Hughes Syndrome, APS and recurring Light Headedness

[1818hst]

Hi everyone, Ever since my initial sroke in 2011, and two TIAs in 2012 - after which I was diagnosed with APS and am now on warfarin - I have these periods or bouts of light headedness. Its not dizziness, just an uncomfortable sensation of feeling light headed. I get quite anxious when these start. My GP and haematologist tell me that I have post traumatic stress disorder and that these are probably being triggered by anxiety - not an after effect of the warfarin or an outcome of having APS. My doctors want me to see a psychiatrist. My haematologist tells me that he does not beleive that the warfarin is causing these episodes. Have any of you had similar experiences? Thanks.

[Jade]

Hi, I am fortunate as I have not had a stroke but I often get episodes of lightheadedness. I feel its like when you had a little too much to drink (and I mean little as I cannot tolerate alcohol) and you stand up and your head just feels weird, like it is not your head. I find it a very unpleasant experience.

I believe it is APS as I have always had it. I am 50 but have only had warfarin 8 years so I dont blame warfarin.

What is your INR kept at? I am wondering if you feel worse when it is low or out of range?

Most APS patients feel better with an INR of around 3.5 to 4.

I really dont think a psychiatrist is the person you need to see though I am not doctor. it seems to me they often say this when they dont know what the problem is.

Take care, Xx

[pluto5 in reply to Jade]

I have had a number of strokes and multiple TIA's.I frequently get light headed,more so in the morning. It makes me feel awful and sometimes I am staggering about. I was put on Betahistamine for tremors too, but they seem to make me worse. I am not on warfarin. I refused that but am on dipyridamole which suits me better. The headiness makes me lose my concentration, does it you?

[MaryF Administrator]

Yes to all of above from APSnotFab, and do feel free to print out Professor Hughes;s latest blog and any of the useful papers of the HSF website. Also explain very politely, if you come up against a wall of refusal that as a last resort you will have to attend the surgery of your local MP. I have done this at times! Hopefully as suggested in previous answer, above taking somebody along with you, will also help. Best of luck, do let us know how it goes. Mary F x

[1818hst in reply to MaryF]

Thanks MaryF. I don't live in the UK and don't have the access you have. While my doctors mean well I don't think that there is a deep reservoir of expertise with APS here (Cape Town). I get the symptons aalmost daily and at times I find it alarming.

[MaryF Administrator in reply to 1818hst]

Ok did you see what I put above? Mary F x

[1818hst in reply to MaryF]

Many thanks! I just saw it. I will try it and let you know what I discover. Best.

[1818hst]

Thanks for taking the time to answer. Sometimes my heart does race when I get these symptons, but that is infrequent. I have the light headedness sensation almost daily. I live in Cape Town, and as far as I know, there are no APS Specialists here. It is not that well understood here. You're right; my haematologist feels that by keeping my INR high and at a constant level these symptons should clear.

[MaryF Administrator in reply to 1818hst]

You my do better contacting Kate Hindle by email at Hughes Syndrome Foundation but there is some detail here

: Antiphospholipid Syndrome Foundation of South Africa

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Service: Information - Education

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MEDpages Code: 271434

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Location: Randburg, Gauteng, South Africa

Street Address: Randburg, 2194 Hide Map

Mary F x

[Paleosooze]

I have these symptoms too. What sort of specialist investigates autonomic neuropathy and is there anything that can be done about it? X

[Sal0712]

I havnt had a stroke, but I too get this feeling. It feels like someone switching me off for a second, and before I have chance to fall, it's like someone reboots me and I can carry on. I too get worried when this happens, mostly as I usually have my three yr old with me. It does leave me feeling wiped out though!!

[Salty]

I have a hyperadrenergic autonomic disorder due to APS. You should have your BP and HR checked lying then standing after one, 3, 5 and 10 minutes and see if a drop in BP and/or a rise in HR is associated with your symptoms. This would suggest you may have an autonomic disorder. I am on lovenox and plavix which helped most of my APS symptoms (headaches,,etc) but not the autonomic trouble. The latter has improved with IVIG.

[1818hst in reply to Salty]

I have had a 24 and 48 hour BP monitor attached to me and everything came back as normal. Thanks for suggesting this.

[Salty]

I would still get the orthostatic BP and HRs done. This gives totally different info than the ambulatory BP monitor.

[Calico]

I get lightheaded and dizzy but believe it more due to nerves/blood vessels of the ears as I also have ringing in ears. Been tested for Menniere's but since no hearing loss, no Menniere's according to 2 ear docs.

[Salty]

Yes, a tilt table test is considered the diagnostic test of choice, but it can be more difficult to obtain. The orthostatic BP and HR is just a "poor man's tilt table test" and you can even do it yourself. If it is abnormal, ie HR increases by >30 bpm with standing and or BP drops by>20/10, it would suggest that 1818's symptoms may well be due to an autonomic disorder and it may then be easier to get the proper evaluation.

[daisy11]

Hello, when my INR is either too high or too low then I know about it because I get this strange feeling of lightheadiness, and tiredness with a sensation of burning in my head. my INR is set between 3-4.5, my ideal which I have worked out is roughly about 3.6. I have had a TIA in 2011 when I was put on Warfarin, Clodigrol (excuse my spelling) prior to this just on Aspirin and Heparin. I do get a racing heart at times and I have had all the tests etc but they still continue. Trying to explain to the doctor at hospital that I continue to have these causes me a great deal of stress. I have a self testing machine so I test at home inbetween going to hospital to see what it is and then I have a test at hospital and it is same. It has taken me years to get around APS!!!

[1818hst]

Hi, did you have the TIA while on warfarin?