So for as long as I’ve had APS I occasionally get these ‘episodes’ that come on suddenly (I usually know ones about to happen), they drain me utterly, give me a horrible sinking feeling and leave me so weak that sometimes I can barely raise my arms. I have asked repeatedly when I go to see Hematology and I just get the brush off. Sometimes I can have lots in a day (maybe 5-10) then they’ll ease off and I don’t have many at all for months, they’re not linked to my INR either. I’m not sure what they are but after thinking I saw a pattern I started looking at Epilepsy symptoms and also if it could be linked to APS, apparently it can be.
So…Has anyone on here been diagnosed with Epilepsy? If so what where your symptoms? I’m a hgv driver and I’m scared to death that if I do get a diagnosis of Epilepsy they’ll take my license away from me. I’ve tried asking ob two Epilepsy pages with no replies at all so I’m hoping someone on here can help me.
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I also was diagnosed with partial temporal lobe epilepsy. My symptoms started, and ended, suddenly just prior to my DVT episodes, which were attributed to a very high platelet count ( 2-3 times normal.) Warfarin put an end to those and since they have not reappeared, doctors tell me there is no reason why I can not continue to drive. ( those seizures were 40 years ago.)
not remember any prior feelings. I only remember that I would feel vaguely confused, and it was only after a friend asked me of the conversation we had had the previous day when she thought my answers seemed bizarre. I could not remember that conversation and I spoke to my brother-in-law, who, at that time was an intern and he urged me to see a neurologist. That’s when I got my diagnosis I was told it was not serious yet, but that I should pay close attention. Shortly there after as in a few weeks later I developed varicose veins which the doctor said made sense since my platelet count was so high. He put me on warfarin. And suddenly my life changed I was thinking more clearly the varicose veins got better, and my platelet count returned to normal. No one knows why, except after my platelet count, returned to normal, and had been so for a couple of years the doctor took me off of warfarin. Andthat week that very week I had my first panic attack which turned out to be a TIA brought on by APS..
I get this feeling, it's usually comes on when I've done too much physically (even mentally sometimes). I feel a huge wave of fatigue, I can't do anything. If I try to push any further I do have a seizure. I had an EEG test done but it came back negative so they said it's not epilepsy. I still till this day don't know what causes it. I recently got diagnosed with aps and still wonder if aps causes this. I also have pots syndrome which is linked to aps.
I’m experiencing worsening optic nerve atrophy and by evening I have very little left to write with as far as vision goes. ( I can read a bit better than I can type. )
Only a neurologist can help you. My neurologist told me- you are having seizures. I argued! I said, “I would know if I was having seizures.”
He said- we will run an EEG to prove it out- but not all seizures are “Hollywood seizures😂”
( like we see in the movies.)
EEG showed hundreds of seizures all starting form the same place with the left temporal lobe-
Symptoms: aphasia, incorrect visual confabulation, feelings of “floating”, being a bit dreamy… in a dreamy state… surreal / detached…
* missing small chunks of time- vanished! Proof! Gone! Five second to ten seconds
* not understanding the normal progression of time in linear terms ( time becomes discombobulated)
* feeling like you on an elevator and suddenly the floor dropped- tummy feels “wheee!!!!!” Like a roller coaster 🎢!!!!! …. I would say I was standing on the beach- the wave 🌊 would crash super fast- st my feet- come up / rush up at my navel and instantly in one rolling motion coming swiftly and instantly upwards swelling in the continuous wave- cresting- up through my body to my head and spilling out of the top of my beach onto the beach…
It was later when I was diagnosed officially my neurologist told me the word for this… “epigaststric rising.” The elevator example is often cited. My brain uses the cresting ocean wave.
I was started on high dose lomotrogine - I think twice daily but can’t remember. Titrations up, but got Stevens Johnson’s. Had to stop immediately.
Was switched to Dilantin. Still had break through seizures. ( based off symptoms/ EEG’s clear)
Was switched to Vimpat. It was better/ not perfect.
Was changed to topirimate 300mg split dose plus diagnosed with APS.
