My Mini-strokes (TIAs) in a 14-Minute Nutshell (My Life with vEDS)

I realized I haven't done a really concise video with the experience from all of these.

I had 5 TIAs (Transient Ischemic Attacks, or Mini-Strokes) in the year period between Dec 2017 and Dec 2018. This is the story in a nutshell of how we worked through the differential of hemiplegic migraines vs. POTS (postural orthostatic tachycardia syndrome, a form of dysautonomia) vs. TIAs, and how we finally came to the conclusion that they were indeed mini-strokes (hint hint: Fibrinogen).

I also talk briefly about how we resolved them.

Thank you guys for listening and have a great Halloween weekend!

As always, this video is not associated in any way with the Marfan Foundation. Please see the full disclaimer below or in the "about" section of my channel. Thanks!

The views, information or opinions in the blog, podcasts and vlogs are solely those of the individuals involved and do not represent the opinions of The Marfan Foundation. The Marfan Foundation is not responsible and does not verify for accuracy any of the information contained in them nor does the information constitute medical or other professional advice or services.

[hgoldsmtgold]

Please note that a TIA is not a mini stroke, but rather a critical warning to a stroke….good that you’re on top of this

[beautifulsoll]

The fear is probably one thing that most people just dont get unless it happens to them. Terrifying, especially when doctors who are supposed to help you just brush it off. My daughter has gone through much the same thing.

[Ed-ipsg]

I was blessed. My hospital in Conroe Texas knew exactly what to do. They were able to get my symptoms under control and found the stroke on an MRI. They were equipped and had the expertise to figure out what was going on and excellent nursing care. You may need to consider another hospital. You need to get good care because a mini can be a warning of a maxi to come.

[staceyrabin]

I’m so glad you posted this. I don’t know how I missed it. I’m 46F with VEDS, POTS, MCAS and most recently spleen/liver enlargement with various related issues. I have been suffering with multiple TIAs for the past year with no real answers. Your video has me researching Fibrinogen and I see that it is controlled by the liver. Light bulbs are going off to find out if my NASH liver disease could be affecting Fibrinogen levels. I had never heard of it before so I didn’t know to ask but I will be calling my doctor first thing in the morning. It might be completely unrelated but it is an idea to look into so thank you for sharing. I hope you are as well as can be expected. ❤❤❤

[terryhenson]

You sure have learned a lot about this. Thank you for this video. I'm sorry this has happened to you. You are a nice young lady and this must have been a nightmare for you. God bless you, dear lady.

[nupidoo]

Just had a TIA 2 days ago 26/04/24 and am recovering at the moment. Hope i dont have any more and am lucky my family is close by checking in regularly. Best wishes to the lady in this video from England..

[csmcsm-lvhe]

You are so lovely, well done for being so persistent and relentless in your research. I'm in awe of your bravery, I've had my shit, and I know the fear, will done, really really well done, Dave

[andream]

Thank you for sharing your experience! I’m starting TIAs at 44 years old. I had a bad one in May, was admitted for a stroke, but it was TIA. Happened again this weekend. Almost went to the hospital again. The fear is something awful. Background, hEDS, spontaneous CSF leaks & multiple spinal fusions.

[catherinezariwney]

Hey Katie. My name is Catherine and I feel like I had pretty much the exact same story as you.... thank you for sharing your story!!!

[hansterlady]

I have actually had TIAs from standing up too fast but it definitely didn't last as long as yours. I would get up, half of my body would fail and I'd collapse. It just felt like my leg failing and being dead, and I'd lay on the floor and get up slowly and it'd resolve. As soon as I collapsed my brain got the blood flow again because I was supine again and my blood vessels didn't have to work against gravity....
I can't believe the doctor didn't think that a pots/OH TIA would resolve the second your position went back. I feel like you deserved a diagnosis much sooner. That sounds so scary to worry about happening every time you get up.

[KristinaMarie]

In 2020 I began having episodes one every other week and everyone of them occurred during the night when asleep. I wake up having all of the symptoms. No physicians here could diagnose me because they said there is no damaged area seen on my brain So I’m left just staying home to sleep them off. I had these every other week for10 months of these exact symptoms . It stopped a month after having a lumbar fusion in October, than started again today 9/4/21.
Tina of Texas. Scared with no help!

[eymeeraosaka]

Thank you for experience has taught me not to rely too much on doctors especially in private hospitals. Always get a second opinion.

[myleereagan]

Hi katie thanks for sharing your health issues to help others.. as you look back on these episodes of tia dont you see any signs days or hours before Some of the tia happened, besides the obvious
f a.s.t? Also after your release from hospital, was SMALL pain occurring off & on, small numbness, & needles feeling around legs toes?

