Help with headaches/pain in back of head and neck 😩

Hi i was diagnosed with APS 3 yrs ago and i test possitive for lupus. I self test and take warfrin and have a target of 3. I just wondered if anyone could help me please. Im getting alot of headaches/muzzy head/migraines lately and its getting me down. I think some of them come from the back of my head/back of my neck. Has anyone else had this or have any advise for this. My nurologist has put me on a daily tab of amitrictaline to keep the migraines away but its not helping me with my heads that are getting me down. Thank u in advance and sorry about the spelling mistakes....its been a looooooong day!!!!

Gemma

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  • Hi, please remind me do you have a Hughes Syndrome/APS specialist? Also if you are seeing them or the Neurologist it is also good to look at other things, if having blood tests, ie B12, Vitamin D and iron levels to check that none of this is low, and also Thyroid function to check that nothing is adding to the likelihood of more headaches.

    MaryF

  • Oh and one final point, you may need to have your neck looked at to rule out any mechanical problems in that area! Also tension can make the neck muscles tense and make headaches worse. MaryF

  • Ok thank u

  • Hi! Yes i see a specialist at southmead hospital in bristol. I am still under a nurologist as i had a stroke after having my little boy. My doc sent me to see him for some advise about my heads. I have just had my bloods checked at the gp and all came back ok. Im not 100%sure what was done but thyroid and iron was defo checked.

    Many thanks Mary

  • Hi. As Mary said it's best to check out ur neck etc.

    I suffer terribly with headaches/migraines which are unbearable when. My inr is below 4. It's been a fight to get them to raise my inr but finally they have!

    I wish u lots of luck. If u want any advice on how I got them to listen & how they agreed to a higher inr just let me know 💋

  • Hi!!!!

    Having a higher inr was mentioned at my last appointment but was told it would not b advisable. I do think when my inr is higher i feel better. How high is your inr if u dont mind me asking.

    Thank u!!!!!!

  • My target is 3.75 I'm set between 3 & 4.5 but we try to keep it between 4 & 4.5.

    Yesterday it was 3.4 so he increased my dose of warfarin I've had a bad headache again for a few days. But once inr goes up the headache gets better.

    It's a constant sea-saw and very frustrating but I'm hope to get there.

  • Thank u! Its defo something i will bring up again

  • Hi,

    I am really glad that your headache is better! Do you need an INR over 4.0 to get rid of that terrible pain?

    Have you thought of selftesting and manage everything yourself?

    Kerstin

  • I'd rather self test but the test strips are £78 for 48 I'm told. I couldn't afford the ongoing cost x

  • I get my strips on percription from my gp and i pay a monthly payment for my percriptions. Is that an option for u?

  • It is good that you can selftest. That way you can control your INR that is does not go too low. An INR of 3.0 is too low for most of us though. How often do you test your INR and is it usually that low? Prof Hughes says that we need an INR between 3.5 - 4.0.

    Is the Neurologist your Specialist? We have found that those Doctors do not "get" what Hughes Syndrome/APS is about - too thick blood that has to be properly thinned.

    I had a sort of stabbing pain in my head that only lasted for half a minute or so from different parts of my head but that disappeared with the other neurological symptoms when I started Warfarin with INR high enough.

    Could that be the cause of your headpain?

    Best wishes from Kerstin in Stockholm

  • As well as the headaches I do get the stabbing pains. They stop me in my tracks and make me hold my head. The come and go quickly. It then I'm left with what I call an agterpain for a few minutes. I can have between one and hundreds a day! 😂

  • O gosh that sounds really scary. I hope u dont get these too often!!!

  • Sorry about that!

    But you have found that a high INR helps with the headaches? Even the stabbing pain?

    Have you noticed if you have an INR that goes up and down a lot and how often do you test in the vein (is it in the vein?) ? If we have difficulties to keep our INR at a steady level we need to test more often. An INR of 4.5 is rather high so you have to be careful so it does not increase too much. I have been on much higher but I reduce at once when I notice it. I have never had a bleed whatsoever.

    You could also try LMW Heparin instead of Warfarin. Perhaps it could work.

    Kerstin

  • All your fab advise is defo ringing true with me so thank u so much for your help.

    I check my inr every other day and i do feel better when its higher. I think as i am worried about it being high i think i make it yoyo up and down to much and that could b the cause of my bad heads. My specialist mentioned that he thought if my inr was higher i would feel better but he said its to dangerous to do it. So i think i have let it go higher but then got scared so i make it yoyo too much.

    My specialist is an aps doc and im still under the nurologist if i need to see him.

    Many thanks!!!!!!!!

  • That sounds good. You check it as often as I do. That is rather unusual on our site. Very good.

    You should make notes of the INR, date, Warfarin tablets, other drugs, green vegetables etc. I reduce my INR when too high with more green vegs. You can not change both greens and tablets as that will be double and very wrong. Constancy is the key to selftest.

    Do you have Lupus Anticoagulant? Have you doubletested in the vein often? Is there is difference between the fingerpricktest and the vein-test?

    My CoaguChek value is perhaps 5.0 and then the vein-value is 4.0 a couple of hours later so I always have to reduce the CoaguChek-INR-number to get to the real value which is the bloodtest taken in the vein.

    No I am tired and will go to bed. I stop now so I will not write something wrong here.

    Kerstin

  • gemgemz my advise is look at Prof Hughes Blog for this month and follow his advise. Not having a high enough INR is tantamount to not being medicated and the proof is in your symptoms. There is no point in taking half a dose which gives you no relief it's like giving a diabetic half their insulin! I get fed up with those who say it's dangerous to take INR too high as they miss the point they are dealing with patients who have blood that is too thick and likely to clot.

  • Thank u soooo much for this!!!! I will defo read it. Thank u!!!!! 😊

  • Hi just another quick question. Where is the best place to read prof hughs blog? Thank u so much for all your help. Your advise has helped me feel more confident in getting my target changed. Thank u APSnotFab ☺

  • On the top right of this page under "Pinned Posts"

  • I dont seem to be able to find it....im not great on computers 😂 would u recommend signing up for the charity newsletter? Would it have info like this in it? Im much better with a hard copy 😉

  • Go up to the top of this page as it is. You will see on the right hand side a section that says Related Posts and then directly under that another box which is headed "Pinned Posts". In there you will find Prof Hughes Blog there for this month. If you want his Blogs for previous months just look right at the top right of your screen where it says "search sticky Blood -Hughes Syndrome. Click in there and type in "Prof Graham Hughes Blog and the name of the Month and year". Then hit enter.

    We are not associated with the Charity and they do not post his Blogs on their website. They are actually not very supportive of him at all which is why they have changed their name recently.

  • Pinned posts are SOMETIMES at the bottom of the page, depending on what device you are using.

  • This is going to sound very basic... but check the position of your neck and back on your pillows you may need to adjust your pillows/pillow👀

  • So gemgemz how did things work out?

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