Have you had a transient ischemic attack (aka "mini-stroke)?
September 14, 2014 12:20 PM   Subscribe

What was the period after diagnosis like for you? What did you do differently? What, if anything, did you change? What would you recommend for someone going through it? Did you have any subsequent medical problems?

This weekend I had what has been diagnosed as a TIA. I had a short-term, but very scary, loss of language. I couldn't recognize or say or write words. I got seen quickly at the emergency room and the symptoms resolved. I'm feeling fine now, but still a bit freaked out by it and looking for information. YANMD -- I have one and a plethora of follow-up appointments along with prescriptions for statins and aspirin, which I am taking.

My questions are less medical than situational. If you've gone through this (or someone close to you has), what was helpful? What was your experience like? I know that I am now statistically at higher risk of a stroke, although I do not have the standard risk factors for stroke (smoking, high blood pressure, diabetes, etc.) I'm not generally a very risk-averse person, but I'm not sure how to determine new risks here. I'm a late 40s, generally healthy woman. I work out and eat well. Most of what I read about recommended lifestyle changes are things I already do. I'm also interested in hearing stories where this happened once and never recurred.
posted by gingerbeer to Health & Fitness (22 answers total) 5 users marked this as a favorite
I had several (at least 3) TIAs in my late 20s (plus several lesser "incidents") within a span of a couple months, each resulting in the temporary loss of usage and/or strength in the right side of my body (arm, leg). I was pretty much completely fine 3 months after the last one, and still am today almost a decade later. Mine occurred due to a complete occlusion (blockage) of one of the main arteries in my brain. I'm all good now because other vessels grew around the blockage, basically providing a detour for the blood. I didn't need any surgery; just a cerebral angiogram, a couple MRIs and more CT scans than I can count to fully complete the diagnosis. We still don't know why the blockage occurred, however. My docs say that since everything (blood flow, volume, etc) has been checked to be ok that I'm no more likely to have a repeat occurrence than anyone else my age.

I do suffer from daily headaches, which may or not be related. There is also an itty bitty tiny aneurysm on one of the "detour" arteries that is being monitored, and untreated my blood pressure is through the roof. I see my neuro once a year or so just to check on things, and take blood pressure meds daily, and probably will for the rest of my life. Day to day it's not a big deal though, and I haven't really made any life style changes (nor has it been suggested I do so). I'm otherwise healthy, and didn't (and still don't) have any of the regular stroke risk factors with the exception of the high BP, which for me is a symptom and not a cause.
posted by cgg at 1:10 PM on September 14, 2014

Best answer: I am not sure if this is what you're looking for, but have you seen Jill Bolte Taylor's talk? She has a book too.

As far as risk reduction, that is a question you need to ask your doctor - don't bother doing generic searches on the Internet. You are an atypical person to be having a stroke, so most or all of what you see will not apply to you. Most people who have had TIA and stroke are not like you. In order to know how to reduce your stroke risk, you first need to know why this happened to you. I assume there is an ongoing workup here. For example, if you had a mini-stroke related to some underlying genetic blood clotting issue, then it's not so likely that diet and exercise would change your stroke risk (although certainly a good diet and activity level can help you in many other ways). If you are interested there is a freely available article by Larsen et al. (Can't link to it now - I am on my phone) about transient ischemic attack in young patients, with evidence that many may be related to vascular issues/atypical migraine rather than atherosclerosis. A large number of those in her study did not have any further events during the follow up period of ~10 years.
posted by treehorn+bunny at 1:14 PM on September 14, 2014 [3 favorites]

I had a central retinal vein occlusion in my right eye about six years ago, which was classed as a TIA or mini-stroke. It didn't have the same impact in the same areas as your event did - as the name suggests, it represented a sudden and significant loss of acuity in the sight in that eye - but it was frightening and left me with physical symptoms for years afterwards.

What helped was getting actively involved in my treatment, through asking questions and deciding with the consultant what the most appropriate form of medical approach was. I did not go for steroids, which were an option, but for a more conservative and long-term solution. The end result was very positive and I have retained pretty good sight in that eye.

I have never had a recurrence of the CRVO or any other clotting event and am consoled by the thought that being on the medication I'm on now is going to further reduce the likelihood of a recurrence of any sort.

