Blood clot in head

[Jennriggs]

Hi I'm Jennifer jennriggs I found out in July 2018 I have a blood clot in back on my brain on right side it's in my sinus cavity. I've been on warfarin and was told I'll be on blood thinners for life. I'm 42 yr old with a 3 yr old. I have factor V leiden mutation and lupus anticoagulant. I've been trying to study up on all I can about it. I still have blood clot it's not gotten worse and it's not gotten better. If anyone can give me information on this it would be greatly appreciated. My INR goes low alot I went to er last Saturday and it was 1.01

[HollyHeski Administrator]

So sorry you are going through this, studying is also good.

I have a clot stuck in my sub clavian artery, for the last 12 years, initally I was so frightened!! Thought it would move and cause mega stroke or get bigger - it took endless scans and time for me to trust docters to look after me!

You do need to get your INR stabalised or/and get heparin if you drop low?

I hope you have a specialist that understands factor V leiden and APS?

[MaryF Administrator]

HI, while you are reading you may like to see our charity website: ghic.world/ Over time you will find others on this forum with similar issues, we all learn from each other plus the support. I hope you feel better soon, in terms of your INR. MaryF

[Lure2]

We need a Specialist of autoimmun illnesses who works with people with Antiphospholipidsyndrom like you and me. Also we must have our sticky blood steady and properly anticoagulated, especially if we have got Lupus Anticoagulant positive, like you and me, at a rather high INR.

What is your therapeutic range today and who is in charge of your INR?

[Jennriggs in reply to Lure2]

My INR is 2.1 I get it checked in a few days a clinic just started keeping an eye on me until I go to a family doctor I just moved to different state and trying to get all new doctors. I go in August to neurologist

[Lure2 in reply to Jennriggs]

Who is in charge of your anticoagulation? They must have wanted you to be on a special range for your INR like 3.0-3.5 or.......? Most of us on Warfarin with APS need an INR of around 3.0 (at least) and some need a quite higher INR (especially with Lupus Anticoagulant positive).

As I said I need an INR around 4.0 (also keep it steady at that number) to reduce my big clottingrisques. You must see a Specialist of autoimmun illnesses who works with these issues daily!

We have found here (on this site for several years) that the Neurologists do not always "get" what APS is about ..... too sticky blood. Many diagnosed with MS (usually by a Neurologist) actually have APS.

It is very difficult to diagnose autoimmun illnesses as many of them go hand in hand (like APS, SLE, RA, Sjögrens, Thyroidosis).

It is usually a Rheumatologist or a Hematologist who knows APS best.

I suggest you read "Sticky Blood Explained" by Kay Thackray. She has got APS herself and tells about her symptoms. Even prof Hughes has recommended her book. I have it in Sweden.Also good for relatives to understand us better.

[Jennriggs in reply to Lure2]

My family physician wanted me between 2.5 and 3.5

[Jennriggs in reply to Lure2]

Can people work having this I know I get so tired and get migraines on right side.

[Lure2 in reply to Jennriggs]

Look for a Specialist of autoimmun illnesses! You have to get Heparin if your INR goes too low like Holly Hesky said. Perhaps a Specialist would higer your INR a bit and try to get i steady also.

[Jennriggs in reply to Lure2]

Thank you

[Lure2 in reply to Jennriggs]

You should have a talk with your "family physian" (is that a GP and is he knowledable of APS?) as your INR is quite too low and not steady. It is very important to avoid another "stroke" or micro-stroke to be on bloodthinners.

Someone have put you on Warfarin and that Doctor is responsible for your treatment!

[GinaD]

There is a standard list, which I'm sure you have already seen, of foods which interact with warfarin. But actually, we all metabolize foods differently, so, that list is just a starting point. I suggest keeping an obsessively detailed food, activity and INR list. With time, you will find how this or that relates to your INR status. Good luck.

[AEBURT88]

Just curious as to how you found out about the clot. What symptoms did you have if any with it being on your sinus cavity ??

[Jennriggs]

I had a bad headache on my right side for 3 days and the pain was more than I could handle so I went to er and they thought I was having a migraine and to an MRI and found the blood clot

[AEBURT88 in reply to Jennriggs]

I have had three clots, and have APS, have had 3 miscarriages, and lately I have been getting headaches on the top left side but i have also had a weird feeling behind my nose (hard to explain) kind of like a sneeze that never happens and my left nostril just hurts behind it. But we don't have insurance right now so I dont really want to go in for another bill. So I wasn't sure if there were any common symptoms with it. So sorry that happened 💜

[Jennriggs in reply to AEBURT88]

I was told if it was on my left side it controls what happens on your right side becareful with a stroke. I'm on Medicaid if it wasnt for that I might be dead. I dont like to go to doctors or hospitals

[Lure2 in reply to AEBURT88]

I see you are in the United States. Have you got a Specialist there who works with people like us with autoimmun illnesses daily. That is what you should have if you do not have it.

