I was diagnosed 5 years ago with Hughes Syndrome, Sjogren's and Hypothyroidism. I take warfarin and aspirin daily. Although this has helped I still suffer from from chronic headaches and migraines. I was referred to a neurologist who has no other patients with my condition. She doesn't seem to know much about it. Her advice is to put me on a migraine preventative drug. The 4 she suggested are: 1) Propranolol LA 2) Venlafaxine 3) Sodium Valporate 4) Candarsarten.
I am very sensitive to drugs and in the past the other migraine preventative drugs reacted badly with me.
Has any APS sufferers had any success with these drugs? It would help to know if they have helped.
I am waiting to see Dr Kaul next month for his advice before I agree to try one of them.
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AvsG
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Thank you so much for this information! This is most helpful 😊
Propranolol did not help my headaches at all. It also gave me terrible hot flashes and I gained weight on it. I no longer take it. I was recently approved to take the new drug Amovig for migraines. I am no longer able to take any of the triptans because of my APS
I will mention this to my doctor as I take Relpax (eletriptan) for migraine 😊
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I used to take Relpax for treatment of migraines. It isn’t a preventative though. Relpax used to work really well for me and then my migraines suddenly started getting worse and when my doctor realized I have APS he wanted me off of it and now I have tramadol for the migraines. Propranolol is what I used to take for a preventative. Magnesium also helps as a preventative which you dont need prescription for. I am looking forward to starting my Amovig injections because I have heard positive things about it helping people who have chronic migraines. Mine are chronic. Yes you should talk to your doctor about weather he thinks triptans are safe with APS. My neurologist seemed to think they are not.
I do travel to the UK every now and then for consults with Profs Dr Hughes/ Natasha Jordan as well as Hannah Cohen.
Professor Cohen sent me to see Prof Toby Richards, Vascular Surgeon, to evaluate my vascular issues. ( I keep clotting with the greatest of ease. 8 DVT’s new in the last 20 months now.)
I asked him about migraines...and why it still happens when INR could be in target range?
He said, “ That would be down to your dodgy blood!”
So sorry to hear about your migraines. I started on warfarin in 1995 after a stroke at 45 and was on a high daily dose and had to attend the warfarin clinic once a week and sometimes up to three times a week! frequently had to take heparin injections. Then in April this year my haematologist put me on 20 mg rivaroxaban. So much easier and no trips to the clinic!! From a young age I suffered from migraines they subsided after the age of 60. I do get headaches but try to get some fresh air before I take paracetamol. The less tablets one uses the better for your health. Sometimes a weak cup of tea with some biscuits can help too. All these strong painkillers do damage your kidneys so please try some simple methods before taking the strong stuff. Hope you’ll find a way to cope with your pain. Kind regards Hedwig
Thank you Hedwig. I am trying to avoid taking any more drugs. Unfortunately I cannot function when my headaches are severe. I'm hoping Dr Kaul can approve something that may agree with me. I did not have much confidence in the Neurologist and her lack of knowledge of APS 😊
I have found that those of us with APS often have to educate our doctors about APS. Doctors in the US are just now starting to pay attention to this disease and understanding more about it. Back in 2004 when I was diagnosed, much less was known about it. I was only considered “borderline” then. Now I am strongly positive.
Really sorry but I don’t have any experience of these drugs and I’m not on warfarin anymore stopped over 4 years ago and inject tinzaparin, tried to go back to warfarin earlier this year but no luck. I have annual rituximab which helps me for a bit with headaches.
I’ve found that rheumatologists understand them and the problems they cause but neurologists not so much.
Hope you get some results once you decide which med to go for.
My late father was put on propanalol for blood pressure and the migraines he had suffered for 70+ years disappeared. I was still getting some despite the warfarin and so my GP prescribed them and I only have the odd headache now if my INR is too low or I have a stiff neck. But what works for one doesn't always work for another. See what your consultant advises.
I didn’t want to take medication for my migraines headache/squiggly flashing lights 😊 my headache always comes the day after the squiggly eyes I take a paracetamol but try to avoid taking anything if I can
I have had migraine since I was around 8 years old and I am almost 54 now - I have tried most things but I can truly say my life changed for the better when I started with Topiramate in 2006. I started on a low dose and used 100mg per day for quite a few years. Then the dose was turned up and I got even better result and I have now used maximum dose, 400mg (200 morning, 200 night) for some years. I still have migraine attacks, but they are much milder and last shorter - no more 36 hours attacks! I take Zolmitriptan when I feel an attack coming and the attack will be over in a couple of hours. I don’t know why you are not allowed to use triptans, that seems a bit overcausious - I have APS, have had multiple DVTs, one PE (triple positive APS blood tests) and I am currently on Arixtra injections - in addition to a very long list of other health issues. Hope you get your migraine sorted, I often say that migraine is my most disabling condition - despite everything else I have. Good luck!
Hi Helene, I use Relpax (eletriptan) when migraine is threatning. I'm hoping to find a preventative drug that will reduce these attacks. I'm glad that Topiramate is helping you 😊
You should probably also have a scan if you haven't already, and see a headache specialist if possible, to rule out cervicogenic headache, or any other cause.
I also tried Propranolol and had a terrible reaction to just one tablet so I wouldn't recommend it.
