Waking Headaches with RA

Hi everybody,

I am plagued by waking headaches which can start any time of the early hours and if I don't take meds and sleep sitting up they can turn into a migraine with vomiting, which lasts all day.

On average I get about 3 a week and although I track them to see if there's a pattern they continue to happen, no matter what I try. I do sometimes have a wonderful week where they disappear altogether and just when I start to relax they strike again (insert rolling eye smiley).

I'm going to talk to my GP about them, again, this week to see if there's something else I can try to put a stop to them as they do interfere with living and I am quite worn out with interrupted sleep. He has said that as the pain is in my forehead it is nerve pain and not connected to the RA in my neck and he prescribes me Amiltriptylene which I take in the evening a few hours before bedtime. This doesn't help the pain much but does prevent me from being woken at 2:00am with the onset of a headache.

All I want to know do any of you get these headaches or is it just me?

Love, Legs x

55 Replies

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  • I'm waking up most mornings with a headache......have no idea why

  • How long have you been suffering Matilda? x

  • I had a bug late October, which took about 4 weeks to clear, but the headache that went with the bug is still hanging around.....not every day......but bad enough today to take some ibuprofen.

  • Hi again Mathilda, that's a long time for your headaches to hang around if they were caused by the virus, perhaps you should see your GP too this week.

    Unfortunately mine have been around for 10 years now (not exaggerating!) and I just have to manage them as best I can. I just wish I was free from them :-(

    I do hope yours go soon too.

    Hugs, Legs x

  • I have headaches on waking & I now inhale with any decongestant in boiling water when I get up & it does seem to ease the muzzy head feeling & the severity of the pain

    I linked the headaches to my sinuses even though I had no cold or infection........might be worth a try?

  • Hello Lindalegs. As you know headaches can be caused by many things. My headaches where tention headaches. Some people (like me) don't realize they are tense during the day.... but at night, while we sleep, our subconsciious mind takes over.... I don't like strangers touching me, so I give myself a good tension relieving massage.

    I gently place 2 fingers on the suboccipital muscles of the neck, (where the base of the skull and neck meet) slowly and gentlely, in circluar motion rub as much as you can tolerate. Then follow the muscle down your neck to your shoulders gently pinching and rubbing until you get to the top of your shoulders by your arm.

    You may feel a slight bruising later on, don't worry, this is your goal. What is happening is that you are releasing the acid from your knotted muscles

    Good luck and I hope you are headache free.

  • Thank you for replying Suzanne, what an interesting idea, wow!

    I will get hubby on the case tonight after I've looked up where the suboccipital muscle is .....I don't want him massaging the wrong muscles after all!

    Love, Legs x

  • Haha. I really hope you have tention headaches as they are easy to rid yourself of. Please remember when massaging this area, it is a very sensitive area as your brainstem is close by. Don't allow anyone to "crack" or "pull' this area. Just gently massage it.

    Once you get this area mastered, then work on your shoulder blades. Get your hubby to gently massage your back bone area and moving towards massaging under the "wing tips" of your shoulder blades. This is pure heaven!! Again, if you feel bruised the next day, this is your goal. The acid in the knotted muscles are released and your muscles are begining to heal.

    Please keep us informed.

  • Thank you. I will keep you informed, as you asked ....if I'm not comatose after all this wonderful massage! (Hubby'll think it's his birthday!)

    Love, Legs x

  • Ask for an MRI and or referral to a migraine cliic as my friend had similar but no RA. It needs further investigation really.

  • Thanks for responding Medway-lady. Good idea, I'll see what my GP says on Wednesday. :-)

    Love, Legs x

  • I can't say what was wrong with my friend as not sure the very long medical terminology but she had an operation on a vein in her temple. I stress she is absolutely fine now and has no after effects life is normal. Bbt the point is that its better to pursue and get the diagnosis right that just put down to what may be an existing condition.

  • I agree Medway-lady, you are right and I posted on here to get sensible advice. Thanks. x

  • It doesn't sound much like something to do with the RD, but could be to do with your medication? I know some people get a headache with pain medication. Otherwise it looks as if you need some different investigations.

  • Thanks Oldtimer ....though you don't look very old I might say.

    Yes, I too, have wondered if it's the drugs and have stopped my Enbrel for short spells with various ops or infections and it didn't make much difference. Before Enbrel I blamed Mtx so I have tried that route. The trouble is the short spells when I'm headache free can coincide with something I'm trying/stopping and I think it's worked ........then they come back.

