APS and migraines: Can anyone here tell... - Hughes Syndrome A...

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APS and migraines

Can anyone here tell me how the migraines associated with APS and or testing positive for antiphospholipid antibodies manifest themselves?

Are they acute episodes, ongoing, headaches or migraines/cluster headaches?

Have any women here had only headaches/migraines as a symptom of APS and not recurring miscarriage. Can some patients have some symptoms and not others?

Has APS specific medication helped or migraine specific medication?

Does anyone know if testing low positive for anti beta 2 glyco protein -1 is better than having higher levels?

I have sent an email to APS Support but they completely misunderstood and just replied saying they couldn't advise on individual cases - which I hadn't asked for.

I had explained that the consultant who told me to take and aspirin every day also didn't know much about it so couldn't get any more advice from rheumatology.

I frequently forget to take my aspirin and although I have Ajovy injections for the migraines, after a fairly good year the magic is beginning to wear off.

I also often have low platelets - sometimes they are low side of normal and sometimes as low as 110,000, usually hovering at about 135,000. This is from blood tests ordered by the GP surgery and not automatically communicated back to rheumatology so I have started asking for printouts to take to my next appointment.

Thanks

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Brychni

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Star132 years ago

Were you diagnosed with APS by your GP or by an APS specialist? If by a GP I would suggest you ask for a referral to a APS specialist or a specialist Centre.

There are many types of migraine and it’s important to have the right medication to treat it. I suggest therefore a two pronged approach.

Get your APS sorted first as it’s possible that the treatment that you are put on will help with the migraines or kill them off entirely.

Once that’s achieved, if you are still having issues, I would ask to be referred to a specialist headache Centre where they can diagnose exactly the type of headache you are suffering from and put you on the correct medication.

Brychni• in reply toStar132 years ago

Hi Star13 - I am already under a migraine clinic and take a preventive injection biologic.

a few years ago I was diagnosed with Undifferentiated Inflammatory Arthritis. Possibly due to other factors and symptoms but probably more likely due to the anti beta 2 glyco-1 which has been detected 3 times now I have Undifferentiated (?) Connective Tissue and Lupus added to my notes. I also have low platelets sometimes but fairly regularly and have been very low iron which resolved with ferrous sulfate although I have a feeling it's low again.

Because of the anti beta 2 glyco-1 I was told to take aspirin and that it was unlikely the cause of my migraine/cluster headache problem (which have really ruined my life) but that consultant was not particularly knowledgeful about anything to do with lupus or APS and couldn't really tell how migraines present with APS.

I have been on hydroxychloroquine since diagnosis and take Prednisolone when pain is unbearable and Etoricoxib.

Even though I am quite fit, don't drink any alcohol or smoke and eat well I am now quite worried about the blood clotting risk which, the consultant told me was small but significant. He said this was due to the relatively low anti beta 2 glyco-1. However, I was told by my GP that levels didn't matter, positive for those antibodies was positive. I can't find any information about it any where. I also can't find any info about wither or not taking aspirin helps with the migraines in APS patients (and I suppose lupus patients with the same antibodies).

My next rheumatology appointment is in August. I feel totally in the dark about this. what it is it in APS patients that causes the migraines - is it blood clotting?

Star13• in reply toBrychni2 years ago

Basically the brain cannot cope with sludgy blood, so many people find that once you add an anticoagulant, which thins the blood, it helps the headaches.

Given that you have not had a clot you may find it difficult to find a specialist willing to prescribe an anticoagulant like heparin or warfarin. Prof Hughes used to give his patients a 3 week heparin trial to see if it helped. It’s a big step and only something that your specialist and you can decide but quality of life must play a part.

You could ask your GP to try you on clopidogrel instead of asprin and see if that helps. Personally I have still had to use Topiramate as well as Heparin to control mine but then I’ve had clots. It’s a bit of a balancing act I’m afraid.

Brychni• in reply toStar132 years ago

Hi Star, thanks for the reply. In the end I found the relevant info (most of it) on the APS website and Lupus website when I googled 'living with APS'. TO be clear I haven't had any other symptoms but putting the aPl, low platelets and iron deficiency among other things together I wanted some better info than 'take an aspirin' from the previous consultant. He was absolutely wrong about how the migraines manifest, suggesting that they were always catastrophic events. Migraines can be the only symptom of APS but also of simply having the antibodies. So he was right about aspirin but not about levels of aPl.

So the aPl, without APS (even without lupus) can and do cause problems with increase risk of stroke.

This is an issue because, doing my own research (no joined up thinking among the specialties at the hospital) I shouldn't be taking Etoricoxib for the joint pain flare ups if taking a daily aspirin. Which is a pity because it works really well.

Hydroxychloroquine, however is very good for people with aPl and APS and I've been taking it for 3 years now so I think I'll stick with it!

Thanks again.

user666• in reply toStar132 years ago

this is no longer accepted practice. With out a proven history of clot no heparin or warfarin is suggested outside of pregnancy for just positive APLs. Aspirin is first line prevention though. You do not have APS nor should be treated with dangerous blood thinners unless you have both the antibodies and have had a clot.

