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.

[@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.

[@TranslucentOne]

I’m sorry to hear your daughter has had a similar experience with this. Very scary!

[@Ed-ip2sg]

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.

[@TranslucentOne]

Hi! I’m so glad you had doctors that did exactly what was needed. Thankfully, I found the answer to my TIAs a few years ago and I haven’t had one since ❤️ best to you!

[@hgoldsmtgold4389]

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

[@TranslucentOne]

Thanks! I haven’t had one in several years now.

[@terryhenson3350]

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.

[@staceyrabin3529]

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. ❤❤❤

[@catherinezariwney4811]

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!!!

[@TranslucentOne]

I’m sorry you went through the same thing! It was so frustrating and scary. Thank you for reaching out ❤️

[@eymeeraosaka2954]

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

[@Coratime]

Thanks for making this video.

[@nupidoo3202]

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..

[@TranslucentOne]

Best wishes to you too! I hope you don’t have any more of these

[@csmcsm-lv6he]

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

[@andream8176]

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.

[@TranslucentOne]

I’m so sorry you’re going through this! It’s so scary. My stroke guy was in Orlando- Dr. Dan Jacobs. Hope this helps! ❤️

[@andream8176]

@@TranslucentOne thank you! I will look him up. 🦓❤️

[@hansterlady7707]

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.

[@TranslucentOne]

Yeah, it was frustrating and somewhat relieving when it turned out to be not related to standing up for me. I’m sorry you have to go through that!

[@KristinaMarie463]

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!

[@TranslucentOne]

I’m so sorry you are going through this, Tina! It’s so very scary. I will be forever grateful to the neurologist that finally found the cause for mine. Until then I really felt very frustrated that I could not find any help. I hope you find a doctor that will help you and I hope that these stop soon. ❤️

[@please-fx3js]

Check for seizures

[@jenminchello4923]

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.

[@TranslucentOne]

I’m so sorry this happened to you! I hope you get some answers and that it doesn’t happen again to you ❤️

[@amahlvanhalsema8188]

Grateful you shared! ❤

[@MrJaxsparrow]

I had the same like three months back and gone through two episodes , well after many tests and diagnostic procedures the neurologist concluded it as Nini stroke due to APLA syndrome, bcz the profile was little elevated in two lipids..but other two doctors noted can't conform as APLA syndrome since the second investigation ( APLA Profile ) took places after 12 weeks ..Anyway I am confused and follows the medicine Aspirin and Warfarin..and has alot of difficulties due to mental state . Medicine impact etc...let's move and hopefully I will be fine.

[@izarivera6416]

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

[@TranslucentOne]

I’m so sorry you are going through this and hope you get some answers and help soon.

[@-m7k0z7-9]

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.

[@-m7k0z7-9]

I was ill in bed sleeping for 2 weeks, like a bad flu, but constant. And about 2 weeks after that, My head started to feel weird, again. Spaced out (inside). Not being able to multitask; I'd do something, do another thing, then forget what I was doing at first, and that was just a bad cycle. And months later, I woke up feeling like my mind had a fracture in it, like the left side my brain was going offline, like a twin-engine airplane, losing it's left engine, me being in the cockpit noticing and feeling the plane go hard left; trying to compensate as much as possible for it. Saw a neurologist that day; MRI looking for a mass showed nothing. EEG on the other hand showed "Mild temporal lobe high-voltage shar slow waves". And I did have anhedonia at that time; my brain wasn't registering anything joyful, thus, I'd feel stuck inside, feeling I have something lacking, something absent. Dr. told to take Valproic acid, and Sertraline for the "depressive symptoms". Anyhow. That night, I had flashing lights in my vision, a severe headache, and metallic taste in the back if my tongue, then my brain kind if "fixed itself" I guess; the 'left engine going out' was working like it was supposed to do. IDK; it's just bizarre. Then I had another EEG done after some stressful events; it showed "Transients of moderate-voltage sharp slow wave activity over bitemporal region with subsequent propagation to other brain regions", I have no Idea what that means, but something not normal. It was hard for me at the time to think; like my mind was kind of frozen, the "stuck with myself" feeling, had frequent muscle twitches over many part of my body, and flashing lights in my vision, mostly when waking up suddenly in the middle of the night in a dark room, I'd see this flickering; it would be faint, but would become clear pulsations in the periphery of my vision; left and right, up and down, but mostly below my vision. So that's that. anyhow. All of that time I thought they were some kind of seizures, but then read about "hemorrhagic seizures", strokes, TIAs, Reversibly Cerebral Vasoconstrictive Syndrome (RCVS), and they were unfortunately hitting close to home. I really can't confirm what I had from the begging, because that requires at least a CT, MRI, and maybe a lumbar puncture. But they look like I had something along those lines, hemorrhagic maybe; that lead to a convulsion, and I was thinking it was just a "seizure". And the RCVS could explain some of the "side effects" I was experiencing when I started taking antidepressants. God knows best. Anyhow, thank you for reading all of this if you did. Just thought of organizing my thoughts, so that I can later on take it to the neurologist to discuss things in a better way, with some good history, since recalling it on the spot is hard.

