I have been living with the diagnosis of APS since 2017 after a mini-stroke in my left eye, which fortunately left no damage. Recently, I switched from aspirin to warfarin after possibly experiencing another mini-stroke, though this hasn't been confirmed by tests.
Sometimes, I feel dizzy, short of breath, or have chest pain, which makes me extremely paranoid. I often think I'm having a heart attack or a stroke, leading to what I believe are panic attacks.
I want to learn how to live with APS without overestimating or underestimating the condition and to seek medical attention when necessary.
How do you manage this?
I am considering getting help from a mental health professional as I feel this constant anxiety is not good for my health.
Any advice would be appreciated.
Thank you!
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Alessandra001
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It is a good idea to get some help for your stress management as you come to terms with things, it will more than likely help you a lot as the mental self can greatly affect the physical health, please let us know how you are getting on. MaryF
I was diagnosed in 2000 and have been on warfarin ever since . Your concern resonates with me as prior to my diagnosis I was dismissing some symptoms as "panic attacks." Once the doctors told me that those panic attacks were actually mini strokes or other issues due to APS, I was very nervous about how I should react should I get one of those feelings again. I explained my concern and confusion to one doctor. She said one thing I might try to help distinguish a real APS symptom from an emotional fear, would be to check my balance by standing on 1 foot, and then the other, and also by closing my eyes, and trying to touch my nose with one finger on one hand, and then the other. She told me if I can accomplish both of those things it was probably not a brain circulatory issue. And having that ritual to go through did help a lot.
I have APS and have been on Warfarin for around thirty years. If you can keep your INR within the range prescribed by your consultant , then you can pretty well allay all your fears regarding further problems.
I had a PE before being diagnosed with APS and in the early days I had numerous problems with my INR - too high resulting in haematuria and melena and too low resulting in numerous DVT's. These problems came about due to my INR levels being volatile and the three month check offered by the NHS not being often enough ( I experienced INR;s of less than 1.5 and greater than 10)
The only way I got peace of mind was to purchase my own meter and check myself once a week and adjust my dose accordingly and supplement this with a 13 week check with the NHS.
I have chest pain as a frequent and sometimes severe symptom. It is totally understandable that you can feel stressed and panicky about it. I once asked my GP when I should seek help with it. He said if it was more severe than normal, if there was a difference in the type of pain or if I just felt particularly worried. I found that helpful. I think a key skill is managing feelings of stress , so that you can think more clearly and so that it doesn't make things worse. There are lots of effective techniques that are easy to learn and practice. Lots of useful stuff on YouTube. I like Therapy in Nutshell videos. That will be easy to access as there maybe a wait for mental health support services. Also havening is simple and easy to do.
You must learn more about APS. You must get a Specialist of APS the works with autoimmun illnesses every day. That is exstremely important. I have had a lot of neurological symptoms here i Stockholm . Started in 2003 with TIAs in the brain.
It is important that you do not think you need a mental health professional. It is APS. "Read Sticky blood explained" by Kay Thackray.
It is difficult with this illness to get a Specialist who knows APS because it is so rare and very, very few Doctors understands what it is, but that is what you must do.
I have been on this site for several years earlier and read so many persons stories and that they think they are going crazy etc.
Learn as much as you can and stay on this site. I am too old now and will not write more but sometimes I read about people like you and then I know that so many of us have wondered if there is a mental problem involved. It is not. It is APS and when you get a Specialist and Warfarin at the correct INR-level (3.5-4 I have) and have got your antibodies checked and your titres etc, you will feel better and the microembolies or microclots will almost stop.
I live in Stockholm and have read 4 books from prof Graham Hughes and some of Kay Thackray.
Keep going and give a book also to your family to read so they understand that you are not going crazy. Keep strong! You are not going crazy! It is APS.
I could not agree more with Kerstin. Stress, possibly. But having as much knowledge and therefore education and proper management will help alleviate stress.
alessandra, panic attacks can actually be a symptom of the brain not getting quite enough blood supply/ oxygen.
It can be a lot of things actually! ( remember, we are not medical trained, we are simply “expert patients,so can only share our own personal experience having had this disease for some time and can share with you what our top in the expert field specialists have said/ shared/ and done / and with what results.)
Before I was diagnosed, I was having episodes of missing time, and racing heart beats. ( floating feelings)- I also felt like I was being dropped from an elevator very quickly- or… ocean waves were cresting from my belly then instantly rising up and crashing out from my head.. ( others describe it as roller coaster rides- down the decline part- tummy drop away) - I was diagnosed with dysautonomia, and gastroparesis. I was in and out of abdominal surgeries.
