Unsolved mystery.....: Hi all, I've... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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Unsolved mystery.....

jaymacz28
jaymacz28

Hi all, I've been recently dealing with some weird issues, and I am trying to figure out if it's due to my APS or something else. I figured if anyone can relate, it will be here...

Just a background first...I was diagnosed with APS the summer of 2016 following a branch retinal occlusion in my right eye. It left me with limited vision in that eye and I was put on Rivoraxiban 10mg. This is not my first autoimmune disorder as I was diagnosed with hashimoto's in 2014. Everything was ok for a few months, but then I started getting temporary vision loss in my eyes lasting anywhere from seconds to minutes. I brought it to the attention of my GP and he said that I was already on a blood thinner so it couldn't be due to APS. Well, unfortunately he was wrong. The episodes of vision loss became more frequent and at the end of May last year I had a stroke. There was a little bit of brain damage but they said because I was 34, I shouldn't have any long term effects from the stroke. I spent a week in the hospital and a day before I was to be sent home they did an echo test which revealed a massive blood clot on one of my heart valves. I was transferred to another hospital because they figured they would have to replace the heart valve. Before resorting to open heart surgery they first tried to dissolve it with blood thinner through IV. Fortunately the blood thinner worked and I was able to make a full recovery. I was released and put on Warfarin (INR 2-3) and Plaquenil.

Since then I have had monthly INR checks at the lab and it has fluctuated between 2.5-3. For the most part I have been living a normal life, eating a good diet, no alcohol and making sure I take my meds.

Around December 2017, I randomly started getting these weird feelings. It's hard to explain, but its almost like a brief feeling a deja vu, or like that feeling you get when you see a cop while speeding, or finished working all day and realized you did it all wrong...I know it sounds silly, but is that gut sinking, flushing feeling. It just comes out of nowhere and lasts seconds. Its usually followed by a feeling a detachment of de-realization. It's just...weird. It has only occurred a handful of times but after it happens I feel off for the rest of the day.

I brought it up to my doctor and he sent me to talk to a psychiatrist for anxiety. The psychiatrist did some tests and said these feelings could be mini anxiety attacks due to post trauma. I asked about if they could be TIA's and she couldn't give me a yes or no answer. The doctor said that is might pass with time, and sent me home with some literature on dealing with anxiety.

This may be the case, but my gut feeling tells me that its not anxiety. I am normally a very upbeat, positive person and I try to stay busy. These feelings are completely random and I can go months between them. But its the same feeling every time it happens. I am just frustrated and looking for someone that might be able to shed some light on this matter. Sorry for the novel, but that's my story.

Thanks in advance....

21 Replies

Hi I experienced something similar, vision loss but in left eye, leaky heart valves and a stroke. This might be different feelings to you but I started experiencing strange feelings of de ja vous, but I always used to have a strange taste in my mouth seconds before, the feelings would last on & off for one day, sometime just a few times during that day, then none for a few weeks. They would leave me exhausted . my GP could never tell me what it was, but I mentioned it to my APS consultant, he sent me for epilepsy tests & it came back I have temporal lobe epilepsy which he said can be part of APS. I don’t know if you are under a APS consultant or if you have discussed it with them but It would be worth mentioning it to them . Hope you find out what it is.

jetjetjet
jetjetjet in reply to Lind8

I have similar sessions as all above BUT Linda what caught my eye was you said you had a strange taste in mouth would you describe it as a metal taste ?? kinda like if you have ever had a metal filling in teeth ?? that is the way i would best describe it and i would have weird feelings afterwards AND Jay i have those feelings you mentioned { I am hyper } and even at my age i feel like i am coming out of my skin at times !! and i also have a HUGE problem with severe erratic INR'S - I can go from a 2.4 on Tuesday and that Friday be a 9.1 . I am an APS triple positive primary male . with many other dia. problems also to contend with , 25 to be exact ,and most all directly related or connected to APS . However most of my doc's say it isn't anxiety ?? so i think we share some of the same feelings-- we do have alike feelings and same problems BUT saying that we are all different though and what works for one may not work for another . i was loaded with blood clots in 2009 - both lungs - left groin - left leg - neck and under left arm pit. i wasn't expected to make it the more they found the more bleak it looked .i will say the INR can in my opinion have an effect in some of us . Panda I can't us the finger test machines as i am LA positive and with my big INR problems it isn't going to work for me . i test every three days in lab, and i live close to hosp. and needles don't bother me and they may not adjust my anti's every time i test my blood but because i can just sky rocket out of site OR plunge down so low so bad we just have to keep a very close eye on where i am , very seldom do i go even over three days -- never over a week though. it is just to dangerous for me and most of the doc's and specialists I see agree ,and there are many of them . here with any questions and Thanks for sharing