[@TranslucentOne]

Just replied and then saw the rest of your comment. Wow you went through so much and I really feel for you. I hope a neurologist can help you work through what happened and sorry you couldn’t get concrete answers. I sincerely hope it never happens again! All the love

[@Northern-Sounds]

Well put. You are the 1st person I have seen who's mentioned the feeling I call my "pet semetary" (from Steven King novel/film) feeling: as though some part of me is dead and zombie-esque. I hope you feel better now. ✌️❤️🤗

[@Northern-Sounds]

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

[@TranslucentOne]

Thank you! My last TIA was thankfully in 2018 and I am very grateful for that. I hope you recover from yours soon.

[@Northern-Sounds]

@@TranslucentOne Thankyou. You're very kind. ✌️❤️🤗

[@berber779]

So happy to hear that ❤❤❤❤​@TranslucentOne

[@berber779]

Do you have high blood pressure ?

[@TranslucentOne]

Hi! Sorry I missed this. I have low BP

[@myleereagan4545]

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?

[@TranslucentOne]

Hi! No it was very sudden. I don’t remember having any warning signs before it happened or any residual effects after.

[@NoneNone-yt6nv]

Thank you

[@cheyennetorres9756]

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

[@TranslucentOne]

Hey there! I am so sorry you are going through this. Sounds so scary! Have you sought out a second opinion or checked with your primary doctor? Obviously I’m not a doctor so I don’t know how else I could help. Hope you get this figured out soon. ❤️

[@kathyaxton7096]

I recently had an episode that made me wonder if I had a mini stroke. While sitting in my chair the room started spinning, my vision was not good, blood pressure shot up for a while and I vomited one time. I could not walk after standing. I was advised to go to the ER but I thought it could be vertigo since I didn’t seem to have any numbness in my arms, etc. it was bad enough to cause me to worry but at the time I wasn’t sure if I’d be wasting my time at an ER. I can’t imagine what you must be going through.

[@TranslucentOne]

I’m so sorry you went through that! That sounds very scary ❤️

[@foxclover6]

This has happened to me since i was 19. It got bad recently , i paid for my own mra and mri, i still dont know whats going on.

[@TranslucentOne]

I’m sorry this is happening to you. I hope you find the answer so it can stop

[@foxclover6]

Half of my face is now darker, is that relative ?

[@sierraallison4228]

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

[@TranslucentOne]

Hi there! I’m so sorry you’re going through this. The labs were run back in 2018 and I don’t think my doctor was using MyChart. I’ll do a little digging and see if I can find the list of labs for you. 🤞🏼

[@christophervela5447]

Please and thank you Did you ever have any face numbness at all? Or your eyebrow kind of lowering on it's own?

[@TranslucentOne]

Hi! I think I had some mild face numbness during my mini strokes but it wasn’t the most memorable symptom for me and it’s been so long since I had them.

[@philabroms]

I’ve had a couple also. Mine was different. Did you get some medication… like Plavix or aspirin or both ?

[@TranslucentOne]

I ended up on baby aspirin twice a day. Sorry you’ve had these too!

[@ErynRea]

Hi! Who is your Florida guy? Or do you have a different Neurologist?

[@TranslucentOne]

I’ve moved now, but the neurologist I saw in Florida who did the bloodwork (and who was generally an awesome guy) was Dr. Dan Jacobs. He took the time to listen, think outside the box, and learn about vEDS when he had never had a patient with it before.

[@andream8176]

Can you tell me your stroke guy in Florida? Because I just moved to Jacksonville Fl from Michigan. I’m desperate need of a good doctor who understands this with EDS

[@TranslucentOne]

Hi Andrea! I could’ve sworn I responded to this but I don’t see my reply anymore. It was Dr. Jacobs ❤️

[@TranslucentOne]

He was in Orlando

[@andream8176]

@@TranslucentOne thank you ❤️

[@michaelkurtz1967]

Maybe you should have allergy testing. Allergies can cause neurological problems. Regards

[@TranslucentOne]

Hi! I've had allergy testing. Thank you!

[@berber779]

How are you doing so fast have you got any other stroke ?

[@TranslucentOne]

Hi! I haven’t had any TIAs since December of 2018 🎉

[@foxclover6]

Did you ever have an mra ?

[@TranslucentOne]

Hi! I’ve had many MRAs. Have you had a CTA?

[@foxclover6]

@TranslucentOne hey I had an mra and mri but no cta.

[@anafonseca357]

Look up Alexander Pagani. Celebrating Holloween maybe opening you up to witchcraft attacks.

[@terryhenson3350]

Sounds like these care gives are clueless.

[@mnguyetnguyen-xf2vq]

And you are too young to have stroke?

[@TranslucentOne]

I don’t know if anyone is too young to have a stroke, depending on their medical circumstances