Friday, December 4, 2009

CF and Sinuses

After reading about Ronnie's blog about his first ever sinus rinse, I thought I would give some feed back to him through my own blog. I know sinus problems very is by far my biggest CF complication. Last June I started getting daily headaches. The headaches came on at the same time every day and were so painful, my neck would start hurting. Bottom line, my sinuses were completely impacted. I started doing sinus rinses at that time, soon after had surgery, still had headaches, went on prednisone, headaches went away and I finally started feeling better. However, I continue have problems with pressure and pain (not so much headaches, but pain in my cheeks and teeth). Around the same time I went on prednisone, my ENT started having me put TOBI right in the rinses. Was it the prednisone or TOBI that helped my headaches? Maybe a combination of both?

I have been TOBI in nasal rinses since March. I do four weeks on/four weeks off. During my off times, I feel terrible...during the on times I feel about 90% better. I think the TOBI is working miracles up there. I am in an off time right now and I am struggling. Pain everyday, even headaches. I am talking to the doctors about just doing TOBI all the time. The funny thing is, putting TOBI in nasal rinses really isn't "excepted" by the general medical community as having a scientific benefit. Because of that, my insurance won't cover the medication. Grrrrr.

Ronnie- I agree with other CFers out there, that nasal rinse they gave you was weak sauce. I use a neti pot, 8 oz of warm water, 1/4 teaspoon of salt, and what ever meds. I am mixing in. Talk to your docs. about using this more traditional method. Mandi will be more pleased with the results :).

1 comment:

  1. I saw an ENT at Stanford named Dr. Hwang. He is fantastic. He suggested an interesting spin on Tobra for sinus spray. He had me mix a little bottle of Tobradex (which is used for eye infections) and a small bottle of saline nasal spray like Ocean. I just shake it up each day and spray some in each side. I don't use it everyday. I either do a few times of week if I am doing ok, or on two weeks, off two if I have a sinus infection. It's pretty cheap too.