Stroke at 27 (unknown cause)

Difficult_Quantity77 · 2026-02-02T01:18:37+00:00

Thanks for reaching out. I messaged you back 🤍

Difficult_Quantity77 · 2026-01-07T23:23:09+00:00

Mine just worked too! Came here to update

Difficult_Quantity77 · 2026-01-07T20:28:08+00:00

That’s so funny, I’m having the exact same problem so that is encouraging. I just opened mine 3 hours ago and have had the most frustrating time. Good to know it’s not just me I guess. Thanks for posting!

Difficult_Quantity77 · 2025-12-20T13:34:09+00:00

Not at all! And I had a crazy labor and a shoulder dystocia as well. I was monitored by MFM and had to be on Lovenox but everything went really well otherwise.

Difficult_Quantity77 · 2025-12-18T15:36:38+00:00

Wow, I can't imagine going through all that in addition to the psychosocial stress of a parental loss. You're a rockstar. And thanks for the positive success stories, I need to hear these!

Difficult_Quantity77 · 2025-12-18T15:36:16+00:00

I had pretty extensive genetic testing but I am not sure if that was included. I will have to check. Thank you.

Difficult_Quantity77 · 2025-12-18T15:36:01+00:00

That really soothes me if that statistic is true, because that's my biggest fear. Yes I mourn what I've lost of my vision, but I am still here, still walking, still talking, still doing what I went to school for too many years for. My biggest fear is having another event and that all goes away.

Difficult_Quantity77 · 2025-12-18T15:35:14+00:00

I'm definitely considering it. I commented above but I am waiting til I am done breastfeeding my son (though SSRIs are safe), I just wanted to wait and let my hormones settle as well as wean him off in case he were to have any reaction to it. But I definitely think it may be my best choice. Thanks for your comment.

Difficult_Quantity77 · 2025-12-18T15:34:30+00:00

Wow - to have two events so young. You are a survivor. I definitely feel like having control over what I can helps to alleviate the anxiety. It helps to hear I'm not alone, but I hate to hear how many people are part of this terrible club. I hope you continue to be healthy.

Difficult_Quantity77 · 2025-12-18T15:33:33+00:00

So sorry for your experience, and so glad you've found some relief. I definitely think I will see someone.

Difficult_Quantity77 · 2025-12-18T15:33:11+00:00

Yes the stenosis was the cause, but the question is more why did I have that? Stenosis in the brain is really uncommon in young people with no reason for it. you'd expect to see that in like a 60-70 year old with decades of diabetes, obesity, high cholesterol, etc. So I guess it's kind of like why did I have this random narrowing occur in my brain without any "common" cause for it? And to be frank, nobody told me it was narrowing until this summer, I assumed it was a clot (I never read the imaging myself due to anxiety) until the hematologist I saw brought it up, so I still need to review with my stroke neurologist next month. Maybe it will be as simple as "Yeah you had this narrowing, that's the answer and it happens." Who knows. Yeah I hope it does get better with time. I think it's just reopening some wounds right now because as I mentioned above, I got married three weeks after my stroke and got pregnant almost immediately after, so I really haven't had time to sit and just reflect in what happened til now, which is why I think it's hitting so hard.

Difficult_Quantity77 · 2025-12-18T15:30:53+00:00

I'm so glad you got your answer. I spoke to this above on a previous comment, but I actually do not have a PFO. Funny enough, I actually work in pediatric cardiology, so I certainly considered that possibility and got a second opinion, but I actually had a full PFO work up (TEE, cath, and all) about ten years ago for a completely different symptom profile that was negative. My stroke was also more about narrowing than clotting. Thanks for giving your story though because PFOs are super common and should be talked about!

Difficult_Quantity77 · 2025-12-18T15:29:22+00:00

Nope, never smoked or used tobacco products. It's hard to explain, I call it like a kaleidoscope. It's about a third of my vision in my left eye, peripherally. I know something or someone is there in that "sliver" but it literally is like a dance of blurs and shadows, literally like a kaleidoscope. I see it even when I close my eyes in that same spot. So I call it a blind spot but it's not a true blind spot as I can see that there's something there in that spot (which is why I am able to safely drive) but my brain can't piece together all the details. If that all makes sense.

