Seizures related to aps and lupus?

[Purplecherrios]

I have been tested positive with aps and lupus twice with the tests being 12 weeks apart, I also have unreasoned seizures and have been told they can be related, has anyone else had seizures?

[lupus-support1 Administrator]

If you are referring to the lupus anticoagulation test, this is NOT a test for systemic lupus erythematosus, but a complicated blood clotting test. Its name confuses both doctors and patients. I suspect this is what you mean as SLE does not have a specific blood test to diagnose a patient.

It is correct that APS/Hughes' Syndrome can cause numerous problems such as headaches, migraines, TIAs (transient ischaemic attacks) and other neurological problems because the blood is too "sticky" and doesn't allow sufficient oxygen to reach areas of the body such as the brain, or placenta, causing miscarriages.

The treatment is to thin the blood and therefore curable. Depending on how severe your problem will depend its treatment. This can include baby aspirin to warfarin, heparin injections and other drugs. It's essential to be seen by a specialist. Not all haematologists or rheumatologists are expert.

If you are in the UK, you can find a specialist by looking on the right. Currently there are 199 APS Specialists.

With good wishes,

Ros

[KayHimm]

Interesting you are posting with this now. I have UCTD with low level anti-cardiolipin antibodies. I was just told by my neurologist that he suspects some seizure activity in addition to the atypical migraines. He is an epilepsy and brain autoimmune specialist. So, yes, they are connected. What are your doctors telling you? Are you on seizure medication?

[Purplecherrios in reply to KayHimm]

Yes I am on seizure medication, this is the first seizure I have had while taking the medication but not my first seizure. I already see a rheumatologist and my general doctor, I have an appt with a neurologist next week.

[KayHimm in reply to KayHimm]

Yes, it is good that others are clarifying this for you. When you said you tested positively for lupus, I thought you meant the specific lupus tests. Did you meant you tested positively for the lupus anti-coagulant? It is good you are being referred to a neurologist, who can help with some of the symptoms of APS. Please keep us posted. KH

[HollyHeski Administrator]

I haven't personally experienced seizures but I am aware many APS patients do, they are usually treated with anti seizure and anti coagulation.

The key is to make sure your neurologist is also knowledgeable of APS?

I have found this paper which is very informative ard.bmj.com/content/75/Supp...

I'm sure others will share their experiences with you.

[KayHimm in reply to HollyHeski]

Thanks for posting this paper. I can only access the abstract but it is still helpful. K

[MaryF Administrator]

Hi, yes some people have seizures, temporal lobe seizures are not uncommon, I enclose a blog from a couple of years or so back. Many people get confused with the name of the test, but that is a test for Hughes Syndrome/APS. Lupus is a sort of cousin of Hughes Syndrome, however the three tests done for Hughes Syndrome/APS including the LA test is specifically for this autoimmune condition.

It is crucial that you see a specialist who fully understands this condition, we have specialists over on the right hand side of the forum under 'pinned posts' and also some on the charity website. ghic.world/

-----------------------------------------------------------------------------------------------------------------------------------

October Blog 2016

In October, the European Lupus Meeting was held in Venice. Professor Shoenfeld and I were asked to give the opening lectures at the conference. My talk was on “The Challenges of 2020”.

As far as Hughes Syndrome is concerned, there are still major challenges – the best anticoagulant, what to think when the tests are negative yet the clinical features strongly point to the diagnosis, and the screening for ‘sticky blood’ in pregnancy – to name but three.

Another ‘challenge’ concerns the causes (and treatment) of ‘funny turns’ in Hughes Syndrome – the topic of this month’s ‘patient of the month’.

Patient of the Month

‘Funny turns'

Mrs L.B., aged 47, was admitted to hospital having had 3 seizures. They were witnessed by her daughter, who was with her, and who felt that they were epileptic.

Mrs L.B’s past history was complicated. She had been diagnosed several years earlier with Hughes Syndrome, having had a collection of symptoms including headaches, slurred speech, sleep disturbance and ‘funny turns’. During these episodes, she would develop ‘the shakes’ with movements of the hands and feet, muscle contractions and a feeling of ‘not being there’. Between episodes, she was reasonably well, though still complaining of fatigue and occasional severe headaches.

The diagnosis of Hughes Syndrome had been made some 10 years earlier, when investigations showed a deep vein thrombosis and positive aPL tests. She had been taking warfarin for 6 months following the DVT, but then stopped, and was now on low dose aspirin (irregularly).

In the family history, her mother and one sister had lupus, and an aunt was diagnosis with M.S.

On admission to hospital, Mrs L.B. developed a shaking attack – originally thought to be a rigor – secondary to infection. The urine test did in fact show a slight infection but blood cultures were negative.

During the course of her admission, she suffered several similar episodes. On those occasions, the movements appeared more ‘epileptic’ in the opinion of the neurologist.

