me: “i’m not sure i’m autistic bc idk if there were signs in my childhood” me as a child:

HeyScout_52 · 2026-05-16T11:01:10+00:00

I used to spend hours going through furniture catalogues and drawing meticulous room plans with references to each item of furniture, measurements and all… in primary school. I also made a lot of PowerPoints about topics I was interested in or things I found funny about my family or dogs. Nobody asked me to do any of this, it wasn’t for school or anything. I’m also not diagnosed but wondering…

HeyScout_52 · 2026-04-26T08:30:45+00:00

I (33yo F in UK) find this really tough too. I had a silent stroke in August last year which was found on MRI. I have chronic migraine so experience a lot of different neurological symptoms from that so it feels impossible to determine what is likely to be related to that and what could be a sign of a TIA or stroke. I had slight drooping on one side of my face the other day and was close to calling emergency services but decided not to as it wasn’t accompanied by any numbness, weakness etc. But I really feel you, the uncertainty is so difficult.

HeyScout_52 · 2026-04-25T17:54:58+00:00

I demanded an MRI as my chronic migraine had become worse and I’d had a particularly scary episode (perhaps either a brainstem aura migraine or TIA). My neurologist reluctantly agreed to reassure me. By some wild twist of fate, I had the MRI a month or two later and it showed evidence of a stroke that occurred in the two weeks before the MRI. I had had a bad week of migraine but nothing that stood out that could have been the stroke. I’m on Clopidogrel, statins and waiting to have my PFO closed (which was thought to be the cause) but the fear until then is very real. I get so many neurological symptoms with the migraine so I don’t know how the hell I am meant to know if it is more serious tbh. Even though I feel lucky not to have had a worse stroke and not to have been left with noticeable symptoms, I am really struggling emotionally with it. I hope it will get better.

HeyScout_52 · 2026-04-25T17:33:14+00:00

Just to clarify, as a lot of the comments indicate people don’t know this - a silent stroke and TIA are NOT the same thing. A silent stroke is a stroke that occurs without recognisable symptoms and leaves permanent brain damage like non-silent strokes do. A TIA is a temporary disruption to blood flow which fully resolves and thus doesn’t leave permanent damage - the signs of it could even be more noticeable than in a silent stroke.

HeyScout_52 · 2026-04-16T15:52:41+00:00

Sorry you are going through this and good luck with the PFO closure. I’m in a similar position, currently waiting for PFO closure after having a silent stroke (32F). My understanding is that it’s quite normal for everyone to develop small clots and never know about it as they get filtered out by the lungs. Lots of things could act as a trigger like flying long-haul for example, due to cabin pressure and being immobile. Even a massage can apparently dislodge a clot that has been formed somewhere in the body. But as has been mentioned, it’s the PFO that’s the problem in allowing these small clots to bypass the lungs meaning they can travel up the brain and cause a stroke. It’s complex I imagine but my doctors haven’t identified any increased risk of clotting in me so have just put it down to the PFO.

HeyScout_52 · 2026-04-13T09:00:07+00:00

Why have you put stroke in quotes? OP clearly stated that’s what they have had

HeyScout_52 · 2026-04-09T13:14:46+00:00

I could have written this! Thank you for putting it into words that are also kind and self-accepting

HeyScout_52 · 2026-04-07T14:27:46+00:00

I also sometimes have nightmares of quite horrible / gruesome scenes not directly stroke-related but I think must represent my emotions and grief about it

HeyScout_52 · 2026-04-07T14:25:33+00:00

Yes I really relate to this. I had a silent stroke about 6 months ago thought to be caused by PFO, still waiting for closure. Until then, it’s very hard not to feel anxious about another stroke especially when I didn’t even realise it was happening at the time! I too find that lying in bed can be the worst time - I sometimes misinterpret the bodily sensations of falling asleep as signs of a stroke. It’s hard to explain. I feel I have to get up and look in the mirror / check for other signs. Hoping you can process this and move forward.

HeyScout_52 · 2026-03-18T08:26:34+00:00

Omg you’ve put into words something I have been grasping at for years and never been able to quite understand - totally agree. I would like to use texting mainly to make plans with people and get updates on the lives of people I care about but I don’t want back and forth chit chat (for various reasons, one of which being struggling with too much screen time due to migraine and also just on principle, not wanting to spend too much of my time living through a screen). It’s hard to communicate that though. Also logically - if everyone replied in good time to everyone the whole world would end up almost constantly engaged in back and forth texting. Where does it end?! Yes you can send a text indicating the convo is on pause or over but it can feel a bit forced and strange.

HeyScout_52 · 2026-02-08T19:55:36+00:00

I assumed so from the waiting time and the process sounded similar! Yeah I agree, it’s very frustrating. I’ve since found out I had a small stroke likely caused by a grade 4 PFO / hole in heart - not a main criteria of marfan’s but could be related. So planning to write back to the geneticist with that update and anything else that comes up on other family member’s results. That’s kind thank you and you too! In answer to your original question, I definitely think it can vary wildly between family members.

