I have been suffering more and more with headaches and migranes. Some weeks it's feel like I have them daily, other a couple of times a week. For those that suffer a lot with them, how do you cope, what do take for them?
I'm finding them very debilitating at times 😔
Hi,
I saw that you are on Warfarin since some time ago. What INR do you have lately and what is your therapeutic range set by your Specialist? Do you have Lupus Anticoagulant positive and do you also selftest?
I have had a lot of neurological symptoms before I started Warfarin but not migraine. Did it not help with the Warfarin? If it does not help when you have an INR that is high enough you should perhaps have something more or change to some other anticoagulation-drug.
Others here know better about what you should do if the anticoagulation does not help.
Best wishes from Kerstin in Stockholm
Hi yes I've been on warfarin since Jan 16. Lots of issues with range it's currently 2-3 but I'm sitting at 3 last month or so. Range is going to be increased but having to sort other issues in relation to low ferretin etc out first. My lupus anticoagulant was negative, positive, negative. I do have a self test machine yes. Am under a lot of stress so don't think that helps with the headache formation.
My INR range was changed this past spring to 3-4. I am having trouble keeping it in that range and actually feel my chronic daily headaches (?migraines?) would possibly improve if I was in 3.5-4.0 range. Then I would KNOW if the higher range works. I am working toward that goal.
In the meantime I am doing what I have been doing for headaches for the past 54 years--taking aspirin. I've always known it is a 'miracle' drug for me. It may not work so well for others, but it certainly works for me. I just wish I did not have to take so much of it--2 of the 325 mg tablets every 6-8 hours, every day. Occasionally I can go 12 hours between doses but not often. I have tried many other drugs for headaches without success.
Over 20 years ago I tried low molecular weight heparin injections twice a day and it did not seem to help the trigeminal neuralgia or the headaches. A few times I have taken a dose of LMW heparin in addition to my Coumadin when I had a severe headache, but it never helped. However, Coumadin was a tremendous help with the neuralgia pain but not the headaches. An INR of 2-3 was high enough to stop 90% of the neuralgia. But nothing, so far, has stopped headaches except frequent doses of aspirin. Tylenol NEVER touched my headaches and I suspected that situation was due to the fact Tylenol didn't thin my blood as aspirin does.
I have also noticed that my hearing and sense of smell become VERY acute during particularly bad headaches. Bright lights are not such a problem during headaches but LOUD sounds are frequently a big problem. At times the smell of food cooking or perfumes etc. makes headaches worse.
Good luck in your search of what works best for you.
Nancy in West Virginia
Hi Nancy,
Hope you reach that goal and that you are able to selftest rather often to follow your INR as soon as it drops etc.
Kerstin
I do self test since January of 2007. But my INR has been erratic. I test weekly but may need to test twice weekly. I have also been on antibiotics frequently due to immune deficiency (CVID) and that makes INR unstable. AND, lots medication changes which affect INR. One day I will get INR steady.
I'm sure you have been advised daily magnesium helps with migraines. I'm on it, but I'm not sure it helps us APS folks. Neurologist suggested- is aware and familiar with APS. Mixing Benadryl and phenergan to sleep/ abort a migraine is helpful. ( but does not prevent...)
Neurologist suggested.
I've found nothing helps but Coumadin. Lovenox was no help at all. ( I re clot quickly in LMWH exclusively. And horrible migraines 4 times a week.) I need close to 4.0 to be ok.
Magnesium has never helped me either even though my Magnesium runs low periodically due to chronic diarrhea due to CVID.
I keep Benadryl/zofran and sometimes phenergan on hand for headaches but they are not very helpful either.
I wake up EVERY day with a crushing headache which is usually relieved with aspirin but not always. AND, I use a bipap machine with oxygen at night so the headache is not from my sleep apnea. It's a thorny problem.
I did start low dose naltrexone last October which is somewhat helpful with severity of headaches but does not help with frequency. But overall , naltrexone is helpful for me.
Thanks for everyone's ideas.
We will eventually figure our problems out with this forum to share ideas.