I know it's a scary thing but I'm sure you'll be able to manage and things will be ok. Feel free to Me-mail me if it would help.

Best wishes.
posted by Martha My Dear Prudence at 1:14 PM on September 14, 2014

My mother had them; she was about 62-63 at the time. The result was what my father referred to as 'hallucinations' --- i.e., she saw and held conversations with people who'd died decades earlier (such as her father) or who were totally non-existent (she claimed there was a strange family living on the back porch who let their kids run through her house); or saw/heard events that never occurred, like when she claimed the city was cutting down all her backyard trees to build a park (the trees were fine, there was no park). The thing is though, that these people and events were totally real to her: she saw events and held conversations with people that were just as real to her as a conversation with me or my father or her doctor.

If Mom did have additional physical problems caused by the TIAs it was pretty well impossible for anyone to say: at that point she had so many physical problems from so many other causes that any TIA physical damage would've been buried in the avalanche --- she already had high blood pressure, heart problems, lung problems, a twelve-pound ovarian cyst (yeah, really: 12 lb.), and a whole host of other things going on, all on top of a 40-plus year history of smoking. For what it's worth, Mom did not have any permanent brain impairment, other than the above (for lack of a better word) hallucinations: she never lost her speech and never had any kind of dementia, never had any trouble recognizing any of her friends or family, and she lived another dozen years after the TIAs.
posted by easily confused at 1:29 PM on September 14, 2014

My mom had a TIA which left her blind in one eye. Apparently the TIA led to an Ischemic CRVO.

My mom has avoided statins and gone on a health kick. She is very careful to stay as healthy as possible. She remains very active.

Unfortunately, after her CRVO, the doctor let a medical student try to fix her eye with lasers. She was under the impression that the doctor himself would be behind the controls. I guess the lesson there is not to make any assumptions -- go over every detail with your health care providers.
posted by Ostara at 2:39 PM on September 14, 2014

My mom is in her 70s and had one of these last year. She was disoriented and couldn't speak at the time, and insisted that she didn't need to see a doctor once she came out of it--luckily, other relatives didn't listen to her. Months later, as far as I can tell, she's the same as ever. No repeats, no decline in health.

I have had a couple of serious health issues in the past, including ones for which I'm also an atypical demographic, and an important thing for me was to be able to contact my doctor and ask questions. Doing it online meant I got better answers and didn't worry about bothering my doctor or playing phone tag. You can do this via Kaiser and PAMF/Sutter in the Bay Area, and probably some others. Don't hesitate to ask lots and lots of questions.

Here's hoping that you get satisfying answers and that it was an isolated event!
posted by wintersweet at 2:49 PM on September 14, 2014

Best answer: I haven't had one and I don't work specifically with people who have had them (although I have worked with people who have had them) but I know some doctors are moving away from the differentiation between TIA and stroke. In other words, it may serve you better to think of yourself having had a stroke. Fortunately, it was a small one that did not cause lasting deficits.

Agree with getting a full evaluation and workup from a neurologist and consider a cardiologist.

You already clarified that you understand this part, but just in case, all the general lifestyle changes you can make to reduce your chance of stroke are especially important because one of the biggest risk factors for having strokes is having had a previous stroke. So continue to not smoke, continue to get regular exercise (pending evaluation from clinician), reduce stress (this can require a serious commitment to changing jobs, living situations, etc), and keep that diet emphasizing fruits and vegetables and possibly reducing sodium and cholesterol. You may already do all these things, I'm just going through the regular stuff. Make sure your blood pressure continues to stay within a normal range.

Agree that as you are not typical, your stroke may have unusual causes and this is important to investigate and that advice from others here may not translate well to you.

I imagine this is pretty scary and overwhelming. I think it's great that you're reaching out here for advice and community. Having these conversations will help you figure out what you want to do next and help inform what conversations to have with your clinicians.

Finally, I'm curious how you were diagnosed. Did they do a CT scan? My mom had an episode of transient global amnesia which is not well understood, not a stroke, but also super weird and scary.
posted by latkes at 3:40 PM on September 14, 2014

I came out of a darkened restaurant into bright sunshine, sneezed hard a few times, and lost the ability to recognize, remember, visualize, and even see faces for about 40 minutes.

