Do anyone suffer from Hemiplegic Migr... - Hughes Syndrome A...
Do anyone suffer from Hemiplegic Migraines?
I personally don't but I can see how some of the symptoms could be pretty similar to migraines associated with Hughes Syndrome. Have you had a diagnosis of this? Mary F
Mary, so kind of you to respond. Yes I have been diagnosed with Hemi. Migraine. Have been suffering now for over the past 4-5 years now. Can you answer a few question about Hughes Syndrome for me? I just got my blood profiles back and the test show that I may have Hughes, and I certainly have most of the symptoms. Just have been in so much pain, and have had so many episodes, that are like mini strokes. Also, had extremely difficult pregnancies as well. What kind of a specialist did you see at first when you were diagnosis-ed? Thanks again!
Oh hi here, your answer explains the confusion with diagnosis, please read our charity website for symptoms if you have not already done so. You need to see a rheumatologist with experience of APS, some see a haematologist. Where are you located? There are a number of things you can do. As long as you have a medical professional who is listening and keen to refer, I can load you up here the relevant things to take along. Mary F x
Thanks again Mary. I am located in Dayton, Ohio 45458...just relocated back East from San Franciso where I was being treated at UCSF San Francisco by a Neurologist. Thank you for your kind offer to help out. Susanne
You will find that others near you will come on and give local advice I am sure. Let me know if you need any particular papers, or the film, or anything else. We have plenty from the USA on here, who will introduce themselves soon. Mary F x
I'm next door to you in Indiana, but not having much luck with specialist in my area. I bet GinaD can help you find someone in the Midwest. Here's a recent post she left for me:
hughes-syndrome.healthunloc...
I've heard Dr. Michael Stack is the APS expert in Indiana. He's a rheumy in Indianapolis. I wasn't able to get into him as he's not in my insurance network.
I too was diagnosed with hemiplegic migraine before I had a Hughes diagnosis. I am very newly diagnosed - just two months - and am on Warfarin. I can see now that the hemiplegic migraine symptoms did kind of match my own but did not really respond to the drug I was given. Yet now I am on warfarin I can see how my symptoms improve when my INR is higher and my dose is higher, When I went for an INR check on Friday I knew it would be low because my speech was slurred and my eyesight poor.
I can see how the neuro went with the migraine diagnosis. You really need to see a rheumatologist or haemotoloist with knowledge of APS. You need anticardiolipin and antibeta2glycoprotein tests. I just pray you are not sero-negative as that makes things even harder for you.
It sounds like your test results will offer a postive diagnosis. I truly hope so. I was driven down the hemiplegic migraine cul de sac and it just served to further delay diagnosis.
Good luck & please persevere. I had given up and then a friend inspired me to keep fighting for the correct diagnosis.
Lynn.x.
Lynn,
How extremely kind of you take the time out to write to me. You have no idea how much this means to me. Hopefully you won't mind if I take the liberty to take a few moments to ask a few more questions as I feel though I have been lost for so very long in this illness and might just finally be close to what might be a right diagnosis. Where do you live Lynn? As I mentioned I live in the States in the Midwest in Ohio. Have been down the NDPH (New Daily Persistent Headache) and Hemiplegic Migriane "cul de sac" as you so perfectly put it for now over 4 years and the still live in pain most days and suffer from frequent episodes along with seizure like events. My first question for you is have your headaches gone away or gotten better with the warfarin? Are there side affects? Did your Rheumatologist or Hematologist tell you that you had Hughes? Right now I am still seeing my Neurologist who ordered all ordered all of this blood work. I have an elevated APTT Value, there shows a suspicion for APS and I have all of the symptoms, who would you recommend I see first?
Did they recommend any change in diet, other medications? Sorry for so many questions Lynn. I love what you wrote last because I was just at the Cleveland Clinic and they were trying to tell me how to live with the pain! What you are writing is music to my ears, fight for the correct diagnosis! How did you get that Lynn? Please share any words of wisdom!!
xoxo,
Susanne
Hi Susanne
I didn't have an awful lot of pain with the headaches I would just go weak down the right side and my speech would go slurred and my face drop. I had had a few terrible migraines in the past but the pain was going and I was just having these stroke like symptoms.
I am not at a stable INR and my warfarin dose changes each week. But my head is certainly clearer, my sight better and my speech is much better. Everyone has commented on my better speech! My memory is still quite poor but I can remember more word names & I don't get so lost mid sentence & forget what I wanted to say. I can tell when my INR is getting low as I go back to pre-diagnosis symptoms. So far I have no side effects but warfarin can cause bleeds. I do bruise very very easily. My rheumatologist said it was Hughes. When you start warfarin they do talk about diet - vitamin K especially - this can lower your INR. This is all very knew to me and I am studying this site every day for answers 
I am considering going gluten free. I have reduced gluten intake and seen benefits.
