sinusitis?

[rubyroselee]

Hi everyone,

Ever since Labor Day I've been feeling cruddy off and on. Lots of sinus drainage, nausea, headaches, weakness, faint feeling, and blurry vision. CF doc thought it might be blood pressure or sinuses, so he sent me to an ENT. The ENT started me on sinus irritations. Finally this morning after feeling so bad again, I went to the ER hoping for answers. CT of sinuses came back showing sinusitis but CBC was normal. Could my sinuses really be making me feel this bad? I think people are starting to think I'm making up my symptoms, but I've missed some work because of these episodes where I feel so bad. Any thoughts are appreciated!

Thanks

 

[Ratatosk]

DS went to a ENT who was familiar wcf after sinus rinses weren't helping and he was so stuffed up he was snoring, not sleeping well, mouth breathing. Did your ENT run a scope down your nose to see if there was anything? With him the ENT was able to see cobblestoning ? along his septum and inflammation and prescribed a sinus steroid nasal spray. DS also had a sinus CT, which pretty much indicated he had CF sinuses, but no polyps. In his case the nasal spray seemed to help with the inflammation.

 

[njlins]

I can say without question that my lifetime of sinusitis has made me feel terrible. No fevers but I would feel totally crummy and missed lots of school and later work due to the fatigue and head pressure and pain from the sinusitis. The fatigue is unbearable. But usually they did find infections with a scope and culture. At first the doctors did not do cultures but this really saved me as they could tell what infection I had and trest it correctly due to the sensitivities and cultures that were done. Hang in there! Hope you all get better.

 

[ladybird]

Make sure you are using pharmaceutical grade sodium and baking soda e.g. Neilmed. Also try doing the irrigations twice a day and add a few drops of therapeutic grade. e.g. Young Life eucalpytus and peppermint oil. You also may need surgery to clear out mucus plugs and enlarge sinus openings. I had surgery a year ago and now just do a rinse twice a week with eucalyptus, but plan to add peppermint (on order from YL.)

 

[rubyroselee]

Thanks guys. I can't believe how tired I am and how crappy I feel. This is kicking my butt worse than my lungs ever have (which I guess is a good thing). I put in a call to my ENT after leaving the ER today and he should give me a call tomorrow. I'm hoping he at least puts me on an antibiotic to treat pseudo. I think I just need to be persistent with the ENT. It's nice to know that I'm not the only one!

 

[jamest]

My life changed after getting my sinuses drilled out and doing saline rinses on my now-wide-open sinuses. Prior I was having constant recurring fever, low energy level, perpetually on prednisone, etc. I never had any sinus pain, but a CT scan showed my entire head was packed full of aspergillus, so additional openings were drilled into my maxillary sinuses so stuff could drain out.

Even after the surgery, regular neti pot washes weren't enough, it was when I switched to a waterpik with a hose attachment thing that my health took a 180. So yeah, your sinuses could absolutely be to blame for feeling lousy.

 

[cam]

Yea I agree sinuses can cause alot of trouble I had many surgeries on them I hope I dont have to get another for a long time the surgery sucks for few days after really sucks but I feel really good after I get healed up I had a polyop behind my eye so big it was cracking my bone behind my eye and doctor didnt know til did ct scan I was losing sight and all kinds of stuff so just stay up on sinuses they can go crazyhope u get better and stay healthy

 

[rubyroselee]

Thanks for the responses. I've been feeling good since I last posted. But that tends to be the pattern - a couple good days and then a bad one. I'm hoping once winter hits in the Midwest here, I will start to feel better. Glad these symptoms aren't just in my head (well, they are, but you know what I mean!)

 

[JENNYC]

Leah..I would be worried if you are having problems with your eyes. If it continues I would go see an ENT that is familiar with CF. I don't want to scare you but Abby's polyps were actually pushing on her eyes because they had gotten so bad it broke through the bone which is serious. If it is that you need to take care of that ASAP.