Nancy
Ok, I'm going to throw out a couple of other things your way. We talked about this once before in June. The cranial nerve blocks in June with LOCAL steroid injections. ( I thought it made my INR go up- you responded with a Eureka moment. I've been meaning to tell you to hold off on that. The injections are local the docs assure me. Should not raise INR. They are right. I have injections every 4 weeks and INR has not ever elevated again with them. It was just a coincidence.) I'm sure with dealing with these migraines you've already tried this. You've got YEARS on most of us here.
Also, I know APSnotFAB has heme cranial headaches. Since Fragmin she's been relieved from them so I guess that's a mute point, but perhaps that's just her individual reaction to LMWH, luckily. I do know there is a very specific protocol and medication for it - you might on her contact her regarding the specifics. She had one of the worlds leading headache specialists working with her on this condition- she's a wealth of knowledge.
My headaches are remarkably better since getting the INR in a happy range for me. I feel very lucky and want the same for you. You have way too many strikes against you right now.
I am trying for 8 weeks straight at 3.0 or preferably higher(3.5). If that doesn't help headaches then I have to rethink the situation. Maybe need 3.5-4.5 for target INR but I doubt that will happen. Also, want to be on levothyroxine at lease 8 weeks to see where I stand in regard to headaches.
Still have research to do.
Nancy
Reglan and sumatriptan helps my wife's headaches.
It will be interesting to see when your INR is higher if the migraines settle down, also when sorting out your low ferritin, was your B12, and D tested plus Thyroid, it is not uncommon to have poor thyroid function alongside Hughes Syndrome, and if your iron is low the thyroid will not take up any thyroid medication. Some on here are on Aspirin or similar alongside their Warfarin, or on additional medication, it is important that you have a good medical consultation over this, to try and iron out some of these difficulties.
I currently take: B12 injections, vitamin D, iron and I think with these supplements my blood levels are now normal.
On 6/24/17 I was started on a low dose of levothyroxine because my thyroid tests showed me to be at lowest normal levels AND one of the antibodies was elevated.
Does anyone know how long it takes levothyroxine medication to work? It's been almost a month since I started it but it does not seem to have a positive effect yet. MAYBE it takes longer than a month.
When I first started Coumadin for the trigeminal neuralgia it took about 6-8 weeks for the neuralgia to diminish about 90%. Maybe it will take a couple of months for thyroxine to kick in?
One day-----
Nancy
not everybody suits Levo, some do better on Natural Desiccated Thyroid, It certainly works for me. MaryF
I suffer with migraines and find I get them less often when my INR is over 3.5. When it drops below this I get frequent migraines, so do try to get them to increase your range. I self test so I increase my Warfarin when this happens.
Yes, yes, and a resounding all to familiar yes. I think we've all learned the hard way. " trial by fire."
You know, I just got INR increased from 2.5-3.5 in the spring this year to 3-4. But I do think, like you, that 3.5-4.0 would be best for me.
What do you mean by 'ledlegs'? Do your legs feel like lead when you walk? I have had had a problem in last 4-5 years where I can't walk very far because my legs feel like lead. I did find out in summer of 2015 that I am in severe heart failure. But this heart failure (microvascular ) is improved by a special biventricular pacemaker increasing my ejection fraction and lots of high dose heart medication. So lead legs should be improved if my heart is the cause but they are not.
Tomorrow I get a Doppler ultrasound of both legs to check my circulation. In 2009 this test was normal for me. This test will determine if my lead legs are due to clogged arteries in legs.
Thanks for your thoughts.
Nancy
I'm not on warfarin I'm on clopidogrel for the aps. But I have suffered with awful migraines for yrs and am on a daily beta blocker to prevent them as I was getting them daily. I am on the lowest dose of propranalol twice daily possible that controls them. As soon as I come off the beta blockers I get them everyday again.
When I do get a migraine I take naratriptan on prescription which usually gets rid of it if I take it wuick enough
I took a beta blocker for years with no effect. I also tried a 'triptin' which did not help.
One day we will figure these intractable headaches out.
Nancy
Hi again,
You have got an excellent answer from APsnotFab who knows these symptoms incl migraine exstremely well.
As I thought you need a higher INR. I must be on an INR of 4.0 to get free from my vision/balance/numbness/vertigo-issues that are very typical for our illness.