Apologies for replying to such an old post, but I was searching to see if anyone had the same weird feelings I do and I've never seen someone write it quite so well as you have! I've just been saying "I feel like I'm going to die", but I think it's what you describe in the elevator/rollercoaster/wave part. Then I just feel really lightheaded/floaty, perhaps like a bit drunk, for a while. Sometimes it can last about an hour, but days like today it's gone on for 5 hours now. I've had them since my late teens (around the same time I had migraines), but had a spell in my 20s where it got better for a few years. Then they've got gradually worse throughout my 30s and now I'm having them most days and they last longer.
I'm not officially diagnosed yet, but had one positive testing for antiphospholipid antibodies (they've done the second, I just don't know the result until next month) and other tests/symptoms are pointing towards Lupus. So I don't know what to think about these dreadful weak spells now! I had an MRI in February 2023, as the GP thought all of this was MS to start with, so I'm not sure if they would've seen any sign of seizures then. The report said the scan was "within the normal limit".
Bizarrely, I took Lamotrigine for depression about 15 years ago and also developed Stevens Johnson syndrome.
APS patients are quite often first tested for MS. ( I was also- negative result.)
APS is very much on lupus spectrum. ( does not mean you have lupus also, but you might.)
Dr Graham Hughes (APS is sometimes called Hughes syndrome in honor of him, as he and his team first described the syndrome in 1983 I think it was…) noticed some of his lupus patients has a tendency to thrombosis.
Dr Hughes is ( was - he’s now retired ) my consultant rheum at the London Lupus Centre, along side Prof. Natasha Jordan.
Have a look here on HU at the forum Hughes syndrome/ support for APS . You will find us there- I am an admin. Some of us do have seizures. Mine got much better with anticoagulants. Usually warfarin will be the first choice if your second test comes back with one of the three antibodies positive, and you’ve had a clotting event.
I can link the 2022 updated criteria/ guidelines for diagnosis and treatment.
I thought it was Lupus about four years ago, but was laughed at by a GP at the time... I have positive ANA, low complement, react to sunlight (rashes and weakness), joint pains (hands & feet), night sweats, Raynauds, Erythromelalgia, headaches/migraines, the worst - fatigue and abnormal nailfold capillaries. And what the rheumotologist described as "marked livedo", which is why she thought APS. The previous rheumatologist said I had fibromyalgia in August last year, which is now becoming an alarming conclusion for her to come to (I know fibromyalgia is fairly common, but given the pain was only in my hands & feet and all the other symptoms, it didn't sound like that at all). I have gastrointestinal problems too, but unsure what that's all about (Gastroenterology seem to be treating it as "just a bit of constipation" at the moment).
I'm not sure there's a plan to give me anticoagulants if the test comes back positive a second time, as I haven't had any clotting, but I am going to discuss the neurological side of things with her next time and she may decide it's worth a try. I've been on Hydroxychloroquine for about 5 months with very little change so far Now a little worried about it sounding like epilepsy and I have had a ton of mental health problems that have got worse alongside some of the Lupus-like symptoms. Raynauds and some sun reactivity began at the same time I developed Anorexia (unusual as I was in my 30), shortly followed by OCD. I've had depression and anxiety a very long time, but was diagnosed with autism and ADHD aged 37-40. I feel like I'm getting way to complicated!
Seizures can also be caused by stress. PNES (Psychogenic Non-Epileptic Seizures) are seizures caused by stress and stress can come from past traumas as well as current stressful situations. I was diagnosed with APS at 19 years old (27 years ago). I've had all kinds of weird spells over the years, but it wasn't until I was diagnosed with Breast Cancer at 43 yrs old and told to start counseling that the weirdest spells started. It seemed digging into my past and the "little 't' traumas" I had caused panick attacks and eventually seizures. But the EEGs came back normal.Some statistics out there today say that 90% of auto immune conditions (and some cancers) can be traced back to trauma in one's childhood or early years.
I have been working on healing my mind and emotions and feel a lot better!