    Anyway, thank you for your input, I am open to any suggestions :-)

    Love, Legs x

  • I don't have RA, but PsA. There have been times when I've woken in the early hours with a stocker of a headache. Pain killers don't work, and often make me throw up.

    I always now drink a huge glass of water before bed, and this seems to help.

  • I think codeine often gives me a really bad headache. I make sure now that I only take it in the morning, and not at night.

  • Hi Hector, I have tried drinking water before bed and during the night but it's made no difference, but thanks for the idea, :-) I'm willing to try anything. As for codeine I have it on and off and I don't get a headache afterwards, so it's not that with me. Back to the drawing board.

    Thanks for replying.

    Love, Legs x

  • I have suffered from Migraines since I was 17. When I was in my 30's my doctor put me on 25 mgs of Atenolol for a preventative to keep me from getting the headaches. I am still on them. I got Migraines from being over heated, I mostly woke up with them. Try putting ice on the back of your neck to slow down the blood. It is the blood that is racing to your brain to fast causing the vessels to swell and causing the Migraine. You can also try taking Tylenol or what ever kind of pain reliever you have before bed time. Now when I get headaches it is from dander off the pets. I do have RA the side effects from those cause headaches. I also just had a D-Dimer test because I felt like I was having strokes. Not to scare you, but write down everyday how you feel, what you did, what you ate, if you got upset, then when you get a Migraine you can look back to see what was different. See a Neurologist they can do a scan. One last thing where I get my headaches now is my oxygen is too low. I hope these suggestions help and I hope your headaches get better

  • Sorry that sounds really tough to deal with. I take pregabalin for nerve pain and its fantastic. Maybe your GP will be able let you try it. If its migraines mine reduced after I started taking beta blockers for a heart condition. Hope you get some relief soon.

    Jacey xXx

  • Thanks Jacey, I've made a note of pregabalin and I shall talk to my GP on Wednesday about it......I will pop any pill if it helps! :-)

    Thank you for replying.

    Love, Legs x

  • Hi there it sounds as though your blood sugar is dropping to prevent that have a snack just before bed, it must be protein ie cottage cheese or chicken, a little meat or 10 almonds.wishing you well

  • Hi Denvajade,

    Good point! I've never thought about the fact it might be blood sugar related, I shall definitely try some protein before bed!

    Thank you for taking the time to reply.

    Love, Legs x

  • Lindalegs , I thought you were describing me. Like you I regularly wake up with a headache migraine type. Doesn't matter what time of night it is. I now take a couple paracetamol when I wake, have a long drink of water, go back to bb ed and wear my eye mask. I have the top of my bed elevated to try and help. Sometimes it doesn't help then I either have to stay in bed with the blackout blinds down or wear my sunglasses on and have no lights on anywhere. I've spoken to my Gp about them she said she thinks they're associated with my Fibromyalgia along with the IBS symptoms I suffer with too rather than just down to the RA meds. But at the moment she is reluctant to prescribe anything because of all the meds I'm on already ( mtx, Humira, Sulfa,hydroxy, Naproxen, paracetamol, folic acid ) . Like you I cant find a trigger, I've looked at diet, stress, emotions etc. I've changed my pillows several times thinking it was down to that.

    I don't know what else to try.

  • As I've just replied I have found inhaling seems to help in relieving early morning headaches.....but I have also read that taking paracetamol regularly can cause more headaches that it cures.

    I have been banging on about my broken arm.....just got the plaster off yesterday & now it really aches ....so I am trying to not take paracetamol & see if the headaches stop....or at least get less painful.......still taking Naproxen (+Zoton)......so will see how it goes!

  • Sorry about your arm, I do hope the ache goes soon.

    I've heard about Paracetamol causing headaches too AgedCrone and the doctor has asked me of my usage in the past. I only take paracetamol if I get a headache and stop as soon as it starts to go, sometimes this is just 2 in a day, never more than 4, then I get a break on a couple of days a week when the headaches disappear.

    Taking a Naproxen works brilliantly for me as a painkiller so if the paracetamols don't help and I'm not being sick I take one of those.

    Thanks for replying, again.

    Love, Legs x

  • Well Riedenise, let's hold hands in the early hours eh! It is grim isn't it and you know what I'm talking about.

