Update on my last blog - Stroke sympt... - Hughes Syndrome A...

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Update on my last blog - Stroke symptoms but not a stroke

janekins profile image
7 Replies

I'm pleased to report that yesterday afternoon, 2 1/2 weeks after losing my speech it came back! The pain in my head disappeared and I was able to speak in sentences, losing the slurred words that I had struggled with and being only able to say single syllable words! My throat was a bit sore but I can't tell you how good it was to talk properly!!

And then guess what !! During the night the pain came back and this morning I couldn't say anything again. This evening I can speak slowly and my voice is weak. Luckily Ive got a rheumatology appointment on Thursday so hope they can give me some answers.

Can anyone on the forum suggest anything please!

Jane

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janekins
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paddyandlin profile image
paddyandlin

Hi Jane,

Sound horrible what you are going through but it could be either migrains that are effecting your speech or your having TIA's(mini Strokes)

Either way go see the doc and get it checked out ASAP.

Let us know how you

get on

Paddy

janekins profile image
janekins in reply topaddyandlin

Thanks Paddy. It's completely different to any migraine I've had before!

I rarely get migraines and when I have I'm usually lucky that I find my eyes going funny and can take a couple of paracetamol and it clears very quickly. This pain is on the top left side of my head, sort of halfway between my ear and the top of my head. I've had it there before but its not lasted very long,only an hour or so. This will be 3 weeks on Thursday and I spent 9 days in hospital. its almost as if there is pressure in my head pressing on something to do with my speech. When the pain went I could speak!!

What are the symptoms of TIA's? do they show up on scans? no one has mentioned TIA.

Jane

MaryF profile image
MaryFAdministrator in reply tojanekins

Yes I second what Paddy is saying, keep us posted, and also there are plenty of papers around attached to the HSF site, if you need me to find you any, let us know!. Mary F x

RebeccaP profile image
RebeccaP

Hi Jane,

These were exactly the same sympthoms I was having and it took me all my time to tell people I did not have a headache it was like someone have a vice grip on my head between the back of my ear and the top of my head and each time it tightened the pain, numbness and speech got worse - having now been diagnosed with APS and spending 2 weeks in hospital on Heprin before I went onto Warfrin, the difference is great, but I now also understand that there are numerous types of Migranes that are significant to different types of illnesses and the one I was having, and I was eating Paracitamol, was the type that was associated with APS. I am on amatriptalin for the pressure on my head and most of the time it works, but from what I gather from the group is that the migraines dong go away, they may get less frequent, and less painful but dont go away completely

Good luck .

janekins profile image
janekins in reply toRebeccaP

Thanks for replying Rebecca.

Do you mean the paracetamol was affecting it too?

So your symptoms have improved since being on warfarin? The thing is, i've been on warfarin since 2000!

Sorry my comprehension skills have gone out the window since I got this!!

Im seeing the rheumatologist this afternoon so will try and get some more info and let you know.

Thanks again

Jane

RebeccaP profile image
RebeccaP

Hi Jane, no I meant that the Paracetamol did absolutely nothing for it when I was being told it was Migraine - I was taking 8 a day and still had the bad head.

My consultant told me that Warfrin is only used to thin the blood not treat APS so I am not sure what drug is used to treat APS.

I am a bit confused on that one myself - what actually helps/cures APS or does anything.

R.

WayneL profile image
WayneL

Hi, rebecca.

As most here will tell you, there is currently no cure for APS, just symptom management.

Warfarin is not only used to treat the symptoms of APS, but is given to heart [cardiac] patients as a means of stroke prevention post operatively.

Hope this helps.

Wayne l

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