visual disturbance light headed then ... - Hughes Syndrome A...

Hughes Syndrome APS Forum

10,351 members10,539 posts

visual disturbance light headed then unequal pupil... indicative of TIA but am on warfarin!!! to see neurologist...

kathyD64 profile image
15 Replies

Hi Guys,

Not been on here much lately have been working hard also doing my training with p trainer all was going well but still weight not budging!! had hosp app mon 13th saw both doc and nurse... mentioned a visual disturbance i had on 20/12 partial vision missing right of image lasted an hour returned later that evening. Headache 2 days later was informed i should have got it checked out but still with old gp so thought no point they think im depressed blah blah so continued xmas shopping....

another odd symptom i get ad hoc is a pulsating blood rush to both ears usually trigger by standing up from sitting position does anyone else get that?

this leads me onto yesterday had bad day in work no break busy busy noted pulsating in both ears several times then at home had coffee with colleague and general moan how awful work is decided to do lunch today so i went to text the girls once friend left... instant visual disturbance like a curtain came down but over both eyes lasted minutes but when i got up legs felt heavy really odd.... rang gp as only told on that monday i should report future events and i was told to go to eye hosp a&e. On route rang inr clinic as my inr had been 2.2 but today was 3.2 so at target... (did have an 8.5 post hol ? alcohol related no symptoms!! this was on 6/2 that quickly dropped to 2.2 after omiting 2 doses) so impression was eye vision fine my left pupil in the problomatic poor vision eye apparently was sluggish to light and larger than my right pupil... his conclusion would be TIA but i was on warfarin and he said if pupil still unequal this am i needed a scan

overnight left temple pain some facial pain so saw locum GP today, but had received email that evening saying from monday consult with rheumy doctor he wanted me to see neurologist due to visual prob in december... emailled the nurse to fill her in with evening events she said get app asap with neurologist and reassurred me now inr 3.2 am safe... felt unwell most of day nil major but dull ache my friend who saw previous evening said i did not look right to her and my eyes looked different but gp said pupils now fine no need for scan so am waiting for app...

been advised work is causing exacerbation of symptoms so to go off sick long blog sorry guys but has anyone experienced something similar

lol kathy xxx

Written by
kathyD64 profile image
kathyD64
To view profiles and participate in discussions please or .
Read more about...
15 Replies
Suzypawz profile image
Suzypawz

It is worrying isn't it when things start to affect things like the sight....hope you are improving?

&

OMG!! here I go again with the ' I'm getting that right now ' ....never thought it might have been to do with a TIA?!

On & off for a few days now I havnt been able to see out of my left eye? it feels like .... you know when you have a hair in front of your eye or your glasses have a smudge? it's like that? not mentioned it to docs or anyone until 5 mins before I read this!!! I had just mentioned it to hubby, he says the pupils are the same, I have just had a visual disturbance & a migraine that keeps coming back.

I just assume it'll go away..........

Hope you're ok & yours has improved x

p.s. I deleted this twice & re-wrote this because of silly spelling mistakes & leaving stuff out!!

kathyD64 profile image
kathyD64

Thanks Suzypawz for your reply. Yes am improving, rested all day so sure to feel better tomorrow and probably by the time i see the neurologist i forget so i must admit i tend to write my symptoms down cos like many describe here our memories arent the most reliable ;-) It seems so much harder to defirentiate migraine because of our complex bodies. What i described i was told it was not typical of a migraine but said the visual disturbance i had in dec could have been. I got a headache days after. It can also be a "cop out" to say migraine when they are not sure & seem to belittle our symptoms but then again, My old gp told me he took his wife to A&e when she was pregnant really worried she had had a stroke with a weakness and was amazed it resolved and the dx was migraine, until then both of them didnt realise how severe it can be.

Like u say it is worrying but the doctor said it is imp to get it checked out so i hope you get seen soon and hope you too feel better xxxx

ps like you i prob got spelling mistakes it takes me ages to write stuff these days i go over written work over and over must be our foggy brains!!

Suzypawz profile image
Suzypawz in reply to kathyD64

yep the mist never seems to clear does it ?!!!

Hope you are improving now....mines on & off xx

tim47 profile image
tim47

Good to hear that you are improving.

There seems to be an impression amongst many, doctors included, that you can't have a TIA if you are on warfarin, or if your INR is above 3.0. All I know is that my stoke man told me that I had three TIAs on the trot and I knew that in that period my INR was 3.2.

Whilst warfarin clearly reduces the chance of a stroke, I'm not sure that there is an INR level at which we can be absolutely sure of being immune from a TIA is there?

kathyD64 profile image
kathyD64

Thanks Tim for that... my inr target is above 3 last week it was 2.2 and yesterday when i had the ?tia it was 3.2. That was the impression from the opthalmologist it was neurological not an eye problem but said i should nt clot as on warfarin...hopefully the neurologist will shed light on this because it has happened now several times leaving me tired, light headed legs feel heavy with this pulsating blood rush in my ears aswell temple pain on the left and face pain on the left... i think because my original clots have been in the brain when i was dx initially it is quite likely my left eye has a weak blood structure due to previous damage... one very well informed rheumy i saw when i was in hosp last aug mentioned the theory of micro clots that are not detected on scans mri's he so far out of the medical profession seems very respected & totally agreed with my symptoms unlike other professions so i think you are right i know in particular yesterday work was hectic and i had not had a break so being dehydrated could have had an impact on the stickiness of my blood! cheers kath ;-)

daisy11 profile image
daisy11

Hi - the first thing I knew I had a stroke (TIA) was when I went shopping one saturday with hubby and said to him, I can't see out of left eye, it was though a grey blind was coming down, anyhow it lasted about 20 minutes and I went to the ER at the Eye Infirmary and by the time I got there it had gone and able to see. The consultant brilliant and he rang the Haem Ward where they knew me and they said to start taking Clopidgrel and see the consultant the following week unfortunately, alot of erring and that and it was ages before being put on Warfarin. He said he was going to send for MRI but he didn't and it was only the other team (Hept) who said he was going to do it - they are on the ball.