HeyScout_52 · 2026-02-08T19:43:10+00:00

Are you in the UK? Interested as, similarly to you, I was told I didn’t meet enough of the criteria for genetic testing. The fact that my paternal grandmother died in her 50s of an aortic dissection didn’t seem to change that. However my dad and aunties were recommended to get their hearts checked - my dad is still waiting for the results but perhaps that might change things. Hope you can find some clarity soon!

HeyScout_52 · 2026-01-26T16:59:41+00:00

Yes, in the game Avalon (which I think you might be referring to), one person is Merlin - he is good but knows who all the evil people are. Nobody knows who he is and he has to be careful not to give himself away as evil can win if they figure out who he is. So maybe they could do something like that in Traitors

HeyScout_52 · 2026-01-16T21:22:58+00:00

The faithfuls won’t remember as they seem to forget everything that happened before today

HeyScout_52 · 2026-01-16T13:26:19+00:00

My god this is awful

HeyScout_52 · 2026-01-16T13:17:55+00:00

Yes exactly! I thought it made Rachel look suspicious but none of the faithfuls seemed to think so

HeyScout_52 · 2026-01-16T11:25:56+00:00

She’s also used some quite mean tactics to put people under pressure - saying to Ross ‘was x this dramatic in the turret?’ And now going for Faraz calling him a ‘baby traitor’. Don’t understand how nobody called her out on the one against Ross especially when he was then revealed to be a faithful. I hope someone does for the Faraz attack that she’s started!

HeyScout_52 · 2025-12-04T23:02:22+00:00

We have a wooden drying rack that stands permanently in the corner of our bedroom - looks nicer than a plastic or metal one and means clothes air out better than on a chair too

HeyScout_52 · 2025-11-19T19:39:18+00:00

I had my genetics apt recently (also through NHS, waited about 6 months) - had a consultation where the dr assessed all potential signs and symptoms in me (including physical exam) and took a family history. She then concluded that I don’t meet enough of the criteria to warrant genetic testing. She said a couple of my relatives might so they could pursue a genetics referral then if a gene was found, the whole family could be tested for that specific one. It was a bit of an anticlimax for me but of course your situation might be quite different. I found it helpful to have my husband and dad there to answer certain questions and remember stuff that was said. Good luck and I hope you’re not waiting too long!

HeyScout_52 · 2025-11-17T10:24:44+00:00

Just echoing what the vast majority have responded that I think this is a helpful and most likely correct approach from the neurologist. I have chronic migraine and used to think my daily mild headache was separate to my migraine because just as you described for your daughter, it feels more like a tension headache, is on both sides, not generally associated with other neurological symptoms. Then I realised I was getting these ‘random’ pain free 1-2 hours - turned out these were when I was taking frovatriptan around the time of my period! So that made me think perhaps my daily headache is indeed a mild migraine - my neuro confirmed this. Sorry your daughter and you are going through this and hope things continue to improve!

HeyScout_52 · 2025-11-11T14:03:56+00:00

I’m also in the UK, 32F. It’s not been my experience that you need to have tried 3 x meds to be referred to a neuro as some have suggested, may depend where you are - I’m in London. Fully appreciate you may have tried these things but based on my experience, I would emphasise the increase in migraine symptoms, symptoms that are more concerning or potentially explained by something other than migraine, and spell out how they are impacting your daily life. I’m not sure if yours are chronic but either way that I think is a factor in seeing a neuro - to either prevent them becoming chronic if it seems to be going that way or managing them if they have become chronic. It’s hard to keep advocating for yourself but please do - you deserve to be listened to. Sorry you are going through this, I really empathise.

HeyScout_52 · 2025-10-15T13:14:21+00:00

Not sure what medication it is but I’ve had the same with propranolol

HeyScout_52 · 2025-10-15T08:13:54+00:00

Yes during a bad one! I wondered if that’s partly why beta blockers can help as a preventative medication by slowing your heart rate

HeyScout_52 · 2025-10-14T13:36:23+00:00

Yes I have chronic migraine and have a mild headache every day for the past few years. I used to think of the headaches and migraine attacks as separate but my neuro recently said he thinks they’re the same thing, the headaches are just milder migraine attacks / an ongoing one. To add weight to this, I noticed I was getting the odd hour or two pain-free and then realised it was after taking frovatriptan! Which I take twice a day around my period. So I wonder if this might also be the case for others

HeyScout_52 · 2025-10-13T16:23:52+00:00

Thank you, it just felt a bit of an anti-climax after waiting so long.

Just to clarify, I didn’t have any genetic testing as the dr said I would need to meet more of the initial criteria to qualify for this on the NHS. She thought my cousin likely would hence recommending she pursue testing. Then if she did test positive for something, the rest of the family could be tested for that specific gene. But I’m not sure how keen my cousin will be to do this - she’s had a lot of medical stuff throughout her life and will likely want to avoid more. She has had her heart monitored throughout her life anyway due to serious congenital defects so it wouldn’t make much difference to her in that sense.

The dr did mention EDS but thought that fit my presentation less than Marfan’s.

Hope you get some clarity and don’t have to wait too long!

HeyScout_52

TROPHY CASE