    I find it's harder to manage in the cold winter months especially as I have to get out of bed to go downstairs to sleep on the sofa sitting up. If I go back to bed it just gets worse. Mr Legs is moving an armchair upstairs for me, along with a sleeping bag, so I can get back to sleep and will feel less exhausted.

    Interestingly I'm on similar drugs to you, though not such a large cocktail and I get IBS too. If you read this thread you will see some excellent suggestions that might help you also. I shall think of you next time I get a nightly-headache ....probably tonight!

    Take care and thanks for replying.

    Love, Legs x

  • thanks LindaLegs for replying, I shall re-read through. Thanks I shall think of you in the early hours and reach out to you,lol. Take care x

  • The side effects from your medications is causing your headaches. Have your oxygen checked and see if your doctor will put you on a preventive. Good Luck Read what I wrote on Lindalegs post it might help. Good luck

  • Danna, my Gp said its probably connected to the fibromyalgia as they can be one of the connected symptoms. though I will ask her to check into things, thank you x

  • Hi there I too have fibro, RA, huge stomach issues and had migraines every day for twelve years, diagnosed low blood sugar which in the end causes diabetes. Eat protein every 3 hours and especiallly before retiring for the night, it doesn't mean more food for the day but small amounts ts of protein regularly.

    I NEVER GET HEADACHES now!

  • Wow Denvajade, that sounds wonderful. I really have to try this protein boost! I want to be like you and headache free ...I know I'm greedy :-)

    Thank you so much! X

  • I am pleased you at

    Re excited, for 12 years I had tests and morphine and stemital injections continually, one day my doctor was not going to be available for 2 more hours and I was too ill to wait, vomiting continually and writhing with my migraine, saw a doctor of a friends and he had me sorted within a week. If you really want to go for it reduce your sugar levels including fruit and fruit juice for awhile. The ondition is called hypoglycaemia. Look it up if you like. Wishing you well

  • I wake up with headaches. This morning being one of them. Check the side effects of your RA medications. You might want to consider a cat scan on your brain. One other thing ask your doctor to do a D-Dimer test. it will show if you are have strokes, heart attacks and blood cots. I had one done this last week. Mine was very high. See your primary doctor and tell them everything you are feeling. Every doctor I was seeing was telling me it was my RA. I found out this last week that I have a mass on my left lung, a lump on my left breast and we were looking for something completely different. You are your best advocate.

  • Dear Danna, poor you! That must have been quite a shock to cope with! I do hope you are sorted out very soon.

    My GP told me some years ago that as my headaches are a chronic steady condition there will be nothing sinister behind them. I have been having them in a similar pattern for 10 years now, though I will talk to him about a head scan to see if anything is going on in there! When my cholesterol was checked some time ago and it was slightly raised I was given a series to tests to check for risk of stroke/heart attack and my score was low. I will mention the d-dimer test though.

    Thank you for responding. :-)

    Love, Legs x

  • Legs, have them check your oxygen levels as well. GBU and good luck

  • Will do Danna :-)

    PS what does GBU mean ...is it rude? x

  • Lol, no Legs it means God Bless You. I would never be rude :)

  • That's a relief! .....and thanks. x

  • My pharmacist suggested that my headaches could be due to the constipation caused by codeine. I take codydramol every morning. Once I sorted out the constipation the headaches went away. Having said that I agree with the people who have said you should talk to your GP about it.

    I do hope you find some relief.

  • Thank you for replying Thelmar.

    Good point, though I'm never bunged up ...I'm the other way if anything. :-)

    Love, Legs x

  • Linda on a basic level if you are dehydrated this can cause headaches. Make sure you drink plenty - even if it means getting up to pee during the night. Lots of heart attacks happen at night as people hold off drinking so they don't have to get up to pee. I recently got a massage machine from Amazon which is amazing and is fab for neck and shoulders - it was only $56 - less than the cost of one massage. Try a spray on magnesium - this can also help if you are deficient in magnesium, which a lot of people are, and can cause migraines. I had them for years caused by hormones and I got a fabulous self injecting pen with a drug called Sumatriptan - worked like magic.

  • Wow May you have a big box of tricks on hand!

    I do drink plenty before bed and during the night in case it's dehydration, so it can't be that.

    Mr Legs will do my massage and thanks to Suzanne (she posted at the beginning of this thread) I even know which muscles he has to massage.