A new set of investigations showed a normal MRI brain scan. However, an EEG (electro-encephalogram) showed prominent abnormal epileptic waves, including discharges from the temporal lobe of the brain. Her tests for ‘sticky blood’ (aPL tests) were positive.

During one of her turns, an interesting observation was made. She was given oxygen via an oxygen mask, with marked improvement. She was finally started on heparin injections with a view to starting warfarin. Success.

What is this patient teaching us?

A patient recently contacted NHS Choices website, asking why the many brain symptoms, such as mini-strokes, were always attributed to brain clots – especially as patients such as her had normal brain MRI.

I thought she had a fair point : my own view is that cerebral blood sludging is a more likely explanation than full blown clotting – for 2 main reasons: firstly, the normal MRI in so many cases, and secondly, the often full and dramatic resolution of the symptoms with warfarin or heparin.

The other lesson from Mrs L.B. is the importance of seizures in Hughes Syndrome.

Some 30 years ago, my registrar, Dr Charles Mackworth-Young and I wrote a paper suggesting that in lupus patients seizures were more common in those lupus patients with positive aPL tests. (1)

Since then, there have been many reports of the association. Two of my own cases stick in my memory.

The first was an American Diplomat’s wife who had mild lupus, but with severe epilepsy, the latter requiring up to 6 anti-epileptic drugs a day. Whilst in London, she developed a DVT (yes, she turned out to be aPL positive), was started on warfarin – with dramatic reduction in the frequency of fits. (2)

The second was a family tree of one of my Hughes Syndrome patients. She was an EEG technician by profession. During her training, she EEG tested 4 of her brothers and sisters. All 4 had abnormal EEG’s : temporal lobe epilepsy! (3)

The colleague who has contributed the most to this subject is my friend Dr Rolando Cimaz from Milan. In one study, he found that an amazing 20% of teenagers with idiopathic (not due to trauma etc.) epilepsy were aPL positive. (4)

Coincidence! Today I received this month’s volume of the journal LUPUS. The first article was an outstanding review entitled “Hughes Syndrome and epilepsy”, from the excellent research group in the American University Medical Centre, Beirut, Lebanon. (5)

As newer imaging techniques showing blood flow, oxygen uptake, and so on, are developed, we will certainly learn more about the mechanisms of brain manifestations of Hughes Syndrome.

Professor Graham R V Hughes MD FRCP

Head of The London Lupus Centre

London Bridge Hospital

References

1.Mackworth-Young C & Hughes GRV

Epilepsy : an early symptom of SLE

J. Neurol Neurosurg Psychiatry 1985 48 : 185

2.Hughes GRV.

Understanding Hughes Syndrome

Springer. ISBN 978-1-84800-375-0 (Case 3 : Diplomatic epilepsy)

3.Hughes GRV.

Hughes Syndrome/APS. 30 years on.

LUPUS 2014 23 : 400-406

4.Cimaz Review. Cimaz R, Meroni P, Shoenfeld Y.

Epilepsy as part of SLE and systemic antiphospholipid syndrome (Hughes Syndrome).

LUPUS 2006 15 : 191-197

5.Noureldine MHA et al.

Hughes Syndrome and epilepsy : when to test for antiphospholip antibodies?

LUPUS 2016 25 : 1397-

1411

____________________________________________________________________________________________

MaryF

[KayHimm in reply to MaryF]

Excellent blog — really highlights the seizure and “sludging blood” connection. This is also how my neurologist recently explained the migraine connection. Thanks for taking the time to find this for us! K

[rankin1st in reply to MaryF]

This is like reading my husband's journey. Thanks so much for sharing it. Seeing heamatolist Dr Gooding in September for first time. This may prove Very helpful. Thanks

[KellyInTexas Administrator]

Hello there,

I have a severe case of APS.

I do have temporal lobe epilepsy. The epilepsy was diagnosed in 2012 ( pre APS diagnosis, which was November 2016)via EEG’s and neuropsych testings.

I was commenced on lamictal , but during higher titrations developed Stevens-Johnson syndrome. ( fortunately non necrolysing.) I was pulled off immediately.

I was then trialed on Dilantin but it did not stop the seizures.

I was then trialed on Vimpat. This was better than the others. However, the APS symptoms ramped up and migraines roared in.

Topiramate was decided upon at 300mg per day divided into 150mg am and 150mg pm.

Once I was properly diagnosed with APS, my specialists deemed it necessary to continue to keep me on the anti convulsants therapy as my INR can be labile, and I in particular, unfortunately have been told I have a refractory case of APS. I need to stay on the anti convulsants to control sluding/ micro clotting.

[teresahunter]

I’ve had seizures but I’ve also had a stroke so doctors have assumed seizures dos to strokecrather than aps .

[daisyd]

I had seizures due to damage to my brain from APS my local neurologist didn't believe this condition existed,

If he did I would have been put on anticoagulants years ago if he and my GP bothered to keep updated on APS things might have been really different!