Hemaplegic attacks & lights

[Lucyanders]

Hello I m new on here, I have Sjorgrens and one min I am told I have Hughes and possible Lupus and the next I am not....I have a strange condition whereby when I go under artificial lights (mainly fluorescents and the new style energy saving lights) I have a hemaplegic attack, I become disorientated and confused, then I lose the ability to speak and eventually communicate. And become paralysed down my left side starting in my face. This can last from a few hours to a few days, and the brain fog and muscle weakness can last weeks after....

Has anyone had anything even similar? My rheumatologist and neurologist cannot work out why this happens and just started happening 5 years ago...

[Lure2]

Hi there,

Have they tested you for APS (Hughes syndrome)? You have Sjögrens so they must have tested you for that or ....?

I only know that my uncle who possibly had Hughes also had an attack of bad headache from flash-lights. I also remember that before I started warfarin I had very difficult to look against bright Sunlight.

Are you sure it does not happen also when you are not under those lights?

Best wishes from Kerstin in Stockholm

[Lucyanders in reply to Lure2]

Thanks for your answer, my tests sometimes show positive and sometimes not....it is within 5 mins if being under the lights I start falling about and feel disjointed and within ten minutes I cannot speak. I have never had one without the lights as the trigger apart from through dehydration when I had a stay in hospital and they forgot to put the drop on for 16 hours...other than that it has always been an artificial light trigger. Blue light doesn't not appear to be as bad as white.

[Lure2]

Hi again,

Does the Rheumatologist know APS? I mean is he an Expert on this condition and understands it has to do with too thíck blood?

Sometimes the tests for APS are negative, but you say that they have been positive also. All three antibodies or only one perhaps?

It is strange that this lasts for such a long time as several days.

Kerstin

[Lucyanders in reply to Lure2]

He keeps saying he thinks I have it and we will discuss treatment, then the next time can't remember saying it and says it isn't, he once told me to take aspirin every day then the next visit said to stop it....it's very confusing

[Lure2 in reply to Lucyanders]

Have you tried Aspirin? Were you better on it? I think you should try that in a low doze as the doctor suggested.

Try to get an APS-Specialist who knows what to look for.

I had vision-problems, probably some sort of migraine without headache or just a little and with Auras. Coloured fenomens (I can not explain in English) for perhaps 5 minutes in the size of a V lying down and opended to the left. I still can have these Auras (they also start with a blind little spot in the middle of my vision-field) especially when I am stressed or tired.

I also had pain sometimes for a short time behing one of my Eyes. I also could see my heartbeat in my Eyes in the form of a beating vertical line.

I am now selftesting with warfarin and all the neurological issues are gone only tinnitus and the Auras remain but Auras rather seldom.

I am sorry that I can not speak English which would be more easy and understandable.

Kerstin

[Lucyanders in reply to Lure2]

Your English is great, thank you for all the advice

[MaryF Administrator]

Hi, where are you located? People with Lupus are very sensitive to sunlight and also the lights you describe, results can come and go for Lupus and for Hughes Syndrome/APS. If you are in the UK we have recommended specialists on our charity website, and the list of blood tests. Please let us know how we can help further. MaryF

[Lucyanders in reply to MaryF]

Hi

I am in the UK my rheumatologist says he is specialised in sjorgrens but says there is nothing they can do for me as they don't know what is connected to it and I am such an unusual case they have never heard of anything like me, my neurologist thinks I have lupus and that is the light problems, but my rheumatologist disagrees and says I need constant positive tests for both...

[MaryF Administrator in reply to Lucyanders]

Get them to refer you to one of the specialists off this list: hughes-syndrome.org/self-he...

Patients with Hughes Syndrome, often have a Thyroid problem plus Sjogens and some have Lupus also . I have all of these! MaryF

[Lucyanders in reply to MaryF]

Thank you Mary

[Sal0712]

Hi there. I used to suffer really badly when in shops where their lighting was flickering. When younger I've had to walk out of places if there has been a flickering light as it would make me feel nauseous and disorientated. The same thing used to happen to me on escalators too! I also suffer migraine attacks when out in heavy snow. The falling snow dazzles me, and as the sight of falling snow is constant and can't be avoided this is sometimes a huge problem for me when having to get to work. I've tried wearing sunglasses and peaked caps which do give me some relief, but I always become very nervous about going out when snow is falling because of my past experiences. During my worst migraine attacks (which have been known to go on for 4-5 days), I have had left sided weakness and suffered slurred speech. I have been dx with Hughes and since starting warfarin 5 years ago my symptoms have eased off, although I had to push my GP to change my range from 2-3 to 3-3.5 where I found I was much better.

[Lucyanders in reply to Sal0712]

Hi do you get pain with your migraine? I have had a couple of migraines with the standard nausea pain and pressure in head participatory behind one eye, and the light attacks I have are nothing like that, it looks to people as if I have a stroke my face can also swell like a monster too.

[Sal0712 in reply to Lucyanders]

Yes I get the worst pain ever with my migraines. Since being dx with Hughes and put on warfarin, they don't appear very often now. In the last five years I've only had 5-6 migraines, whereas before I was having 5-6 per year! I'm also taking amitriptyline now to help with pain management.

[GinaD]

I had similar problems with lights particularly spotlights and fluorescent lights. They would trigger migraines. All this went away shortly after I was diagnosed with APS. Of course, my fear of bright lights continued and it took a few years of no symptoms before I relaxed about being around bright lights.

As you may or may not know, migraines can also produce dizziness, nausea, and confusion. I'm no doctor, but this sounds to me like a migraine type of event. Migraines have a strange set of causes. Generally, there is some kind of blood flow constriction. The body senses this restriction and responds by opening up all the blood vessels leading to the part of the brain that the body feared was losing blood flow. This extra blood flow however puts extreme pressure on the brain resulting in pain, hypersensitivity especially to light and sound, balance issues and confusion. Since APS is a disease which involves clotting blood, migraines are a common symptom.

As asked above, have you been diagnosed with APS? If not, were you consulting with the doctor experienced in treating APS?

[Lucyanders in reply to GinaD]

Hi - I have no pain at all when I have these attacks, I have had a couple of migraines and it's not at all the same. When people see me have a light attack they think I am having a stroke it is so severe.