Help! @IanM "Whole body TIA" What is that?

I’ve never felt so physically ill in my life. Penciled in diagnosis "whole body TIA. Has anyone heard if this? Briefly my whole body just gave out. O2 was dropping. Systolic was stable but diastolic was all over the place. Hospital mystied. To discuss case tomorrow and try and come up with something if that diagnosis seems wrong. I’m back home and all has stabilized again. But I’ve to do nothing but rest just now. Will get a phone call tomorrow morning. Any ideas? Can’t find it online, maybe has another medical name. Thanks, Regards, Ian.

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Holy Wow! I am completely stumped on that diagnosis/description!

Keep in mind, I am not a medical professional. I wanted to let you know someone is here as soon as I saw your post.

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You must be very worried and that will not help. Please rest as calmly as possible, your body will need that, most especially your brain.

I did have eschemic strokes all over my body…actually embolic, from a bacterial infection (sepsis). I know that is not the only reason they happen but am not certain what other issues cause them. Mine were in different areas of brain, spine, liver, spleen and kidneys. My heart was the cause of them going so many different places as it pumped that infection through my blood stream to all those areas. The good news is, I am still here, and able to do so much I was unable to before. You will be in my thoughts and prayers and I would like to hear back from you when you are able.

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@IanM

S**t. I’m so sorry!!

I can’t even begin to try and help with a diagnosis I’m afraid :cry:

My BP issues at the moment are weird too. but I have been told that as long as Sys is over say 100ish then don’t care even if it’s up to 160 or so. but DIA is more important - what has yours been fluttering between if that’s the right phrase?

Mine is between 90 and 115… yesterday average was 150/99. That’s at least below 100.

I was watching a medical thing the other day and they said lower than 75 is concern?

Just rest!!!

I’m trying but clearly not succeeding!! I’m watching south park…

May the great polar bear in the sky watch over you!

Here is a picture of a polar bear catching a seal to cheer you up

Polar Bear is hunting seals | POLAR BEAR ON THE HUNT.......😳 A hungry polar  bear is ambushing plump seal. Polar bears rely sea ice to find and catch  most of their prey.

:polar_bear: :wink:

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@IanM, Put that way it must sound pretty scary and I’m so sorry you are going through this. I tried a few searches and came up with nothing either, like @DeAnn, I’m no expert either.
But I’m guessing your TIA might have occurred in the brain stem because that would affect heart rate, breathing and blood pressure…a temporary disruption to the blood supply to the brain stem.

In the mean time do as the doctor said, rest and try to relax because looking into this and trying to self diagnose isn’t going to help your condition…as hard as that might be. Good luck with tomorrows phone call, I sincerely hope all goes well for you :pray: You can recover!

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Gosh Ian like the other folk I’m concerned for you

I guess anything that develops requires an air trip to Inverness?

Like the others I couldn’t find much online other than the unsurprising notions that I TIA or stroke will physically affect any location in the brain or is DeAnn says actually the body - and locked in syndrome which is the other word for whole body immobilization is one of the potential effects. There’s a lady who isn’t on here called Kate who had whole body locking syndrome and is now back running (hills or marathons don’t remember) and working and all sorts of things and I think strider / carol had overcame it.

Emeralds suspicion that it was one affecting the autonomic nervous system sounds the most plausible - from a lay persons knowledge base

Have you said any time seriously what the cause of your original stroke was ?- I don’t recall - but things like AF, cholesterol & clogged vessels, PFO, anything that is an underlying trigger that isn’t removed has the potential for new events - and then there’s just the whole overriding complexity that is the ways in which funny things can happen

Deffo a time to take things easy. Maybe enjoying a view with some breathing exercises and meditation?, Also take your meds and (get someone else to) assertively advocate for your rights for diagnostic and preventive actions? - You’ve paid for the service through taxes forever more now a ‘claim’ must be honoured

Fingers crossed for you.

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@IanM sorry to hear you’re feeling so rubbish. I’ve never heard of whole body TIA but no expert. It sounds very scary for you though. As everyone else has said take it very easy today & wait tomorrow’s call where hopefully you’ll get some answers.

Try not to worry in the meantime (like it’s that easy hey).

Best wishes & good luck for tomorrow’s call.

