TIA experience 12/21/17 -My life with VEDS (Vascular Ehlers-Danlos syndrome)

Had a TIA this morning. Here’s the scoop.

[@TorgerVedeler]

An extraordinary story. I just had a TIA, and years ago I had a stroke. Always remember that you are stronger than you think.

[@Spahgeddie]

Speaking from experience, it is difficult to except we with VEDS have no control over any of it. It breaks a person down mentally. Stay strong and stay you.

[@diazrigau]

Days before Thanksgiving I had a mini stroke, thanks God I was already in the intensive care because I thought I had a heart stack, my heart has a virus so I was in ER hooked to a machines, monitoring me, at 12PM without feeling absolutely nothing, I notice that my left hand did not move, they rushed me and did all type of tests, they found out that I had a mini stroke (TIA). It happen that one of my carotides was 70% obstructed. They send me pills to thin my blood and other medications, my hand is now well , I didn't have a heart attack but I have to follow 3 different doctors regarding my little stroke. Life can change you in a moment. I was lucky that I was already in ER. Don;t worry, you will walk well again it will take a few day and some practice. DO NOT BE AFRAID.

[@anna_d5150]

Omg Katie! How terrifying for you! I was in tears hearing you passing time by sending voicemails. How scared and alone you must have been feeling. I’m just catching up with your vlogs, as both myself and my son are starting out with investigations. Thank you so much for your candid videos. Well It’s three years on and I’m going to do a search to see how you are faring these days! I’m really hoping you’re doing ok. God bless! Keep smiling x

[@TranslucentOne]

Doin really well! I now direct a division of The Marfan Foundation called The VEDS Movement. You can check us out at thevedsmovement.org So sorry to hear you and your son are having to look into this, but know if you do have it we now have a lot of support out here 😊

[@Cringey_Swine]

I had two TIAs and had to go into the ER two nights ago and got released last night

[@katiewright5629]

Bad_Moon wow! Do they know the cause? Glad you’re out

[@Cringey_Swine]

K T They said I wasn't getting enough oxygen and blood to my brain and I was going to the movies with my dad and that's when I was having the stroke like symptoms on my face and stuff and we immediately went into ER

[@TranslucentOne]

Bad_Moon I’m so glad it resolved! That’s such a scary experience.

[@glendawood8836]

I had a stroke at home if my daughter had not been with me I would’ve died I really don’t remember anything that I went through. I was told I was flying in a helicopter to Little Rock I had surgery there and I was in intensive care for three days it was Gods grace that I am alive. I had a blood clot on my brain and a complete blockage on one side they fixed everything but I have to go back on the 27 to have the other side unblocked all I can say is thank you Jesus for saving me.

[@TranslucentOne]

So glad you survived! Hope everything goes well on the 27th

[@kimmiebitchbish9628]

How long did it take you to snap out of it ? was it a flash type thing? Mom of four and im very concerned.. Have you had any problems since .. You seem so young :(

[@TranslucentOne]

Hi! I had four more of these events over the course of a year after this video. They were all brief and didn’t last more than maybe 15 minutes? I have VEDS so it was assumed that there was a small vascular injury causing these that was not visible via scan.

[@TranslucentOne]

Here’s a recent video I did describing everything that happened kzbin.info/www/bejne/ppa8e4KndtaJha8

[@12mannation253]

I get numbness whole body every other day extreme vertigo high heart rate scared and severe head pressure . Been like this all week do you think it could be tia?. I been ti er so many times they did ct scans and said they all look fine and it could be exiety idk what to do and feel hopeless

[@TranslucentOne]

Hi! I’m so sorry you’re going through this. My TIAs all lasted less than twenty minutes. I hope this helps in some way! ❤️

[@12mannation253]

@TranslucentOne so does mine smh they to say I have chronic migranes I'm back at er again 😢

[@TranslucentOne]

I’m so sorry :(

[@12mannation253]

Will ct scans show if they happen ? And thankyou God bless you

[@TranslucentOne]

My ct scans did not show the reason for my TIAs. My understanding is because the cause of mine was a transient event in my vascular system that was too small to be picked up on a scan?

[@blairjohnson7830]

How do you handle living alone with this ? I have pots/dysautonomia and I’m suffering months of bad low blood pressure I’m about to have mental breakdown have brain injury and subsequent vestibular damage plus this pots/dysautonomia and solo mum live alone with my 6&7 yrs old kids

[@TranslucentOne]

Hey Blair ❤️ I’m so sorry you are going through this. At the time I experienced this TIA I was living alone and a lot of what helped me cope afterwards was emergency preparedness. That sense of controlling as much as I could and trying my hardest to let go of the rest. Sending you all the love. ❤️

[@joanphillips761]

That’s amazing but just out of curiosity at your age why would you even think of. A stroke? Did you have any past medical history?

[@TranslucentOne]

I have vascular EDS (VEDS) and was diagnosed with that just a few months before this TIA. It’s a genetic condition that causes artery ruptures and dissections so I became familiar with the symptoms of strokes.

[@conniefogg2536]

I hope you feels better

[@kajuthemysterysaiyan4067]

you to.

[@leomonz]

DId you have Vertigo... I had twice last year and I am scared

[@TranslucentOne]

Yeah during this one I had the intense room spinning sensation paired with the loss of feeling/control in my left leg and inability to see out of one field of my vision. It was all very sudden.

[@kimmiebitchbish9628]

Can you reach out to me. Id love to talk about this TIA

[@anna_d5150]

Sounds like Pots .... or yeah a stroke! Omg muscle weakness? Girl you shouldn’t have been left on your own for so long. I’m going to show my gp this vid because it shows just how flipping scary it is when something so severe is going on - yet -the medicos know Nothing?! You’re my hero.

[@TranslucentOne]

I ended up having five of these between 2017 and 2018 and they were definitively confirmed as TIAs/mini strokes finally in January 2019 after the last one. I did an update video not too long ago about the whole thing, but it was very scary! Luckily we adjusted my medication and I haven’t had any since. :)

[@Diabolical___666]

@@TranslucentOne what medications r u using

[@TranslucentOne]

Hi! After I had my last ministroke I had blood work that showed high fibrinogen. My once-daily baby aspirin was increased to twice a day by my doctor and I haven’t had any TIAs since.

[@craphat69]

Words.

[@TranslucentOne]

craphat69 and more words