    I shall ask my GP about magnesium levels and the Sumatriptan ....think I'd better change mine to a double appointment, thanks to all the lovely folk on here!

    Thanks for replying May.

    Love, Legs x

  • You are most welcome. Read below for more info.

    ncbi.nlm.nih.gov/pubmed/224...

    healthline.com/health/magne...

    migraineagain.com/easy-fix-...

    patient.info/medicine/sumat...

    Best spray magnesium is Ancient Minerals on Amazon.

    I try and fix myself with natural cures v meds with much success - not a lot of doctors are open minded enough other than to write scripts Linda.

  • I do have an excellent GP May and he gives time to listen and discuss. I've had a read of that web site and especially the list of the foods which contain magnesium which I can easily increase in my diet. I do run anything past my GP, on the few occasions I go with my headaches, as I'm careful with my RA drugs and conflicting with them.

    You are so helpful, thank you so much :-)

    Love, Legs X

  • No problem - am glad you have a good GP who listens. It makes a huge difference. You might not get enough magnesium via the food but by all means try and see how you go. Good luck and let us know how you get on. :-) x .May

  • Hi matilda I suggest that you make sure your gp refers you to a specialist but I would also highly recommend looking for an ayuvurdeic practioner slow but very effective

  • Hi Rocky, thank you for your input, everything in the melting pot helps us all.

    Love, Legs x

  • If you find a cure please post as I would think that I had written this as it described me to a tee!

  • Hi Cherpr,

    It is interesting how many of us suffer from these headaches and I have started trying some of the suggestions on this thread.

    Last night before going up to bed I drank some water for hydration, had a glass of milk and 10 unsalted nuts for protein. This morning I wasn't woken by a headache. This isn't unusual because I do get a couple of days break during a week, but I shall continue the regime till I get a headache and then I shall get hubby massaging my neck muscles. I'll keep you posted.

    Love, Legs x

  • Hi Legs and fellow headache sufferers. I had no idea that so many of us experience waking headaches so it's great to know I'm not alone and to read all the interesting possible causes and remedies. Like Linda, I'm going to work my way through them (it'll take months!) to see if anything makes a difference. On top of everything else my RA has caused havoc with, I find the headaches worse than my joints - they're doing really well on Enbrel which I've been on for about 9 years now. So many possible causes not least toxicity from the various drugs over 35 years but I inject fortnightly and rarely need pain relief so my headaches aren't likely to be from analgesics. So is it my thyroid; bone damage, tension, anxiety, low blood sugar? I'll let you know. What does seem a likely culprit is my (naturally) fused neck. I have regular massage to release stuck muscles in my neck, shoulders and back and this has helped enormously and I find that its worth going without things to afford it. I tripped over and hurt my neck a few weeks ago and have had many more headaches since. My headaches didn't stop during a 9 month lay off from Enbrel so I can't blame biologics any more either! I strongly suspect my neck as anything that taxes it causes a headache. I am deeply suspicious of sjorgrens syndrome as well - I dehydrate overnight however much I drink and wake up with my tongue dried out and stuck to the roof of my mouth. Attractive huh?! Answers on a postcard please...

  • Hi Witness,

    That's an interesting read, thank you for taking the time to put it down.

    After seeing the doc last Wednesday I'm now trying Pregabalin twice a day. I have had 3 waking headaches since but they go much more quickly than before ...so far. I've stopped Paracetamol altogether too, which I was taking for headaches (the doc told me to do it and also someone mentioned it on this thread too) I see my GP again in a month to see how I'm going.

    In June, when I next see my Rheumy I have to check if my knees are MRI friendly and if they are I'm being sent for a scan.

    Hope you have a headache free day :-)

    Love, Legs x

  • Good luck Legs. I forgot to mention the burning nasal passages sensation that accompanies my headaches - has anyone experienced that too? As a precaution I've switched off the plug in air fresheners we have in the house. Never realised how many toxins they emit - VOCs, whatever that means. The mental anguish that RA can bring causes me way more distress than the physical pain - I can understand why that happens, but all these other mysteries - exhausting.

    No headache today, yay!

  • I haven't experienced burning nasal passages, no but turning off the air fresheners is a good idea because they can be an irritant.

    I'm with you Witness ...no headache today Yipee!

    X

  • Let's enjoy it while we can!

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