Hi all, 8 months ago I began seeing aura almost constantly. I've had migraines occasionally, the aura is new and now incredibly frequent, often without headache. Since the aura my general health has really deteriorated. I've been diagnosed with endometriosis and my doctors are looking into autoimmune problems.
I've had aura for 3 days in a row, and been very tired. Friday I felt oddly light headed and very silly, even though I had a cracking headache. Then last night my finger tip in my right hand went numb. Slowly it took over my entire hand then my arm, then I had dull pins and needles and some sharp pains in my skull. My arm was very heavy and it was hard to unroll my fingers, but I could. It lasted a bit over an hour and went away, then I felt incredibly tired.
In the past aura has caused me to slur my words and get very confused, and even get a tingling down one side of my skull and pins and needles, but last night I really felt it coming on slowly, it was scary! Is this a hemiplegic migraine? No one in my family has this.
Thanks all xx
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kittyIM
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Hi, if your doctor is looking at you from an autoimmune point of view please consider asking them to do blood tests for Hughes Syndrome/APS, even if just to rule it out, Symptoms can present like this and it responds well to treatment. MaryF
Hi MaryF, thank you. My dentist and eye doctor suspect Sjorgens disease and I'm being checked for Lupus, but no one has mentioned Hughes. What are the blood tests for Hughes and is constant visual aura common in Hughes?
Ok Hughes Syndrome/APS is almost like a cousin of Lupus. People with Hughes Syndrome/APS often have Sjogrens and Thyroid problems and also other autoimmune conditions. Here is the charity website, and also there are specific blood tests that you can do. If you do them, do them early at the surgery or do them at the hospital as they are a bit too senstive to be left hanging around for collection. hughes-syndrome.org/
If you do have this, there is a forum on this same HU platform, but please do stay on this one also, it is fine to be on several. The most simple explanation of Hughes Syndrome is sticky blood!
I have had lupus for 6 years now and I had couple miscarriages n had lots neck pain n had bad headache n one day I was walk in then couldn't move down one side of body lucky I was in hospital with my husband then everything went back normal then was pregnant with sec n then loads headaches n that black out few times on stairs n then it happen again where couldn't feel down one side then had baby now I have these attacks twice a week where I can't move n can't feed myself over two years like that now they saying it's migraines u have n they put me on some tablets next week but it's made me very depressed coz had doc saying I never get better n another saying it's all in my head when they found out it's not I have lupus n hyper mobility n migraines n connective tissue disease n arthritis n scoliosis n low iron low vitamin b12 n low vitamin d n put loads weight on coz steroids I got two children one at 6 n another at 2 n I got that depressed of my kids seeing me like that I overdosed myself couple months ago n died twice on table but I do regret doing that I change from then got stronger n I nearly lost my husband from doin that coz he can't cope losing me so it's been crazy 6 years I am only 22 so u not on ur own
You also need your specialists to do these blood tests hughes-syndrome.org/about-h... as a combination of drugs if this shows up, could make your life easier. MaryF
I have severe hemiplegic migraines hun. They present as a stroke...i loose my right side speech and can last for anything from hours to days!!!! And am completely exhausted after attack and sleep.... i started with this in 1998.... they are more frequent now weekly... prevent me from working....and takes timevt regain my strenngth.... its veru depressing sometimes. Get doc to send u to specialist and get them sorted. Its taken mebyears to get mine sorted and i regret it.... xx
I can relate to people telling you its in your head shakylove.... i have similar symptoms and problemsvto you autoimmune. B12. Osteoarthritis. Non functional brain disorder too now... chronic fatigue... i have had 2 bloods saying repeat for lupus... but when repeated they were ok. It does make you depressed. I have just failed epilepsy tests too and waiting forvresults..... stay strong hun. Dont let it beat you. Xxxx
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