I selftest every second day to know that I am in range and the CoaguChek XS-machine show a higher level of around 1.0 in INR in comparison with the vein-test at the lab in hospital. So I hope you have doubletested a lot of times to know that the two values do not differ too much and that most important thing is that they DIFFER THE SAME value every time. If I have an INR of 5.0 on my CoaguChek XS I have 4.0 in the vein if I should test it in the vein at the hospital-lab. How about you?
You have had Lupus Anticoagulant positive once so now you can not take it after you have start Warfarin. The other two is ok to examine in a blood-test though.
Hope you can find a Doctor who knows these type of patients we are with autoimmun illnesses and who is used to treat HS/APS-patients who need a much higher INR to feel ok. That is exstremely important to you as this illness will never go away but can be treated with bloodthinners first of all!
Warfarin has been my life saver.
I live in Stockholm/Sweden and I found this site 5-7 years ago and with them also prof Graham Hughes who is the man who we listen to all the time. He knows what he talks of from his experience with own patients but also from thousands of HS/APS-stories.
Best wishes from Kerstin
❤️ Keeping mine at 4 no matter what. Even if I have to do what my doctors advise against. When I'm showing them my INR charts ( that I make myself because we have no clinics here- yes you heard that correctly- no one has even offered me a way to chart my INR... and I show them I don't bleed but I'm FAR better with symptoms- then they agree to let me go to 4 or even a little higher.
I have my own machine- test every day.
I promise I'm about to bombard you with posts, questions, and photos of tests with questions.
I don't advise anyone overstep their doctors the way I did. But I don't have access to an APS specialist in Texas. I did go to London and see the dr Hughes. I'm following HIS advice. Just not my Texas doctors advice. I see an APS specialist next July in Colorado. ( 14 month wait list.) so I haven't gone completely wild Wild West lawless rogue. I'm just sick of stupid. I'm taking control of me. That's all. Thank you very much. I got very educated first. And I keep my doctors in the loop every step of the way and I let them know EXACTLY what I'm doing so I don't make a mistake. They are just stepping back and drawing for platelets- it looks like a balancing of act of Coumadin at mostly 17 and every 4th day 18 keeps me hovering between 3.7-4.2 INR. I'm feeling very well but still dealing with irreversible damage and still can clot. ( 1/3 of patients still clot despite being properly anticoagulated...) ???
Dear Wild West Lawless Rogue!, I agree with you. And don't bemoan the fact you have no Coumadin Clinic. The Coumadin Clinic here nearly killed me by trying to follow their 'Standing Stone' app in computer for heart valve patients on Coumadin. APS patients are different. They got hysterical when my INR was 4.5 and tried to stop my Coumadin for 2 days. I have found even stopping Coumadin for one day can drop me from the 6 range to 2.3 with my blood clotting in the tube. The Coumadin Clinic nurses said I had to 'mind' them (by stopping my Coumadin for 2 days) --like I was a two year old. I refused. And luckily, my GP backed me up.
Do you get your meter and strips from ALERE? If so, don't they make you send your INR results on their APP to Alere and make you account for every strip? And after every test don't they send a fax with your INR results to your prescribing physician? I had to get 'Alere's Prescribing Physician form ' completed by my physician with target range, ICD diagnosis, and physician contact information so Alere could send weekly results to him. If I didn't do this, I got no meter or strips. How can you get above target results and Alere not refuse to send you more strips? I'm just trying to figure this all out because this is new to me cause I only had to start doing INR's by this method in May.
Bombard me!
I only take 7.5 -7.5-8.0 mg of Coumadin a day to get in 3-4 range. However, I seem to be super sensitive to Vit K. I am keeping track of every significant source of Vit K I eat daily and I can't connect intake with INR results. There has to be a way to do this. I was a registered dietitian for years and with diabetes and hypertension there was always a connection between carbohydrate or sodium intake and blood sugar and blood pressure.
I have irreversible damage, also, from heart failure/kidney failure/and lung issues (on oxygen at night). I did not know the importance of a higher INR until I joined this forum. I went to famous and not-so-famous clinics (Baltimore, New York, Cleveland) and they knew my diagnosis and never said a word about my INR being higher than 2.5-3.5. You live and learn.
Keep me posted with any new ideas.
I really think I could feel better than I do now if these clotting problems were adequately treated.
