Sticky Blood-Hughes Syndrome Support
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Strange new issue

Hi just to recap I’ve had two positive LA Anticoagulant results and i also have bilateral vestibular loss. The other day I had some strange new “attack” and was wondering if APS sufferers have ever had “drop attacks” I fell multiple times in the kitchen with out any warning I didn’t trip I wasn’t dizzy and remember everything just can’t figure out why

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I know from your previous posts that you are APS positive. Have you been evaluated for POTS? I’m thinking others with POTS will reply? We shall see. Cindy 🤪

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No I haven’t but I shall give it some thought I’ve heard of it before just don’t know what it is thank yiu

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Yeah I better get checked cause my heart rate dose do that I remember it when I was fooling with my daughters heart rate oxygen finger meter thingy last year she has pulmonic stenosis born with it. So I’ll be sure to tell them about that and try it out again

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I wonder what has happened with the problem of finding a Specialist as we suggested you should find asap a couple of months ago.

At that time you had Aspirin and compression stockings only. No anticoagulation for your positive LA.

I do not know how you fell in the kitchen but i remember that I also fell (I am LA-positive) once and that was before I was on anticoagulation. Talk to a Specialist!

Also a very good remark from Wittycjt as it could be not a TIA but POT. You know we are not medical trained here so it is better you talke to your Specialist about this.

Best wishes from Kerstin in Stockholm

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I fell multiple times within approximately a hour only happened that one night cross my fingers it’s the last time

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Hi this use to happen to me. I had other health issues three fractured L region bones in spine. The Doctor put the falls down to spinal injury/nerve, maybe it was APS.🤔

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I can tell you that as I have been on this site some years now I know that Manofmendip (Dave) and I had the same symptoms and answers from our Specialists as to eye/ear/balance-issues. Typical for Hughes Syndrome with those very tiny clots or embolies that are not seen on a Scan etc of today as too tiny.

I had a Neurologist who remitted me to a Balance-clinic and I was so lucky to see the best Specialist we have in Stockholm and he told me that I had micro-embolies and that I should take Warfarin.

Warfarin has been my lifesaver and I have to keep it (like Dave) at an INR of 4.0 to get the symptoms down. Read "Sticky Blood Explained" by Kay Thackray. She has neurological symptoms. A good book.

Best wishes from Kerstin in Stockholm

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Belive me I’m trying to get in to one but unfortunately here in Tennessee USA being bossy and giving a crap about your own health is frowned on and gets you no where with these ego trip doctor offices but then again it’s seems like it’s time to let my lovely bipolar lose and shine down on them it usually gets things done I just hate having to be a problem patient but yet in my opinion I’m not the one being a problem it’s the people who took a oath to do no harm are the ones with a problem I’m going to see if we have a hemo dr that’s not in a huge chain of offices this is no small clinic it’s huge and there’s many I’m assuming this is why my records that I personally delivered are MIA. This is just rediculous and dangerous and just wrong. I wonder if I would get anywhere going into their business office or omg I just had a idea my moms been a cancer patient there twice I wonder if she could call her dr and he be able to help figure it out or maybe he could see me

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I’d give it a go, you have nothing to lose and I would think he/ she is a hematologist. Ask when you call if he/ she has any APS patients. Keep us posted. I’m excited for you, good luck my dear, Cindy

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As I live in another country I can not give you the name of a Specialist of autoimmun illnesses who has knowledge of autoimmun illnesses and who has had patients with HS/APS before.

He or she can remit you to another Specialist of perhaps Balance-issues and whatever you need. I do not know but he will know. It is probably a Rheumatologist or a Hematologist as it is a rheumatological illness and also a blood-disorder. I am so spoiled as I have both here in Stockholm now.

I garantee that it is important for you to find this Specialist!

Kerstin in Stockholm

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As Wittycjt says; give that idea of asking your mothers Doctor what he has to say a go as you have nothing to loose.

That Specialist if hiding somewhere I am sure.

Good Luck!

Kerstin

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It’s a shame we don’t know who they are because they would make a fortune and we could get the care we need. If you do go print out a copy of Dr Hughes’ article...”APS:What rheumatologists should know about Hughes Syndrome” and take it with you. Actually take it with you where ever you go. They can’t argue when it’s written by the man who has discovered it! Good luck

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“ making bi polar Work for you!”