I was sent also to a neurologist for the dysautonomia, who immediately recognized my neurological issues and heart dysrythmia as seizures. He did 30 min EEG, and it was abnormal. So he did a 72 hour one. I have temporal lobe epilepsy. I had no idea. It turns out it’s micro clotting- higher prevalece in APS by 10 fold than other temporal lobe epeliptic patients. ( of idiopathic causes.)
Temporal lobe epilepsy causes feelings of “pending doom” - I did not have that- but I can see the racing strand pounding heart beat and drop your stomach out feeling can be mistaken for that- it’s just a really weird feeling. I would get ( and still can if inr gets low / or fXa now) strand olfactory auras- and feel like I’m detaching from my body- and within 5 seconds a seizure will hit. I can’t speak- and I stare off for 20 seconds or so.
I could have written this! I have had a diagnosis of APS for over 20 years, high triple p, diagnosed after multiple miscarriages. I have seen a rheumatologist and hematologist, who have instructed me to take a baby aspirin every night. Can I ask you what were your symptoms of a mini stroke in your eye? I have ocular migraines, affecting both eyes. Last month, the vision in only my right eye was weird, like the bottom half I was looking through water. My Dr instructed me to go to the hospital. CT, MRI, MRA, EKG Ultrasound, and many many neuro tests (over 3 day hospital stay) were all normal. They still diagnosed me with a TIA. I am now a complete nervous wreck, feel dizzy, short of breath, chest pain, etc... I am terrified of something happening again, and am also thinking about seeking therapy.
I do hope you have got a Specialist for your triple positive APS with high titres? That is a must!
Try to learn as much as possible of this very very rare illness as so few Doctors know what it is. A Hematologist usually know a lot and a Specialist of Rheumatology
Good Luck. I am om Warfarin which has helped med a lot from TIAs and micro embolies etc.
Also about your eye. It could be Amaurosis fugax which I had and they said I should start Warfarin as it could be a clot. A baby Aspirin for your APS sounds the wrong medication to me but I am not a Doctor only know a lot about this illness as i have also had it for over 20 years now.
Hello. It was the fact that I was experiencing problems with my eyes that I went on to be finally diagnosed correctly with triple positive PAS. I had been experiencing a whole slew of other physical problems when I asked my doctor for a referral to an ophthalmologist. I was having problems seeing through the centre of my eyes. Sometimes there was a starburst effect, other times it was complete blackness with me only being able to see from the side of my eyes. The ophthalmologist saw nothing wrong with my eyes and said I probably had a brain tumour. I had an enhanced MRI that showed no brain tumour, but scarring from three major strokes. I didn’t even know that I had these strokes because they were “atypical “ in their presentation. The eye effects were from the dozens of min stokes I was having. I was tested for blood thickness and put on Warfarin while I waited to see a vascular specialist. From the testing that doctor did, I learned that my right carotid artery was 90% blocked, and my left was blocked 30%.
What was supposed to be a simple right carotid endarterectomy 3-4 hour surgery when the doctor cut in, turned into a 7 hour surgery because I needed a graft where the artery had ballooned out to the point that a single particle of plaque could have left me severely brain damaged. ( The surgeon was not amused when before they put me under, I told him that things were going to be worse than he thought!)
It’s many years later, and although I didn’t end up with any paralysis from the strokes, I am now experiencing many bowel issues from nerve damage caused by those initial strokes. I also have some aphasia that is worse when I’m overly tired or stressed. My balance is quite bad and I have nerve damage that is affecting my hearing.
I hope that I am not scaring you, but if you think something is wrong ask for another opinion. You might have to get pushy about it, but you have to fight for your self.
My psychologist has become very sought after, because she is so educated now about APS. She has connections in Ontario, Canada where I live to get to the right people. I’m seeing her not because of the ASP, but due to a major depressive mood disorder. She helped me through some very tough times with each additional problem that arose from having APS. Seeing a therapist could help even if just learning how to overcome the fear and anxiety attacks. I wish you the best.
Yes, there are a lot of different severe neurological symptoms incl eye, ear and brain from this curious illness we have for some of us, not all.
I wonder if you did not have help with Warfarin? It must sometimes be kept on a rather high level all the time (3.5-4.0 in INR the Hematologist has put me on). I am triple positive with very high titres all the time.
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