Headaches and APS

Hi, I am 42 and got a confirmation of APS diagnosis about a month ago. They tested after I had a stroke. Luckily there were no lasting symptoms of the stroke and I recovered within a couple of days. Recently started on Coumadin. I am just wondering if my almost daily headaches and feeling tired and generally unwell will go away once my INR levels are stabilized?

Thanks

Patrice

25 Replies

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  • Following my stroke, at 36, I had headaches and felt exhausted. I took frequent naps and that helped. For me it was a long(er) road to ger my INR stabilized. I believe it usually takes 6-8 weeks, be consistent in your diet and go for your draws on time. I will keep you and your family in my thoughts/prayers. You - like me - are blessed to have a speedy recovery and quick treatment plan.

  • Hi and welcome to our friendly site!

    Hope you have found a Specialist in Canada who is specialized in autoimmun illnesses as that is what we need first of all. Very important!

    What therapeutic level of INR are you put on for your Coumadin-treatment? We usually need an INR between 3.5 - 4.0 to feel without further symptoms but it can take some time to get there. Hope you have also got LMW Heparin in a low dose as a shot to take if your Coumadin take some time to get to the right level you need to avoid further symptoms.

    Some of us note a change in headache but that can be individual. I noted rather fast that i could read again without seeing double. Warfarin has been my lifesaver but I am primary APS and triple positive and Warfarin has worked very good for me.

    Best wishes from Kerstin in Stockholm

  • Hi Phunter and welcome from me too. Please try to take some time to read through as much as you can on here as there is a lot of information which you will find helpful. In particular Prof Hughes Blogs and videos in Question of the Month.

    To answer your question specifically, it is a very individual thing about how long it can take to settle down on warfarin. Finding your specific ideal INR range can take time. Although it is normal to set it higher for people who have had an arterial clot, getting to it and maintaining it can for some people be difficult. Adapting your life style and diet is a juggling act and it can unfortunately take months sometimes to find the best range which should mean the resolution of your symptoms. If you find you are going higher and it's not resolving headaches etc, then it may be that you might have to use other medications along with your warfarin. Prof Hughes talks a lot about patients that have too low INRs and continue with symptoms. He says that's like treating a diabetic with not enough insulin. Be patient as hard as that can be, and allow this process to work while you climb up to your correct range. I'd give it at least a month.

    Stress will also be your enemy so try and relax as much as you can. Finally, you say you have had no lasting affects from your Stroke. Whilst they may not be obvious I can assure you that your brain has suffered an injury just like any other part of your body can. It can take up to six months to recover from that and the headaches and tiredness in particular you are having may in fact be post traumatic headaches from the stroke which will fade in time and go. So again, don't rush to recover, give yourself time, your body will start to feel better soon but there is no magic pill or set time frame. Keep in touch and let us know how your doing.

  • Yes to all who have commented. Phunter please make sure that read and learn as much as you can about Vitamin K content of as many foods as possible-and which foods and spices act as potentiators of Warfarin activity as this is important to ultimately maintaining a reasonably stable INR with warfarin-once you get there and are pretty symptom free you have to do a little work to stay there. I can always tell when my INR has dropped below 2.5 as I get a recurrence of headaches and fatigue. Stress and lack of sleep are no-no's for your immune system...take care of YOU...

  • Interesting! I've not learned of spices affecting the INR. Do you have an easy way of sharing this? I'm still struggling terribly with my INR. To the best of my knowledge I'm quite steady with my diet but INR can be erratic. ( apologies for jumping in here, but hopefully it will also help Patrice. )

    Hello Patrice! My Brother just retired as a professor at University of British Columbia in Vancouver- so has lots of time to help me research APS/ Hughes. There is a very fine Doctor in Vancouver and very good resources there if ever you should need them. They are in touch with Dr Hughes. Let me know if you need info and I'll ask him, but it sounds like you are in good hands.

    Kelly in Texas

  • I have personally experienced an INR instability (increase) when consuming ginger (chinese food), tumeric, cayenne pepper in any quantitiy...

