Sticky Blood-Hughes Syndrome Support
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spent past week readmitted into hospital!!! still not clear cut but good news no stroke ? vascular phenomenon

Hi Guys,

From probable TIA's adding aspirin 75mg ontop of warfarin for exisiting APS now under a neurologist who does seem to be exploring all options. From discharge after overnight stay and negative ct scan on 23/2 events so far with readmission on 29/2 - discharge 7/3...

but this all may have been spurred by warfarin poor control from eating grapefruits!! story so far:

Cruise 27/1 - 3/2 flight and cruise inr 2.3 so below range but thought at least can safely have odd glass of vino and take precautions with flight... lush food and healthy options... to keep wt loss in mind i ate fruit and yoghurt every day which included half a grapefruit at breakfast felt fab...

@ mon 5/2 saw my personal trainer then walked dogs received call from lab inr 8.5 verdict alcohol induced as admitted to glass of wine at meal time no binge tho also odd no symptoms i felt so well

@ stopped my warfarin for 2 days inr 2.2

@16/2 had curtain like visual disturbance heavy legs developed facial neuralgia temple pain on left and unequal pupils left being sluggish light headed

@ resolved after 5 days GP did tia referral now off sick from work but very stressful as employer decided to say if i m having tia i could make a mistake at work!!! long story but nhs trying to save big bucks i been loyal for 24yrs on a busy ward and at no more risk of error than anyone else working under such pressure with out breaks!! so as you can imagine stress levels high!!

@ felt good again inr 3.9 21 - 23 feb then first admission on 23/2 as developed sudden global weakness whilst stood up, fast heart rate discomfort in back warmth feeling also that travelled down back of left arm legs weak again feeling heavy then developed pins & needles to left hand which went white cold and swollen affecting grip - discharged after another event on the ward 24/2 very scared my thoughts then was it cardiac as pain in back left shoulder blade area ecg sinus tachycardia

@ home but this time lightheaded ness worse - more dizzy which persisted over the weekend despite aspirin & feeling as though something left of neck i guess in carotid artery worse when led down had to keep swallowing to clear

in currys shopping on 29/2 ignoring dizziness and started getting pins and needles again warmth back ache arm heavy hand went cold again left only went straight to A&E ecg left bundle branch occlusion sinus tachy had odd numbness now left side of chest band like feeling imp stroke so admitted for investigations:

Now aware very tachycardic with simply walking from loo to my room feeling exhausted ecg then showed 1st degree AV block sinus rhythm as felt awful & dizzy feeling

went on to develop discomfort in left groin inr 2.8 leg felt odd even weak bp went sky high 180/100 i guess anxiety as felt scared had clexane 140mg plus 6mg warfarin next day leg felt dead

mri of brain delay had only on monday as backlog of cases and mri down over weekend so now left hand totally resolved swelling went down there was talk radial pulse weaker in the left compared to right but as per doctors only saw it hours after event and recovered same happened with leg weakness resolved

@ impression await full report of mri but no stroke seen left hand ? raynaurds phenomenon secondary to vasular phenomenon inr target to be 3.5 range 3-4 stay on aspirin to protect from poss tia's to be reviewed in a few weeks. cons has drug toparamide as an option but said to reduce amytryptylline slowly start duloexpin - spelling error! (specialist nurse suggest as clinical trials shows help with fibromyalgia) so consultant suggest trying that drug first....

now home with hubby and rosie will take things steady as head still not right ;-)) any thoughts??? thank you hughie family i said to consultant the forum is a life saver!!!!!

lots of love

kathy xxxxxx

2 Replies

Hi there what a time you have had and are still having, and it is very useful this detail. Is it possible you have had a virus to add to the circus of all this.. it does sound as if many factors contributed and then caused snowballing effect autoimmune wise. I hope you feel better really soon, and when it calms a little we can have some more about this. Sending you best wishes. Mary F x


thank you Mary xx


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