APLHA 1 AND HEADACHES

Morning everyone, just wondered if anyone else has alpha 1 and suffers with constent headaches, B4 i was diagnosed with Alpha i was diagnosed with COPD normal symptoms breathlessness, but i have always suffered with my lungs since birth and only recently diagnosed with Alpha 1 due to my quick decline in health. on previous visits to the docs i told them i had constant headaches and was it to do with the COPD to which i was told no, nothing has changed im an alpha but the headaches persist as b4, my sats are brill considering condition im constantly tired, my eyelids feel like lead even after ive slept ok, i constantly wake up with this annoying headache which then restricts my daily actitives as well as the SOB, would welcome any advice on this, Thanks Sonia. xxx

[hufferpuffer]

Hello Sonia, I'm an Alpha1AD but I rarely get headaches. It could be down to not drinking enough water or even needing your eyes checking, I hope you find some answers soon, huff x

[Hidden in reply to hufferpuffer]

Thanks huff, seems to be one thing after the other, ive just had an echo cardiogram got to wait two weeks for results of that, full pulmonary function test and a 24hr holter, they were gonna put me on theophylline but were worried i wouldn't benefit from it due to how advanced it has progressed in the last 6 months, i suppose im finding it hard to deal with and all the symptoms with it and the effect on my and kids. xx sonia xx

[Hidden]

I cant really help Sonia but my husband often (6 out of 7 days) wakes up with very bad headaches. We have never found the problem. Sorry that sounds so negative - I wonder if you suffer with sleep apnea that can cause those symptoms and I have read that many COPD sufferers also suffer with sleep apnea. Hope you find a solution. Lots of love TAD xx

[Hidden]

Thanks tadaw, thats the same for me 6/7 days a week, got lots of tests coming up, so will ask, Take care x sonia x

[hufferpuffer in reply to Hidden]

Good Luck with all your tests Sonia, I was wondering do you know what phenol type of Alpha you are? I'm mz . I hope your headaches clear up, huff x

[Hidden in reply to hufferpuffer]

I'm ZZ phenotype. My kids have got to be tested now, just hope their M type, fingers crossed, would hate the thought I've given them wot I've got. X Sonia x

[Hidden]

i get chronic headaches when i wake up and very very sleepy and confused ...this happens to me when my waste gases are high

[Hidden in reply to Hidden]

Hi Mandy, some one else sed this to me about gases got appoinent Friday with specialist so will ask. Hope ur ok , r u still singing in the shower lol take care Sonia. X

[Kelda]

Me too, I was going to ask if you're on oxygen as that can give you headaches. It also sounds like tension headaches. Is your bed comfortable? Could it be anything to do with the way in which you're sleeping. I often have to sleep sitting up and that sometimes gives me awful headaches. Also because I can't breathe too well, all my neck and shoulder muscles get really tense and that causes headaches. Try having a massage or use deep heat, it may help. It depends where the headaches are. I also use lavender essential oil rubbed into my temples, which helps sometimes.

The community on here are very understanding and it's wonderful to have people who understand. You are not alone.

Anyway, hope I have been of some assistance, I know how debilitating and frustrating poor health is and I wish you luck and relief Sonya.

[Hidden]

Hi Kelda thanks for the response I'm not on oxygen at the mo and once the itchy skin has stopped or I'm that tired I do eventually nod off and sleep quite well, I suffer with migraines but since my breathing has got worse so have the headaches, got specialist Friday see if the have any advice but big thanks for the reply much appreciated. X Sonia x

[Hidden]

did you get your headache situation sorting out if not get your c02 levels checked because i always wake with headaches when mine is highx

[Hidden in reply to Hidden]

Hi Mandy how's u, not asking my doctor anything anymore sick of being dismissed I'm being referred to the QE Birmingham for my Alpha 1, they have a specialist clinic there will put everything to them and hopefully they will understand more. How u feeling about ur news from bromford.??? X Sonia x

[Hidden]

its awful isnt it being in our position just wanting to know whats going on and these so called professionals ignoring it

to be honest it was back in january my consultant mentioned lung transplants and i had no intention of going through with it...its only been these last few days im coming round to the idea...im going to go with the flow and hopefully i will feel ok about things at some point...

till then im just going to try and build myself up and try not to get any chest infections x

low c02 levels give you terrible headaches when you wake up that ease o as the day goes on it also makes you feel groggy and very sleepy and hard to concentrate on things...mine were so bad i was in hospital a couple of weeks ago because i fell asleep with a coffee in my hand and burned my legs

it could have been so much worse

these people should walk in our shoes and see how hard it is and scary x

[Hidden]

I think it's amazing what they can do these days but it doesn't make it less scarey, and ur right I think if they had some of these procedures done they would be more understanding , the arterial blood gas test is a pet hate of mine bloody hurts, once I refused to have it done and the nurse was so snotty with me, doctor blackmailed me wouldn't let me home unless I had it done . I have been told I will be offered a transplant eventually but for now I'm not unwell enough which suits me, alpha 1's suffer with the liver aswel , it's there all the problems start from, so could end up needing a liver transplant too, oh the joys. Well as u sed TRY and stay well and take care x Sonia x