Lind8
Lind8 in reply to jetjetjet

Hi yes it is a metallic taste, then few second later get very strong feeling of deja vou, everything feelings dream like & have a scared feeling even though nothing to make me feel afraid. I am on wafarin running INR 3.5to 4 but never stable. So inject when below 2.5 to stop TIAS & take carbamazepine for my epilepsy which has worked really well for me. Hope this helps

Lind8
Lind8 in reply to Lind8

I meant to say feeling only lasts a couple of mins at most then disappears.

jetjetjet
jetjetjet in reply to Lind8

Yes exactly - I call it my out of body experience !! -- like i could stand up from my recliner chair and turn around and see myself sitting there !!!! i inject Enox when i drop below 2.0 - 120 ml for 4 or 5 days depending on my next INR and if i get back up high enough > Where are you from Linda ?? I am in NH Concord area Thanks for the reply

Lind8
Lind8 in reply to jetjetjet

I live in the U.K., it does sound like you have the same thing, the next day I could sleep all day. I know absences would come on more if I got overtired or drank alcohol. It was difficult as I knew something wasn’t right but when I tried to explain to GP he said it was just one of those things .. but Heamotologist knew straight away what it was as soon as I said about metallic taste before it happens & brain scans confirmed it. I would go & see your consultant & explain symptoms & order they happen & at least they can arrange a scan to let you know for sure & get you on the right meds as mine interact with my wafarin ( but that’s a whole new different story)

let me know how you get on & hope your problem is solved.

Also I don’t know if you drive, initially I did lose my driving license for 12 months, in U.K. you have to be free of absences for a year before you can get it back, I don’t know if it’s the same where you live but worth being aware of.

KellyInTexas
KellyInTexasAdministrator in reply to Lind8

Really sounds like temporal lobe epilepsy with a olifactory variant.

I do not have an anxious feeling- I’m lucky this way- but these seizures hit the “old dinasaour brain” - all autonomic responses- can involve the amygdala and hippocampus- producing the fight or flight response. ( a bit of an anxious feeling.)

My response to it felt like a ,”rising sensation” like an elevator floor had dropped out from under me a bit.

My EEG picked seizures up at the 4 th region - probe sensor 4 - behind right ear- deep in temporal lobe.

I am a triple positive APS patient (since 2012) and I am in range 2-3 and my specialist was on of Dr. Hughes' proteges. APS patients aren't different each APS patient is different - I have been ok (knock on wood) in my range - it could be that jaymacz needs to reevaluated and see where it takes him.

HollyHeski
HollyHeskiAdministrator

Hi, it sounds to me that you need to see your APS specialist, hopefully you have one?

Having had a stroke your INR should be between 3-4. I always believe we know our own bodies and agree with you its not anxiety.

I have similar episodes but mine relate to stenosis in my sub-clavian arteries causing what they call sub clavian steal syndrome. Which is mainly controlled by keeping my blood thin.

I don't get the metallic taste in my mouth, but I can tell when one of these sinking feelings are about to start. My mind kind of goes off into a daydream, then comes the weird flushing deja vu feeling and then its over and I feel fine. It seems to also come in clusters...it'll happen for a few days straight off and on, then I may not have another one for months. I see a neurologist in October so I'm hoping they might have an idea of what is going on. One thing I do find though, is if I am busy and my mind is stimulated, I rarely have these problems. It only seems to happen when I am bored. I sometimes wonder if it is thought provoked, but then that may fall into the anxiety category. Like I said, it's a real mystery. When I was first diagnosed with APS two years ago I never had these symptoms. I only started last December and has been on an off since then.

KellyInTexas
KellyInTexasAdministrator

Hey...

Ok. We need to definitely talk.

Wow.

I can almost certainly tell you two things.

1. You are classic for temporal lobe epilepsy. I’ll give you stats on that. ( I have them.). I had NO idea I was having them, by the way. Your symptoms are classic.

2. Your INR is way too low.

You can pm me.

Why only 10mg of Rivaroxaban? My Haem has me on 20mg as a therapeutic dose as well as 100mg Aspirin. I had some surgery about 18months ago and didn't realise they were giving me only 10mg-took an argument with a nurse and a few weeks to get me back to 'normal' again.

lupus-support1
lupus-support1Administrator

I am very sorry to read your story. I am not a medical doctor, but I am a mental health professional. Anyone who goes through a traumatic experience suffers and anxiety is a "normal" response. The psychiatrist cannot answer your question because you need to see a neurologist and if possible, a specialist in APS. If I had seen you, I would have referred you to an APS specialist or neurologist for further tests. This feeling of déjà vu and metal taste should have prompted attention and concern.

Please go and see if not an APS specialist, a neurologist. As I said, I am not a medical doctor and have no intention of making any attempt at a diagnosis, but when talking to the doctor, stress this "feeling of déjà vu" and the feeling of de-realization and detachment, which are sometimes referred to as "absences." In the context of your stroke, there may be a missed diagnosis. Please attend to this asap.

