PCD/Bronchiectasis and headaches - PCD Family Suppor...

PCD Family Support Group (UK)
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PCD/Bronchiectasis and headaches

Iram_sa
Iram_sa

Hi everyone, I have PCD and bronchiectasis and regularly get headaches which stems from my shoulder and neck. Its not migraine/stress related as I get them and they are different.

I just wondered whether there was a link between the lung condition and pains in these areas? I do get more and more breathless and tired now.

Thank you in advance 😊

14 Replies
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Hi I also have PCD and Bronchitis.

I do get a lot of headaches.. mine comes from blocked nose or sinus symptoms.

It could be your posture too (I also have this problem) my chiropractor told me Sometimes I’m really tight in these areas because of breathlessness and tight chest symptoms so my posture is bad

I hope it gets better for you soon x

Iram_sa
Iram_sa
in reply to Hope4321

Thank you so much for replying. My husband did think it could be my poor posture too. Has your chiropractor recommended anything?

I also get headaches from sinus issues and had sinus surgery twice in two years. Those headaches were different and in a way more painful.

I have been going for massages regularly but that’s only a temporary relief.

Hope4321
Hope4321
in reply to Iram_sa

No problem.. I know how it feels with this illness every so often new symptoms come up and we just want answers.

I am due to go in to chiropractors every week for six weeks and she is going to try her best to help me have good posture.

In terms of tips for home , she suggested sitting on an exercise ball instead of chair/ sofa . Because it forces you to balance and sit straight.

She advised to sleep on my back .

And she taught me to lay on a hard floor on my back with knees to chest and arms both out on the floor stretched . This helps open up lungs/ chest area and forced you to breathe deep into our stomach.

Never sit with one leg crossed on other - causes bad posture. Sit with both feet flat on floor.

Hope that helps. You should definitely try to go to a chiropractor.

Iram_sa
Iram_sa
in reply to Hope4321

Thank you for these tips. I was actually crossing my legs when I read the “never sit with one leg crossed over the other” and immediately uncrossed them lol.

You are so right we are always looking for answer for all these symptoms that come up and sometimes I feel so embarrassed seeing my GP because of all the various symptoms and side effects I have had from the condition.

Oh well.. it is what it is.. hope it goes well with the chiropractor for you and you stay well 😊 x

Hope4321
Hope4321
in reply to Iram_sa

Haha well I was sat like that when I was with the Chiropractor and I asked her ‘what’s the best way for me to sit’ she said ‘Not like that!’ Lol 😂

Yeah I understand.

It’s actually so nice to talk to people with this condition. It’s so rare. 😊 nice to meet you Iram and take care x

I struggled with these sort of headaches stemming from my right shoulder and neck (and almost constant pain in my shoulder) for as long as I can remember until I took up yoga last year. I am now much more aware of my posture, when it’s poor and how to correct myself. 🤞 after years of accepting niggling right shoulder pain and relatively regular headaches stemming from my neck and shoulder, I am now almost always free of the pain and discomfort. Occasionally on very stressed/cross/crunched up kind of days it’ll start to niggle but I know I can fix it. Good luck finding your answer x

Iram_sa
Iram_sa
in reply to BessH

Hi Bess thank you for your reply. So was your headaches due to poor posture? No link to the condition? Glad to hear yoga has helped you. I did try yoga myself but with my joint issues I had to stop.

Glad to hear it’s helping you and hope you stay headache free 😊

Morrison10
Morrison10
in reply to Iram_sa

Hi all

I’ve been reading about your headaches. I always use to wake with migraine type headache (thought everyone did) doctor prescribes Amitriptyline 25mg to take before bed, helps lot. 15 years ago gave me print of OMIM re Kartagener in which states that two thirds people complain about rather severe chronic headaches, some thought it caused greatest suffering. I’ve had several small hole drilling ops on nose also it was broken in war when bomb caused part of shelter to fall onto nose flattened it and pushed to one side. Few days later when bleeding stopped doctor pushed it nearly back to middle with his two thumbs! ENT consultants have always refused to try reconstruct nose so that I can breath through it. Also had experimental daily washouts for three weeks with penicillin and ephedrine, great after first week but then rapid deterioration and result was sinus linings destroyed, told to avoid all nasal chemicals, steam over boiling kettle helps.

Happy New year

Iram_sa
Iram_sa
in reply to Morrison10

Goah you have been through so much! Thank you for your tips. Will discuss this with GP next week.

Happy New Year to you and everyone else here x

Morrison10
Morrison10
in reply to Iram_sa

Hi all

Something else that caused added problems and I suggest to avoid was having experimental grommet in one ear 25 years ago. It was blocked up within few hours, caused pain and slight but troublesome balance issues. Had to wait 7 months to have taken out at Queen Elizabeth Birmingham, and nerve in that ear killed so now have no hearing in that ear. Other ear needs hearing aid but discharge causes issues - don’t wash hair when ear bad! Thank goodness for dry shampoo!!

I’m sorry this is all about my problems hope my experience helps others.

Best wishes x

I agree, I see a cranial osteopath who helps drain my sinuses every few months, also a chiropractor who helps relax my back and shoulders, coughing is quite debiliating and can cause the back to seize up, I get headaches to but this all helps!

Hi Chrissie82

I’m interested in your sinus drainage treatment and the chiropractor.

Can I be inquisitive and ask if these are NHS or did you have to find them yourself.

Having PCD plus flattened nose as result of bomb damage when I was 7 during war, I have severe sinus problems, have had few holes drilled, but always refused reconstructive surgery. When had cilia test at Leicester they had to use a baby probe. I steam over boiling kettle, sinus washouts didn’t help. Occasionally use Dymista for nose.

Yes coughing etc adds to back neck issues, hope chiropractor helps.

Best wishes

I pay to see my chiropractor, it's £40 and i see him roughly every 4 months. I used to have cranial osteopathy which was done privately to although i dont do that so much now as i feel my chiropractor does enough. I steam with hot water and vapour rub to. Sometimes i might watch youtube tutorials to show me different sinus drainage techniques which help. Good luck!

Iram_sa
Iram_sa
in reply to Chrissie82

Hi Chrissie,

Happy New Year

Thank you so much for replying and glad you have clarified these as thought I was only one. I have my sinus drained regularly when I go to my ENT doctor at Charring Cross London, as my pseudonomas has recently been from my sinus.

The continuing coughing makes sense.

Thank you for your reply once again.

Take care,

Iram

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