Severe headaches with copd and fibro

[Mooskie]

Hi,, I live in Canada and have had copd for the past 9 yrs (diagnosed as severe) and about 2 yrs ago I got fibromyalgia. I am on 0xygen 24/7, still walk, but am now experiencing migraine-like headaches with nasau. I sometimes wake up with the headaches, but mostly they just pop up whenever and. Can leave suddenly ,or hang around for days. Anyone else experience these. Don't believe I am retaining carbon dioxide.

[Hidden]

Hi

As someone who is a c02 retainer it certainly sounds to me that you could be...the symptoms are severe headaches when you wake up and nausea and feeling drowsy ...it can ease off through the day.

I wasnt like it at first but the headaches i was getting were horrendous and they can check to see if your a c02 retainer when you have your earlobe bloods done .

Its very similar to migraine which i suffer from too so perhaps get checked for that if your bloods are ok

Hope this helps

[Mooskie in reply to Hidden]

Thanks so much. Just been to my pulmonary specialist and he is ordering a cat scan of my head. Hope they find a brain in there!

[Scud in reply to Hidden]

I am also on oxygen 24/7 and was waking up with the same symptoms I now turn my oxygen down when I go to bed and don't get the headaches anymore

[Mooskie in reply to Scud]

I am going to turn my 02 down tonight and hopefully I will wake up tomorrow morning. 😉

[callum19 in reply to Hidden]

I have earlobe tests at moment is it used for sleep apnea too as my levels are still low what does that mean thanks robbie

[Hidden in reply to callum19]

Oh i have no idea if its used for sleep apnea....i have them to check my oxygen levels and c02 levels..its a raise in c02 that causes my headaches.....if you havnt had yours checked via your COPD team i would suggest you mention it to them.

A lot of us with COPD have problems with c02 being high

Hope that helps

Mandy

[callum19 in reply to Hidden]

Yes that does help my co2 is low which is worrying them at the moment but my inr had gone. Down to 1.3 but slightly higher not much this week to 1.4 but I take waferin every day and don't miss a dose.

[Hidden in reply to callum19]

Is your c02 low or your o2

[callum19 in reply to Hidden]

Earlobe test is low in oxygen but no dioxide she said

[Hidden in reply to callum19]

oh if its low how low are you talking...have they talked about getting you on oxygen

[callum19 in reply to Hidden]

I'm in automatic pressure at ńight but looking at a ventilator if there's no improvement after that they will think if adding oxygen to the ventilator but I think there making me getting used to the. Machines pressure

Where are you from I'm from North Wales

Robbie x

[Hidden in reply to callum19]

who me ?

[callum19 in reply to Hidden]

Yes my name is robbie short for Roberta. How long have you been on oxygen your information has helped me a lot to understand the tests I have every month. Thank you so much.

[Hidden in reply to callum19]

Dont be silly thats what we are all here for to share info and help each other out....ive been on oxygen a year and a half and i know how difficult it can be ...people seem to think we have it to help us breath so wonder why we are breathless when we have it.....There is loads of advice and support on here your always welcome to ask

[callum19 in reply to Hidden]

Yes my co2 is. Low

[Mooskie in reply to Hidden]

Hi again Mandy: can you tell me what action is taken if retaining too much carbon dioxide! Thanks...Jackie

[Hidden in reply to Mooskie]

Well i can only speak about me and they gave me a machine called a nippy which i connect to my oxygen and use it when i sleep.

My consultant said its during sleep when our breathing is very shallow that c02 builds up thats why we generally wake up with a headache...

Mine got so high that i was falling asleep for a split second and didnt know until one day i was sat with a coffee watching a film on tv and the next thing i know i had the hot coffee all over my legs and burnt myself.