😊👍🏻love it!

Hope it actually worked!!!

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That was for falling to pieces. Went to wrong box!

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I figured it was lol

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Lol right

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Hi, sounds a bit frightening.

It could be related to your bilateral vestibular loss, as an additional symptom or a sign it may be getting worse.

Worth mentioning to your doctor especially if they continue or increase.

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That was my guess as well just thought I’d ask you never know 🤓

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The neurologist doesn’t think it’s from a vestibular order he says blood pressure or heart related or psychological

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We have found that the Neurologist do not understand our illness most of them. They believe it is from the brain when it is from the blood.

I am so afraid that you will be stuck to "psychological" (could the bi-polar isssue come from our illneess APS?), "bloodpressure or heart-ralated".

High and irregular bloodpressure like heat-issues can be a SYMPTOM from APS and need first of all a steady and proper anticoagulation which you do not yet have.

They can not think out of the "box" for bi-polar, high bloodpressure, vertigo etc etc etc.

Give a Specialist a try and also a trial of LMW Heparin. I think I have seen here that there are some Specialists in the US.

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Hi again, I was resting on the bed for 5 minutes and thought of you and I thought that I had to add;

They talk also of Fibromyalgia and that can be linked to Hypothyroidism and we have also Sjögrens so better look for a "Specialist of APS with great knowledge of autoimmun illnesses" who knows that APS often also go together with Hypotyroidea and Sjögrens. A Specialist of APS also knows these three are like "cousins".

Sometimes even MS can be mixed up with APS (as an example how difficult it is to know what is what).

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I fell all the time suddenly and without warning prior to starting warfarin. Nobody ever said what it was, it just ‘cured itself’ when I was anticoagulated. I’m LA positive x

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Yes I told the neurologist that I believed my APS was the cause he seems like a good doctor and says after the tests he’s ordered a EEG and MRI that he will send me somewhere I’m wondering if the mri would even show micro emboli or show that there had been some that would definitely make sense

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My mri showed non specific white matter lesions but it was the pet scan of my brain that showed the bigger problem - hypometabolism in both temporal lobes

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I do hope your Hughes Syndrome/APS specialist can shed some light on this? MaryF

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Do you have an APS specialist?

As we all know here they are not easy to come by in the US and it’s very frustrating when you can’t find/ get one.

The U.K. is very fortunate in this matter...as we all know that’s why we come here for help.

I hope you get the help you need, Cindy

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This I’m learning I heard good things about west clinic (from a APS patient of West clinic on a Fb page)and my mom went there for both her cancer battles and they where great so I don’t understand why I’m having such a hard time with doctors recently

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Make sure you are tested for POTs. MaryF

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Yeah my specialist I dropped off my records as they told me too and every time I call they say if I dropped them off then they will get back to me with an appointment.. I feel surrounded by airheads but it dose back up the fact my doctor said she sent them too maybe she really did and they didn’t call her back either idk it’s so flustratibg

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Can you call and speak to her about the “ no follow up/ no call back” issue. Maybe she has some clout that she can call them and see what the delay is as she sent the records to them some time ago, just a thought.

Maybe you will get some good responses on here today about those who “have had” this passing out dilemma, one can only hope, Cindy

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Great idea I’m calling her

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Good.

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You need to find that Specialist as soon as possible before you get a really serious event. Most probably you need anticoagulation and not only Aspirin.

Who diagnosed you with the "bilateral vestibular loss"?

A Neurologist probably but we need a Specialist (Rheuamtogist or ev Hematologist) of autoimmun illnesses who have had patients with our symptoms and who knows what to do and how to treat us.

The problem usually is that we have too thick blood (exstremely thick) and the Neurologists think it is a brain- and neurological problem. It is, but it is also a blood-connection! We need anticoagulation!

Have you read "Sticky Blood Explained" by Kay Thackray? If not, do that. She had a lot of neurological symptoms (I had also) and she has written a very good and understandable book. She has written 2 books actually. I have them both in pocket here in Stockholm.

Best wishes from Kerstin in Stockholm

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I was diagnosed from a ENT after he sent me for a lot of testing with a audiologist he has me scheduled for a MRI next week then maybe I’ll get more answers I hope.

