Dizziness : Hi I have the last weeks... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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Dizziness

Jonr
Jonr

Hi

I have the last weeks struggled with dizziness and today even double vision, lasted 3-4 minutes. I measure my INR myself and stay between 2-3. Anyone else experienced this? Why does this happen, and is it anything to do ? Very difficult and together with fatigue this is a big issue for me now.

22 Replies
oldestnewest

Hi there,

I read that you are from Oslo and I answered your question I think 4 years ago but we did not get an answer from you at that time.

I repeat if you have got a Specialist of APS over there in Oslo? I wonder actually as I think your therapeutic range is put quite too low. I live in Stockholm and have 2 Specialists.

Here you tell us you stay between 2.0-3.0. I must stay at an INR of 4.0 to be without neurological symptoms. I wonder if that Doctor is a Specialist as that INR is too low? I think it is not a wonder that you get dizziness och doublevision. Hope you have the possibility to answer me.

Jonr
Jonr in reply to Lure2

Hi

Thanks for answering. AS I wrote to you 4yrs ago, I do have a specialist on APS in Oslo. ( Eva Marie Jacobsen- professor on APS) I have asked here several times, but she still recommend between 2-3. You say 4, do you mean 3-4 or 4 exactly? What kind of documentation do we have support that?

MaryF
MaryFAdministrator in reply to Jonr

Hi if his is a new symptom and you are not well, do please get in contact again with your GP and your specialist. MaryF

Jonr
Jonr in reply to MaryF

Yes, I will do that. First time double vision with Maravan in 4 yrs....

Lure2
Lure2 in reply to Jonr

Hi again, I am not a Doctor but we have read from Specialists that APS (perhaps especially triple positive) and with symptoms need an INR over 3.0. There are people needing less INR but absolutely not with SYMPTOMS like you have got now.

My Hematologist knows that if I am lower than 3.5 I get symptoms back. I know that myself and I have been selftesting for several years with good results. I used to have a CoaguChek XS before and then my fingerpricknumber was much higher than the real value in the arm by veintest. We have another machine now and the difference is now quite small between the two so I can trust my fingerpricktest.

I must take a Heparin-shot if I get lower than 3.5.

The most important thing is that you get still symptoms and you should thus try a higher INR and stay there for a while and see if you feel better.

Lure2
Lure2 in reply to Lure2

Have you never have those symptoms earlier and before Warfarin? What is Maravan?

Lure2
Lure2 in reply to Lure2

I read that earlier you had an INR around 3.5-3.8 and also had those typical symptoms I also had. You must test your blood rather often to know the number and for some of us we need an INR up to 4.0 and some people need an INR higher than that. Is it the veintest number you are talking of or the fingerpricknumber? There can be a great difference between the two values.

Jonr
Jonr in reply to Lure2

Fingerprick, but when checking it’s very same as lab, I test minimum every week. I will try higher INR too see (3.5-4)if it helps and contact my specialist to discuss. Ps. Maravan=warfarin

Lure2
Lure2 in reply to Jonr

Do you have a CoaguChek XS like most people have? I test every second day to be able to follow the ups and downs I have. I am triple positive with Lupus Anticoagulant and then it is difficult to keep the INR stable. I test at the lab in the vein now very seldom as we know the difference so well. Very good in Corona-times as Karolinska Hospital do not want risque-patients to come to the lab.

The two tests (finger - vein) must be done almost at the same time (best not more than 2 hours).

I think you should tell your Specialist like the others say before you change anything now. She is responsible for your anticoagulation and your Maravan (Sweden Waran).

Take contact with her and Good Luck!

Let us hear how it goes for you!

Jonr
Jonr in reply to Lure2

Txs

HollyHeski
HollyHeskiAdministrator in reply to Jonr

Hi, as you have a specialist I suggest you email them with your symptoms? Various things can cause these symptoms, your specialist can run tests, you must not ignore new symptoms.

Let us know how you get on?

Jonr
Jonr in reply to HollyHeski

I will contact her tomorrow.., thx

Lure2
Lure2 in reply to Jonr

But these symptoms are not new. You had them 4 years ago and they tried to get the INR up you say then. Have you changed anticoagulationdrug now?

Do as the others say and contact your Specialist and tell her about your symptoms. Have you lost the vision on one eye?

Jonr
Jonr in reply to Lure2

The problems disappeared after warfarin use was stable, just had some dizziness som shot periods every year, but no double vision... only lasted 3-4 minutes, ok now. Will call my specialist tomorrow.

Lure2
Lure2 in reply to Jonr

Read my last answer a couple of seconds ago also.

Record and check if your symptoms are INR-dependent - if they go away when INR is higher and return when it's lower, you may need a higher range.

Also check blood pressure, APS can play havoc with that (and warfarin can affect too), and too low, or too variable, BP can easily cause those symptoms.

Jonr
Jonr in reply to Ray46

A good idea, I may check this. I do test myself for last 3 yrs, so Easy to check.

Jonr
Jonr in reply to Ray46

Yes, will do

Just wondering, when you say dizziness, are you describing a feeling of being lightheaded or more of a Vertigo (room spinning) type feeling?

Jonr
Jonr in reply to kiminabmw

Thanks for the question , I am not so good in English but it’s lightheaded I think. The room it’s not spinning, but like if I sit in a car an reads , then I feel the same

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.

Lure2
Lure2 in reply to Jonr

Hi again,

Glad that she agreed to let you try higher INR. The higher level may help. Good Luck!

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