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TIA ? on EDoxaban

kkatz profile image
12 Replies

I think I have had 4 TIA's or similar since December. Medical attitude is they shouldnt be happening if on anti coagulants. Anyone any experience of same? I am being referred to TIA clinic anyway but wondered.

For those of you that have had TIA's how did you feel first. I need to be able to explain how I felt. I describe it as nothing was working (in my brain not in my body) regardless of whether I had physical numbness or not ( one without & 3 with). Nobody seems to understand that & I am uncertain myself.

AS regards my AF I dont think I have had an AF attack since first diagnosed in August 2017. Nothing that I couldnt but down to overweight or climbing hills. So I suppose I am very lucky.

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kkatz
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12 Replies
10gingercats profile image
10gingercats

I have had 1 TIA and did not feel as you did.I had been doing on a very hot summers day and awoke with a clear awareness something was wrong and then in a split second felt lack of use in my and right arm. Mine was a tiny TIA but classic symptoms.

10gingercats profile image
10gingercats in reply to 10gingercats

meant to write dozing not doing!

kkatz profile image
kkatz in reply to 10gingercats

But what do you mean by clear awareness something was wrong ? How did you feel. See how bad I am at explaining. I said to the doctor I woke up & knew something was wrong before being aware of the physical things.Then she asked me how exactly did I feel. I seem to think dissociated fits.

I suppose they will do the various tests anyway.

10gingercats profile image
10gingercats in reply to kkatz

A clear awareness to me is a completely difference feeling to the way lwhich I would normally feel upon waking.That is the best I can do.

BobD profile image
BobDVolunteer

I think it highly unlikely that you had any TIAs whilst on anticoalgulants but I am sure that they will be able to rule these out following a scan at the stroke clinic.

dedeottie profile image
dedeottie

I have had 3. The first time every time I tried to speak I couldnt form the words and what sounds I could make were echoing in my head. My mouth apparently looked lopsided. This lasted about 3 mins and had no lasting symptoms. The second time, I lost my co ordination. I kept trying to pick something up and missing the handles. The third time was the worst, iI completely lost my speech and my thoughts felt disconnected. Half of my body looked as if it was floating away from me and I had migraine like visual disturbance. This lasted 5 mins. Again no lasting damage. I was not anticoagulated . I have now been anticoagulated for around 6 years and have not had any more TIAs. I was only 55 at the time so my GP said anticoagulation was not advisable. How wrong he was!

I agree with Bob that you would have to be extremely unlucky to have had TIAs whilst on edoxoban.

Good luck with your investigations. X

wilsond profile image
wilsond in reply to dedeottie

Huh,these GPs!! Mine also said i didnt need to be anticoagulated,even persuaded me aginst advise from cholesterol clinic consultant,then i had TiA at 58,one month later!

Glad wd are the lucky ones and dodged a bullet and now on protection! Best wishes x

wilsond profile image
wilsond

I had a TiA in november 2017,wasnt anticoagulated at the time ( thats another story) I became aware of numbness in my right foot,which turned into painful pins and needles,I walked along a bit trying to walk it off,went into a shop out of the cold,was very warm in there.My companion told me she saw my mouth droop slightly and i felt disorientated and too hot.Went outside and felt i needed to sit down,a chair was fetched and ambukance called.Paramedics called on mobile asked me to raise my arms,could I smile,could i repeat a sentence they read out,my name etc.

When i got to a and e they did blood tests,ct scan,neurological tests ie testing for reaction on bith sides of the body etc.Said assume it was TIA as id had AF day before and had 3 hour drive later that day.

I do wonder if you have not had AF for quite a while, if it is TiA ? I wonder if you are experiencing what some people here have described as brain fog as a side effect of medications?

I certainly get some of this.

I hope you get some answers from the tiA clinic.I had a follow up MRi in April,which I presume was ok as I have not heard anything back.

Best wishes

MarkS profile image
MarkS

Edoxaban reduces strokes rates but does not eliminate them.

The stroke rate in trials was just compared to warfarin and not non-anticoagulated people. The rate of strokes/TIAs was similar to warfarin. Warfarin itself reduces strokes by 64% (i.e. about two thirds) so we can assume Edoxaban is similar. That still leaves a significant chance of a stroke/TIA.

It would appear that edoxaban is not very effective for you. Edoxaban targets Factor Xa in the coagulation process, which is similar to Apixaban and Rivaroxaban. You could try Dabigatran, which targets thrombin. Or my preference would be for warfarin which is a Vit K antagonist. Then get a Coaguchek and test once a week to ensure you're in range 100% of the time.

Whatever you choose to do, I'm afraid you can't carry on getting TIAs as they do damage the brain, though symptoms appear to resolve. So that means a different course of action, which you need to discuss with your doctors. These are just suggestions as a starting point for discussion. And that discussion should be with a specialist such as an EP or haematologist consultant, not a GP or registrar.

kkatz profile image
kkatz in reply to MarkS

A lot of helpfull info Mark. I think the reason for Edoxaban maybe down to other problems I have including Hiatus Hernia & gastritis , I am reluctantant to take Warfarin as I spend 5 months away and the stabalisation & constant INR checks might be difficult .

The problem is how can you check edoxaban is working ? Is it reflected in the INR .INR was .93 in Feb , Taken after possible TIA in Portugal.

Again thankyou all for the input. Just waiting for the TIA clinic,

baba profile image
baba

Have you been tested for blood disorders? For example Hughes Syndrome/APS/sticky blood.

healthunlocked.com/hughes-s...

The GHIC Website:. healthunlocked.com/api/redi...

kkatz profile image
kkatz

Update folks .

I had to fight all the way to get to Tia clinic . Long story but took three weeks to get there,

The registrar still thought not TIA but seizures & referred me for eeg, Her boss said do an ultra sound on the neck. A week later and a day after Carotic endarterectomy I am now on aspirin as well as Edoxaban. Got nerve damage & hope it is temporary.

Good news though no AF through it all.(touch wood)

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