British Lung Foundation
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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

17 Replies

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


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


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


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


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


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


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


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


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.


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


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


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


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 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


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


Hi here are a couple of tips that will help you. take some hydrogen peroxide 35%, 7 drops in one gallon of distilled water shake really well to get rid of bleachy taste, drink one litre a day through the day.

Bathe your feet every night then massage the soles of your feet with olive oil and carbide this will stimulate your lungs while the hydrogen peroxide will fix your lungs.

There are other things that you can take that will benefit you and everyone else come to that we are all deficient in these things due to chemical fertiliser restricting the uptake of sulphur and boron both of which we get from the sun though

The most important is sulphur coarse crystal flakes, the sulphur needs to have no additives or anti-caking agents as these stop the supplement working further than your GI Tract build up to 2 grams a day 1 gram in the morning and one about 3 in the afternoon as this is when our bodies start to fatigue, start carefully as your skin may show a reaction if you take too much take an eighth of a teaspoon first then build up over the course of a couple of weeks to 2 grams a day. your body has 1-2% of sulphur in it and is used in hundreds of processes including delivering oxygen around your body and cleaning out your arteries selenium is also very good and can be researched.

Nascent Iodine 2-3 drops a day 6 days on one day off you should do this for all supplements you take in order to give your body a rest.

Boron take in the form of Borax make sure no scent has been added you can find this in the laundry department of a supermarket. 30 mg a day of borax combine with magnesium which you need to be taking 400-600mg a day of.

proteolytic enzymes I have to find out the right brand for you as most of these have additives in and therefore will not work the link is fascinating and well worth a read especially if anyone has had a vaccine.

the above supplements will remove most of the heavy metals out of your body over the course of a few months as well as doing hundreds of other things in your body

What the pharmaceutical companies do is buy up all the independents and then make sure the supplements are not as potent as they should be, the reason pharma drugs don't work is due to the heavy metals in our bodies these interfere with the absorption which is the key to health. the british army tested all supplements on there soldiers in ww2 and not one of them worked and this was for basic stuff like vitamin c magnesium and the most common things they tell you we need, the most efficient way of getting the nutrients you need is by way of food but you will need to grow this yourself due to all the pesticides in the food chain, do not believe the word organic as they just don't tell you some pesticides are in there like rotenone although organic is much better than standard supermarket food,

Another thing is removing a lot of things that are not good for our bodies these are the worst things that over the years will break down your bodies resistance

stop using the microwave oven,

when heating your food heat destroys the amino acids in them so the very least we should all be doing is having a vegetable or raw food smoothie for breakfast try and use a low speed blender as the faster a blender goes the more heat it creates which does not help our cause,

try not to use plastic in connection with food or water,

tap water is essentially chemical soup so distilled water with an electrolyte added into it is perfect for our bodies,

replace table salt with organic sea salt table salt is toxic to our bodies and takes 23 times the amount of cell water to rid our bodies of this,

some of the phenols in foods are not good for us the highest foods with phenols in them are milk which then leads onto cheese and butter tomatoes and soy are also really bad,

also if anyone has an illness immediately cut out pork this is the most acidic meat there is as the pig has no sweat glands it cannot get rid of the toxins and therefore it goes into the meat.

and the last one is wheat we should not be putting this into our bodies.

every morning earth your body go barefeet on the grass for 15 minutes this can take up to a couple of months to really notice the difference but your body will take up electrons out of the earth as well as balancing with the earths energy.


Wow what a read and thank u. X Sonia x


LOL its only good if it works, I'm still waiting for the info on the proteolytic enzymes and I've found out the best way to take the hydrogen peroxide is to have it administered by IV although the drinking way will still help, I'm not sure if your doctor will help you with the IV but you can ask them anyways.


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