Could we have the day off ?
Posted , 9 users are following.
Do any off my fellow Bronchiectasis sufferers also have sinus problems?
Between constantly coughing up phlegm, blowing my nose, painful ears , headaches post nasal drip it is really pulling me down π€§. Does anyone else have these problems. I can imagine I'm not the only one ! I also have nasal polyps but anaesthetist is very reluctant to give me anaesthetic for the op, so been trying steroid drops.
I've been prescribed oral antihistamins for many years, am on nasal sprays, drops etc
It's relentless, wish we could all get a break folks π’
2 likes, 19 replies
janet24 IdiopathicBX
Posted
Oh that sounds like a wonderful idea!! Sorry you seem to have a whole gambit there IDBX.
I have spasmodic tinnitus...which is quite bad at the moment...actual rhythmic thumping in my left ear at. I use a nasal spray for the head pain that gives, don't feel it's sinuses but who knows, the doctors don't seem to either.
I've just started taking a supplement called serrapeptase in the hope it will help me.
All the best to you,
Janet
IdiopathicBX janet24
Posted
Oh Janet, I just felt I had to upload and know other BX sufferers would understand. Ha, my house is like Holland & Barret with the amount of things I have tried. My mum has tinnitus like yourself so really feel for you. I'm bad enough with the dullness in my ears and the pressure ( that feeling when u are on a flight ) .
Wishing you all the best too xx
sharon1253 IdiopathicBX
Posted
I suffer from year round allergy/sinus. In fact, my pulmonologist attributes my bronchiectasis to the drainage that I have had most of my life damaging my bronchial tubes! I've tried every antihistamine there is, they help some, but all seem to have their own side-effects. I was in the hospital in January and since then I have had no strength or stamina! I've tried everything I can think of to try to get stronger but so far nothing has helped. If anyone has any suggestions, I would appreciate it! I, too, wish we could get a break!
IdiopathicBX sharon1253
Posted
Me too Sharon , my specialist said having had BX all my life has contributed ( sinusitis usually comes hand in hand with bronchiectasis )
Like you I would appreciate any suggestions. I do nasal irrigation with saline rinse. I was in hospital too over xmas, it really is worse for us in the winter months. Like you I feel drained and don't feel assertive at the moment.
I must go through a few boxes of tissues per day with the amount of mucus.
You sound like myself Sharon your "SICK of being SICK"
Sending you hugs xx
aitarg35939 IdiopathicBX
Posted
I have quite an assortment of tricks for my sinuses, Clarinet, Nasacort, saline mist & a battery operated gizmo for serious sinus cleansing, plus I use 2 kinds of homeopathic drips specific to things that produce a reaction in me. I've had 2 sinus surgeries: 28 years ago they removed a bony growth blocking a sinus opening between the eyes & put in extra drainage holes on the worst side, and 5 years ago for a fungal infection. My anesthetists recently approved me for a short back surgery, only because the lung doc signed off. You sound like you could use both polyp removal and extra drain holes.
I avoid the outdoors before 10 a.m. due to all the pollen being released. I may step out for 5 minutes but anything longer has to wait. Our heavy pollen & mold season has already begun so I might not spend much time out at all right now. I avoid traffic fumes. All of this avoidance is good for both sinuses & lungs. Not much fun but more fun than ABs, for me anyway.
All those things that I do & avoid cut way back on the drip & infections. When I was still getting out of the house most days, I kept a set of homeopathic drops in car and house. Still if I could remove my 25 yo carpet & get the heat/air ducts cleaned, I think I'd have far fewer problems
IdiopathicBX aitarg35939
Posted
Oh i've tried the Clarinex , nasacort too. Do u feel your gizmo helps aitarg ? Yeah I really want to have the op to have the polyps removed. Told them I'm willing to take the risk of the anaesthetic to get some relief but was told the anaethesist "won't touch me" after the results of my spirometry tests, the joys !
What a time you are having and that's after you having surgery.
I've actually been on constant rotation of antibiotics, you would think this would solve the problem, but nope. It grinds you down, dosn't it but hey ho π xx
It gets so overwhelming
aitarg35939 IdiopathicBX
Posted
It does indeed grind! I hope that you'll soon feel better & your spirometry will improve & surgery can be done.
The gizmo helps me, had to use it because of the fungal infection & 4 times daily after that surgery. I only use it now when things are bad. They don't cost a lot but I'd check with the ENT first because of your polyps.
I hesitate to suggest asking about this because I know how much agony sinus surgery produces but surgeries are performed without more than local anesthetics. Of course there's no local to inject into the bone but if y'all agreed ahead of time not to try to drill more drainage, just remove the polyps, that surgery would be doable. People with carcinoma avoud anesthetics like the plague and still sometimes have huge surgeries with nothing but locals. I don't know if I could do it, but I just let them cut my eyelids up with only a Xanax plus locals. Nowhere near as painful post-surgery as sinus surg, tho. If I were trying it I'd probably ask for some acupuncturist to help during surg.
IdiopathicBX aitarg35939
Posted
Thank you aitarg
Got appointments next month so fingers crossed. As for spirometry, I've always known my lungs would deteriorate over time , 55 years is a long time for my poor lungs so the rapid decline in my lungs is to be expected.
Today's another day, don't feel as bad (emotionally) this morning , thanks everyone for your much needed support X
brenda96406 IdiopathicBX
Posted
IdiopathicBX brenda96406
Posted
You too Brenda, aww ! Oh think I just needed to unload how angry I felt this morning. We are all in the same boat, probably never have a full night uninterrupted sleep for coughing up phlegm and blowing our nose. I must spend a fortune on tissues lol π.
Best wishes to u xx
Papillion IdiopathicBX
Posted
IdiopathicBX Papillion
Posted
Ha....what else can we do Papillion π€§π¨
lizanneUK1962 Papillion
Posted
Sometimes coping is easier said than done, don't you agree Papillion ? When we are struggling every single day of our lives it's bound to wear us down some days.
My consultant said I'm an inspiration the way I managed to cope with my illness all my life BUT I also have many days I don't want to be here as it has worn me down so much.
People struggling with severe bronchiectasis are warriors who are fighting a never ending battle every single day of their lives π
IdiopathicBX lizanneUK1962
Posted
I agree 100% lizanne, I am feeling more positive today, good days & bad days eh? I really think there should be cognitive behavioural therapist nurses specialising in respiratory disease. I know they have these nurses in Newcastle. Unfortunately it's a post code lottery yet again ! X
lizanneUK1962 IdiopathicBX
Posted
Yes I definately agree , I've been for counselling but felt the counsellor did not understand the symptoms of bronchiectasis and the constant challenges we have emotionally as well as physically