  • Thank you!

  • Also if you have tested positive to Lupus Anticoagulant (one of the three antibodies tested for a diagnose and not Lupus, the illness) it can be difficult to keep the INR in range. I have got all the three and I am also selftesting now since 5 years.

    As the INR can differ depending of so many things like food, virus, drugs, exercise etc it is vital that you go and test your INR often and that they do it in the vein and not in the finger as there can be a difference between the two and that they must find out as it can be very important.

    As APsnotFab said it is important that you do not stress about it and I hope I have not made you feel stressed with all I have told you.

    You will see it is going to be all right and remember one thing: KNOWLEDGE IS POWER!

    Kerstin

  • Regarding Vitamin K:

    More and more books, studies and data are drawing lines between long term effects of the sugary, carb loaded and plastic toxifyed Standard Western Diet (aka SAD) and autoimmunity plus a whole host of common Western chronic diseases. If you limit Vitamin K too severely you may end up eating too much of the stuff that may have contributed to your APLS in the first place!

    Instead, I suggest: 1 do educate yourself as to relative Vitamin K content.

    2 Try to stay consistent. For ex, if you like salad for lunch, then try to always eat a salad for lunch ( and pay attention to which greens are used! Iceberg lettuce has practically no Vitamin K -or other nutrients, while spring greens are high in K and other good stuff, while Romaine lettuce is somewhere in the middle.)

    Since going on a Cleveland Clinic " detox diet" I feel 50 years younger , and , to my GREAT surprise, my INR has not changed much despite consuming waaaay more K. There was a small tweak to my warfarin disease in those first weeks on the diet --but since then? As stable as stable can be.

  • Hi Gina,

    I have learnt that we need Green vegetables to feel better even if it will lower the INR. Therefor I want to eat lot of green vegetables and then I may have to take a bit more of the Warfarin. As with Coumadin it is about a CONSTANT intake.

    Have you also heard that vit K is good for this illness?

    I know you know a lot about what to eat Gina!

    Kerstin

  • Here in the US, some doctors advise their warfarin patients to avoid as much green leafy Vitamin K vegetables as possible. Since I was diagnosed in 2001 I have consulted with 4 hematologists, one of whom wanted me to stop eating all K foods. Fortunately, I was stubborn enough to be skeptical of that advice and research the issue and chart my own way.

  • What did you find out? I have heard that the greens are positive for HS/APS not only because of the different health aspects but because it is easier to maintain the INR and the Warfarin (Coumadin) steady. You must always eat the SAME quantity of it of course! Would like to hear what you say. Could it be wrong?

    Kerstin

  • I'm not sure I have an answer. My gut biome was severely compromised by consuming gluten for all those years. CC asked me to take pro and pre biodics to help sort out my tummy. As well as eating more nutrient dense foods and much less high carb junk food. And indeed my bloating, gas and bowel leakage problems have resolved. My new hematologist opines that my slightly higher warfarin dosage was the result of a more functional gut and less from higher K intake.

    Then there is the whole "does a healthy low carb diet allow a malfunctioning immune system to reboot and so cure autoimmunity?" issue.

    I noticed that at the same time I suffered from my DVTs and TIAs prior to diagnosis that my 1st soprano voice dropped to the high alto range. And I once got a response on this site that APS antibodies can effect vocal chords. So here's the thing --my singing and speaking voice are back in soprano range! So am I cured? Do I dare go off warfarin?(NO) But can I compare my ability to tolerate high Vitamin K intake to other patients???? maybe not.

  • Gina,

    Very interesting with the soprano voice that turned into an alto range.

    I have been singing all my life (went to a music school when I was 9 years old and stayed there till my baccalauréat (french) at 18.)

    I was 1st soprano. When I had my TIAs i could not read the notes in the church-choir as I saw double etc so I have not been singing for at least 10 years. I tried a month ago and I could still sing rather high for my age (73) so now i will start to sing when I find a suitable choir who will take me. (?)