I stopped taking Warfarin/Coumadin after being on it for 24 years and started taking Eliquis. I recently stopped taking Eliquis and now just take fish oil and an astaxanthin supplement. I feel great!
The seizures that need anticonvulsants are not from psychogenic seizures.
Usually in APS patients, it’s from micro clotting.
This is why it’s important to have a neurologist rule in/ out.
(seizures can damage the brain if more pathways are recruited into the abnormal misfiring.)
We are very happy to hear your personal experience has yielded positive results regarding therapy and supplements. The vast majority of APS patients, however, need anticoagulant medication for life, in addition to carefully considered supplements overseen by specialists. ( fish oil that does not exacerbate GERD being one .)
I am still on warfarin and aspirin because of a heart issue but all my positive antibodies and ANA have disappeared for over four years. I too attribute this to treating my underlying anxiety and a high fiber diet. I am a believer in it never hurts to treat our whole self for the brain/ body connection is everything when searching for optimal health. Often on this site this is not a popular view though.
I thought I'd replied to you last week but it appears I haven't 10 days ago my husband found me in bed after being very sick but I wouldn't/couldn't wake up, a friend spoke to him and told him to get an ambulance straight away ( she's a nurse)
To cut a long story I woke up on Sunday morning after going to bed as normal on the Friday
They've diagnosed ' small vessel disease ' which can be because of APS which I've had years after having a stroke.
Take a look at it Tomcat it might help, this is not ideal by a long way, I'm usually a very active person, swim first thing, pilates when I get back for 9.30 I walk miles, run races cycle etc, the consultant has said I can't drive for a year 😒 which is a damn nuisance if I don't another ' epileptic seizure' in a year I'll get my licence back 👏
I'm on medication for night time seizures,
I hope you can understand what I've written as I'm still not thinking/speaking as I used to, but yes it's APS linked
I have just been diagnosed with this as well, Dot69.
I’m going through a difficult time figuring out who and how to treat- my doctors are punting this back and forth to each other!
It’s also hitting my temporal artery-and chest wall vessels- but the doctors don’t believe it’s classic GCA - probably APS antibodies irritating the vessels. ( this happens with the migraines) .
Should have said my husband is a terrible snorer, so often sleeps in a different room but the consultant isn't happy about that arrangement because I could be very sick or fall and bang something and bleed, so he's said he must be at the side of me, now that is seriously difficult 😂
Oh you have my sympathies!! Bad enough being ill without being kept awake by someone snoring!!😂. My main worry is losing my driving license as I’m a HGV driver so obviously that would mean losing my livelihood as well, I’ve experienced these for pretty much as long as I’ve had APS (so over 20 years) and although they’re horrible to experience I’ve never felt on the verge of passing out etc, even during the really bad ones. Dr’s don’t seem interested in investigating what they could be even though I’ve asked multiple times so I’ torn..Do I try to get a diagnosis or do I just put up with them and keep quiet?
I did not loose my liscense- but mine is not a commercial one. I was started on medication - and they were not grand mal to begin with.
What is your age? Are you at all close to retirement? How are your migraines? ( do you experience them at all?)
Assuming ( and they very likely may not even be) that these are temporal lobe seizures, in APS patients the cause is down to micro clots barring any other known cause.
Keeping the INR in range for you would theoretically manage the problem. I asked if I could stop the anticonvulsants, but was told no, because of the erratic nature of my particular INR results. ( would frequently dip too low.)
Is your INR in range?
There are many factors here to consider … with a neurologist.
You would be able to go on disability ( rightly so!) Although complicated, drought, and far from ideal, the scenario you are currently experiencing is also far from ideal either way .)
I’m 53 and even when I’m having loads of these a day when I get my INR checked it’s usually spot on. I do sometimes get sharp stabbing pains in my temples but they are very brief ( gone within seconds ). After my recent Cancer diagnosis I have applied for PIP but not sure how much I could get on disability.
You're young Tomcat 🙂 I've forgotten what 53 is like, I'm 76 but told I do so much ( did) you'd not know, I so hope I get back to being able to 'do' what am I going to fill my days?