I thought I'd had a stroke as it was happening, then that I'd had a TIA when it subsided, but it turned out to be the onset of mostly painless migraine headaches, though they have become a little more painful as the years wear on.

However, if you happen to be in Bogota (elev. 8600+ ft.) or just came back, I'd put it down to an effect of altitude, ask about a prescription for acetazolamide if you're still there, and not worry about it unduly.
posted by jamjam at 4:02 PM on September 14, 2014

Response by poster: Thanks, everyone for the stories and advice, especially those of you willing to share your clinical perspectives. It's very helpful.

I think this is the Larsen et al article treehorn+bunny referenced?

To answer latkes' question: I got a pretty full workup in the ER, including a head and neck CT scan (with dye contrast imaging, which holy crap was that an unpleasant experience which they did not tell me about ahead of time) (no blockage) and EKG (fine) and the usual bloop pressure (low, which is normal for me) and blood sugar (normal) and so on. They gave me the diagnosis there. The doctor specified that TIA was primarily different from a stroke in terms of how long it lasts -- seems consistent with your take, latkes. I'm scheduled for an echocardiogram and a longer consult with a neurologist this week. So, TIA is the working diagnosis, but I understand that it could change if they discover a different underlying cause.
posted by gingerbeer at 4:03 PM on September 14, 2014

Oops, misread the date of your trip on my Ipod; sorry!
posted by jamjam at 4:08 PM on September 14, 2014

Best answer: I have recurrent TIAs, with no known cause, although it's suspected to be a bunch of minor things interacting badly. There are stroke risks across populations that show clear links like smoking, but on a specific person it can get hard to determine if there isn't a confirmable issue like a narrowed artery. TIAs are the same mechanism as a stroke, but the body recovers before any brain damage is done - the clot clears or whatever. I've had well over a dozen and there's no permanent damage yet.

My sister had one and that was it. It's increasingly suspected that people have TIAs way more often but because they resolve on their own, they get written off as a fainting spell or a peculiar migraine.

You should be cautious for the next three months, the highest risk period for another to occur and not travel where you can't get to a decent hospital easily. If you swim, you may want to skip it for a while or only swim with someone else there. If you have an infant or toddler, make sure your phone is nearby and be careful carrying the infant (I went to the ER for the first time after I had a TIA while carrying my child and fell, and stopped carrying her in a sling after that).

It's good to teach your friends and family the FAST process (stick out your tongue, repeat a phone number etc. Tell them that if you fail any of those tests to take you to the ER. Even if you feel better on the way, once you've had a TIA, you're supposed to go to be checked up so they can confirm if it was another one as that shows your current meds aren't enough to resolve the underlying causes.

In my case, we also drag a pen down my arm on either side to check for numbness because that's something my doctor asks about afterwards. I also write a clockface because it's easy to tell how quickly I'm recovering from the TIA by how loopy the clockface is.

It's also helpful to have a piece of paper in your wallet with your current meds listed, and a brief description of your medical history and the contact details for your neuro, so that if you get brought into the ER with another TIA or stroke, they can get that faster. My husband has it on his phone.

I've had the loss of speech and it's so bizarre. Language vanishes! It's like turning neanderthal all of a sudden. I have found taking an interest in how the brain works helps - if I've lost sensation on my right, and I can't see, then the clot was probably around XYZ point. The more I know, the less scary it is. Also, it helps with doctors to show an interest in the medical explanations and be curious - they like to teach, and a TIA in a relatively young person is interesting.

Migraines are an alternative diagnosis but usually you have to have a history of them. I do, but they're pretty different from the TIAs, and it took some evaluating and testing to rule them out.

Make sure to ask about long-term asprin use, if you need something like omeprazole to counter it. I take omeprazole because I have to take other meds for migraines and have ulcers int he family history or something - an elevated risk, but most people don't need them.
posted by viggorlijah at 6:16 PM on September 14, 2014 [1 favorite]

Oh btw the dye contrasting side effects are flukes - I've had multiple MRIs and only one gave me the awful side effects so it's not guaranteed to happen each time, you just were unlucky one time which is why I think they don't highlight the possibility because it's rare and inconsistent with patients. I made sure next time I had someone meet me afterwards with a hot drink and warm clothes in case.
posted by viggorlijah at 9:39 PM on September 14, 2014

Response by poster: That's interesting -- that it doesn't always happen. It was extraordinarily unpleasant. I felt like I was drowning. The tech's lack of interest in explaining anything to me didn't help. It wouldn't have been nearly so bad if I'd been expecting the sensation.