[waleyefish]

Katie,
Make sure your Neurologist tests you for CADSIL. It's a Hereditary condition that starts between your 20s thru 40s.
Keep trying to figure this out.✌️

[izarivera]

Been thru this and recently and doctors ignore women they think is on our head. Still struggling no results from the doc..thank for sharing. I'm not crazy

[Northern-Sounds]

I hope you are feeling better now. I had a TIA in June and still feel quite wretched. ✌️❤️🤗

[sierraallison]

Would you mind posting a list of the labs that you had you neurologist run for the mini strokes??? This is the first video I’ve seen that related to what’s happening to me

[cheyennetorres]

Hi katie I am experiencing almost similar and am scared. I just had an episode where I began to feel
Funny and faint then my arms started to tingle and my chest and stomach felt numb and weird then my hands locked up I couldn’t move them at all my face pinched up
In like a fish face and stuck like that and my speech was getting bad and slurred. I keep hearing ringing in my ears and see black spots/lines in my bison plus having headaches. Every time I go to the er they say it’s anxiety but Ik it’s not idk what to do anymore

[jenminchello]

Hi! I think I might of had something like this happen to me late yesterday. I was about to cook dinner and vent over to pick something up and my whole left side went numb and my tongue started to tingle and I couldn’t get my words out that I needed help. My whole left arm was limp. It was like a blackout but I was awake for it all and so confused. It took a few minutes for me to get my words together. I was having the hardest time getting any words out. I went to the ER soon after they did EKG, checked heart, lungs, bloodwork all can back normal. Doctor said maybe vertigo…but this was COMPLETELY different from vertigo.

[-mkz-]

I think I either had TIAs, strokes or seizures. Imagine having a 2 day a bad headache (like an icepick was inside my head) where it felt like my CSF was replaced by gasoline and lit on fire, feeling like an excess of something was there (I just stopped antidepressants at that time; thus I thought it might be an excess of neurotransmitters). And on day 3 (A Saturday), at around 5-7pm (after sunset), I woke up suddenly, like something or someone woke me up. And I was like "Ok.... this is odd". And I just start convulsing whilst something was pulsating behind my left eye, painful strong pulsations that were deep and going up behind my forehead, above my left eyebrow. I think it lasted a minute or so, but every second was A SECOND, like, those were some long seconds. I did think that I might just die. Feared death, then accepted it. But then it was over (and I'm leaving some of the details out to keep this to the point). Eventually, it was over. But right after it was over, I had this immediate sense that a part of me was just gone, like it has departed into the other world (after death, your soul goes to the afterlife, I'm a Muslim BTW). And I just felt this emptiness inside my head, and my IQ kind of dropped too. I was glad that the headaches were over. I then opened my phone to catch up with my classmates, I was trying to read, and I couldn't 1) read words; I was spelling letters like a kid., 2) I couldn't comprehend what I was reading at the same time. and those were red-flags for me at the time, but I thought it's just a byproduct of my fried brain from the "seizure". I felt dump, consciousness was reduced, I'm alert and can respond, but it's hard to describe. It's that part of you that's here, when it's gone, you start to feel distant from reality; as if there is a space between you and reality. Making it hard to feel and experience emotions.

Anyhow. Days go by, then I have another "episode" in class. It was preceded by feeling of doom, sadness, inability to experience positive emotions. Then it hit me, something took hold of me ('grabbed my consciousness') was squeezing my consciousness very hard, and It was like I my mind backed up, and I was having tunnel vision. As it was happening, my head was getting heavier and heavier. It's weight on my shoulders was increasing. And It was harder to keep my head over my shoulders; I was getting weak. I kind of surrendered to the weakness, head backwards leaning, then I started to feel strong pulsations in the left side of my neck. Whit it, I regained some strength to hold my head up. Then "fainted", pulsation in left part of my neck, and I'd get some strength back. Then it stopped and I kind of snapped out of it. However; it's someone has sucked the life out of me. I was sick, tired is an understatement. Ill is what I was. Thought of asking my friend to take of to an ER, but I didn't want to make a scene out of it (I know, stupid me). Whilst walking, my limbs were kind of funny. They worked quite well, but they were somewhat flimsy. As I'm walking my legs would drop, and my face looked droopy. I think I had a stroke. called emergency, but when I told them that I'd just stopped taking antidepressants, they thought "withdrawal symptoms", try and drive yourself to an ER. I was exhausted. I sat doing looking at sun thinking "This is it, this is how it all ends. It has been a tough ride.". I went home barely, slept, woke up with my head feeling funny. Like a balloon was inside, squeezing on my consciousness; It lasted for about 2 weeks, and with it, a pressure sensation behind the left side of my forehead, above my left eyebrow. With anhedonia, and not being able to be myself. Like I lacked the motivation and grit to keep going, and it felt like I was stuck with me. And I just couldn't study. It was like asking a broken machine to do it's tasks. It's hard man.