    I think you should stay on Warfarin of course. If you eat greens you have to raise your Warfarin. I take 5 mg of Warfarin each day and have done that for 5 years. The last days I have raised the dose with 0,5 mg 3 days /week

    I have had no problem with my tummy unless i eat weat-bread of course. You have to find out for yourself what you can not tolerate as you will notice it. I eat perhaps 15 different things on my plate that I know is very healthy. A lot of different coulours.

    Why should you not tolerate vit K? How much of Coumadin do you take each day?

    Kerstin

  • I take 7.5 mg a day. And whereas I used to need an INR of over 2.5, I am now symptom free even if it drops to 1.7!

  • Gina, Id be very interested to know if there is a specific brand or type of pre / pro biotic flora for gut biome that Cleveland clinic prefers, or that you prefer. I've used Claire labs some years ago. Likely there are better ones now. You are welcome to message me so we don't " hijack " this thread, unless others might find this interesting and useful?

  • Thank you so much everyone. Of course my fav vegetables are those that seem to have a high vitamin K content. I will have to do a lot of research to figure out what are the best foods to eat.

    Again thanks for all your responses. It is greatly appreciated.

    Patrice

  • We have learned that the administrators have "divided and conquered " fields of expertise depending on what state stems they have involved with their APS and associated Co- occurring auto immune diseases, if any.

    For example, Kersten can speak personally about triple positive anti body titers and what affects her body has experienced with respect to hyper tension and damage to heart valve, and TIA's.

    She also has a lot of valuable advice of green vegetables and how she used this knowledge to balance / counterbalance INR values, all the while reminding us each person is different in how his or her body will respond- but they are indeed valuable guidelines- more that important places to start. It provides theory as well.

    My advise with greens is all eyes to Kersten. Years of wisdom.

  • Hi Kelly,

    O my dear, I am afraid you are exaggerating a lot now!

    On the contrary we can be lucky to have you here on our site. You know a lot and are so helpful and lend your American ear to find Specialists in the US for our members.

    Kerstin

  • I think you have learned a lot about greens... Im lucky here at least my doctors have the same philosophy as you do. Eat the greens STEADILY and CONSISTENTLY and we will adjust the warfarin to you.

    It's the only way at all I've had any luck with doctors. APS / HS is not well known and managed poorly here in the US in general and in Texas- well. Impossible.

  • It's not bad to have a high Vitamin content....as others have said...its about consistency of diet and vitamin k intake....once INR is reasonably stable with a particular warfarin level...just eat with consistency

  • Hi again,

    Have you found a Doctor in Canada who knows about this illness (a Specialist of autoimmun illnesses) as there a very few of them and they are very important to us.

    Also what therapeutic level of INR are you put on and how many of the antibodies are you positive for as I guess they have tested them to give you a diagnose of HS/APS?

    Kerstin

  • If Patrice can't find an APS specialist, My brother, a retired university professor in Vancouver , located and contacted an APS specialist for me who , if I remember correctly, in in touch with professor Hughes personally.

    If Patrice needs a n APS/ Hughes I can retrieve my brothers email to me, or ask him to send it to me again. He is a wonderful resource for us. ( retired plus professor - brainy research- plus a huge heart for us! )

    Vancouver is a little far for Patrice to travel but as the Canadian health care system is wonderfully linked -her doctor could call The Vancouver doctor)

  • Yes. As your blood gets thinner they should go away. Could it also be dairy intolerance or wheat? It was with me. Perhaps too esrly to tell. Hope u feel better soon.

  • Aloha from Hawaii!

    I am a vegetarian although I also have fish ..this is Hawaii!

    I have learned to be consistent....the high Vit K ones (spinach, broccoli, leafy greens ,etc are faves...so I balance them with others and stay on that diet!

    My doc taught me to keep a consistent diet and learn the dosageof warfarin needed to keep me in range.

    Don't forget relaxing exercises like swimming, yoga, meditation and massage...enjoy!

    The other Kerstin frim Hawaii. ...

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