With good wishes,

Ros

MaryF
MaryFAdministrator

HI, you need a designated Hughes Syndrome/APS specialist, and you need to be seen sooner rather than later, it is totally wrong to dismiss your very obvious symptoms as anxiety, you have been let down so far a number of times. Also many patients with this condition need to carry a higher INR, and may need a mix of anticoagulants and or something like Aspirin. As Lynn mentions going gluten free can lower antibodies and awful lot. Two of us as administrators are also on LDN, which we fund ourselves, and which lowers antibodies very successfully in a lot of people in terms of Hashimotos etc. MaryF

I have experienced similar with the de ja vu. I had these frequently and would go into a little trance for literally seconds. I’d feel like someone had put me on pause. This was during me getting my APS diagnosis. I would also walk into a room and for a few seconds and not recognise anything. I was tested for epilepsy as there was some suspicion that I was having mini seizures but it was concluded that these were actually TIA’s. I haven’t experienced since my INR was increased to 3.5-4.

I hope you get to the bottom of it.

Hi. Before I was diagnosed with APS and anticoagulated I used to get 'odd' episodes quite frequently. Not exactly what you describe but not that different really. Once on warfarin there was a marked improvement. However my INR was initially kept between 2.5-3 and that hasn't proved high enough - for a number of reasons - and now my range is 3-4. I now get very few strange episodes indeed - and virtually no deja vu or that sinking feeling you describe. My mood is also improved, although I have also started HRT (from the small pic beside your Forum name you appear to be a man; so probably not a goer for you!) which has helped mood matters. In short, what I - along with the others here - am saying is that this might well be an INR issue i.e. too low for your needs. As others have said, an APS specialist is key. Good wishes.

May have already been said, I developed epilepsy when I was about 30. I thought it was my hormones anyway my mum was there on one occasion and noticed I blanked out now on drugs for epilepsy and Warfarin range 3-4

But don’t drive

Hi,

I have had eye-issues and heartvalve-issues and I am triplepositive with high titres and I agree with APsnotFab, MaryF and Holly Hesky when they say;

1. Specialist of our illness probably also a heart-Specialist.

2. An INR of at least 3.5 or even better 4.0

Best wishes from Kerstin in Stockholm

KellyInTexas
KellyInTexasAdministrator

Not to worry by the way, if - and that’s an “ if” - it is determined to be a form of seizures ( like temporal lobe - I gave my neurons stats I can post to you- 11 fold more likely with APS in this part of brain than other forms of epilepsy in the normal non APS epilepsy patient demographic) then you can still drive.

I’m sure you are noting how many are coming back to you - from many back grounds- that you are not anticiagulated properly.

They feeling “ floaty and slightly detached from your body” is called the “ dreamy state. “

Modern clinicians call it detachment and depersonalization. If a general doctor / no real grasp of neurology comes across this it can be associated with psychiatric disorders.

However... it’s a red flag for epilepsy. Specifically, it goes with temporal lobe epilepsy.

I was lucky enough to at the neurologist for “ gastric episodes” and he asked me about “ auras.” He asked me about if I had déjà vu, ,dreamy states when awake ( feeling detached, I call it “ floaty out of my body - like you could put your hand through me, I could pass my hand through things I see... like things are not really real, like a dream I’m not really a part of but observing from an altered floaty state...surreal maybe?) My neurologist asked ME these questions. I just sort of thought everyone did this from time to time. I noticed a pattern- happened more going from shade stepping into bright sunlight. Always in sunlight.

Then he ran the EEG. In the first 35 min amnormal spikes ( not active seizures- just epileptogenic activity) - so I came back a day or so later for the 72 hour one. It was confirmed.

By the way, this detached, dreamy state- It was first described in the mid to late 1800’s by Russian neurologist I think the name was Dr Luria ( it’s been a while since I’ve looked at this...2012 pre APS diagnosis.)

Thank you everyone for the replies. My rheumatologist and hematologist both are very knowledgeable in APS and have both conducted studies on the effects of high intensity vs moderate intensity Warfarin therapy. I understand why they want my INR to be between 2-3, but there have been times where it has been between 3-4 and I felt great. I have tried to convince them to let me go to 3-4 but they are hesitant. When I had the last "deja vu" feeling, I took an extra 2.5mg that night and almost a week later still no problems. I'm starting to think that these episodes are most likely INR related because the last time I experienced anything like that, I had my INR checked the next day and it was 2.1. KellyInTexas, I understand what you are saying, and I am seeing a neurologist in october just to go over everything as I have not seen one since I had my stroke last June. I really hope that it is not related to epilepsy because having my driver's license suspended would be detrimental to my family and I. In the last year there has been about 3 occasions where I have had these "deja vu" episodes, and while they were happening, I was alert and coherent through the one or two seconds the sensation went through my body. To start, I am going to try to convince my doctors to raise my INR over 3 and go from there. Hopefully it is that easy.

Wittycjt
Wittycjt in reply to jaymacz28

I hope it will be just that easy...wouldn’t that be grand!Best of luck

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