Ann x

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@DeAnn. Thanks for that. Kind of you to reply. I’m sorry all you’ve gone/going through. Had more tests a few hours ago. Still the same diagnosis pencilled in. Drs head scratching. Going to start from beging (I’ve already had 4 TIA’s). Should get a phonecall tomorrow to get Doppler on carotids and CT brain, to recheck nothing was missed in last ones. Physically much improved today. Body feels battered but it’s not uncomfortable. diastolic is reasonably stable as is oxygen. As you said, I’ve just to rest. That’s what I get for offering to dry the dishes. I think I’d managed 4 plates. The change was just as though a switch had been pressed. So physically feeling so well and improving, to the complete opposite. Thank you for praying for me. Yes, God hears prayer through Christ. He’s been gentle with me.:slightly_smiling_face:.

Appreciate your reply. It’s one thing reading about something in a book but it’s only someone like yourself who actually been through it, that really understand. Kind regards, Ian.

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@KGB Hi there. I don’t feel bad now when I see your diastolic figures. Systolic was it’s usual, average 175 and stable. Diastolic was bouncing between 55 to 110.
Thanks for replying. It’s much appreciated. Glad I found this forum. Everyone is so understanding and encouraging. My own issues aren’t so bad when I see what others are going through yet make what must be an effort to help😊. Wish you well. Kind regards, Ian.

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That “as if someone had flicked a switch” is mostly but not always how a spacey odd not right, foggy your not clear thinking, etc comes on for me too.
Normally it fades away but sometimes it goes off like the flick of a switch as well

Glad to hear you’re feeling better

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How’s it going today @IanM ?

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@IanM not much to add and I second all the best wishes from our members here. I am a big believer in prayer and will pray for you this morning and that your doctors get to the bottom of your symptoms. Rest and recover my friend.
Derek

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@IanM Hi everyone that helped me last year and Hi to all those I haven’t met yet :slightly_smiling_face:. I was hospitised in Oct 23 after TIA number 7. Diagnosed with clot lodged in brain for 3 days. Made me bipolar (hypo mania) for nearly a fortnight. Boy, was I productive with boundless energy. I wouldn’t like it to happen again. TIA’s have reached 9 now with maybe a 10th yesterday.
Help someone!! Apart from once, my symptoms are atypical (ie they don’t conform to F.A.S.T.). I’ve been told (or my wife has) to hit 999 if a TIA hits. Problem, I don’t have any observable symptoms. I’m too embarrassed to call an ambulance in case all I have is a cold or similar. When I feel unwell it doesn’t register with me that it’s a TIA. It’s the next day when I try to get out of bed but I’m too “heavy” to make the effort to get up or my midriff muscle’s won’t lift me into a sitting position to put my feet on the floor.
Thinking back over the almost two years, 1) Temporary loss of being able to form words in speech 2) Sudden feeling of short temperness 3) Twice thoughts have sped up 4) Loss of most of sight in right eye. I can’t think of anything else. The examples given only refer to 4 “events”. The remaining 5/6, apart from feeling a bit off colour, nothing until I try and get up in the morning. Is there someone out there who faces the same dilemma :woozy_face:? What do you do or any advice? Apologies or writing so much. Regards IanM. (excuse “typos”).

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Hi @IanM
First is I actually think your symptoms are typical not atypical. See

Did ANYONE have classic FAST symptoms

Public and even the medical profession are misinformed by FAST to think it is typical and it’s not (given the empirical evidence above) - would be really good if the stroke association carried that message but they promote the old one :frowning:

My MRIs showed that I had had multiple undiagnosed strokes (silent) before the one that landed me in hospital and i shared experiences with you such as partial vision losses. I also sometimes had migraine aura but unlike you I don’t think the muscle weakness affected me - there is a lot of migraine aura threads about maybe these are “a” typical early warning symptoms. Is there a day after feeling other people might call severe fatigue rather than after effects of a TIA?

Have you been checked for AF arterial fibrillation and PFO and diabetes and sticky blood? Is your BP under control are your iron and other blood chemistry parameters such as cholesterol under control?