 

[rubyroselee]

Hi Jenny - Thanks for the info. That is crazy how your daughter had polyps like that! That's terrible. My ENT sees a ton of CF patients and is very familiar with it. He is seeing me in a few weeks for a follow-up to see if my symptoms are any better. If my vision gets worse, I will definitely give him a call; however, I have actually been feeling really good these past couple days. Not sure if polyps can been seen on CT, but mine just showed sinusitis so far. These sinus issues are all new to me, so all this information is good to know! Hope your daughter is doing well.

 

[JENNYC]

Hi Leah! So glad you are feeling better! It was super crazy and scary! I know that they always did a CT on her and that's how they would let us know that she needed another surgery but not sure what they saw. Guess I should have asked looking back....I was just so panicked over everything that was happening so fast lol. Abby had 10 sinus surgeries and since being on Kalydeco she has not had any sinus problems what so ever. Kaly has been her saving grace. Hope all continues going well for you!!! With 2 boys I'm sure you are crazy busy!!

 

[Ratatosk]

The sinuses can also affect your ears, causing dizziness. My FIL has had sinus issue for years and had a vestibular condition in which teeny tiny calcium deposits were in his Eustachian tubes -- caused waves of dizziness, headaches, vertigo. I believe his ent referred him to a specialist. I would also ask about having him scope your sinuses so get a closer look inside. DS' ENT did this during a routine office call -- numbed the area topically and then used a lighted scope.

 

[dschertz]

Sinus issues can wreak havoc on the body. Make you feel like the dizzy flu. After 3 sinus surgeries, (left one completely removed) I still have lots of issue. Chunks come out after flushing and I get dizzy when the weather changes(barometric pressure), rain etc. Turns a lot into a couch day.

 

[rubyroselee]

Glad to know I'm not the only one who feels like it's a "couch day". That's all I feel like I can do sometimes is just lay around until the dizziness/nausea passes. Today was my first bad day since I went to the ER. Felt cruddy again, lots of drainage (seriously, gross stuff). My ENT did finally let me know that the next step would be sinus rinses with antibiotics added to them if I don't improve. My follow-up is in a few weeks, so I'm going to keep doing the saline rinses until then. Still hoping it gets better

 

[MGrossan]

to rubyroselee: CT showing sinusitis with normal cbc is common. Remember the problem is inactive/slowing of the nasal cilia allows build up of sinus bacteria. Are you near the U of C San Diego? They have pioneered adding medications to restore cilia and lower bacteria count. . For example adding two teaspoons of Xylitol to the 500 ml Hydro Pulse Nasal/Sinus irrigator will reduce bacteria count significantly, helping natural healing. Humming is esp helpful. see www.grossaninstitute.com

 

[Rachael Boyer Bollinger]

I know how u feel... I have sinusitis and polyps in each nostril and constant drainage down my throat. Makes it very hard to sleep at night! Growing up I used to get sinus infections monthly and the only thing that seemed to help was 120mg of 12 hour sudafed twice a day. I still have lots of trouble but this helped make it easier to breathe and not get constant infections. I had three sinus surgeries when I was little and since using Flonase and sudafed I haven't needed to again... Polyps are still there since they grow back but trying to hold out on surgery as long as possible.

 

[vbs420]

Growing up in a humid climate, I always had runny nose, until it plugged up completely.

Surgery at 22. But shortly after I moved to the prairies and the dry climate reduced sinus issues to non-existant.

Then I moved to Vancouver, and the humid climate instantly clogged up my nose, which promoted two exacerbations in 12 months.

Finally got my sinus surgery date for next week, after waiting for 14 months.

But the past six months have only been tolerable thanks to 2 x 500 mg acetaminophen twice daily with 2 x 120 mg pseudoephedrine twice daily.

YES! Four days of pseudo in one day. Anything less and I can't function.

Sinus pressure causes pain so severe my molars hurt!!

I'm really hoping that the surgery is successful.