Sticky Blood-Hughes Syndrome Support

Hey, need advice

Hey I am getting very upset. My levels are very low. I am only at a 1.5. I am currently taking 5 cumadin tabs a day. They put me on topomax. It is ususally given to seizure patients. It was given to me to try to prevent the terrible migraines before they started. I am going on like 2 months with these very low levels. i'm scared that i will be heading for transfusions soon. maybe the medicine interfering? I let my doctor know that it was a possibility. I am getting kind of scared. anyone have any advice? ive had a mini stroke before and im scared to have another one with my blood being so thick!!Please help!!

9 Replies

I to take topomax and it has never bothered my inr, but we are all different. I also take 17.5mg of warfarin daily.. What is a mini stroke? I have had a heart attack and 2 strokes, but i never heard of a mini stroke. Do mini strokes show up on the cat scan or mri? Why is it called a mini stroke?


Hi, Renae.

A "mini-stroke" usually refers to an attack"very often caused by a smaller blood clot near or on the brain, similar to full blown strokes.

The effects are similar, but the severity is considerably smaller, usually passing with little noticeable effects.(unlike the full on ones).

An MRI is the usual type of scan done to find these or traces of past ones, as they leave behind traces of where they have been sited.

Hope this helps.

Wayne L



Who is managing your INR and your APS? You need to see a Dr who knows about it as an INR of 1.5 is not theraputic in APS and I am not surprised that you are getting symptoms such as migraines. A lot of APS patients need to have an INR around 3.5 - 4.0. My gusess is that you are not being given enough Warfarin to keep your INR at a theraputic level.

Where are you? If you are in the UK then a referal to St. Thomas's or a private consultation with Prof Hughes, at The London Lupus Centre would be a good idea.

Best wishes and good luck.



When I was first diagnosed with APS I was described on the same day by various doctors (once while I occupied the same treatment bed) as having; a stroke, a TIA, and a mini stroke. Technically Rene, a mini-stroke resolves quickly but leaves MRI evidence whereas a TIA resolves quickly and leaves no evidence.

After sitting through the controversy engendered by the impossibility of a 45 year old active woman with low BP and excellent lipid levels having anything even related to a stroke, and then seeing the MRI of my dark brain covered with dozens of spider-weby things which the neurologist tole me were the remains of "strokes and mini strokes" I conclude: the diagnostic difference among these 3 is in the eye of the health care beholder. Their going to see and diagnose what they want/expect to see.

Echos from me about seeing another doctor. 1.5 is, by definition, not working if you are still having symptoms. I take. 7.5 mgs for 4 days, then 5mg on the 5th day (I keep a careful chart.) And my hematologist (I am now one of 2 APS patients) thinks I take a huge dose. We're all different. And us APS patients are waaaaay different then the a fib patients who take warfarin because they have a sticky spot in their circulatory system. We have sticky blood so the road to a stable, therapeutic INR is fraught with complications that just do not exist for the "average" warfarin patient.

And after reviewing your post again -- coumadin comes in various strengths so a better understanding of how much you are taking relates to how strong the tablets are. On my 75 mg day I take 1 5mg and 1 2.5. On the 10 day I take 2 5mgs. How many mgs are you taking a day?


Lots of good replies and advice going on under here, also informing myself further. I do hope your team assess you and help you more, please keep us informed. Mary F x


My headache started with my second stroke in December of '02. After trying numerous pain reliefs, we finally found that Percocet would knock the level down (no, it NEVER really goes away). They started me on topomax to try to reduce the amount of Percocet I was having to take (and yes it worked) it did not seem to affect my INR at all. One of the few things I found that hasn'

A word of warning from someone who lives in a hot climate: heed the warnings about Topomax not allowing your body to shed heat! I have a broken "body thermometer" from one or more of my strokes, and living in the desert I have overheated myself a couple times, once to a dangerous level. I was not perspiring to release the heat, it was about 117F/47C outside at the time. Any time it gets over about 90F/32C you should not stray far from a way to cool your body (AC, cool shower).


Why doesn't your doc increase you warfarin dosage? That's what mine would do. I would be put on 6 mg or 7.5 mg. Then retested a week later.


I figured that out here in Las vegas nv..


in Holland sometimes marcoumar (fenprocoumon )is prescribed when the regular coagulation is not stable enough.


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