Migraine with aura are very associated with a heart defect, PFO ,more so than APLs positivity. Maybe ask about this.

Star13• in reply touser6662 years ago

user666 You are NOT a qualified Doctor so you cannot give the sort of advice that you have written above. Secondly you live in the USA where the approach to treatment is very different. ANY treatment is decided between a specialist and their patient. I would remind you that diagnostic criteria’s are there for research purposes and are unhelpful in a clinical setting.

user666• in reply toStar132 years ago

I gave no advice different than you stating no heparin or warfarin was likely to be prescribed. I told her to ask about pfo that is all. Not sure why you are so hostile?

Star13• in reply touser6662 years ago

“You do not have APS nor should be treated with dangerous blood thinners unless you have both the antibodies and have had a clot.”

Let the Doctors do the diagnosing and decide what treatment is best for their patient! Bedside Doctors giving advice can be very dangerous!

user666• in reply toStar132 years ago

I meant that one does not have aps not specifically you, sorry. It was a figure of speech not a diagnosis. GOSH

Star13• in reply touser6662 years ago

But it’s not up to you to even make that statement! There are plenty of people who have been diagnosed with APS on this Forum over the years, who have the antibodies but have not had a clot. They have been treated to STOP them from getting clots! Just because a diagnostic criteria states something does not mean in practice that it will be stuck to rigidly. A specialist with years of experience will make judgements about how to treat their patient and certainly won’t sit around and exclude a treatment just because they don’t fit neatly into a box.

You don’t have the years of experience or are qualified to come on here and give the sort of advice you are giving. This forum is for people who have APS who talk about their experiances to help other people. Is that you?

user666• in reply toStar132 years ago

your advice bringing up heparin trials that are out of date and no longer recommended is dangerous. Are you a doctor??

Star13• in reply touser6662 years ago

What gives you the right to say what is out of date and dangerous? And by the way there is nothing wrong with me writing personal facts that happened to me personally!

Stick to the rules of this forum which is to talk about things based on your PERSONAL experience and not to try and play Doctor which clearly you are not.

user666• in reply toStar132 years ago

I suggest you try living by your own demands of others….

Star13• in reply touser6662 years ago

Gee, I can see why Trump is like he is….,🤦‍♀️

Brychni• in reply touser6662 years ago

Hi - I am happy with the aspirin and have no need to go to an APS specialist. But I do rely on Etoricoxib and shouldn't be taking it if I am having a daily dose of aspirin.

user666• in reply toBrychni2 years ago

Did your doctor prescribed low dose aspirin? As long as the prescribing doctors know the other daily meds you are on they likely weighed the benefits vs risks ratio to approve both.

Brychni• in reply touser6662 years ago

no, it was a different consultant and at the time I hadn't been prescribed the Etoricoxib - by yet another consultant.

user666• in reply toBrychni2 years ago

As long as all your medical team knows what meds you are on they can advise best practices. Migraines are so common in non APS patients that your APL positivity could be coincidental not causation. Ask you headache specialist and rheumatologist to maybe consult together via email on how to best precede.

Brychni• in reply touser6662 years ago

I'm not sure what planet you are on but it clearly isn't the one with the UK health system - none of them talk to each other!! Rheumatology won't even know about the low platelets unless I tell them and then they want to see them on the system, but appear to need prior permission, so that on the day of the appointment it's too late. So I have requested print outs of my blood results from the GP so that I can take them with me and, I have to formally request and sign for them after seeking written permission from the queen, I mean King...only joking! 🤣 It's like pulling teeth.

I had to wait literally decades to see a migraine specialist through the NHS and that was after being refused point blank. I have been on all the crappiest drugs for prevention, with horrible side effects. I don't work because of the migraines. for a year now I have been on Ajovy injections which I think are beginning to wear off. It happens apparently. It has over all reduced number of attacks and severity but I still have that awful dead-behind-they-eyes feeling which still renders me incapable of doing anything. I sometimes wonder if that is the 'fatigue' they often ask me about.

I've tried HRT which seems to be good for some things but not the migraines and not for increasing lethargy which I'm really ashamed of. I fight it all the time. I go out every day for at least an hour , hill walking with the dog and even that is becoming a chore. My enthusiasm sometimes feels like it has left me.

I'm going to make a concerted effort with the aspirin; I often forget to take it.

user666• in reply toBrychni2 years ago

I am luckily in a system where all my providers have 100% access to all my meds, diagnosis's and appointment notes through a online charting source (epic). This has been common practice in the states for decades now. Epic was formed in 1979…

Good luck hope you are able to stay on both your meds successfully.

Star13• in reply toBrychni2 years ago

Here is a copy of the really old trial I mentioned in my original post above. It explains quite well how Migraines can be influenced by APS. Sadly it would seem that things have not moved on that far for those that don’t fit neatly into treatment brackets but we live in hope!

journals.sagepub.com/doi/ep...

StriatedCaracara2 years ago

Hi Brychni

Thanks for your post.

I'm in a similar position. I have UCTD. I have just been referred to a headache clinic. First appointment 10 minute assessment with a consultant on the phone at a surgery that is close to me but they don't do face to face.

