INR 4 still having daily migraines - Hughes Syndrome A...

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INR 4 still having daily migraines

edgewater100 profile image
11 Replies

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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edgewater100
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11 Replies
MaryF profile image
MaryFAdministrator

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

edgewater100 profile image
edgewater100 in reply toMaryF

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

Manofmendip profile image
Manofmendip in reply toedgewater100

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

edgewater100 profile image
edgewater100 in reply toManofmendip

Thanks but have tried Elivil bad side effects

Manofmendip profile image
Manofmendip in reply toedgewater100

Oh that's bad luck.

Manofmendip profile image
Manofmendip in reply toManofmendip

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

Tinythepanda profile image
Tinythepanda

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

edgewater100 profile image
edgewater100 in reply toTinythepanda

Look forward to hearing what you find out

Thanks

GinaD profile image
GinaD

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. :)

Graeh profile image
Graeh

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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