What anticoagulation drug have they put you on after your 3 clots? Were you positive to one or all three of the antibodies when they tested you for APS and found you positive?

Have you tried Baby-Aspirin for your headache (perhaps suggested by your Doctor who knows about your miscarriages and diagnosed you and saw your 3 clots). That is not an anticoagulation drug which you should perhaps need now, but it will start to thinn your blood a bit and perhaps make you feel better with the headache.

Look for a Specialist if you do not have one already as I doubt.

[Jennriggs in reply to Lure2]

I have one clot and I've only been to my blood doctor, family physician, and neurologist

[Lure2 in reply to Jennriggs]

You wrote you had 3 clots. It does not matter so much but the big issue is that you must look for a Specialist as that is very important for you.

This is a bloodclotting disorder but also a rheumatical autoimmun illness with too thick blood and very few Doctors know about it and that is why we have to fight for our life to get the correct Doctor who can thin our blood with the best anticoagulation drug, usually Warfarin.

You are already on Warfarin and that Doctor is in fact responsible for your anticoagulation with Warfarin now. I do not know what Medicaid is, but look for a Specialist who can give you the help you need. An INR of 1.1 says you are not anticoagulated at all. Not a wonder you get a clot and feel bad in your head.

[Jennriggs in reply to Lure2]

Medicaid is government insurance. I have bad headaches on right side all the time. I just want to sleep it takes everything in me to get up out of bed. My body aches all the time. I just want it to stop so I can have a life again. I have a 3 yr old to take care of if it wasnt for my lot older kids i wouldnt make it

[Lure2 in reply to Jennriggs]

I am sorry but your headache may probably not go away before you get a steady and higher INR. This is a wellknow subject here on this site. So many of us have the wrong Doctor and struggle and fight to get the right anticoagulation.

As i live in Sweden we have another healthcare system. But the illness is the same and the symptoms the same. I wish I could help you better. We understand how you feel. This is a fantastic site with so many members knowledable of APS.

Also try to get that book I wrote about!

[Jennriggs in reply to Lure2]

Yes I had no idea about alot of this my doctors in one state pretty much gave up on helping me so I've moved to another state its cause they didnt know much about it. I'm going to see my doctor this coming friday I'm going to talk to him

[Lure2 in reply to Jennriggs]

Do you wan to tell us in which state you now live in? Perhaps, as we have many members in the US, someone knows a Specialist in your state or near to it.

[Jennriggs in reply to Lure2]

Pulaski Virginia is where I live

[Jennriggs in reply to Lure2]

I have a question my regular family doctor tested me for lupus he said he tested ANA test that said I was negative whatis the difference between lupus and lupus anticoagulant and what test needs done for each one? I go to see a neurologist next month. I have found out I have fatty liver, high cholesterol and high triglycerides and inflammation like fibromyalgia. I want to be able to know what to talk to my neurologist about and what test I need. Thank you all

[Lure2 in reply to Jennriggs]

Lupus is another autoimmun illness and many Lupus patients also have Kardiolipinantibodies like we have in their blood.

Lupus Anticoagulant as you have tested positive to, is one of the three antibodies that are tested twice, with 12 weeks between the two tests, to get a diagnose of Antiphospholipidsyndrome.

As I have told you before you need a specialist who works with patients like us daily. Is your Family physician you talk of a Hematologist and is that also the Doctor who started you on Warfarin and suggested you should be on an INR 2.5 - 3.5? Read also that book I suggested earlier, "Sticky Blood Explained" by Kay Thackray.

It is important that you go to a Specialist who understands that this illness (neurological issues) are most probably due to our sticky blood. When we are at an INR (usually over at least 3.5 with neurological symptoms) we feel much better.

That APS-Doctor will also understand your other symptoms you mention above that perhaps are due to other organs also attacked. Try to get a high bloodpressure down if you have that.

Very few Neurolgists understand that our symptoms are due to our sticky blood. That is all I can say.

[Jennriggs in reply to Lure2]

I've been on warfarin for a year and clot hasn't dissolved

[Jennriggs in reply to Lure2]

StaClot(lupus anticoagulant) and I have factor V leiden mutation

[Lure2 in reply to Jennriggs]

Yes I know but you must have a Specialist who knows how to treat people like us. We need a steady and rather high INR. An INR of 2.5 - 3.5 may be too low for you as you also have Lupus Anticoagulant (like me) in your blood.