In the first year post hospital I went to A&e when I felt like that. Now I feel 13 hours in a corridor to be told “don’t know what it was, don’t know why it was, could have been the TIA, take aspirin for 28 days come back if it happens again” has more steps in it than I need so I don’t bother going to A&e

If you can rule out that you’re suffering fatigue and you’ve had all of the tests that repeatedly asking what tests are relevant and reading here what tests other people get, and you’re taking your meds and they are keeping your parameters as close to recommended as can be then in my unmedical opinion the best thing is to make the most of life and maybe employ some anxiety management techniques for what is always a worrying combination of feelings

Maybe others will come along with more insights :slight_smile:
Caio
Simon

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@IanM Morning Simon. Just a quicky just now and I’ll be back in the evening. The Spring Edition of Stroke Matters made a passing reference to atypical which was a relief to me. I wrote to thank them and ask d if they would help me draw up a small list of indicators. They wrote me back but there was no reference to my query. I haven’t progressed it yet other than my own possibly/maybe/ better not 999/ as my wife has been seriously ill. There was also reference to a professor who was working on adapting a saliva test for suspected concussion victims to a test also for stroke.
Need to shoot off now and catch up later. You know what I mean when I say I’m glad to find I’m not the only one in a quandary :slightly_smiling_face:. Hope someone from the Stroke Association are reading. Kind regards

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@IanM i think that some of that sounds very much like FAST symptoms and if you suspect a TIA you should always call 999 as you never know if it will turn into a full stroke. Most people’s TIA symptoms will have passed by the time they are seen but that shouldn’t stop you getting checked. As i was advised by my GP recently, after a TIA, that as a minimum they want to know about it the next day if i haven’t been to A&E.

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I know it’s a pain in the proverbial, but, if you suspect a TIA call 999!
Embarrassment won’t save your life but the paramedics can!
You say you’ve 9 maybe 10 TIA’s since Oct 23, that should be alarming enough shouldn’t it? It’s a sign that another one may follow and you’re at a high risk of having a full, life-threatening stroke in the near future? At the very least you should contact your doctor next day to have these events thoroughly investigated, but the paramedics should really be the one you call as they have the means to save your life, not your GP, and it’s what they are there for. Let them take you to hospital, you may at least get further scans and investigations to ascertain why you are having so many TIA’s. If you had a TIA right in front of your GP, the first thing they will do is call an ambulance and notify the hospital the hospital.

@EmeraldEyes Hi there. Thanks for that. It’s 10 TIA’s since Oct 22. Sorry if I misled. :slightly_smiling_face:. I appreciate what you say and will think about it now that I know I’m not on my own. Doc’ and I had chat and basically all that can be done medically has been. I was considered too old at 66 by a locum for an “endthingamy” on my left carotid. GP not happy but has done what he can.
If able and aware, I’ll swallow hard and do as you say. My wife is supposed to hit 999 but as I show no symptoms 95% of the time, she doesn’t know.
Thanks for taking the time to write. Kind regards @IanM.

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I think you need a second opinion and your GP could arrange that, certainly considering your GP was not happy with the conclusion either. The GP won’t offer or advise you, you have to ask for a second opinion if you want it. 66 is not too old for a Carotid Endarterectomy, unless you have other risk factors which were taken into account when the locum came to that conclusion.

But I’m not a medical professional or know your medical history or physical condition, so don’t take my word as fact…but I still say 66 being too old is hogwash and more a cost cutting exercise if it can be gotten away with.

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@EmeraldEyes Hi there. Another TIA this morning. Sudden two quick stabs of pain at top centre of my head. Then all was well, I thought. I’ve had these maybe 4 ish times a year. Got up , made my breakfast. Then tried to read my emails. My right eye which is almost useless felt very “strained” and uncomfortable. I pushed on for about 4 hrs when “strained” feeling suddenly disappeared. My own diagnosis - TIA. I waited until tonight having just been relaxed in my chair with no thought of moving, all day. Finally, as encouraged by yourself, I thought dial 999. All my obs’ were fine just having to think a bit about how to walk. A little “spaced out” and hands feel swollen. Thinking just a little sluggish. Paramedics put me in phone to hospital. Poor line. Dr didn’t believe I’d had a TIA despite me saying I was atypical. He was sticking to FAST. Paramedics were too but understood when I explained what atypical was. They also appreciated (can’t remember now what I was going to say :slightly_smiling_face:) that I was a Consultant Neurologist with regards to my own “typical” symptoms. I’ve to hit 999 again if any change overnight or tomorrow. Put my mind completely at rest with regards to hitting 999. No complaints about treatment. Dr was talking on a mobile with poor signal and doesn’t know me. Paramedics? Full marks!! I was given the opportunity of getting taken to A&E but was happy to stay at home as so far matters are following their usual course.
Apologies to anyone who has replied to my original question and I haven’t acknowledged @IanM.
IF ANYONE HAS THE SAME RESERVATIONS ABOUT HITTING 999 AS I HAD THEN DON’T WORRY. THAT’S WHAT THE EMERGENCY SERVICES EXPECT YOU TO DO. :slightly_smiling_face:. @IanM

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