Hello again,
I have another question to ask 🙂
Does anyone of you experience dizziness or lightheadedness?
Several times everyday I have that, often in the evening and sometimes at night.
I wonder if it is "normal" when you have APS - or if it is psychological and because of anxiety?
Regards Anjdur
I am on warfarin and clopidogrel and my inr is between 2,5-3,5...
I have had a stroke in May 2015 an a TIA in september and in january this year...
I have been battling this and other issues since 2009 - INR"S always been erratic .very well may be the unstable INR"S -going threw more testing this week with hopes of some direction and or answers -- but i don't expect a lot -- we just keep trying
I was experiencing it throughout the day for about 6 weeks, but it has stopped. I asked pretty much the same question as you some weeks back. I'm glad it has stopped, but not sure why.
When I had my last TIA I was on warfarin and my inr was 2,7.
Therefore I was put on clopidogrel as well, and my APS doctor says that my inr should not be above 3,0 because of risk of bleeding. I prefer to have my inr a bit over 3,0...
The other day my inr was 2,5 and I was terrified...
I am going to see my APS doctor this friday.
I have been getting dizzy and lightheaded recently as well. have any of you felt like you were going to pass out while sitting down or while laying down? It feels kind f like I am falling for a minute. Who knows what it is. My INR had been between 2.7 and 3.2 for the past few weeks. Any how, I hope you feel better soon!
And the same to you... 😊
Hi, you have already been given some great feedback and advice, but I will add that you must keep feeding this back to your medical team if these symptoms are not shifting or becoming unmanageable. MaryF
I will on friday when I see my APS doctor. I just wanted to know if others felt the same.
It doesn't last long when I experience it, but I get scared. Sometimes I wonder if it is anxiety...
Hi again Anjdur,
As we know on this site the APS-Specialist (a doctor who really understands this rare illness) is our No. 1 priority as to our APS.
I wonder if that Specialist you told us about who was ill one week ago - is he back now and have you met him or talked to him about your anticoagulation drugs?
It is important that you are put on an anticoagulation-drug that suits your symptoms and that you get the absolutely best Doctor you can find in Denmark.
That I wish for you!
Best wishes from Kerstin in Stockholm
I am so sorry to hear that, I wish you the best...
Hi,
I do think your "spinning" and eye-symptoms are due to a too low INR. I have read what you have written earlier. As I understand it you do not have an APS-Specialist and your GP is very kind and helpful but is also very afraid of a bleed like most doctors who do not know so well what APS stands for - too thick blood. We do not bleed but clot from APS!
Try to get a Specialist and if that is absolutely impossible ask you GP to raise the INR. We need a INR around 3.5 especially when we have neurological issues. The Neurologists do not "get" that our balance-problems are caused by microembolies (very tiny). The INR should also remain in its therapeutic range to avoid further microembolies. If you get too low INR you should also have a Fragmin-shot. Is it impossible to selftest?
I also had exstremely high bloodpressure before Warfarin. See to it that you get some bloodpressure-drug that will get it down to normal. Especially as you at present are on warfarin.
Best wishes from Kerstin in Stockholm
Hi, dont know much about correlation betweeen APS/ INR range and lightheadedness.
If u feel it could be due to anxiety, then it could well be, esp. if you find yourself hyperventilating at the time.
Make sure u do cover the basics too, eg ensuring your standing and lying BP is ok, your ECG is ok, and routine bloods like hemoglobin, iron levels, thyroid function test and sugar levels are ok and i think it might be worth seeking an ENT opinion too. Best wishes xx
Hi Anjdur,
I do not think your symptoms are caused by anxiety. Many members here have heard non-experienced doctors say "it is only in your head". It is not I can tell you.
Kerstin
I have experienced lightheadedness ever since I was diagnosed with APS, about three years ago. Now, the only way I can get rid of it is by lying down. As I lost a leg following a blood clot I am confined to a wheelchair. Most healthy people have to pay money to feel drunk - I don't need to.
As for anticoagulants I was changed from Warfarin to Dabigatran four weeks ago but this has not made any apparent difference.
It raises the subject of driving. I gave up driving five years ago as I did not consider myself safe behind the wheel of a car. I wonder how many others with APS continue to drive when they should really not do so. Food for thought.
Billy Bean.
May I ask you why you were changed to Dabigatran? When you were on Warfarin did you have an APS-Specialist and did he/she put you on a therapeutic level of Warfarin high enough to have any effect on you symptoms? Did you also had eye-issues like doublevision, Auras or loosing the vision on one eye for a short time? Also Vertigo (spinning) of course.
I am very interested to hear your answer.
Best wishes from Kerstin in Stockholm
I had suggested changing my anticoagulation to one of these new drugs to my APS specialist but in the days before they were approved and she declined to do so. The change to Dabigatran was based on the fact that it (like Warfarin) is reversible in the event of a traumatic bleed. I could not get my INR to stabilise under Warfarin.
I occasionally get double vision and vertigo symptoms and now my Rheumatoid Arthritis is really taking hold with painful swollen joints and limited movement.
At 68 I'm chasing you but consider that my symptoms preclude safe driving but I wish you well.
Best wishes Kirstin
Billy Bean.
I know I'm late in coming to this thread, but you should talk to your doctor about dysautonomia, specifically POTS. Â I have APS, and POTS. Â Here is a research paper written about the association of APS and POTS. Â Dr Hugh's is a co-author: Â ncbi.nlm.nih.gov/pubmed/245...
Also here is a link to look into POTS: Â dysautonomiainternational.org/ Â OrÂ
dysautonomiainternational.o...
Basically, POTS means blood is not getting to your head when you stand. Â This creates dizziness and fainting. Â
Hi, just been reading this and was wondering if you have ear problems as well? My ear feels like it's got trapped water in it but instead of going deaf it is ultra sensitive to sound. Going to see my GP next week as it's driving me crazy. I take warfarin and my inr is 2-3 and I am in range. Hope you managed to get some answers.
You need to have an APS-Specialist who understands that your ear-problems probably are cased by APS. I can tell you that I was remitted by my Specialist to a well-known Specialist of Balance-issues and he told me after a lot of exams etc etc that I most certainly had microembolies, as the vessels up in the brain are so very tiny and we sometimes with this illness have microembolies and they are usually not seen on a normal Scan of today.
We also need a higher INR of around 3.5 or even a bit higher to get rid of the symptoms. When you are properly anticoagulated and have seen a Specialist and not your GP you will feel better I am sure. I also had balance-problem,problmes with my eyes and severe Vertigo. After Warfarin I was ok.
 Read "Sticky Blood Explained" by Kay Thackray. It is a good book for us.
Best wishes from Kerstin in Stockholm
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What a waste of time my appointment at Kings was
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