I live in the uk.
I don't think it really matters whether you see a rheumatologist or a haemotologist but you need to be sure they know about APS. I had heard that my rheumatologist was good from my friends at church. He leaves no stone unturned and delves for clues as to why you feel so poorly. Luckily for me it was so so obvious I was ill as my speech was dreadful.
My neurologist had not found all this out mainly because the antibody I am positive for - antibeta2glycoprotein - has only been routinely tested for in the past few years and was not tested when he took my blood tests. I am negative for the more usual anti-cardiolipins.
I hope this helps.
Lynn.
Lynn, thank so very kindly again for your note. You must be a very determined woman, and I am so glad that you are being treated for Hughes now, how very brave you are Lynn! Just that they recommend that I get tested again in 12 weeks, well, for me 12 weeks seems like years! So glad that you suggested that specific test, the antibest2gycoprtein, will ask for it from a new specialist. Going to new to see someone as you see someone who does really understand APS. Is there a contact is the US who knows specialist? Thanks again Lynn. You are beyond kind!
Thank so much for the words of encouragement and the suggestion about Gluten Free diet. I also listened to Prof. Hunt speech, thank you so kindly for forwarding. Extremely informative!
Did anyone test positive for Factor V Leiden as well?
I had a positive factor v leiden,but when they retested it was negative - so they went with negative x
Yes, I had a hemiplegic migraine which put me in the stroke unit for three days earlier this year. I feel there is some doubt as to whether it was a HM or a TIA - for insurance purposes the migraine is better! I was seen by a stroke specialist and he wouldn't really say one or the other - both HM and TIA can be serious so I guess they treat them the same way.
Thanks for that info They did a CT scan when I was taken in, then an MRI on the third day and, TBH, I would rather have a diagnosis of HM as it means I can get life insurance and mortgage cover. Both HM and TIAs can have serious consequences - HM can cause coma as well as all the other symptoms of a stroke but because my speech was affected first, then the paralysis, it would indicate HM and not TIA. Anyhoo, they had a good look on the MRI and I went through the scans with the specialist so am happy there's no lasting damage.
Hi i have had various diagnosis over the years, first started as vertigo because of room spinning and balance, they i started get migraines which over the year got worse and was finally diagnosed with hemiplegic migraines, I started to get the tingling and numbness down one side they did various test and come back with hemipegic migraines, then two years after being diagnosed i had a stroke at first they thought it was a Mini stroke (TIA) then when test done was a stroke. i was put on asprin adn clopogil but then two years later i had another stroke, so was then put on warfarin range of 2 - 3, then because they diagnosed APS/HUGUE/LUPUS Increased my range to 3 -4 and must admit since being on the higher range i found it helped with the headaches a lot. they are now looking into nerve damage as problem with feet etc, dont know if there is any connection to the hughes/lupus etc i know it can affect organs but so far been fine with that.
hope this helps
Donna
x
Yes I have been postively tested 7 years ago for Hughes Syndrome and I am on 300mg daily of aspirin, plus I was recently diagnosed with hemiplegic migraine. It can lead to very confusing symptoms and at times being told off by doctors as I have discovered. The blood clotting and stroke possibilties of the Hughes is of course potentially dangerous, whereas the stroke LIKE symptoms I get from the hemiplegic migraine MIMIC it.
It is scary and has led to some very frightening occasions. I have to carry around a card with me. I got told off a a few weeks ago when i woke with my face fallen on one side, no feeling in my arm, pain in my head, slurred speech etc and ignored it thinking it was a hemiplegic migraine. Fortunately it was. Then it was pointed out that I DO also have a blood clotting disorder, personal history of blood clots and thromboses, a family history of brain haemhorrage, stroke etc and really should have at least got it checked out!!
I gather it is unusual to have both definitively identified, and one can be misdiagnosed for the other in early stages of diagnosis. I have been told in later years I may well deteriorate and have to go on warfarin etc etc. but for now I stay positive and active. I only see my GP every once in a blue moon and life goes on. Hang in there.
Haematologist still says my migraines have nothing to do with APS/Hughes
Does anyone else suffer with restless legs?
How do other APS sufferers hold down a job?
New here...anyone from Ontario? 
Misscarriage and migraine
