Dizziness update

[Jonr]

Ref my post yesterday. Here is an update. I talked with my specialist in haematology today, and she agreed to let my try increasing my INR to the range 2.5-3.5. 🤗 She hesitates to let me go above that, referring To 2 studies giving worse health being above that level. I look forward to try this. I will record INR very closely and check dizziness if it’s changing. ( hopefully) She also sends me to MR checking for TIA. I will try to get you updated.

[HollyHeski Administrator]

Great news, hopefully will sort headache out.

[Lure2]

Hi again,

Glad she agreed to let you try a higher INR as to the dizziness. The higher level 3.5 may help you feel better.

[daisyd]

I use to have horrible dizzy spells, sometimes so bad i was worried about going out

I was put on betahistine a drug for Ménière's disease

Which I don’t have, personally I think it’s small clots travelling in the inner ear small blood vessels

If your dizziness comes on suddenly pinch your nose like you do to clear the air passages after a plane flight

I found if I did it immediately I could stop the dizziness, before it got worse,I am now on betahistine for life along with Warfarin and hydroxychloroquine which has helped with balance

Hope you feel better soon

[MaryF Administrator]

Good news keep us posted as to how you are doing with your new INR target, your headache may well improve. MaryF

[MrsMouseSJ]

Hi Jonr. My dizziness improved greatly when my INR was raised. For me, I need to be over 3.

Good wishes.

[Jonr in reply to MrsMouseSJ]

Txs, I really hope it will help.

[GinaD]

The English major does not want to second-guess your doctor. However does the study she quotes referred to APS patients results with warfarin? A lot of people take warfarin because they have a sticky spot in their circulatory system - such as a stent. We take warfarin because we have sticky circulatory systems and comparing our outcomes to the former group is not very accurate

[Jonr in reply to GinaD]

I am not shure, have not red it Myself. But she is a proffesor in APS and a very good hemtalogist, so I feel she is to be trusted. I will try my INR as close as possible to 3.5 too feel if it helps... (2.9 today)

[Lure2 in reply to Jonr]

The question is also if they alllow you in Oslo to test that often as you perhaps need. Once a week is not often enough for us. Especially if we are on positive Lupus Anticoagulant antibodies. Are you such a patient with APS? LA?

I have a Rheumatologist and she is a Professor but not on APS but autoimmun illnesses especially Lupus (SLE) which go hand in hand with APS very often. SLE is more common than APS, but many APS patients also have Lupus (not Lupus Anticoagulant that is). Very few are Specialists on APS. We can notice it often if they understand our sticky blood and that we very seldom bleed from it but clot and get PEs etc etc . I also have a Hematologist who understands that I need an INR of 4.0 and lets me selftest and handle my INR by myself with the backup of a Special hospitalnurse who knows INRs. I am very lucky I can do this and I want others to have the opportunity to do the same.

[Jonr in reply to Lure2]

Hi, I do also self test, now daily...., today 3.4. I been tested on all APS antibodies yes, but I do not have Lupus or Sjøgreen... think maybe J in am feeeling better today..🤔

[Lure2 in reply to Jonr]

Oh, so glad but it will be enough with every second day. Later every third day. So you also have all three antibodies positive like me. I can tell you how I do it;

I write on an "almanacka" you understand being Norwegian, INR number, if I change some drug, how much exercise I do (usually at least 30 minutes walk) etc, and the most important thing how much greens I eat. I eat about the same amount every day and if I am too high on INR one day I eat a bit more of greens. Brusselsprouts (brysselkål in Swedish) perhaps 6 will lower my INR in 15 hours) and if I am too low (under an INR of 3.5 FOR ME) I take a Fragmin shot on my stomach. Then I practically never change my Warfarin but will be more restictive with the greens. As you follow the INR like that closely you will learn. You are a man with probably more weight so that is also important of course. Also parallelltest with the veintests to know the difference between the finger and the vein. Most often the fingertest will get higher as another reagens than the veintest.

Hope I have helped you a little. Fantastic that you have the possibility to test so often. It is my Hematologist who let me have the strips etc and it is free here in Sweden. What about Norway?

[Lure2 in reply to Lure2]

I can tell you also that the Fragminshot has nothing to do with the INR. It will just help you not clot. I am not a Doctor so do not ask me why etc.

[Jillymo]

Your not alone with the dizziness I too suffer from it together with the most awful ear noises - I think daisyd is correct with regard to micro clots to the ear, I have always suspected clots.

I am coming off antiplatelet therapy and starting anticoagulation tonight so it will be interesting to see if it helps.

I wish you improvement as the dizziness can be very unnerving to say the least. Good luck

[Jonr in reply to Jillymo]

Thanks, the good Thing not Every day is the same. Feeling better today. INR 3.9

[Jonr]

INR 3.9 today. Feeling good I think...🤔🤗

[Jillymo in reply to Jonr]

Interesting to hear your INR is in range and your feeling a little better.

With such a difficult illness I can relate to the - I think.

At times it is hard to know what is doing what I have a wide range of various autoimmune complaints. I wish someone could inform these stupid antibodies of ours they are supposed to be on our side. 😏

After many years of suffering TIA's / strokes etc I started anticoagulation last night - so keep those fingers crossed they manage to get my bloods in the right margin. 🙏

[Jonr in reply to Jillymo]

Yes , I really hope for you as well