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Hughes Syndrome APS Forum

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TIA - Black Out - Loss of vision - confusion

stevespoc profile image
24 Replies

I seem to have had my first TIA - so I am told

At 44 - does this mean it's the end of the road for me .....I am a little anxious

??

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stevespoc
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24 Replies
MaryF profile image
MaryFAdministrator

Hi there, at least the TIA has been diagnosed, you need to whoever is managing your care to reassess you and talk you through your medication including your INR if you are on any particular medication, it certainly does not mean the end of the line, far from it, but you need to keep an eye and go to the GP or hospital if this happens again. If you are feeling anxious about it, which will hardly be surprising, please do jot down any questions you want answered at the hospital or next appointment, some fine tuning may be needed with your care. MaryF x

stevespoc profile image
stevespoc in reply toMaryF

Oh ok ..... I am not on any medication as yet apart from Aspirin in the morning .... I am waiting for a CAT scan too .....x

MaryF profile image
MaryFAdministrator in reply tostevespoc

It is good that you are having investigation, but TIA's do not always show up on the scan. Please direct whoever is investigating things to the charity website: In particular two these two sections, the specialists: hughes-syndrome.org/self-he... and also the list of symptoms: hughes-syndrome.org/about-h...

Best of luck MaryF x

Kimu profile image
Kimu in reply toMaryF

Hi MaryF,

You say a T I A does not alway's show up in a ct scan

Can you please tell me how else can they tell if you have had a stroke?

Thank you

regards

Kimu

MaryF profile image
MaryFAdministrator in reply toKimu

Hi, a TIA is not the same as a stroke and many on here will tell you that despite the TIA's they have not always appeared on the scan, however some will. Here is information on strokes, and also the difference between strokes and TIA's: stroke.org.uk/about/faqs-wh.... mayoclinic.org/diseases-con...

MaryF x

Manofmendip profile image
Manofmendip in reply toMaryF

Hi Kimu

As Mary says TIAs do not always show up on MRI scans. I've had several and I have one small area of white on my MRIs and this has never changed, even though I have had several TIAs during a 10 year period covered by 5 MRI scans. TIAs are, 'transient' and, as the mayo clinic article says, they do not cause brain cell damage.

Best wishes.

Dave

Kimu profile image
Kimu in reply toManofmendip

Hi Dave,

Thank you for your reply, I am sure in the future I will pick your brains regarding the many questions I have stored up.Thank you

Kind regards

Kimu

Manofmendip profile image
Manofmendip in reply toKimu

Hi Kimu

You are most welcome.

Dave

Kimu profile image
Kimu in reply toMaryF

Thank you for the links, will look into them, -alway's understood TIAs were mini strokes, a warning of an inpending full stroke?

Have found healthunlocked so helpful, just reading through some of the posts have answered many questions for me, (it's like a light has come on all of a sudden )and it's so nice knowing there are people there who will be able to relate to a lot of the problems I have had over the years. Am still learning my way around the site. many thanks

Kind regards

Kimu

MaryF profile image
MaryFAdministrator in reply toKimu

Glad you are finding it all so helpful, and yes always pay attention to TIA's and treat as possible warning! MaryF x

stevespoc profile image
stevespoc

I think its the shock of feeling normal - then experiencing something scary and unexpected ...... then trying to be normal again. So you are telling me that it is controllable and that there are long term treatment options ?

Manofmendip profile image
Manofmendip

Hello Steve

No, not the end of the road.

I was getting TIAs before I was diagnosed with APS and even after, before I was adequately anticoagulated.

I was on Warfarin for 10 years and then started to get TIA like symptoms again. I'm now on Fragmin instead of Warfarin and things are more stable but I still get the occasional 'funny turn'.

I agree what my Admin colleagues have said and I would add that you may need more anticoagulation than Aspirin provides but you must discuss it with an APS specialist consultant. Where are you from?

Best wishes.

Dave

stevespoc profile image
stevespoc in reply toManofmendip

Hi Dave

I am in Bristol - I seem to be going back to my GP to ask for referrals and different checks - I am worried he might get fed up with me !

Steve

Manofmendip profile image
Manofmendip in reply tostevespoc

Hi Steve.

Right, I'm glad you are in my area. Ask your GP to refer you to Prof Neil McHugh at the Royal National Hospital for Rheumatic Diseases in Bath. They are APS specialists.

Also let me have your email address and I will send you details of our APS patients' group, which meets at the RNHRD.

Best wishes.

Dave

stevespoc profile image
stevespoc in reply toManofmendip

Thanks Dave - my address is ************** REMOVED BY ADMIN***********

Manofmendip profile image
Manofmendip in reply tostevespoc

Thanks Steve. I've just sent you a couple of emails. Dave

stevespoc profile image
stevespoc

I know everyone is different - but that's what is kind of scary - as I want my GP to come up with the magic answer .... lol .... I know this won't happen .

Thank you ... I am glad you replied, as every time I hear from someone it gives me more confidence and strength to tackle the problem

Steve

I hope you are ok too

GinaD profile image
GinaD

I have had multipleTIAs/ mini strokes leading up to my eventual diagnosis and treatment with warfarin. I was then 45, and scared. Very scared.

I was placed on warfarin and in the 14 years since I have only had 1 serious return of symptoms. I adjusted to this new normal of daily meds, diet control and sensible clot and bleeding control. I still hike and bike, ( when age related arthritis lets me,) and I even had a total hip replacement this past fall which went rather well.

So, take me as another example that, no, it isn't over, and docs can and do diagnose and effectively treat this. It might take persistence on your part to find a knowledgable doc as well as persistence on that doc's part to find which med option works best for you.

But again: take heart. This condition is manageable.

jetjetjet profile image
jetjetjet

28 Is a great age -good to hear from you !!!

stevespoc profile image
stevespoc in reply tojetjetjet

I wish I was still 28 lol

jetjetjet profile image
jetjetjet in reply tostevespoc

Hi Steve - the 28 was directed to aps not fab --- but humor is good medicine as well as laughter. good info you have received from all above. we are all here for you to help as we can -- I'm in the states-N.H. ---.I have multiple problems with the APS-- to much to go over now . but read up, feel confident in what you understand, and take it to your Dc's .I was given 3 day's to live in 2009 . I'm still here[ i think ] some times i wonder.keep in touch . jey from accros te pond !!!!

Lure2 profile image
Lure2

Hi Steve,

I am 70 in June and I feel fine here in Sweden. I was on Aspirin for 10 years.

You have come to this wonderful site and these persons that have answered you before me are kindhearted and know your condition very good. I know because I have been on this site for a while. You can trust them.

You must get a diagnose and an APS doctor because doctors in general do not understand this conditon

If I were you I would buy these two books about APS: "Sticky blood explained" and "More Sticky blood" both by Kay Thackray. They are pocket books and not expensive and very good. "Sticky blood" is the same as APS.

Good luck from Kerstin in Stockholm

Cherrydi profile image
Cherrydi in reply toLure2

Like so many have said it is not the end of the road, a good APS specialist who understands the condition is the key for many of us, and the right treatment for you, as it can be slightly different for each of us, I have had TIA's for over 18 years, and I am still here, I know it can be a worry when you first have one, but as many have also said, It is something most of us, or many of us have experienced, Now at least you can get on the road to the right support and care, and that will give you confidence, and take away some of the fear. x

Lure2 profile image
Lure2 in reply toLure2

And APS (we call it so in Sweden) is the same as Hughes syndrome.

Kerstin

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