How were the TIAs different from migraines for you? How were they ruled out?

And thank you for your long and helpful answer.
posted by gingerbeer at 9:46 PM on September 14, 2014

TIAs for me have no warning ahead while migraines tend to ramp up over several hours with symptoms like light sensitivity and nausea and they're often one-sided or have a specific effect like the speech thing. TIAs wear off relatively quickly too, although I've found personally that I'm exhausted and a bit muddleheaded for the next few days, which other frequent TIA patients report.

There's a rare migraine type, hemiplagic migraines, which are one-sided like a stroke/TIA but they usually also have migraine triggers, auras and pain. Basically, a neurologist has to do a clinical assessment of your history and symptoms to decide which fits best.

I had a TIA two weeks ago where I was opening the fridge and thought "Oh, I feel a bit wobbly, perhaps I should sit down" and then I almost ended up pulling the fridge down on me when I fell backwards onto the floor. They just come on super-fast objectively, but when you're experiencing it, time feels quite slow. Someone who saw a different one said it looked like I'd been shot, just going down suddenly as I lost balance. They're not painful, they're just intense.
posted by viggorlijah at 12:37 AM on September 15, 2014

In 2010, I had a full-blown stroke. Like I fell down and couldn't get up and could not talk and lost consciousness and had to be taken to hospital in an ambulance stroke. Turned out I had a large clot in my carotid artery and they had to install a stent to widen the artery at that point. I had virtually no after-affects that were easily detectable, in fact when the neurologist did my post-discharge follow up, they had an intern try to guess by testing grip, co-ordination, and strength which side had been affected, and they guessed wrong. But in the months afterward, I may have had multiple TIAs.

This year I went to hospital with a four-day migraine, and it turned out that I had another large clot, this one a venous clot. Turns out that what had been diagnosed as arterial narrowing was, in fact, a congenital clotting disorder so rare that there is no name for it. After my first hospitalization, I had been prescribed statins and told to take asprin. Now I'm taking warfarin, and probably will be doing so for the rest of my life. So it goes.

Because the clotting disorder was not diagnosed, I would have episodes where everything just felt 'weird'-- not fully connected to reality, almost to the point of disassociation. These were, I believe now, TIA episodes. The after-effects were psychologically strange, like having a hard time making good decisions, and a certain amount of impulsivity. Sometimes I would feel like I was speaking through a fog, and I would word-hunt somewhat. It was never anything that was obvious to other people, but within myself I just did not feel right or fully joined-up to the world.

Another odd side effect was that I heard music differently. I noticed far more separation between individual instruments and heard some things in songs I'd known for years that I had never heard. Unfortunately, I also lost some of my ability to sing, which sucks as I was pretty good at it before, but now I just don't have the same range or the same ability to harmonize.

Before any of this happened, I suffered from migraines for almost 20 years. In fact, I had presented at hospital with migraine and stroke-like symptoms in my 20's but was only given a shot of demerol and sent home, because as far as they were concerned young women in their 20's didn't have strokes. Since the installation of the stent, I have not had another 'real' migraine. I do get aural migraines and some visual disturbances, though.

The TIA's are troubling and I hope you are getting good follow-up care. Please ask to be tested for possible clotting disorders. The fact that I was mis-diagnosed after my major stroke could have killed me. The clot that was found on my second hospitalization was majorly life threatening and required that I be hospitalized for nearly two weeks. I've accepted that the remainder of my life will involve taking blood thinners, but they pretty much ensure that I won't have another clotting incident.
posted by alltomorrowsparties at 1:31 AM on September 15, 2014 [1 favorite]

yes, that is the article. I know it is in technical language. If you have questions about it feel free to MeMail me.
posted by treehorn+bunny at 4:14 PM on September 15, 2014

Best answer: Gingerbeer, if you've had more than one miscarriage or you bruise very easily, you might want to ask for a rheumatologist or haematologist appointment to investigate clotting disorders. I'm diagnosed with one based on my history of miscarriages, bruising and the TIAs, which is why I'm on asprin and heparin, soon to switch to warfarin, even though there is no clinical result from testing. They used to have like six clotting disorders that could be lab-tested and each year now, they're discovering more variations because the research and awareness is growing. My doctor is assuming that I have something that just isn't researched yet. They may already have looked into this and concluded that you are unlikely to have a clotting disorder.