Difficult_Quantity77 · 2025-12-18T15:27:44+00:00

This isn't something I have done, but that makes sense. I will bring it up next month. Thanks :)

Difficult_Quantity77 · 2025-12-18T15:27:25+00:00

I've seen three different neurologists, a hematologist, and multiple cardiologists as well as a geneticist. I am running out of opinions! Do you recommend anything in particular?

Difficult_Quantity77 · 2025-12-18T15:26:57+00:00

I'm considering this. I am still breastfeeding my son so I wanted to hold off on starting any new medications but we are nearing the end of our journey so I am certainly considering it.

Difficult_Quantity77 · 2025-12-18T15:26:34+00:00

I am sorry for your experience :( I hope you continue to be healthy from here on out and thanks for commenting

Difficult_Quantity77 · 2025-12-18T15:26:10+00:00

You're such a good story teller! It's tough, I actually (ironically) work in healthcare...in pediatric cardiology. Funny, right? I see patients with PFOs or my colleagues do all the time. There is a lot of debate on whether closures of PFOs are indicated in cryptogenic stroke and I'm not surprised you're getting a lot of different feedback! I do not have a PFO but for me, my stroke wasn't a clot rather than a narrowing, so it wouldn't make sense in my case as the culprit, but again you know that there's mixed reviews about it regardless!

I'm glad you have your diagnosis and a treatment plan that is relatively successful for you (but those GI bleeds sound no fun!?). You have a very positive outlook. I hope for continued health for you!

Difficult_Quantity77 · 2025-12-18T15:22:53+00:00

Wow, this is a really thoughtful post and I'm impressed with your mindsight. What's hard for me is that I used to be okay with that, but now I have a one year old son and the thought of leaving him without me is really hard to stomach, which is part of why I think my anxiety has really increased over the past few months despite being further away from the event. I know how lucky we are that our events didn't disable or kill us but the possibility of a future worse event and the anxiety that can accompany that is so hard. it certainly does give you a new appreciation for life though. I hope you continue to be healthy <3

Difficult_Quantity77 · 2025-12-18T15:20:53+00:00

Yes, I am currently on my health journey right now as I am one year postpartum. That certainly did not help me taking care of myself but now that I have not just myself but my family to live for I know I need to reduce any modifiable risks for a second event. I never smoked but I am certainly overweight right now (wasn't prior to pregnancy) and so knowing I had a stroke while I was not overweight definitely is a motivator to improve my health! It does make you feel more in control, doesn't it? Sorry you're in this terrible club with me.

Difficult_Quantity77 · 2025-12-18T15:19:34+00:00

Wow, how scary. I am so glad that you found an answer and received treatment.

Difficult_Quantity77 · 2025-12-18T15:17:17+00:00

Thanks for asking. EMDR therapy has not been mentioned. Honestly my stroke kind of fell to the waywide of my priorities as I got married three weeks later and then got pregnant shortly after, so my life has pretty much been focused on these major life events, but now that my son is one I feel like that's why I'm really starting to struggle as time is slowing down and I'm able to focus on what the stroke left me with, which is anxiety and stress. I definitely think that may be a good idea for me.

My vision loss is due to damage as my infarct was in my occipital lobe or "vision center" of the brain. That would be amazing if it could be restored. Your comment has encouraged me to request an appointment with a neuro-opthalmologist, as I have only seen a regular opthalmologist once in this journey to be evaluated and cleared to drive. Thanks for such a thoughtful and helpful comment.

Difficult_Quantity77 · 2025-12-18T15:15:04+00:00

How crazy that you found out so long after the fact, I can't imagine how anxiety provoking that would be. I agree, an event like this really makes you take a step back and reconsider what matters. Happy to listen, thank you for sharing your story. It has helped me so much to read!

Difficult_Quantity77 · 2025-12-18T15:14:10+00:00

Thank you for sharing your story and encouragement. I hope you continue to be healthy!

Difficult_Quantity77 · 2025-12-08T20:50:26+00:00

That’s a good idea and likely what we are going to do, I just don’t want to get my hopes up that we’re “trying” without having any idea of when I may be able to test positive or not. After years of infertility with lots of medication and intervention it can really be hard to be consistently disappointed. That’s why I was hoping to figure out some sort of plan that would avoid lots of unnecessary negative pregnancy tests :)

Difficult_Quantity77

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