I am having what seems to me to be a New version of TIA's! Any advise or anyone having the same problems

I have been having a different form of what appears to be TIA's. I am absolutely fine then I get acute onset of vertigo and when o say vertigo I mean like vertigo on acid everything is spinning so fast I'm look at the floor but somehow seeing the ceiling it's insane vertigo, anyway I generally have 3 to 10 seconds to get myself safe before I fall. The dizzy makes me naucious but no vomiting. I start loosing use or having extreme weakness n one side or the other, usually the left it usually subsides and I am mostly functional after words. I am having these multiple times a week out of the blue. I am having more an more difficulty with my thinking process and have barley been able to work. It is seriously effecting my income and demolished what little freedom I had. When I look online I keep ending up with various articles of TIA's in the stem area! I don't like the sound of that but I believe it's what is happening as a couple times it came on after looking around for something, turning my head. I also have developed a lesser range in my neck turning on my right side! I'm tuff and take things as they come but these are rather scarry and disturbing. My INR has remained in the 3.2/4.3 range as far as lab test show I still trying to get a coagucheck thru my ins I used to have one but ins changed and have not had one for almost two years. I am degrading quickly. Any suggestion? I have told my GP but I feel she has grown to used to me being weird and documents but no knew test of anything. I am tryn n to get to see by diagnostic hematologist he is the closest thing there is to a specialist and it's a 4 hour drive one way plus three or longer hour wait. By then I'm so exhausted I have to stay in a hotel and that plus food for me a driver makes it really expensive for me to see him but I know I have to find away. Any suggestions I am about 46 (memory so bad I don't know my age). Anyone have the same problems or answers for it. Last time was Sunday and I made it to the couch but was stuck laying with my left arm twisted behind me intil I could get my daughter attention. Usually I make a repeated banging and they know I need help had hard time finding a spot hard enough on couch to make banging sound but did find a way. My daughter is getting me and alarm bomb so getting attention when I need help will be easier. But this has to stop. Any info or ideas would be greatly appreciated. Thank u from sound rebel 71

18 Replies

  • I would get myself off to an emergency room, when this happens, but do NOT, drive yourself! Best option would be an ambulance. The worst thing that could happen, is they'll tell you you are fine. I do not wish to cause undo alarm, however, I can only share from my own experiences. I suffered a significant stroke in Aug 2015, it wasn't until after I uffered this stroke thatmy APS was diagnosed. Had I known about this, I wouldn't have wasted so much time seeing my GP for help, and tests, that showed nothing alarming.when, I was discharged from hospital I was given instructions that, if I felt dizzy to get to the ER. It is less effort, to be told you're fine, than to have to eat withheld potentially devestating complications that can take place in someone with APS. Like that old expression, "better safe, than sorry!"

  • I agree with above poster...get yourself to emergency dept

  • Hi again,

    It sounds like you have a TIA or mini-stroke. What does your Specialist of Hughes Syndrome suggest? I think you are not enough and stable anticoagulated.

    Try LMW Heparin instead of Warfarin. My best suggestion.


  • Thank you I will ask him about it.

  • personally, if I had symptoms like that I'd be calling an ambulance. I would guess you need a scan to check if you are actually having strokes - probably MRI. The symptoms sound awfully similar to a relative of mine who unfortunately got sent away from hospital without a proper investigation, then had a major brain stem stroke shortly after. Those have a fairly low chance of survival, he did survive but having seen what life he has left I question if I would want to if it happened to me.

    I could have ignored my TIA, slightly different symptoms, different area of brain, but if I had sat down for half an hour or so everything would have been fine. I wouldn't be on tons of drugs that make me ill, wouldn't have aps diagnosis, wouldn't be on here. But then I quite possibly wouldn't be here at all - life and APS would have thrown bigger strokes at me until I noticed or died.

  • That's scary to hear but thank you. I definitely needed to know that.

  • I do think you need to seek medical attention as soon as you can. MaryF

  • Thank u Mary, i will. I will post when I have been examined or and hopefully treated.

  • So? Are you ok?

  • Yes I did not have any episodes today. Thank you I guess i will have to go to ER or my specialist whichever comes first. Thank you very much for ur response and for caring. :)

  • After my last episode I told my daughters that I am learning to keep myself upright until I reach a safe spot. Which I saw as a good thing. But my oldest daughter told me that's not a good thing mom. That I can't just learn to adjust and go on. Which is generally what I say and do, that this was something I needed to see Dr Rauth about. Not just learn to adjust to it and go one living as best I can. And she is right I knew it when she said it. It's time to get serious about it and find out what is going on. I am getting to the point where I can't take much more physically and mentally. It breaks my heart that my daughters have to spend there time worrying about me. Weather they are at home or work. My youngest walked out of work last week because she could not reach me and knew I was home alone. I managed to contact her before she got home and she ended up going back to work. But it's not fair for them and it's what hurts me the most. I can deal with everything else but that. They need to live there lives but they can't because they are to worried about mine. 😢💔

  • Can you purchase a device that would alarm someone should you fall and need assistance?

  • Actually my daughter is going to order me a sound bomb. It's cute little thing I'm not sure if you wear it carry it or put on chain around ur neck but when I have a episode and someone is home I just have to pull a good sized pin and it make a very loud tone that gets attention. So I will have that when they are home. Just have to be more careful about keeping my phone with me and answering their texts/calls right away!

  • I agree with what you have been advised by my colleagues and the members on here. :)

  • Thank you. It always seems that going to the ER is what I need to do but neither hospitals in my town are not very good. So almost never go. But it looks like another trip is probably in my near furure. Plus one to my hemotoligist. I love him but hate the 4 hour drive,each way. Plus the extremely long wait time. But he does his best he can't help that he is the best dr around. But without him I would be long gone by now. Thank you for ur reply.

  • Hi again,

    Yes, I have also two girls and it is very important that they do not have to take care of me and be afraid that something will happen because I do not know how to look after myself in the best way.

    You must try perhaps with the help of your daughers to get a Specialist (one who understands that you must be anticoagulated at a steady and high INR-level, if you use Coumadin) or who could put you on a LMW Heparin-trial if Coumadin does not work well with a lot of bloodtests and selftesting. You need someone who understands what this illness is about - too thick blood!


  • Thank you for your time and advise.

  • Hi, just read your post, I find great support from this site, knowing Iam not alone. I had a stroke and heart problems within 5 months prior to being diagnosed with APS. I have also experienced what I thought was Tia each time diagnosed enlarged spleen and high infection of undiagnosed case. I have no medical knowledge but think each time needs recording not only for treatment, but for record, I worry Iam being a "pest" but sometimes the bits make a full picture.

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