Silent Migraine Help!!

Hey guys so I was diagnosed with SLE then undiagnosed but not ruled out due to a new rheumatologist wanting to start from scratch. I also have Raynauds Phenonmenon, Protein C Deficiency, Factor 5 Leiden Mutation, and Fibromyalgia. Due to Lupus I had experienced numbness in arms and hands at times but a couple of months ago the same numb feeling I would get in my arms & hands started to appear in my face. For example if my toothbrush hit the side of my cheek the wrong way my whole face would go numb for a good 10 seconds. Then I started getting a painless pressure over one of my temples. Since it was pertaining to my head I thought it would be wise to talk to my Neurologist about it. Neurologist explained it to me to be a "silent migraine" which can cause seizure-like symptoms. Recently I had noticed I seemed to zone out all to often and felt more "brain fog" than normal. Also, sometimes my vision does change during some of these occurences. Neurologist told me to research something called Spreading Depression Of Leao and in the meantime she scheduled me for an MRA and an MRV. One night at dinner with the bf all I remember is being in a conversation one minute and the next hes looking at me in terror and Im super confused. He said all the sudden my eyes kind of rolled back in my head and my eyeballs were moving fast from side to side. He said it couldn't have lasted more than 5 seconds. I got the test results back and everything appeared to be fine, however I obviously know something isn't right because other people have physically seen this happen to me and I definitely feel dazed and confused afterwards. Can someone explain this to me or anything similar? Has anyone heard of this? Im desperate! Thanks :)

5 Replies

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  • Hi you history makes for a familiar read. Firstly some with Lupus SLE also have Hughes Syndrome/APS, we have a forum on this HU platform, a lot of our members are on here and vice a versa. Hughes Syndrome/APS often does not get picked up or skimmed over by medical professionals often neurologists. You need to be referred to somebody who understands this and Lupus, here is a list of specialists: hughes-syndrome.org/self-he... and these are the blood tests, plus lots of information on the charity website itself: hughes-syndrome.org/about-h...

    Also people with Hughes Syndrome/APS and or Lupus SLE often have Thyroid problems often passed off by medical professionals as Fibro. I hope you can seek some help as the silent migraines may be a symptoms of Hughes Syndrome/APS and can be controlled by the correct medical assessment leading to more suitable medication. MaryF

  • Hi Mary thank you for your reply! My grandfather who also had protein C deficiency, factor 5 Leiden mutation also had APS. However, I have been tested for APS and came out negative but I do have protein c deficiency with factor 5 Leiden mutation. I have also had thyroid disease in the past and was treated with synthroid as that is also closely watched. Thank you for your help though! :)

  • It is possible to be seronegative with Hughes Syndrome/APS I am, also many others, and regarding Thyroid issues Thyroid UK are the best on this platform to help with that, many find the synthetics do not help as much as they should do and seek alternative medication, although it is hard to get hold of. The TSH test is pretty unreliable and leaves many undermediated as some people do not convert T3 very readily. Also be aware many people also go on to develop SJogrens disease. The fact that you have a family history of APS is

    most telling. MaryF

  • Oh interesting, my docs never informed me that it could be seronegative. I will have to revisit that for sure with the hematologist. Thank you!!

  • You can go in and out of negative and positive testing: ard.bmj.com/content/62/12/1... pubfacts.com/detail/2474159...

    and a whole section on this is on our forum a pinned post entitled sero negative Hughes Syndrome, best of luck your symptoms need help!

    MaryF

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