Thank you Frodo, the Neurologist is refusing to send me for a scan despite Prof Hughes letter last year advising it. I will have to persuade my APS doctor. I am worried about the side affects of these drugs as previous similar ones did not agree with me 😊
I hope you can get some help with this, and perhaps think of using one of our recommended specialists. Do also make sure your Thyroid and B12 levels are checked both if low can cause extra headaches. We usually suggest B12, D, Thyroid and Iron are all looked at in addition to the usual tests done regarding Hughes Syndrome/APS. My son had no relief from migraines with Propranolol, only an allergic reaction over time and more migraines. However as a family our drug reactions can be quite spectacular. MaryF
Hi Mary, I have an appointment with Dr Kaul next month so hopefully he can advise me. Until then, I am not willing to take any of these drugs as the Neurologist had very little knowledge of APS 😊
I had migraines most of my life with auras. When diagnosed with APS new migraine symptoms came along with mini seizures.
My neurologist put me on Generic Topamax. It not only completely eliminated the migraines and the symptoms, but I have now been migraine free for almost 4 years.
Not everyone can take Topamax. It has some ugly side affects in some people. I’ve been lucky with it even though I’ve still had to back off my dose a bit. But I had to take a lot more than has been recommended here because of the seizures.
I started out at 50 mg both am and pm and worked up to 150 am and pm. But my extremities were “falling asleep” (going numb) very easily. Once the seizures were under control, I started backing off 50 mg at a time. Now I’m at 50 am and 100 pm. This elliminated the numbing of my arms and legs and still kept the seizures under control.
I take propranolol and have done for several years for migraine prevention, I did have to taper the dose down as my heart rate kept dropping a bit too low into the high 40’s so there was a risk of heart block so I now take the lowest possible dose to control my symptoms. Which is 20mgs AM and 10mgs PM and this overall appears to control things. I do get some breakthrough migraines and take naratriptan for these.
Incidentally I have just had a major breakthrough with the migraines that I was waking up with in the night and most mornings....... I have changed to a proper feather pillow from a polyester one and oh my goodness!!! It’s amazing! Touch wood since using this I have not once woken with a severe migraine/headache! And I am so glad to have trialled this 2 wks before I see neuro A’s goodness knows what I could have ended up on when just a new pillow has helped! And it’s the most comfy thing I’ve ever laid on and cannot wait to put my head on it every night!
I am also a migraine sufferer. Warfarin was like a Godsend to me. I went from 2 to 3 migraines a week to zero. However, If my PT/INR falls below 2.8 I get a headache. Not necessarily a migraine, but I can definitely tell when it's too low. I'm best with it at 3.0 to 3.2. Maybe you can try a higher level of warfarin and see if it helps. At first my doctor was not comfortable with my level so high but after reading a lot of the posts on this wonderful site, I convinced him to let me go up and stay at a higher level. Im still kind of new to all of this and I'm just sharing my experience. I hope it helps you, God Bless you and take care.
I agree with you that anticoagulation helps with our illness APS. We have too thick blood that has to be steadily and properly thinned and we need help from a Specialist of autoimmun illnesses who knows what we are talking of.
All my neurological symptoms were gone after Warfarin with an INR over 3.5. Cardiologist wants me on an INR of 4.0.
As a matter of fact my answer was meant for Pepper who has a much lower INR than you.
An INR of 4.5 is rather high. Are you stable on an INR of 3.5 - 4.5. I mean if you test often enough to be sure you are between those figures? Is it ok with your Doctor who is responsible for you anticoagulation that you go that high as 4.5?
Hi Kerstin, my Coaguchek INR reads about 0.8 higher than a veinous sample done in the lab. I check this every 3/4 months when I have my hospital appointments. My Coaguchek machine was checked last year and it is working fine. Dr Baines my APS doctor in Scotland reckons I could have the Lupus antibody which would cause my Coaguchek to give higher readings. Prof Hughes and Dr Baines are not concerned as the difference is consistent and checked regularly. I self test about 3 times a week if all is going well. I feel so much safer self testing and managing my warfarin 🙂
Something interesting to look at is mast cell activation syndrome.
I also cannpersist with the migraines when my INR is in my target range of 4.0-4.5
This is aging the interest of specialists only in the last few years. ( UK and USA.) USA specialists:
1. Dr Jill Schofield - trained with Dr Hughes briefly
2. dr Lawrence Afrin- Book: Never Bet Against Occam
Heparins are produced in these cells for example- and histimes/
It’s basically an immune response / allergic reaction - but a bit severe . It’s just that science is now explains it. Auto immune patients of course are at greater risk for extreme reactions/ complications.
The general population knows that red wine can trigger a migraine in some people. Yes! This is an example the a MCAS response. Also... hard / aged cheese, and chocolate. Migraine suffered will have studied that. Same reasons: MCAS. Benedryl ( dye free) will help- an anti histime...
That’s just the tip of the ice berg.
Brain is an organ involved in MCAD - ( migraines for starters)
Asthma ( lungs) are another organ involved and the GI tract another.
I’d google a low histamine diet. The idea is only fresh foods - as anything ages it puts off more more histimine. Freeze or consume that very day.
No citrus, absolutely no pineapple.
No wheat. ( I
No fermented foods- no vinegars. ( no beer.)!
Pretty much no nuts.
I’ve got to get a child out of the door to school- if you need a link- let me know- remind me- I’ll give to you. This has helped me. Ask your neuro. The link is very academic.
I’ve done better with this diet. It finally makes sense now as to the ,”why”. It’s about the histine issues.
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Help with migraine!!!! Please help!
