isolated waking headache

[Tiggywoos]

hello lovely people I hope you don’t mind me posting as I do “stalk” this forum and it’s always helpful 😊

Every morning without fail , anytime between 3am and 6am I am woken up by throbbing headache which disappears within 20 minutes of me getting up and walking around . If I stay laid down headache stays with me .

The pains is vice like and often behind nose or behind right eye . It’s been going on for 4 years .

I never get headache in day and for that I am very grateful . The MRI of head showed bulky pituitary but hormone blood tests normal . Have tried indomethacin and recently candastartan which I had to stop as it caused angiodema . Neurologist said maybe try lithium next but she’s not sure it’s hypnic headache as didn’t respond to caffeine .

My question is does anyone relate to these nighttime / headaches ? I’d be so interested to know if you do .

If you’ve got this far thanks so much for reading . Take care 🙏

Ps , diagnosed with UCTD on the lupus spectrum several years ago

[soul22]

Hi tiggy woos

I get that type pain it's actually from sinuses

You have them above nose tip nose side cheeks etc.

Laying down causing pressure hence worse lay down I use more pillow never flat.

I had surgery as had deviated septum a headmaster threw a float at me hit it as child

I have chronic allergic rhinitis to.

There's also a headache can get if sleep near heating a groggy feeling once up hydrated eventually wears off.

I steam menthol crystal for sinus very little it's strong or oilbas oil steam and use neilmed sinus rinse ear nose throat routine I was given.

So id suggest you see a Ear nose throat speclists as sings issues cause headaches u describe.

If near heating turn off when sleeping will reduce that part

Hope helps

I'm not medic just own tips learned from medic that help

[Tiggywoos in reply to soul22]

Thank you so much and I will def try the crystals . I had CT of sinuses and was negative . I do feel as though I struggle to to breathe through nose but ENT did camera etc said all fine and did loads of allergy tests all negative . Thats terrible 😢 he threw a float at you .

[Tiggywoos in reply to soul22]

ENT gave me nasal spray for rhinitis but didn’t do anything . Also use sterimar as nose gets ulcers up it and really dry . Crystals could be good 😊 👍 as stronger from memory

[soul22 in reply to Tiggywoos]

Hi

Okay

Did ENT put camera up nose down back throat that first thing they usually do.

Steaming helps head also hot but not to hot flannel or cloth held over head etc where hurts relieved alot pain sinus headache.

I use mometasone steroids spray them seperatley dymista a antihistamine and steroids spray not two together.

Yes steaming 😃 great not to hot please don't burn self.

Gently breathe in threw nose etc do few times daily.

Might not be right spray for you sterimars good for stopping nose getting dry.

Sores in nose can be used to much spray or just immune system.

I get mouth ulcers my lupus sometimes sores nose also a dehumidifier by bed is recommended.

Maybe some that help you take care

[Tiggywoos in reply to soul22]

Yes funny little camera up nose down throat thing . De humidifier sounds good too as read that before . Hate the ulcers Also get in mouth . Thank you for fab tips will go boots chemist tomorrow ! Take care 😊

[soul22 in reply to Tiggywoos]

You're welcome 🤗 glad did camera toYeah here's a liquid by ambesol that helped get rid mouth ulcers numbs pain to.

[Tiggywoos in reply to soul22]

😇

[Onthemove1971]

Curious if you have done a sleep study? Do you have trouble with being overly tired towards the end of the day?

Hope you can find what is the root of the problem.

[Tiggywoos in reply to Onthemove1971]

So kind of you to reply ☺️. I am always shattered by 11.00am Monday morningI!

haven’t done sleep study as GP says no way could it be sleep apnea as don’t snore not overweight etc . Ironically though was chatting to a nice nurse from the lung clinic and she said most of her cpap patients don’t fit the “typical “ profile for sleep apnea .

[Onthemove1971 in reply to Tiggywoos]

I would push for a sleep study. I have been told if you wake with a headache it could be sleep related. They are very simple But a small.device on you wrist with a wire to chest. Then it will.recprd.your sleep.

Best to you

[Aquariel]

I have terrible headache/ migraine every morning. Massive rush of adrenalin. I have Ehlers Danlos which I put it down to. Doctor says its blood pressure and yes it does rocket because of the adrenalin. My mother had the same, probably EDS also.. I'm 72 and didn't get it until 4 years ago.I'm not aware I have bad sinuses. Always worse when I know I'm going somewhere so I partially put it down to nerves, also EDS. Could be a bad neck.I get flashing lights behind the eyes as well. No medic has ever found a cause but it was the family that paid to get the EDS gene test because you hit a mental barrier with them. They expect to see a wheelchair or joints hanging out. Sad state of affairs really.

[Tiggywoos in reply to Aquariel]

Blimey that’s terrible I’m really sorry you suffer with it too .. it feels like Groundhog Day every morning doesn’t it . Sad thing is you take the head with you when you go anywhere so it’s not like you can have holiday from it . Thank you for sharing

[1518]

It sounds like hypnic headache, I often get it but not as bad as you by your description. The treatment is caffeine taken as a drink or tablet before bed. As mine isn’t too bad I tend to have a strong cup of coffee first thing in the morning, if I don’t it often turns into a migraine. I haven’t tried the caffeine before bed as I sometimes don’t sleep well, but I’m assured that it doesn’t stop you sleeping- counterintuitive I know! Hope that you get some relief as it is miserable waking like that every day. Good luck 😊

[Tiggywoos in reply to 1518]

I do agree with you 1518 it reads just like a hypnic headache. I tried the caffeine but didn’t work and don’t fancy lithium . I’m sorry you suffer too and really appreciate you replying ☺️