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falling2pieces,

I love your online name, I wish I'd thought of it as it's exactly how I feel right now😲!

When you have a rare and complex medical condition you can spend a lot of time and often years trying to find a specialist who will understand you and treat your condition correctly.

I have over the years had many episodes of collapsing and passing out but usually I will feel acutely unwell immediately beforehand (terrible nauseous, head pain and pressure etc), or I will experience what I can only describe as an enormous elastic band being snapped inside my head and then I just hit the deck. On coming round I can often still feel the need to vomit and it can take a while for me to get over it.

I'm still waiting for a definite diagnosis of APS but have a very serious and complex history of clotting. There are queries that I may have autonomic dysfunction too, so the suggestion of looking into POTS is a really good one.

I truly hope that you can find a good specialist who will carry out the appropriate tests and then get you the correct treatment, which as the lovely ladies above said will most likely mean you need proper anti coagulation.

The support and advice I've received on here has been invaluable to me and it has helped me to ask the right questions to the right specialists. Most recently the wonderful ladies on here have helped me to be brave enough to to stand up for myself and insist on the receiving the care I need. You look young and very beautiful, so please don't wait till you're old and past it like me to get the proper care. Also please don't wait until things get any worse before you get help because the younger you receive treatment, the healthier and happier your future will be. Best wishes, Claire

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Thank you and yes there help has been invaluable to me as well I only got the testing done because I knew what I needed when I saw my GP even though she had never even heard of APS so she just did what I asked but then left me in the air basically and I don’t know why I fell but I can say mine was definitely different I didn’t feel ill or pass out I just fell to the floor like someone pushed me almost then I was like ouch what the heck and got up I see my Ent and get a mri this coming week so maybe he will know something as well I hope.

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I remember Manofmendip having something like this, but he is off for a while due to personal issues he took a break from here, maybe you could look at his profile page and review his posts

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I think I spoke with him right before he announced that

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Now you've just described it, then I possibly do experience something similar. It's as if someone suddenly pushes me sideways, or forward whatever and the only reason I don't end up on the ground is because I use a rollater outside to hold onto and a quad footed walking stick inside, or I'm always holding on furniture as I get about.

My carer and gardener have had to grab me as I suddenly just fall sideways and I recently fell forward onto the floor thru my front door but I hadn't tripped over anything. When you said sudden drops I was thinking of losing consciousness.

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Ahh yes I should be more careful with my wording but I lose my words a lot so you might get the correct word or me over explaining lol fibro fog gotta love it

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I'm right there with you falling2peices! I experience brain fogs all the time and I'm always forgetting my words as well, or I stop talking mid sentence without having a clue as to what I was just saying🤔! Oh the joys of life with sticky blood...

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Ahh that’s me but I also have fibromyalgia so I figured it’s my fibro fog

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It makes sense that APS/Hughes can lead to micro clots in the mechanism that supports the vestibular system. I had horrible vertigo spells before I was properly anticoagulated. Those have now gone away after being on Coumadin and Aspirin. I try to maintain my INR at 3.5. I still fall on occasion. I fell a month ago on a walk with my dog at night. It was sudden and my head hit the pavement. Received 3 stitches in my forehead and a fractured wrist. I still walk my dog but try to really concentrate on my balance and the sidewalk.

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Oh wow I’m so sorry you got onjuredive only hit my head a few times

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Google “ disembarkment syndrome” may be informative, 🤔

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How interesting considering all this began with my ears after vacationing in Panama City , Panama

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APS affects on the vestibular system

books.google.com/books?id=F...

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Hi

I have BILATERAL VESTIBULAR HYPOFUNCTION and used to drop to the floor many times, mainly I could feel it coming on but with only seconds to spare. I sometimes would lose consciousness for at least a few seconds but I never hit my head as I could feel myself falling. Also I cannot drive at night at all and if I am on uneven ground I struggle with my balance. I have learned to live with it but also since I have been on long term warfarin I do not pass out at all, thank goodness. Also my INR is over 3.5 which is best for me. I used to get attacks of vertigo before I was diagnosed with BVH which could last for a week. Sometimes now I just get a spaced out feeling in my head and light headed, it can happen if I turn my head a certain way. I was just told by the ENT doctor that there was nothing they could do for it but that was years ago now.

