This is my first blog, i'm not a blogger! (so bear with me!!) I stumbled on this site after finding out about Hughes Syndrome and what it is. I still really new to all this.
After having two T.I.A's (mini stroke) last year (which scared the hell out of me) i think i have been diagnosed with Hughes 3 days ago.
I Have to go back to Haematologist in 6 weeks for a definite diagnosis but neurologist thinks its almost certain.
I am 41, I have had a life time of Migraines , frequently lacked energy, I have had one miscarriage at 3 mths in 2006 and we also had a stillborn daughter at 7 mths pregnant in 2007. I was told i was lupus anticoagulant then and had to take aspirin with my next baby. Thankfully all went well. I think i now know why our daughter died before she was born, it still doesn't make it easier , but it helps a little as i have blamed myself since.
I feel like everything is fitting into place with regard to my symptoms and finally i have answers to my questions about my health and feel a bit more positive as i have been scared stiff since having my first T.I.A , as well as being constantly dizzy and having bad panic attacks (which is unusual for me and has made me panic even more !!).
I'm just petrified at the thought of having a stroke , my kids are still young, 13, 12 and 3. and they are my life and breath. i live for my kids, always been a stay at home mom.
I am now waiting to go on warfarin and really hope i can get a bit better.
Also , found out i have a small whole in heart and that's how the clot got to my brain , but they don't want to close it as they think warfarin will do the job . Has anyone else had any expreience with hughes and whole in heart?? I'd love to hear from you.
So glad i have found this site, i will be a regular visitor from now on .
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MagicalHare
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Welcome to the group i hope you get the information and support needed. Regarding the hole in the hear reaserch has show blood clots can damage the heart never herad of producing a hole but i will research for you
Hello and welcome - you have landed in the right place, the wealth of information and support on this site is very steady. and many on here will have had a life time experience which matches yours. I hope we can make you feel less frightened and also once your medication is set up and maintained, things should calm down quite considerably, Sorry you have had more than your share of tough times. Mary F
Compleetly undertasn how ou must be feeling. Once you'r warfarinised, I have every confidence you'll feel better; and it's great they ahve found out now. I foudn out about my Hughes after 4 TIAs were misdiagnosed as postantal depression by a particularly stupid GP. Saly the fact thta she missed the real cause resulted in a srtoke a few days later, so i'm vey pleasd adn encouraged that they have diagnosed you at this point. Just to say: I am sure you on't suffer a stroke on warfarin. But if that happened, people make excellent recoveies. Apart fom a vey crappy left ahnd, I am moe or les completely back to normal and consider mysel lucky in that I don't get half the APS symptoms decribed by many other people here. | have a PFo (hole on heart); in fact, according to my consultant 18% of the population do and it should be fine on warf.
I too had a stroke which is when my APS was discovered however I am sero negative which is why it was missed after all my miscarriages , PE and all the other symptoms before the stroke.
I am on Heparin as warfarin did not suit but can tell you it has made a world of difference and even improved a lot of the stroke effects - so anticoagulation is the key.
So please try not to worry too much, it is great to have answers but when the reality sinks in that you then have to live with this condition its easy to then start worrying again....dont! You will soon be cosseted by a group of excellent docs especially if you are under St T's but it sounds like you already have a good team around you that know what they are doing. And of course this group will do their bit here to help as they have for me already.
Hi, firstly let me say I am sorry for your loss. Big Hug
It sounds like you are blaming yourself when you should not. I know for me being diagnosed was a relief...it explained so many things. Sounds like you are being monitored well.
OH WOW!!! thank you , thank you, thank you, you lovely people. xxxx
its so nice of you all to answer me, i am so relieved to have nearly got a diagnosis and found this marvellous support network. you all sound so friendly.
And nobody mentioned i spelt 'hole in the heart wrong as well !!!! lol !!!
Yes , i am pleased with the doctors i have seen so far, i think thats because i went in ambulance to A and E with the first tia , and the doctors at Heartlands Birmingham ( Dr Sandler , stroke dr) is on the ball and sent me for loads of tests and then referred me to the Q.E. ( Mr Lester and Mr Clift and Mr Wilmott.) which is a brilliant hospital. I feel they have all been very thorough and genuine.
I cant wait to go on the warfarin, i am checking the post everyday for my appointment, its been a week now , i'm hoping it will come soon.
They first sent me to q.e to cardiologist to try to get hole closed to try to stop more clots going to brain , but they said the warfarin will do the job , and if i definitely have got Hughes then i think that's the way to go.
i feel so much better now , reading up about it and finding this site, once again , thanks xxxxx
I have a PFO (hole between the right and left upper chambers of the heart) again this was found as a result of the test post stroke pre APS Dx. I find hughes syndrome so interesting there are so many interesting interlinking conditions/syptoms.
clare , hope you dont mind me asking, have they offered to close your pfo?
do you think it would do any good? my neuro doc said his opinion is no , still have to see what others say, but he said ultimately the decision is mine. he also said in america , they close the hole as standard, whether it would help or not! but he also said they get paid for everyone they do , kinda like piece work!!!
Hi no i dont mind you asking. My doctors are not planning to close the pfo and if am honest i dont think at present it would make a diferance to me as this defect is not causing me any problems. However should the hole start to ne a problem then yes i would push to get it closed.
The reasoning behindthe decision was based on the fact i am on blood thinners for the aps and the pfo was only found by chance as a result of test post stroke.
Hope you are all still well and not suffering symptoms too much.
I have not been on this website for a good few years. I went on Warfarin which was changed to Sinthrome due to Warfarin causing hairloss.
I got on well with the Sinthrome having regular I. N. R. checks. I was also diagnosed with Protein C deficiency and my eldest daughter has been diagnosed with it too. They said they won't diagnose A. P. S unless she had an episode and have told her to have an aspirin a day.
They also diagnosed her with possible Sjogren's syndrome which is an autoimmune condition too.
My kids are now 21, 19 and 11. Two in uni and one nearly in senior school.
I work in a school now which is a whole new career and I was hoping my ill health was behind me.
Unfortunately I was diagnosed with breast cancer in October 2018 . I got put on Enoxaparin injections everyday instead of the Sinthrome.
I had a successful lumpectomy and was just about to have my last chemo on Friday.
But they have cancelled it.
I had an echocardio gram (they keep an eye on your heart when you have herceptin with the chemo, it can damage the heart).
They found a blood clot in atrium of the heart and I spent 2 nights in hospital where they found a clot on lung too 😳.
They were shocked I got clots while I'm already on thinners.
They have upped the dose slightly and it's now twice daily injections.
Oncologist said chemo is too dangerous as it may Cause another clot and the clots are life threatening.
I'm just waiting to see the haematology Dr (and then oncologist again) to see if I can still have the herceptin and radiotherapy.
So I'm all consumed with worry about blood clots and and heart problems again 😩
Panic has come back and I feel I have not had any advice or information about about the clots.
How should I act? Do I need to take it easy? Can I drive? Should I lift things? (housework etc). what shall I look out for or be aware of? 🤔
I was that shocked they cancelled the last chemo and about the clots could be life threatening, I forgot to ask questions!
Google not very helpful either, making me panic worse!
You know that you are answering an old post now (7 years) but after i read a little about what you have been through I understand that you have a bit of a complicated APS also with breast cancer in 2018. As you know we are no Doctors here only we have APS and been on this site several years.
I just hope that you have a Specialist of autoimmun illnesses who is very knowledable of APS and especially about anticoagulation. That should be important and that is my advice No 1 for you!
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Prof Hughes' blog - September 2011