I’m young? It’s funny because I don’t feel it lol.. Seriously though I hope you manage to get back to “doing” again, I’m currently recovering from major surgery so I’m stuck at home bored out of my skull and can’t do much anyway.
Tempoeal lobe epilepsy can be connected with Hughes Syndrome/APS, and I know it can settle down with the correct medication, do you have a dedicated Hughes Syndrome/APS specialist within Haematology?
Hi Mary, honestly I’m not sure any more. I haven’t actually seen anyone in hematology for a long timd (its all been telephone consultations) my next one is in person after I complained.
well today was NOT a good day, my girlfriend and I were going out for the day (I was driving). After about half an hours driving I started to feel another “episode” coming on…apparently I stopped responding to her and the car drifted across two lanes and into the central reservation, it blew out two tyres amongst other damage. I eventually started replying to her pleading with me to pull onto the hard shoulder. After stopping I had no recollection of what had happened.
We spent a large portion of the afternoon in A&E having lots of tests, the young Dr who saw me suggested it may have been an Absence Seizure but her senior college told her to send me home. This is the same struggle with Dr’s I’ve had the last twenty years, no one seems to care. The only thing she did tell me was that I have to notify DVLA which means I will no doubt lose my HGV license and also my livelihood.
I’m so sorry to read this, you must be absolutely devastated. My epilepsy diagnosis was in my early 30s. Whilst I was fortunate enough to be in a job where I could carry on working, I’ve just been told my future options are limited because of my health. Coming to terms with that is incredibly difficult.
In terms of treatment go and see your GP and ask for a referral to a neurologist. It’s very likely that the hospital didn’t see you as an emergency and didn’t call a specialist. You may well have been in shock and not processing as well as normal.
A neurologist should be able to give you a proper diagnosis and start to work out a course of treatment with you.
I'm so sorry you have had such a hard time seeing a neurologist & about your accident. I too have temporal lobe epilepsy caused by my APS. My symptons where feeling detached & strong feeling of de ja vous . Sometimes I would have a strange taste in my mouth before this happened . I would have lots of episodes in a day leaving me totally wiped out the next day. I could go months before the next episodes. I am now on epilepsy meds & although did lose my license originally for a year am now back driving . I hope you manage to get an neurologists apt soon
Having spoken to DVLA they have said I will have my car license suspended for 6 month, however my HGV licence I will lose for at least 5 years!! and I will only get that back if I am seizure free for 5 years WITHOUT any medication to subdue them. Basically this means that I have just lost the career I have held for the last 30 year, I don't know what to do, I'm at a complete loss and panic stricken! I have applied for UC (which I have been granted but I don't know how much I will get yet) and I have an interview with PIP on Friday. To say this is a massive blow would be an understatement as only in Feb I was given a cancer diagnosis and I am currently recovering from having my left kidney removed, I feel like my whole world has been turned upside down in less than three months.
I get those sinking feelings ususlly ic I’m tired or nd inly if I move my eyes too much I’ve had full blown seizures snd on medication now but I still occasionally get those odd feelings Ifidnyvgrt yhrn otior yo s bug seizure thty just hsppen rendonmly and leave me feeling drained. Sick snd a headache Sfter x couple if hours it’s as if nothing happened donitcoukdbd aps symptoms as I’m slready in medication for epilepsy it shouldn’t be thst. It’s def more yo do with his I move my head or ryes I slso suffer from vertigo snd dizziness do you?
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Now a little worried about it sounding like epilepsy and I have had a ton of mental health problems that have got worse alongside some of the Lupus-like symptoms. Raynauds and some sun reactivity began at the same time I developed Anorexia (unusual as I was in my 30), shortly followed by OCD. I've had depression and anxiety a very long time, but was diagnosed with autism and ADHD aged 37-40. I feel like I'm getting way to complicated!
Unprovoked DVT - possible APS
Is this a symptom of APS?
Vertigo type symptoms 
Is it possible to have APS or Lupus with negative blood tests?
Is it possible to be cured?
