HEADACHES: Have had a really sore... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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HEADACHES

14 Replies

Have had a really sore headache for the last couple of days but woke up this morning and its better but have a numb feeling down my left hand side of face as if I have just been to the dentist and had an injection !!! Waiting for my face to defrost!!! my hearing is effected feel like its blocked - What is this ? Its as if the headache has moved to the left hand side of my head now - Has anybody else experienced this ????

14 Replies
emmaj profile image
emmaj

I had that a couple of weeks ago - my jaw locked too - it was just like my face had been anaestheitised but horrendous pain for about 6 days, radiated down my cheek head and jaw-even my gums were weird. Ive heard migraines can cause these symptoms,but im on migraine tablets. and I dont know that they can last that long! My eye pain started 14 months ago that was put down to a stroke - but it was nothing like that - though all these weird things happen since then, I would get checked out, though I didnt because im that sick of appointments and new things going wrong that i just put up with it! A recent dentist appointent diagnosed me with TMD - could you have that ruled out too? Hope your better soon xx

tassie profile image
tassie

Better not to second guess. Go get it checked out

MaryF profile image
MaryFAdministrator

Hi there, I think a swift check up would be a good idea, then you can get to the bottom of it, we have to check detail with this condition. Mary F x

in reply toMaryF

Hi Mary, Yes going to see Prof Khamashta on Friday and will ask the question - I will let everybody know what the answer is if there is one !!!

KarenOR profile image
KarenOR

I suffer from head pain day in day out, I lose the feeling in my left side, my headache is worse when I stand or sit for to long my eyes go blurry too.. Get checked out. Doctors look at you like your making it up which is not helpful. One doctor told me I was recovering from a hangover and blocking a bed, the cheek I had not drank for over a year and then I did not drink enough to gain a hangover. Asked him to take a blood test to prove I had a hangover, as the alcohol would show up in my blood. He never did say sorry and he was teaching other doctors, think the teaching was how to be a poor doctor.

Manofmendip profile image
Manofmendip

Hi Julie-Anne

I get this kind of thing when I get my 'funny turns' that Prof Hughes says are TIAs affecting the basal area of the brain and my inner ears, probably caused by platelet clumping, which makes the blood sludgy. He has referred me to Peter Savundra at the Portland Hospital, who is an audiologist, to give an opinion on why my hearing is affected by these events.

As Mary said it is important to get this checked out. Are you on anticoagulation? Are you being looked after by an APS specialist? Where are you located? Do you see Prof Hughes?

Best wishes.

Dave

1818hst profile image
1818hst in reply toManofmendip

Dave, I read your post with interest. Do you get these even if you are on warfarin and have a reasonable INR level? Would appreciate knowing.

Thanks.

Manofmendip profile image
Manofmendip in reply to1818hst

Hi 1818hst

When I was on warfarin for the first 7 years all migraines stopped, unless my INR dropped below about 3.2, then I would have dizziness and a return of migraines. However, Christmas Eve 2009 I had a classical migraine - prizmatic sprading patterns in the eyes, followed by extreme headache, numbness in various parts of the body unsteady gait, tingling and a real sense of being unwell. I Feb 2010 I started to get the first of my 'funny turns', which are a sensation of being pushed or turned or furniture suddenly moving etc. The 'classical migraines' were stopped by the addition of 20mg of Amitriptyline per day but the funny turns continued and Prof Hughes has moved me from Warfarin onto Fragmin shots 15,000IU per day. The funny turns now seem to come in clusters, lasting upto a week, followed by a couple of weeks remission.

Best wishes.

Dave

in reply toManofmendip

Yes, on Heparin for life 120mg daily Being looked after the wonderful Prof Khamashta at St Thomas - I am located near Warwick in the West Midlands but unfortunately, I have to travel to London to get advice and care as where |I live nobody seems to know anything about APS I have to tell my GP what it is !!!!!

pluto5 profile image
pluto5

Yes I agree, get it checked out. I get this and numbness down my leg and feet but that is from strokes. Could it be related to circulation?

It sounds like what I experience when I have a low INR and havingall tia's and circulation problems because the blood starts to get sticky an clotting. I think it's important to go and see a dokter when this is happening to have it checked!!!

x Ann.

APSdsntHaveMe profile image
APSdsntHaveMe

This could be a lot of things. When I had spinal fluid build up on my brain which is called intercranal hypertension I had the worse headache then my left side started to get weak. I couldn't here or see very well. My arms were weak and so was my leg. Doc kept telling me it was a sinus infection until I starting vomitting and almost went blind. I was in a trauma room for 5 days while a team of docs called all over the country to figure out how to treat me. I wound up having a spinal tap. There is only suppose to be 20ccs of fluid at any given time. When did the tap there was over 100ccs of fluid. Over the next few weeks I had 5 taps with a total of 135cc removed. Get checked don't take chances I almost lost my eye sight.

anje profile image
anje

I have this problem on the left side if a migraine is trying to develop. Also on the left temple which is where I had 3 TIA's. It feels as if the blood isn't flowing through properly. I have vascular/arterial disease and I think it's all tied up with this.

1818hst profile image
1818hst in reply toanje

Hi Anje, were you an any anticoagulation medicines when this happened to you? Best.

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