Balance issues

[rach1081985]

Just wondering if any kind of link as whem I shower I struggle keep my balance and sometimes whie out and about feel as I going to fall for no apparent reason... I've fallen. In past few times

[MaryF Administrator]

If this is s new symptom or more frequent, you must see your GP and or main consultant. Balance issues can happen for a number of reasons, including POTS, vestibular issues, B12 deficiency, low blood pressure, damage from disease etc etc, as we are not medically trained it is really important you seek help for this. I am sure many on here have had or do have similar symptoms, but we must go and get individually checked by a medical professional. MaryF

[rach1081985 in reply to MaryF]

OK it seems more noticeable now... Thank yu Mary ill go see Gp... What is POTS please

[MaryF Administrator in reply to rach1081985]

Here you go: nhs.uk/conditions/postural-...

MaryF

[rach1081985 in reply to MaryF]

Thank you x

[daisyd]

My balance issues were helped with hydroxychloroquine from Zentiva, but everyone is different

Good luck at the Doctors

[rach1081985 in reply to daisyd]

Thank you very much x

[Fra22-57]

Thought all APS related.I have poor balance which will make me knock into things.Sporting black bruise on head now.Seemed to be on the tick box of it all .We are all different in our symptoms thou

[rach1081985 in reply to Fra22-57]

Aw poor you and thank you x

[hihannula in reply to rach1081985]

Do you have peripheral neuropathy by any chance. That can cause balance issues and a host of other unpleasant things.

[rach1081985 in reply to hihannula]

Thank you I'm waiting to c Gp investigate thanks

[HollyHeski Administrator]

Any new symptom must be checked out by your doctor, especially balance issues, as it could be a simple ear infection and not related to APS.

Saying that, it is quite common and a symptom we learn to live with, but our doctors must have it recorded on our notes.

nhs.uk/conditions/antiphosp...

[rach1081985 in reply to HollyHeski]

Thank you very much x

[Hidden]

Look into spinal stenosis,, my spinal cord was being pinched I had no idea except my balance was off, talk to your Doc all that is needed is an MRI.

[rach1081985 in reply to Hidden]

Thank u so much x

[amy1808]

Hi , yes I can have terrible balance issues but getting a lot better now I’ve been to see my GP . It may be vertigo . Quite common with APS sufferers . I put up with it for years not realising the connection . Read my post I put on a few weeks ago with the same thing . The other day I was stood up against counter in the bank and felt like I was falling sideways , it’s weird . X

[rach1081985 in reply to amy1808]

Thank you thsts how I get sometimes

[Lure2]

Hi,

I wonder if you are properly anticoagulated as balance isssues are very common with APS and too thick blood?

I have got it and severe vertigo and for some minutes the world was spinning to the left and I had to hold on a tree not to fall. Horrible.

After Warfarin I never have the neurological issues any more. Headache, eye-symptoms, vertigo, double-vision etc etc. Some of us need a rather high and stable INR

[rach1081985 in reply to Lure2]

Thank you I currently take rivaroxobin as warfrin don't work 4 me xx I feel like going to fall for no reason at times yes it is horrible

[hihannula in reply to Lure2]

You are one of the lucky ones Lure2, who somehow can manage to keep your INR stable. Most of us can’t, hence the ups and downs with symptoms. This last 2 months for some reason I’ve been stable at 3.6-4.0 and my neurological symptoms are quiet at this point so I feel quite well. The challenge for me and I’m sure for a lot of others, is trying to keep it in that therapeutic range consistently.

[Lure2 in reply to hihannula]

We need an APS-Hematologist who cares for our therapeutic range and a Coagulationclinic who allows us to parallelltest when we are in need of a vein-test.

Also selftesting and allowed to test whenever it is necessary! We need a bloodtest every second or third day I think. Especially if we are triplepositive with Lupus Anticoagulant and high titres.

Coagulationclinic and Hematologist working together.

I have now, since half a year or so, another machine than the CoaguChek XS, which works better with almost the same INR-number as to vein- and fingerprick-test. My hospital has changed to this machine for all persons who need Warfarin and selftesting. Good to be certain where "you are" as to INR every time you take a test at home.

Also to eat healty and not change too much, especially with the greens each day. I have written about this very often.

Important to make notes about a lot of things that has to do with the Warfarin and INR. As I do not work I have time to take care of myself and I am lucky to have Specialists who know me since several years. I have also been exstremely interested in this illness to learn as much as possible. I should probably have studied to become a Doctor in the 60th after my 13 years in school but had other interests when 19 years old.

We also need an injection when the INR is too low. I have learnt that we are very different with APS. There are 3 types of APS; 1)Primary APS (with no other autoimmun illness present), 2) APS and another autoimmun illness, usually SLE(Lupus) and finally 3)CAPS. I have read that only 1 % of those who are diagnosed with APS get CAPS. That is not much. The drug they must use cost a lot of money but sometimes similar drugs are used for those who are at a risque to get CAPS.

Hope you will succeed to get the possibility to get in range if that is important for you. I think some of us do not know when we are too low. APS is really a strange illness!

[hihannula in reply to Lure2]

Sounds like you have an amazing team of Doctors. I would never get that much attention. They tell me to come back in a year. I always insist at least every 6 months. I do get tested at the lab weekly and they adjust the dosage accordingly which is almost every week. What is the name of your new blood testing machine? I was going to buy the Coagu Chex XS, but if there is a more accurate one then that would be better. Thank you for all your expertise. Cheers

[Lure2 in reply to hihannula]

I will message you with the name as I do not know if it is allowed to give the name here. It can be difficult for you to get it I guess, but anyway the CoaguChek XS has been much better after they stopped the production for some time and then had a better reagens for the test-strips (or similar thing) with not too big difference between finger and vein.

I have used both for some time and I must say that I could always trust the CoaguChek XS INR and know where I was as to INR. I just counted down 0,5 - 0,6 and if it was very high I counted down perhaps 0,7 or more. If the hospital had not changed machines for INRs I could have continued with the CoaguChek XS. I knew the differences as i had parallelltested so many times. The new one is more secure though.

[hihannula in reply to Lure2]

Thank you. I’ll try to find one. They may not deliver to Canada. I’ll have to see.

[Lure2]

Are you tripple-positive? Why did Warfarin not work?

[rach1081985 in reply to Lure2]

I don't know if triple positive hun I was tested diagnosed 12 years ago.. I don't know why stopped working for me. Was on years never stable inr and constant blood tests sometimes 3 times a week.... My dosage would b increased but inr would not increase and at danger levels. So switched to rivaroxobin

[Lure2 in reply to rach1081985]

When we are triplepositive we also are positive to Lupus Anticoagulant (one of the three autoantibodies they test for when getting a blood-diagnose of APS) which often makes it very difficult to stabilize on Warfarin without selftesting etc.

I hope you have got a Specialist today and that you can test once more to find out if you are positive to one or all three. If you are triplepositive with high titres perhaps Rivaroxaban is not the best choice of anticoagulation for you. There are other alternatives.

Anticoagulation is very important for us to stay without our APS-symptom as much as it is possible. Talk to your Specialist to find out why you still after 12 years time with APS has got your remaining dizziness.

[rach1081985 in reply to Lure2]

The dizziness is fairly new and I have other thngs going on... I will try and book see my consultant asap