing it, so they put me on IV and for seven weeks each day I was in treatment. The infection was slow to clear and I was told that they don't usually keep some one on IV antibiotics that long, but even after the Mrsa left, I still had the symptoms you experience- so back to the ENT Dr and after the CT showing both sides were still full of fluid and inflammation, I went ahead and got the three different endoscopic procedures, opening of the ethmoids, frontal and maxilarys bilateral. Because I was still so sick, the malaise, exhaustion, nausea, swelling, I was told that they cultured the 'back of my nose' and there was pseudomonas with the Mrsa. Another round of IV antibiotics and finally I started to feel relief. I recovered well from the surgery, and was able to breathe immediately realizing that it had been such a long time, my nightly migraines had gone, it was a great relief. The only bad part was that i did not recover my sense of taste or smell. I was told this was a risk and because of the amount of tissue that had to be removed, I made that choice deciding that the relief of being able to breathe and have a more functional quality of life was important. It's been two months and still no taste or smell, and the weakness takes time- I still am incredibly tired even after sleeping up to 13 hours, and am getting more tests and a sleep study. I would say to discuss your options with your ENT. I was reluctant to having the procedure- only because I have also had double ostomies reconstructive jaw surgery ( the casing for the sinuses!) and the implants and screws after ten years have been perhaps the culprit of the infections. Still no clear answer on that, but I can tell you the horrid scent and taste experiences I had prior to the sinus surgery- and I was treated for thrush and it turns out that was hardly the issue. The relief from the sick feeling is always on my mind when I get down about not being able to smell or taste. And it could still come back, they say.

It's hard to get answers when you get so weak and tired and realize it's up to you to get to those appointments even though laying there and resting feels like the best thing to do. I had to really force myself in the end to even get to Drs, just the fatigue of knowing I could get there and still be told that I need to 'wait and give it time' or it could be this or that and follow up next week when describing symptoms. I tried just going to specialists for each symptom too, and that helps- I have the same gastro issues, neurogenic bladder, chronic pain in my TMJ joints from relapse, and have been told it could be auto immune.. Etc. I know many people get relief from sinus surgery, and I certainly did. It was uncomfortable, no doubt- but hardly to me what recovering from double jaw reconstruction.

it's terrible how you can feel so lost an crazy the way Drs will write you off, say it's in your head ( which no pun intended could be, literally) but they will find ways to generalize, categorize- it's important that you save enough fight in you to get to the appointments, and that may be the biggest challenge of your day- just push through it, there is hope and help out there. And trust me, when I was recovering from the sinus surgery and was experiencing terrible jaw joint pain, and told my ENT- his response 'well we didn't do anything to your jaw so it couldn't hurt...' And realized he was telling me what I was feeling? Because he's so used to people probably complaining and being hypochondriacs... And I'm being discounted and generalized? So I asked him if he had surgery on his sinuses, the 'casing' if you will being the jaw- is it not possible that the two could in fact be connected and related EVEN though he did not do surgery in the jaw? That possibly one could effect the other? ( I was pretty frustrated and seeing stars from pain) but everyone is different and it's not fair for Drs to swipe through their patients like groceries at a check out line. I just hope you can find your relief and know you are not alone!

Hi there, i'm sorry to hear how you, and many others on this thread are suffering.  DD mentions oral antibiotics while others have been on IV ABs.  Joolee mentioned the (fluoro)quinolones (Ciprofloxacin, Levofloxacin and Moxifloxacin), and Carissa said Avelox (Moxifloxacin) helped her. Avelox is a quinolone often recommended for sinus problems when other ABs don't work.  The problem with all the Quinolones is that they build up to toxic levels in your body and then, instead of just killing the bugs, they start to work on destroying your cells.  Apart from the salty drip and nasty discharge the symptoms of this toxicity are much as you describe, DD, with the addition of joint, muscle and tendon pain - or simply all-over pain.  They can interfere with QT intervals in the heartbeat, so could possibly produce the POTS symptoms.

To all of you on this thread I strongly suggest you don't accept any more prescriptions for Avelox or any of the other Quinolones (and beware of them in an IV drip.  Tell the medics you are allergic to Quins (this is probably sort of true), as one more tablet could easily send you into full 'floxing'.  Take a look at the thread on this site started by the emis Moderator called fluoroquinolone toxicty syndrome.  There are links to other threads and sites that will tell you more about it, including a FB group started by me to help sufferers.

Fatigue, migraine, gastric problems, depression and panic attacks (suicidal thoughts even), zombie-feelings, visual disturbances - the list of symptoms is very long.  Oh, and most doctors won't believe you if you have been floxed.  Welcome to the world of 21st century medicine!

Hi DDR4321,

I'm so sorry to hear about your problem. I have had a similar experience to yours - I'm not a doctor - but maybe I can share something that would help you - worth a try right? : )

In my case - my chronic sinus problems - don't seem to be directly caused by any kind of infection. For me I believe all of the stress, anger, fear, ect. in my life caused inflamation in my sinuses - which became chronic overtime and got worse and worse... Basically, when emotions get too big to feel we start to hold them as tension in our body. Ever get tight/tense shoulders? Its the same deal but in your sinuses.

Before you got sick - did anything particularily troubling happen in your life? I had a really horrible unbearable couple of years which is what I believe triggered my illness. Are you angry about something? Fearful? Resentful?

Then to get rid of it I guess you do the work and work through all of the painful memories and emotions. I'm still working on that part myself! The first part was figuring out / admitting how terrible and serious things were in my life. Once I got that part it was like the floodgates burst open and I started to get better.

I was basically on "bed rest" for 6+ months. Something that I really think you should do is some light excercises to keep yourself in decent shape. Things like sitting upright in a chair for 10 minutes. Take a walk as much as you can. At my worst I could only walk a litte ways down my street and back. Squat and then stand back up. What I didn't realize is tha bed rest makes your muscles decrease - so it is very important that you do little things to maintain the strength that you do have.

And I don't think it sounds crazy at all. Sinuses can make you feel MISERABLE! And nobody believes you because they haven't experienced it and there aren't really any visable symptoms.

Please do not give up hope. So many times I gave up hope and wished I wasn't here anymore. But I am improving day by day and I know that you will too. I look back on my darkest days and I can't believe how strong I was to survive that. I look forward to the goals I want to reach now and I can't believe how difficult this "nose" stuff is/was. Nobody "gets it" unless they're had it! I know that someday you will look back on your hardest days and feel pride that you overcame something so terrible. 

Hi DDR4321,

please, could I ask you a few questions about your condition and how it turned out in private messaging? (it is probably disabled in your account settings, I cannot write you a message)

I would be very, very grateful.

Thank you very much!