Waking headaches : Good morning super forum people... - LUPUS UK

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Waking headaches

Tiggywoos profile image
23 Replies

Good morning super forum people 🌸.

Random one for a Friday but I know you won’t mind me asking 😉. Can normal weight people get sleep apnea? I’ve had a waking headache for over 3 years now 😔 (it does shift once I get up and move around ). I wouldn’t know if I snore as husband is always out for the count and my GP is 12 so will have no interest .

Would appreciate any thoughts ..

Thank you for reading and take care

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Tiggywoos profile image
Tiggywoos
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23 Replies
Jmiller623 profile image
Jmiller623

Yes, they can. If your palate comes too low, your tongue is too large, your tonsils are enlarged, your jaw is too small.

My husband is normal weight and gets sleep apnea. He has a special mouthpiece he wears at night to keep him from snoring. It works and he feels more refreshed in the morning.

You can get home sleep kits to test for apnea. You want a sensor on your finger overnight and it measures your oxygen levels and number of breaths.

Hope this helps.

Tiggywoos profile image
Tiggywoos in reply to Jmiller623

Thank you so much Jmiller . I bought a pulse oxymeter for finger but I’ve only managed to keep it on for couple hours . Will try for longer tonight and also google home sleep kits . I’ll let you know how it goes 😉

Jmiller623 profile image
Jmiller623 in reply to Tiggywoos

I think you can get one from one of your providers. It’s like heart monitor but for your breathing. It’s a sticky that goes on your head/earlobe/finger that measures oxygen. The recordings are downloaded by your doctor and reviewed.

Maybe ask your GP? This is how my husband was diagnosed. They used to make you do a sleep study in the hospital which was the worst.

Tanitani profile image
Tanitani

Headache when waking up could comw from many other reasons

Piscesdreamer profile image
Piscesdreamer

Morning headaches that go away once you are up and moving can be a symptom of APS and other conditions. APS makes people hypercoagulable. Some people with Lupus also develop APS.

Tiggywoos profile image
Tiggywoos in reply to Piscesdreamer

Thank you so much for replying . I will mention it to rheumatologist when I see him next month x

Tiggywoos profile image
Tiggywoos in reply to Piscesdreamer

I did test positive for anti cardiolipin antibodies twice but negative for lupus coagulation x

Piscesdreamer profile image
Piscesdreamer in reply to Tiggywoos

Maybe it is time to run a new thrombophilia blood panel?

Tiggywoos profile image
Tiggywoos in reply to Piscesdreamer

Ooh thank you 🙏

Tiggywoos profile image
Tiggywoos in reply to Piscesdreamer

Had full blood count yesterday as results from March showed white cells low and low platlets but raised red and haemaglobin

Piscesdreamer profile image
Piscesdreamer in reply to Tiggywoos

I am not knowledgable enough to comment on your results.

KayHimm profile image
KayHimm in reply to Tiggywoos

Have you told your rheumatologist about the headaches? I was going to ask you if you have aPL. They can really cause a lot of neuro stuff even when you don’t have clots or full blown APS.

Maybe it is good you finally talked about your headaches here.

A lot of doctors aren’t comfortable prescribing the neuro meds, at least not in the US. You may need to see a neurologist.

xk

Tiggywoos profile image
Tiggywoos

Ah that’s ok you’ve been really helpful thank you 🙏

KayHimm profile image
KayHimm

Tiggywoos -

Headaches are under treated medical problems. They cause much pain and even loss of productivity. I once read that in the US at least the neurologists think GPs do nothing refer to them for treatment enough, which means needless suffering.

Three years is way too long to have a headache! They have to diagnose the type and get you on medication. There are new and effective treatments now.

You see a super forum person. And one who needs to have less headaches 😜

😍

Tiggywoos profile image
Tiggywoos in reply to KayHimm

KayHimm please will you add me to your patient list ?😉. Dr Himm 👩‍⚕️ will see you now 😊. You are so right .. 3 years is way too long and it’s like I’ve woken up every day with a hangover . I actually took an aspirin before bed last night (mums idea .. retired nurse ) .

Still had banging head but interestingly no leg pain !

🙏

KayHimm profile image
KayHimm in reply to Tiggywoos

Haha .. my rheumatologist calls me Dr. H too. 😂. I challenge him all the time. I know he would agree with me, though, that three years is way too long to have a headache without evaluation and treatment.

It is really hard for them to know if your headache is from autoimmune disease. But they will treat it anyway!

I take what I now call “neuro modulators” thanks to JMiller’s understanding of these meds. They do help.

What is the leg pain?

Tiggywoos profile image
Tiggywoos in reply to KayHimm

It is like someone has tied a band around the low legs on both sides and is pulling it tight . The bones in the low legs hurt too and wrist bones .Nighttime is stressful Dr Himm !

I shall google neuro modulators…

Tiggywoos profile image
Tiggywoos in reply to KayHimm

I’ve tried absolutely everything to prevent the waking headache .. not eating late , drinking water before bed , headache pills before bed… I take hydroxychloroquinine in the morning but i had the headaches long before I started on that drug ..

Don’t laugh… we even thought our house we were living in at the time was haunted and the ghost 👻 was causing my headaches !

We’ve changed the headboard , bought black out blinds , tested the water even !!!

SleepyWolf profile image
SleepyWolf

Hi, I'm afraid I don't have any useful suggestions but this interested me as I almost always wake with a headache (I'm excluding migraine days which have their own pattern). It usually subsides after getting up and downing a couple of mugs of tea. I wondered if it related to my dry mouth symptoms, i.e. dehydration or something. I hope you get an answer soon x

Tiggywoos profile image
Tiggywoos in reply to SleepyWolf

Thank you SleepyWolf . I also wake up with horrible dry mouth and first thing I have to do is spit .. sorry TMI 😳. Mine also subsides after 2 pints of warm water but I think it’s the fluid I actually think it’s because we move around ?

Take care and I really appreciate you taking time to reply x

Tiggywoos profile image
Tiggywoos in reply to SleepyWolf

Does It feel like a thick head ?

SleepyWolf profile image
SleepyWolf in reply to Tiggywoos

Yes, although sometimes there's a bit of pounding too! You may well be right about moving around helping it subside - I've noticed that just sitting up in bed can make a difference, on days where getting up has to be divided into small stages :)

Tiggywoos profile image
Tiggywoos in reply to SleepyWolf

Yes absolutely agree …. I’ll sit up for a bit then swing legs over the side and stay like that for a bit I feel for you .. it’s horrid 🤕🌸

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