When my INRs low I feel strange out of it and tired etc, pulsating head. My INS is 2.9 need to be 3.5 ish but feel that the dept is not quite on top.

Anyway I am going on Monday to hospital for test.

Take care

D

pluto5 profile image
pluto5

HI there Kathy

I lost my left vision with my first stroke, but since then I often get odd visual disturbances. Sometimes I cant see first thing in the mornings but it only lasts a short time. I see colour from my left eye also when walking along. I frequently get shooting pains through the top right of my head which is nasty. All the time I am lightheaded which is a problem. I find too that with TIA's I get head pains and stroke symptoms for a few days before, and they last for nearly a week afterwards,although TIA's are suspposed to only last from 20mins to a few hours, When I've been taken to hospital by ambulance, they always take me to A&E, and at times I have been kept waiting for 4 hours before seeing a doctor. As for warfarin I wouldn't go on that but am on a different blood thinner. The reason I refused is because I have collapsed unconscious 8 times with strokes and do not want to risk falling and having a brain haemorrhage. That could be fatal.

I dont know if this is of any help to you?

......

pumpkincake profile image
pumpkincake in reply to pluto5

Hi Pluto...I noticed you have shooting pains in your head. I have these too and sometimes they are TERRIBLE. I have them in groups...i will get them for a day or so...and none for weeks and sometimes months. I have always worried about them...feels like an ice pick has penetrated my head...always in the same spot left side front. Has anyone ever told you what they thought this was from? I think my docs think I am crazy.

CountryGirl profile image
CountryGirl

Before I had a stroke and finally went on warfarin, I was having visual disturbances. I would loose vision out of one eye, vision out of half of one eye, every combination it seemed. I would have pins and needles in hands/ hand or fingers etc. Went to neurologist and he said that it was atypical migraines. I was placed on propranalol (beta blocker). It took a while to get over the horrible fatigue, but after about 3 months my body adjusted and that was nearly thirty years ago. The number of headaches that I used to get was greatly reduced. I have had no visual problems since. The down side is that I can never get my heart rate up, and I am pretty sure that that is why I can never seem to loose weight. Not sure if that is any help to you.

SueLovett profile image
SueLovett

I get visual problems as well. Sometimes it is like a freezeframe as though everything is stuck and I can't focus. I also get twitchy eyes and most of the time things are just slightly blurry.

I don't want to worry anyone but I am on daily Clexane injections but my Consultant says I am still having Right Sided TIA's. He has increased my dose but I am still getting a lot of the symptoms although my aches and pains have improved.

Hope you get some answers soon Kathy. You too Suz

Suzypawz profile image
Suzypawz in reply to SueLovett

thanks hun xx

MaryF profile image
MaryFAdministrator

Having read you interesting post, I am so pleased to hear that you have strong communication between the medics in your team - phew! Mary F x

kathyD64 profile image
kathyD64

Thank you for all your comments - they all help its good to share experiences. I saw my GP today as still very light headed which has been the case all over the weekend. Facial pains and temple pain persist but feel like altered sensation on the left - also early am woke up with dry left eye felt most odd and worrying checked it out my bottom eyelid was tucked into eye socket but what prompted to see gp was left eye now puffy also that side of face compared to the right. She did a tia assessment took bloods will refer to the tia clinic at the hosp where i work once blood results back. Also i just done a choose and book app earliest is 13/4 friday 13th!!! to see a neurologist... as it was the neurologist team who wrote up my case back in 1990 im hoping they will have a good understanding of aps because you here some worrying experiences others have had in getting believed about there symptoms - so i hope they will listen... once again thank you guys hope you are all well and enjoying he lighter evenings - spring is my best season, but do enjoy them all but dark days are miserable!! ;-) kathy xxx

paddyandlin profile image
paddyandlin

Hi KathyD64

I am glad you getting tests done and typical docs and appointmnets please do keep us updated on how things go.

Paddy

kathyD64 profile image
kathyD64

thanks paddy will do am feeling much better today light headed went yesterday inr 3.9 but still been advised to lower warfarin to 4/5mg alternate days instead of 5 daily... due test nxt week just hope it does not drop below 3!!! kathy

You may also like...

It's been over a year.

all of a sudden. Anyway. blah blah blah. I stopped documenting my days and odd experiences because...

Is St Thomas' discharging patients a lot at the moment?

APS and possible SLE, symptoms suggest both. And yet dr said bloods were inconclusive, advised me...

Constant daily Migraines

other than the odd visual aura if my INR drops below 2. For the last week I have had frequent...

Any success stories out there? Newly diagnosed.

haemotologist. Could this visual disturbance be part of this condition? They said my eyes were...

Optic Nerve Atrophy : Image one of Three

supply blood to the optic nerves ( both eyes) , are clotting. ( my INR dips - I can’t keep it...