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See here’s where I get confused my ENT. Says complete bilateral vestibular loss that there’s no question about it. And says if I have any it’s a bare minimum. He says it’s Balance reflex. And that’s all I know. But if I research it it keeps coming up as meniers or hypofunction as you Called yours I just had a MRI but haven’t seen the ENT again yet I was ill and have to reschedule. Hey have u ever shut ur own head in doors as you close them? I know weird but I do it a lot and hit my head a lot .

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Hi, I know I am persistant now but I know from what I have read above that you need a Specialist who understands autoimmun illnesses and who has had patients like us befor.

It is a real "fight" to get a correct diagnose with this illness as so very few Doctors know about it and also so many organs are involved. We have too thick blood that must be thinned otherwise it can be very difficult to live.

As Dave also said earlier he had also met with such an Balance-Expert .The ear/balance/eyes are connected in the brain. Do not ask me how but the very good Balancel-Expert said I had microembolies and had to thin my blood. I should start Warfarin here in Stockholm.

I suggest you read "Sticky Blood Explained" by Kay Thackray. She had the same symptoms like I had and if you read that book I think you would learn something.

I am not sure the balance-issues come from Fibromyalgia. I think it comes from APS.

You have 3 children and I wish you could feel better now and not wait till you feel really bad.

I am sorry for "the rant" but I know from own experience how important it is to find that extraordinary Doctor who knows our illness and what drugs we need. It is often a Rheumatologist or a Hematologist who knows. The Neurologists do not usually "get" that it has to do with our thick blood and think it is something in the head.

Please start looking and when you have found that man or woman he or she will remit you to the Doctors you need to see. I am also positive to Lupus Anticoagulant.

Kerstin in Stockholm

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Thank you I appreciate your persistence. I don’t believe the balance issues are connected to fibromyalgia at all I guess after fighting with drs and family since 1999 about even being sick and having fibromyalgia I’m just warn down on my persistence specially with everyone here in USA in my city acting like I’m crazy just because there to lazy to read about APS I’m just tired. Between all this and fighting disability with no family support I’m exhausted

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Your not crazy or imagening any of this, Kerstin has given good advice - carry on the battle and see if you can get a specialist.

Stay strong, big hug xx

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I understand quite well. So many of us have been told that it is just in their mind or you are sick in your head when we in fact has too thick blood!!! It has to be thinned!!!

If you buy that book I told you about (in fact she has written 2 books but the first one is the most interesting for us two), I think your family should also read that book as they will better understand how it is to live with this crazy symptoms. It will be better when you have finally found your Specialist who understands our autoimmun illnesses and how to treat them,

I wish you good luck now!

Stay with us please!

Kerstin

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Hey you, how are things now?

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Less stressful just taking it easy so I can get my inner strength back I guess sometimes I gotta stop and just breath how are you

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Great ty,

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Hi everyone well today I went in to see a doctor because the other night I had those drop attacks again. As I was filling out paperwork I started seeing double then strange I thought my dogs where there too but not. It took me a hour to fill out simple forms which where not legible and made no sense (my answers) next thing I know I’m in a ambulance headed to er I passed out and wouldn’t wake up so they called 911 that was about 9 hours ago I’m home now slept most that time sent home with referrals to cardiologist,ENT, and neurologist. Sent home with near-syncope information and script for meclizine (antivert) they did blood work to

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And oncologist

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Hi again,

So sorry for what happened with you the other day.

I read that a Doctor told you some time ago that he had found you had bilateral vestibular loss as to your ears. I wonder what the MRI showed one month ago?

Are you on any bloodthinner (not only Aspirin) after you came home from hospital?

Have you found a Specialist of autoimmun illnesses who has had a patient with these micro-clots you probably have before and who knows these illnesses? I am chocked that you are not on bloodthinner but perhaps you are today. You have got your diagnose of APS I presume?

