New type of stroke, well new me anyway. - Hughes Syndrome A...

Hughes Syndrome APS Forum

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New type of stroke, well new me anyway.

SoulRebel-APS profile image
13 Replies

Recently I have had 3 or 4 events were everything is fine one second and the next the room is spinning at an amazingly fast rate to the point that lookin at a door I see the ceiling and room spinning almost upside down, then seconds later I start losing strenght and sensation on my left side, has not affectted my right side yet. If im sitting up I will have to hold one to something with my right hand to keep from falling over. If I am standing I need I need help to to couch right away or I will fall. The first experience with this once I lost use of my left side then the spinning slowed and stopped and I just had to wait out the TIA. The other episodes have not been as extreme lasting less than a cupke minutes before the feeling and most of mt strenght come back. I am assuming that this is just a new version of TIA than I have experienced in the past. Past stokes would sometime include dizzyness and nauciousness but dizzyness never close to this extreme. Am I correct in it being a TIA? Thank u for your time.

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SoulRebel-APS profile image
SoulRebel-APS
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13 Replies
Manofmendip profile image
Manofmendip

Hi

We are not medically trained professionals on here and cannot give you the advice that you ask for.

However, you should see you GP or go to the ER as soon as possible to get this checked out.

I have experienced momentary dizziness and changed sensations/strength that has taken a while to clear. Prof Hughes referred me to an Audiovestibular consultant colleague of his, who explained that the dizzy spells that I was getting were due to transient ischaemia in the tiny blood vessel in my inner ear.

Dave

MaryF profile image
MaryFAdministrator in reply toManofmendip

Yes SoulRebel-APS Dave is very experienced in symptoms like this, and you could mention what he says when you visit the GP/Consultant. MaryF

SoulRebel-APS profile image
SoulRebel-APS

Thank you for responding and for sharing. :)

Lure2 profile image
Lure2

I can only answer what I have experienced. I had a lot of neurological symptoms but are now properly anticoagulated.

My memory is however not so good so I do not remember just now if you did find a Specialist of APS and could get your anticoagulation to work properly.

It sounds as you still have a lot of what I would call TIAs or migraine/vertigo/dizziness-symptoms. They are very typical for APS.

We are no Doctors here but we know what we have got through and what prof Hughes and our own Specialists have told us and also what we have read and learnt from other members on this fantastic site for APS.

Kerstin

SoulRebel-APS profile image
SoulRebel-APS in reply toLure2

Thank you Kerstin. My short term memory is shot. I put reminders in my phone to take my meds. I can't evem remember to take my narcotic pain relievers, obviously not addiction here. I have an alarm that goes off at 8.03 a.m. to remind me. An as I have a odd sense of humor the alarm says, plz excuse my language her, it says "Yo dumba** take ur meds". I feel accomplished if I take them before my phone reminds me. Thanks for the advise. I haven't been able to find a specialist anywhere within 400/500 miles of me. I advised my gp that everyone on this site is saying gota be btwn 3-4.5 so we are working on getting my levels up. She is great she understands that just because im not a dr doesn't mean I couldn't habe been one in 2nd grade my IQ tested about 160 of course after a zillion strokes some days im lucky if I can walk and chew gum at the same time. Anyway she is all for raising the INR as I continue to have TIA's and other symptoms. I can't thank you guys enough for the vast knowledge of information and understanding that you all have and share. Thank u thank u thank u

Lure2 profile image
Lure2 in reply toSoulRebel-APS

I suggest you ask for a trial of LMW Heparin instead of Warfarin. If you have to have Warfarin you must stay at that level that reduce your symptoms. Does not work. Does it? When did you have your stroke?

Perhaps you GP can help you with that.

I only want to help you as I have had your symptoms and remember quite well how I felt. Ofcourse we know that we are smart when our blood is thinned and when we can think normally (or almost). Did your read "Sticky Blood Explained"? It is a fight before you get where you should be.

I also know that we need an Expert who knows what APS is and to give us the drugs we need to feel ok.

Kerstin

SoulRebel-APS profile image
SoulRebel-APS in reply toLure2

Kerstin, no I haven't read the book its not available in town an I keep forgettn to order it. Thanks for the reminder I sent text to my oldest daughter to make sure it gets ordered. She is 23 and helps me so much she will make sure I get it. I had been doing pretty good but I have had I think 5 TIA's, that I know of as most happen n our sleep, in the last couple months. That's y I joined I had one in Sept. 1st and it took me a month to get back to my normal messed up functioning self. Usually im over one within a week week and 1/2. So that one actually worried me. Im that idiot that doesn't go to the ER when I have one but I think I will next time because I want a new MRI of my brain, make sure its still there. Lol I know not smart not to go but as long as symptoms are gone or going within 30 mins I don't go. They can't really do anything for a TIA its an agreement I have with my dr. Sounds insane but I would rather wait it out at home if doesn't get better I will go. The quality of the local hospitals is not very good. I am tryn to get my inr up im taking 13mgs plus 75 of plavix daily so should be close to goal now cant check until next week. I am not currently symptomatic so I should be there orclose. Last inr was 2.2 on a 11 & 12 rotatrotation.

SoulRebel-APS profile image
SoulRebel-APS

Thank you Dave. I live in US so Prof. Hughes consult isn't going to happen for me. Though are symptoms are a little different I beleive it to be a TIA just different from past ones. I guess my body likes to changes thngs up now an then. There isn't even a Coumadin clinic within 200 miles of where I live. But im going to asdsume it to be a TIA and document, in my phone as always, then I can talk to MY GP when I see her. She is out of town she travels o much and a couple times a year to England I suggested she get in on one of Prof Hughes talks. Just waiting for Mary to say when the next one is figure u never know on of her trips might be the right time. She was there in October but we didn't know about Prof. Hughes classes/talks at that time.

terrim profile image
terrim

Hi

It sounds to me like the experience I have with labrynthitis which is an infection of the middle ear. This is usually a viral infection but you should see the doctor as they can prescribe something to alleviate the symptoms. The other advice is to drink plenty of water. I get the headache too and sometimes numbness in my right hand. In fact I have it at the moment but it only seems to affect me at night when I'm tired. Last time I had it ! It was much worse and I had to be off work as it is dangerous to drive.

Hope you get this sorted soon it is most unpleasant and rather like sea sickness. In fact it can make you feel nauseous.

daisyd profile image
daisyd

I had this before I was put on Warfarin/ clexane please make sure you see a Doctor as soon as possible

I wish I had made a bit more of a fuss about it, don't just get told it will get better soon, I wish I had I wouldn't have all the problems I have now

Get to a hospital emergency by ambulance if this comes back

GinaD profile image
GinaD

Occupational or physical therapy can be very helpful in getting function back after strokes. Particularly with balance issues.

GinaD profile image
GinaD

Also, many of us have been documented to have some sort of food allergy which contributes to the APS symptoms. You might consider investigating whether a functional medicine practitioner is within reasonable driving distance. If you do have an unidentified food allergy then finding and making this connection with a change in diet can make a huge difference.

SoulRebel-APS profile image
SoulRebel-APS

Gina D, I do have a serious problem with abdominal bloating. I hate it because I tend to look rather pregnant or just plain fat. I have never been one to store fat in my abdominal area it was always the best part of my body. Its been suggestedbon this site that maybe I have developed a glutin allergy. But im pretty sure its n just about everything I eat and wouldnt know how to go without it.

thank u

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