[Jennriggs in reply to Lure2]

I'm just now finding out about all this I had no clue i needed any specialist until now.

[Lure2 in reply to Jennriggs]

Good! You know a little more now. Also read that book, but talk to the Doctor also who is responsible for your Anticoagulation and then start looking for a Specialist! Can be difficult I know. Where do you live in America?

[Healthandcare]

Hi Jenn: I’m so sorry for what you are going through. I agree with others who responded, it is critical to keep your INR stable. I know it is inconvenient and for many unrealistic to constantly get to a lab but there are home INR monitors that are easy to use. They work very much like a diabetic glucose monitor. Here is more information and it looks like they are sometimes covered by Medicare.

diagnostics.roche.com/us/en...

Wishing you the best.

[Jennriggs in reply to Healthandcare]

Thank you I will check into that didnt know they had any INR home monitors

[KellyInTexas Administrator in reply to Jennriggs]

Jenny, hello.

You have to be very very very careful with a Roche monitor.

Dr Hughes ( one of my doctors, now retired but still very much active and lecturing) is very careful to advocate about , “ parallel testing” with a venous puncture, or vein value draw, which is the only true, or accurate measurement of the INR.

The anti phospholipid antibodies interfere with the reagents on the test strips when using the , “ finger prick” ( capillary blood) method. This can make this method unreliable.

The higher the INR, the greater the disparity between the two values, in almost all instances the finger prick value being inaccurately higher.

If your particular,” offset” is consistent, then you can use this as a guide only. It should only ever be used as a guide.

Many find it’s too inaccurate to even be used as a guide.

It does come in handy as an indicator to let you know if something is awry.

Available in the states is difficult to obtain in frequency needed to be effective for APS patients. Roche will not contract for APS patients.

[nociggy]

Hi I'm on warfarin for life too after several blood clots in my legs ,I find my inr stays stable if I don't eat too many greens or eggs ,they work as an antidote and work against the thinners ,I've cut them out of my diet now and have been stable for 12 months

[Lure2 in reply to nociggy]

Are you diagnosed with APS?

[Jennriggs in reply to Lure2]

I have been diagnosed with factor V leiden mutation and lupus anticoagulant. My blood doctor wants my lupus anticoagulant retested next month.

[Lure2 in reply to Jennriggs]

Sorry this was a question to "nociggy" as I could not find that she had APS.

It is difficult to selftest with Lupus Anticoagulant in your blood. I am triplepositive with very high titres and I do it. There is a difference between the vein-test (always lower than the fingertest) and the fingertest with the machine so we have to parallelltest some times, at a hospital lab, to know if there is always the same number (difference) between the two bloodtests. Only the vein-test will give the correct INR.

And if so, it can be possible as then you know how high your INR is in the vein when comparing it with the fingertest-number of that special day. Hope I can explain in English as it is not my language (Swedish).

How difficult it will be depends on how you manage with your greens, drugs, exercise etc and the help from your Specialist with labtests to begin with etc. America is not the easiest country to have APS I know. There are also other drugs than WIarfarin like LMW Heparin (injection daily) to take.

The most important thing is to find a Specialist of APS who works with people like us and is willing to take you as his patients and help you.

This Neurologist you are seeing in August do you know if he knows APS? We have noticed here, from several years experience, that the Neurologists do not always "get" what APS is about............too thick blood that has to be thinned.

Several people with MS actually have a diagnose of APS. They can be mixed up as APS also have many neurolocical symptoms and for us it most often has to do with our very thick and sticky blood.

Read "Sticky Blood Explained" by Kay Thackray before August and you will better understand what to ask him about and then you will see if he is also an APS-Specialist perhaps. They are very rare.

My God, this became a novel....... Good Luck!

[nociggy in reply to Lure2]

Hi no I have DVT..I've had 3 blood clots in my legs ,no body has ever tested me to ask why this keeps happening ,just prescribed warfarin for life .I'm in the UK

[Lure2 in reply to nociggy]

Hi Andrea,

Sorry about the DVT, but I read that you have stopped smoking in 2012 after doing it for 34 years if I have counted correct! That is very good!

If you like to test for our illness you can ask for a referral to take the three antibodies they test twice with 12 weeks between the tests. They take blood for Kardiolipinantibodies, Beta-2-Glycoprotein 1 and Lupus Anticoagulant.

[nociggy]

Yes I did stop smoking ..my greatest achievement ever...thank you for your advice 😊😊