Kerstin in Stockholm

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Hi kerstin I’m curious if these micro clots your referring to could cause syncope or unresponsiveness

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Idk what’s the problem here it’s like the drs are all scared or lazy to Learn or deal with APS. Yes the ENT should have gotten results already but I know he wanted a neurologist to look over it. The papers sent home with me said I was having issues with my blood pressure as well and a few of my blood tests were high and low

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What did the MRI a month ago show? Are you on bloodthinner and not only Aspirin?

Kerstin

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Only aspirin

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I don’t have the results yet for the mri as I haven’t seen the ENT again and I’m still only on aspirin

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Hi again,

You must do something about your APS-situation! Today you are only on Aspirin. That is not enough for you.

You have balance issues (vestibular) from the tiny embolie caused by APS no doubt about it.

These tiny clots (can be a lot of them) do damage to all organs if we are unlucky as this is typical for this illness if you do not get the proper ANTICOAGULATION.

"Manofmendip" (Dave the other Administrator here) and I had the same symptoms like Kay Thackray and many other sufferers from APS. Read her book "Sticky Blood Explained". A good book about APS also useful for relatives and friends to understand how it is to live with this curious and rare illness.

You must get anticoagulation. Ask for a trial of LMW Heparin and see how your body reacts. Please try to get in touch with some Specialist who has had people like us with microemboli or microclots who understands how important it is to get anticoagulation before you get a big event like a stroke etc. I am triple-positive with very high titres all the time and also Lupus Anticoagulant. The antibodies do not go away with the Warfarin but the symptoms and emboli do.

Kerstin

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Possibly “cerebral MSA”? Google it, just tryin, Cindy

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Your doing great thank you for all you do Cindy

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You’re very welcome. Hope you can get some answers

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You right it dose cover every symptom but man I hope we’re wrong lol

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I really appreciate all the support and persistence and after injuring my face from a fall I realize craps getting serious and it seems to be escalating fast I’m gonna call the insurance tomorrow and have them activate my case worker because when I have a case manager they are responsible for making and getting my appointments and everything even taking me to my appointments I was offered this type of care because of my mental issues so I think now it’s time to just admit I’m not able to do this alone and these nurses can get these appointments a lot faster than I can I at least i hope so

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Sometimes if the blood isn’t behaving properly it can cause some psychological disturbances. ( poor sleep has been linked to APS also and I know that can Really exacerbate anyone’s bi polar screwy sleep cycles. )

Dr Hughes is very interested in sleep disorders and ASP.

Bi polar is not very well understood, in my opinion. They are realizing its more and more a chemistry issue in the brain. I have to wonder how much of a link there could be to bi polar and APS. It really would not surprise me at all. Especially the APS subset that’s heavy in the neuro manifestations. It’s an interesting question.

Our son has Aspergers . ( mild and high functioning. IQ in genius range ( 140+) and is in accelerated academics. He has learned ( with much private therapy when young) how to be pretty normal! He has a great friend group now. Plays varsity tennis- is extremely funny- He’s a little odd, but people put it down to him being so ,” smart.” Kind of like the mad scientist type.

Dr Hughes has noted mothers with APS and offspring on the Autism spectrum. Dr. Hughes notes it in my clinic notes.

I wonder if you thinned theblood a little of the bi polar symptoms might improve. The only sad thing is in the neuro sub set- The is a sub set within that sub set - sometimes thinnjngbthe blood goes not help the neuro problems. ( but I’m talking about neuro cog decline, etc.) for example, I keep having small micro emboli to optic and retinal nerves despite INR of about 3.7 average, which is too low for me. I need to be at 4.0 to feel well.

I still am having large dvt’s Also- but in the same place- ( right arm Brachial) and no embolism- so I believe the warfarin ( Coumadin) is helping to prevent further formation of large DVT’s that could flip and go to lungs, for example.

I am getting small superficial clots in legs and left arm- causes bruising in veins. And pain. Seen in dopplultrasound.

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Oh wow I’m sorry. But yes it’s very interesting how much a APS seems to play a rolll in a lot of other illnesses we have or developed it makes me wonder if APS isn’t the cause of a lot of them and just so happens APS was diagnosed last even though it was first.

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I think you may be right.

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I hope we’re wrong too but they need to get you some answers. 🤨

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Yes they do

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I hope they get on board again, sooner rather than later. How’s it going?

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It’s going slowly lol 😂 I’m becoming a regular at the er well my nose is anyways

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