I am on hydrochloroquine and had previously been taking soluble aspirin when bad headaches happened. Twice I have had short courses of prednisolone which altered the symptoms but did cure the problem.

I would like to understand the mechanism or reason for the pain. I have looked at the NICE guidelines and they seem to be putting headaches into three groups, tension, migraine or cluster, and then focus on applying standard drug treatments for each.

My headaches are in the region where I banged my head badly, 8 years ago so I think trauma, inflammation and maybe some recent prednisolone related changes to blood vessels, and even bone may be involved. I have found it impossible to get an MRI of my head even though happened after car accident.

Trying everything, even slight smear of volterol gel on my head, and taking glucosamine in case it is bone related.

Everyone tells me it is migraine, but I'm not 100 sure. For me I think I get a mixture of headaches in the same area.

StriatedCaracara2 years ago

nice.org.uk/guidance/cg150/...

Does not help me as I'm all over the place in the categorisation table.

But forwarding so others can can see the options available and what the outcomes of our interactions with headache clinics are likely to be.

Including a positive diagnosis..🤔..?

GinaD2 years ago

My migraines were horrible, but never attributed to this or that. My usual trigger was a bright light shining into my eyes. My wonderful eye doctor said he did not like the look of my retina. My migraines began to get progressively worse. until the migraines became predecessors of mini strokes, confirmed by brain damage revealed by MRIs. Many local docs claimed I was " making it up" when I was taken to the hospital with one side paralysis. (Tell me how to fake one side facial paralysis. I'll patent the procedure and be a millionaire within a week!)

I was finally referred (by friends who had become doctors but now lived in large cities) to a hematologist in Cincy Ohio who diagnosed me with APS. I started warfarin and the migraines stopped! No more mini strokes. Warfarin saved my life!

Since then my APS blood markers have turned negative, ( after I discovered I have Celiac and went gluten free.) but I remain on warfarin. Since I've been on warfarin for over 20 years now. I'm pretty good at staying in my INR range. And I have a "tell" when my blood becomes too thick,I remain symptom free with a very low INR.

Warfarin has a well dserved reputation with many docs who have seen, or heard descriptions, of patients who have bled out. And I must say that my tendency to not clot has been annoying should I cut my finger instead of that veggie. And I know that, given my blood's inability to clot quickly, a bad fall or an auto accident may lead to my end. But had I remained undiagnosed and untreated I know those strokes would have continued ... continued to an early, unpleasant end.

dogtail• in reply toGinaD2 years ago

Glad you had friends who could point you in the right direction. May I ask the name of the hemotologist you were referred to?

GinaD• in reply todogtail2 years ago

he has retired. Sorry. Dr. Winkelmann whose last practice was in Northern Kentucky. I now get checked by by my wonderful internist, Dr. Mustafa at Marshall Health.

dogtail• in reply toGinaD2 years ago

Thanks Gina-

WendyWoo502 years ago

I hear your frustration in this post and it’s something I believe almost all of us feel.

I was aged 11 (1978) when I had a headache. That headache never went. To some degree it remained with me forever. Mum took me everywhere and nothing was ever found. Their final Answer;

“Some people just have headaches!”

I guess it must have been in 2013 a routine rheumatology (for Sjogrens and Lupus) blood test locally showed I was Lupus Anticoagulant Positive. Only no one told me. I continued to take HRT until my next appointment at St.Thomas with Prof D’Cruz. He asked why I was still on HRT. I was confused - he said he had to repeat bloods but it looked like I had Hughes Syndrome (APS). He told me to take 75mg of aspirin each morning and stop HRT. Within weeks I realised I was headache free for the first time in 35 years.

After about a year the headaches started creeping back. In 2015 I had a blood clot on my brain - immediately I had heparin injections, after which I started on Warfarin. Soon we deduced that when my INR was less than 4 I felt dreadful and had constant debilitating headaches but when 4 or above I felt so much better.

Unfortunately no matter what I did, my INR would not stabilise. Not even after 10 days in St Thomas’s where they even kept a careful eye on everything I ate etc.

After a period of wildly swinging INR up as high as 19 and 20 I was again taken into hospital. My haematologist decided I had to come off Warfarin. We had tried Clexane but extensive bruising and lumps across my tummy as big as eggs they deemed that not a viable option.

Eventually I was put on 5mg of Apixaban every 12 hours (instead of Warfarin) that worked & I felt much better. But then the headaches and symptoms returned. After a period of intense headaches for 8 weeks my gp put me on 2mg Candesartan as well - that was a miricle. Then bam same again. It was increased to 4mg. Then the headache was gone. A year later it was back. This time for 4 months. I was literally suicidal. The pain was so intense. I couldn’t do anything. I was sent for an MRI and then to a headache consultant. He increased the Candesartan to 8mg that was a few months ago.

I’m much better now but live once again to various degrees with a daily headache.

I’m afraid it’s likely to plague me even though I remain hopeful.

APS is an awful, hidden, misunderstood condition that we all struggle to cope with. Over the years I have found reading books with someone who understands then discussing it helped me understand the condition and talking here really helped. These people understand and are so supportive. They have been angels at my worst times. Ask away. 💋 x