If you have high c02 its pretty awful the headaches are similar to my migraines and your sleepy and cant concentrate but often wears off a little during the day as your blowing it out .

but the nippy machine has been great its just a mask for bed instead of the cannula

Having your abg blood gasses or earlobe bloods done will show if your retaining c02...as a c02 retainer i also have to be careful of some medications i take especially sleeping tablets ..im not allowed them because it slows you down to much when your sleeping

Its definitely not something to ignore

Hope that helps x

[Mooskie in reply to Hidden]

I am assuming a "nippy" is what we call a "c-pap" machine which is used for sleep apnea. It forces you to breathe deeper and regularly. I am a very shallow breather at all times, so probably much worse during sleep. I am going to ask my pulmonary doc about getting one. Do you still keep your O2 on during sleep or do you turn it down to a lower rate?

[Hidden in reply to Mooskie]

yes it is a cpap...it is used for that yes as you say it forces air into the lungs while you sleep....all of us breath much shallower when we sleep.

For me i had it like i said cos my carbon dioxide levels were going high when i was sleeping and getting the earlobe blood tests showed i had too much carbon dioxide in my blood which caused the headaches etc..

im on 4 liters of oxygen and turn it down to 2 litres when im on the nippy at night and yes my oxygen goes through the nippy machine ..

i feel much better now i use it

[Mooskie in reply to Hidden]

Very interesting. I am only on 2.5LPM. I am going to try and get one. Can't hurt! Thank you so much for the info. How long have you been on oxygen? I have 3 yrs on it and was travelling with portables, but this year I haven't done much. I feel tired all the time. Bye for now..jackie

[Hidden in reply to Mooskie]

You will feel tired all the time if your carbon dioxide is high it makes you feel terrible...ive been on it just over a year....there is a link i found for someone else to buy nasal pillows i can find if you need but will chat tomorrow x x night

[callum19 in reply to Hidden]

I'm not allowed sleeping tablets either my gp had put it large print on my file

[callum19]

I have fybromyelga too. With meniers disease but I also have sleep apnea at 64.85 current levels. Fybromyelga can give headaches and tiredness.

Hope you feel better soon robbie

[Mooskie in reply to callum19]

Thanks for your response. I am going to investigate my carbon dioxide measures and go from there. Thanks again.

[butter-fly]

Hi Mooskie,

You'v had some good replies and I really can't add much.

You doctor appears to have problem in hand.

Where in Canada do you live? I lived in Vancouver for a good part of a year and then several years in Toronto.

I loved Canada.

Sara

[Mooskie in reply to butter-fly]

Hi butterfly: I live in Calgary, AB last 8 years but spent 46 years in California..split between North and south. Loved california and I really miss the ocean. I was born in Winnipeg but moved to Calif in 1960 and returned in 2006 to Calgary where I have family. I thought the clean air would be best but forgot about the elevation and barometric changes! Also, didn't think about the cold winters!!! Duh!.........yup.....a blonde!

[butter-fly in reply to Mooskie]

Yeah Mooskie. It gets a bit chilly in Winnipeg in the winter and then some! Husband was arrested for free flying a hot air balloon in Medicine Hat! But never did get to Calgary. My friend used to play base in the Banff Springs hotel and her second husband I think, played the sax. Used to rub shoulders with the big stars then. Long time ago now.

Can see how you'd miss Calif. Spent a while wandering from Toronto to Calif. and along the coast to San Francisco. Stayed in Carmel for a couple of months. Seventh Heaven!

You have the summer to look forward to now Mooskie so enjoy. Hot. Hot. Hot. Have you acclimatized well?

Sara xx

[Mooskie in reply to butter-fly]

Hi Sara: wondering if you went to "the hog's breath inn" owned by Clint Eastwood, who at that time was mayor of Carmel. It was a great place ....felt like a cavern! I love Carmel By the Sea.

Used to go to the Bob Hope classics golf tournaments to watch.

Got hit on the head with a golf ball...maybe that s why I have a headache now!! LOL

I spent many times in SF....love it! Walked across the Golden Gate Bridge once (maybe I should say "staggered") there were about 8 of us! Oh is it great a reminisce! Thanks for the treat.

Jackie

[Mooskie]

Thank you...I will read up on that blog (after I do my taxes)....jackie