INR 4 still having daily migraines

I have been having chronic migraines again, my rhuemy and Neuro are not sure why, my Lupus is quiet at the moment I am off the prednisone and methotrexate and only on plaqunil and my INR is at 4, any help would be appreciated, They want to start Botox injections, I can't take most of the drugs they offer for migraines due to side effects so this is where I am

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  • I know I always say this, but how are your levels of B12, D and Iron, no stone should be left unturned when it comes to migraines! MaryF

  • All have been checked and are good, I am on supplements for all three, very frustrated!!

  • I was on Warfarin (now on Fragmin) with an INR of around 4.0. My migraines went away but returned 7 years later. I was put on low dose Amitriptyline and that stopped my migraines. I only get them rarely now, at times of stress.

    Dave

  • Thanks but have tried Elivil bad side effects

  • Oh that's bad luck.

  • You could ask to try Fragmin injections, instead of Warfarin, that helped me too in many ways and I would never, willingly, go back onto Warfarin. Fragmin gives a more consistent anticoagulation, as it is unaffected by food or drink and doesn't need INR tests as it works on a different part of the clotting cascade.

    Dave

  • Sorry to hear this.

    I am in the same boat at the moment. Daily headache and migraines every few days and really nasty complicated ones about once a month. Like you my INR is stable. I've also got raging pulsatile tinnitus which is driving me nuts.

    My migraines did go quiet for a while but seem to have come back with a vengeance. Im seeing a Neuro who specialises in immunology on the 30th which my Rhuemy has organised. I have seen 2 different neuros in the past who were very dismissive but I've been reassured this one in well versed with APS. I will let you know what they suggest/advise.

    I've tried many different meds but nothing seems to help and they're not keen on nerve block injections due to the warfarin. I have in the past had idiopathic intracranial hypertension and this may be the cause right now for me.

    I hope you find some relief over the coming days. X

  • Look forward to hearing what you find out

    Thanks

  • This might sound rather nutty – but have you considered a food allergy or sensitivity? I went gluten-free in 2004 -by accident - and my health improved including my blood work which went from scary too boring. I was then diagnosed with celiac. Call me paranoid but since alzheimmers is so prevalent in my family that I went up to Cleveland clinic to their new department of functional medicine. Blood tests led them to believe I may have a yeast/Candida overgrowth. They put me on a rather difficult to follow diet, but after just one day my stomach seems to have settled down. Many of the precepts of functional medicine are radically different from conventional medicine – they believe that nearly all chronic diseases can be treated or cured by changing diet and lifestyle. Crazy? Perhaps. But you might investigate.

  • Please see my post about Rituxan (Rituxamab) Your story of headaches/migraines and all you've already done to try to stop them sounds a lot like mine. I'm here to say Rituxan has already made a big difference in my headaches, which has been a blessing in disguise. Nothing, absolutely nothing has given me any relief from them so far like Rituxan has. I agree all these other possibilities need to be considered, but when you've eliminated all of them, please ask your doctor about getting Rituxan infusions. I fought for 2 years to get them because I was tired of my doctors treating the symptoms and not the source of my problem (that being my APS). So far, it's been worth it. :)

  • If you can, you might try to get in with a neuro at Rowe Neurology. I personally see Dr. Van Owen and he is versed in APS. They are located in Lenexa, KS.

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