(Oh and birth control - if you're on hormonal birth control, including implants, you'll probably want to switch to non-hormonal)

And really - I want to emphasize how rare young strokes are without an underlying condition that they've already screened you out of (the mri, neck ultrasound and the upcoming echo and the blood sugar test). I was the only person on the stroke ward under 50, and I'm very much an outlier with my neurologist. It's a lightning strike, and your risk of a full stroke is about the same as dying in a car accident, and you can do a lot to lower your risk through a healthy lifestyle and if needed, medication. It's good to get answers medically, but especially for younger people where there's less data because they're rarer patients, sometimes there is no clear answer for why a stroke/TIA happened and you shouldn't waste time and money and effort into pursuing a medical diagnosis past the most likely causes, if this is a one-time event.
posted by viggorlijah at 6:06 PM on September 15, 2014 [1 favorite]

Response by poster: Thank you, everyone, for the information and stories. It's all helpful.

The echocardiogram this morning was interesting (to me, because I like seeing INSIDE my body) and they did a saline bubble test that was an odd sensation (and I could see the bubbles inside my heart) but didn't apparently find any major problems. I did, I think, convince the tech that he should go to Burning Man, but that's a different topic.

I'm increasingly wondering if it isn't an atypical migraine rather than an atypical TIA/stroke. I'm looking forward to meeting with the neurologist to see what she has to say.

More stories and information welcome!
posted by gingerbeer at 8:58 PM on September 15, 2014

Best answer: I had similar very short speech-aphasia that was diagnosed as atypical migraines because the speech issue was accompanied by mild vision distortion so the issue encompassed both sides of the brain. I haven't had the speech issue again but I have noticed a couple vision issues as well as fogginess that my neuro and gp told me are migraines. I could retrospectively diagnose these foggy migraines with little to no pain over my whole life. My GP says that given my age, mid 40s, that hormonal issues may be at play and prescribes basic migraine avoidance treatment (trying to avoid triggers, etc). My MRI showed some minor details that can be attributed to lifelong migraines. It seems to be that the migraine over TIA diagnosis is based solely on (1) both sides of the brain being involved and then confirmed by (2) my self report of periods of fogginess and sensory overstimulation to sound and light now retroactively being diagnosed as migraines. This happened about 6 months ago and I'm not sure how to react to a migraine label being placed on how I have operated my whole life.
posted by RoadScholar at 5:06 AM on September 16, 2014

Response by poster: Today's visit to the Emergency Dept resulted in a diagnosis that is leaning more towards atypical migraine than TIA, so thanks for all of the responses on that topic. I see the neurologist tomorrow, so hope to know more after that.
posted by gingerbeer at 5:29 PM on September 16, 2014

Response by poster: Update to the update -- consistent with what many of you suggested, I've now been diagnosed with an atypical migraine. The neurologist was really thorough and that was her primary diagnosis. Then it turned out that my dad has been having very similar migraines for the last few years. So, atypical migraine it is.

Thank you for the answers and stories. These things are always better with mefites to turn to for advice.
posted by gingerbeer at 9:23 PM on September 20, 2014 [2 favorites]

I know this question is resolved, but I just want to throw this out in case there are others out there curious about these TIAs. My little sister has moyamoya disease. She has had dozens of TIAs, particularly in the beginning before her diagnosis where her legs would give out, she would shake and fall, grow numb, have absence-seizure-like episodes, and suffer serious headaches. She ended up getting bypass surgery (or revascularization) in another country after numerous neurologists at UCLA were stumped. It's an extremely rare, progressive disease, but I wanted to throw this out there for anyone who's concerned about repeat TIA episodes to consider the possibility and make sure to cross all your t's and dot all your i's when talking to your neurologist.
posted by doctordrey at 6:03 PM on October 29, 2014 [1 favorite]

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