I have had access to APS specialists in past and they have not been much help. Of course, locally, in Huntington, WV, we have no specialists I can find. My biggest supporter was my GP (since 1988) who last month left his private practice and took a hospitalist position in a nearby town. I am am sorely missing him and on lookout for new GP.
Thanks for your input and everyone else's also!
Nancy
Yes, Coumadin was a life saver for me,too, in eliminating most of the 24/7 burning jaw pain.
Yes, I double test my meter INR with lab INR every 4 weeks when I get the IVIG infusions (antibodies ). My new CoaguChek meter INR readings and lab readings are often identical. If they vary it is only by .2. So meter is very accurate for me. I got my new meter in May thanks to information from you all.
My old InRatio Hemosense meter was not so accurate.
Since I have been on Coumadin since January of 1996, I was never tested for LA prior to starting Coumadin.
I have wondered, though, if my OTHER clotting disorders besides APS (Lp(a), homocysteine, and others) are part of this headache/fatigue/ lead leg problem.
One day much of these clotting issues will be figured out.
Nancy
Thanks everyone. I currently am not seeing haematologist for a month and Dr D'Cruz till October. How do I go about getting it raised before then? Would the lower INR also cause more muscle/joint pain too?My coag machine has always only been 0.1 out every time double tested so know it's fairly accurate. I have no idea whether my lupus test means I'm positive or not? My ferretin is now normal. Don't think I had a vit b12 or D done. My thyroid was very very slightly low. Currently taking co codamol for the headaches. Main issues are the headaches and stiffness/ pain in my muscles/joints at the moment. My haematologist is not really that interested in my symptoms and often avoids answering my questions about side effects. Even about why I'm loosing so much hair!
I find all this fighting so exhausting 😔
I should add that why we doubletest is because if we have Lupus anticoagulant (LA) positive, it can give a false result on the Coagu-Chek XS-machine. Some of us are very sensitive and it can give a big difference but others not such a big difference. Anyway you must find out.
I did these double-tests perhaps half a year but now I know that I can handle to keep my INR stable and high enough.
My personal opinion is that no one with this illness, especially those who have Lupus anticoagulant (LA) positive, should be on Warfarin if they are NOT allowed to selftest and also first doubletest with a lab. There are LMW Heparin (Fragmin)-shots to take if it is quite too difficult instead of Warfarin.
You must take the two tests within some hours and at a reliable lab where they can send the sample fast to be answered (wrong word cant find the right!).
As APsnotFab also said ask for a LMWH (Fragmin)-shot to take when the INR is too low!
Kerstin
I forgot to say that it is the VEIN-value that counts. To know "where I am" I have to reduce my Coagu-Chek-value and if the INR is very high one day I have to reduce it more. The higher values the bigger difference. But you must have to find out for yourself because even if we are both Lupus Anticoagulant, as I think you are as you have been once positive before you started Warfarin, we are all individuals.
I suggest you get a copy of the test where you were positive for Lupus Anticoagulant. It can be good to have at home.
Kerstin
Hi yes I have always double tested with the lab vein results within an hour and they gave always been 0.1 out either side so a vein of 3.0 meant my machine was either 2.9 or 3.1. Normally the higher one.
Yes I need to get a hold and sort all my results out.
Just wanted to add that having been diagnosed with APS since 2000 headaches have been an ongoing problem. I used aspirin and Plaquenil to start with and the headaches went but then began to creep back so I was put on a trial of LMWH Clexane which was very successful and all headaches disappeared.
I remained on Clexane because of issues with my stomach and it held for some time but sadly the headaches began to return so the dosage was increased and they disappeared again along with a number of neurological symptoms. Recently I was asked to reduce my dosage back down because of fears of a bleeding risk and ongoing Gastritis. Some of the headaches have returned and I'm afraid it's about painkillers and waiting it out.
For me there is a definite link between anti coagulation and fewer headaches in APS something my neurologist agrees with. Hope you find a solution soon.
Hi Kerstin,
The decision to remain on LMWH was made by my rheumatologist who I was seeing for the APS at the time because of ongoing problems with my digestion, I seem to have a great deal of difficulty tolerating a number of medications especially those that are unkind to the digestion!
I see a neurologist for the neurological complications of the APS, tremor, loss of balance, small vessel ischaemia, poor memory etc.
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