Sticky Blood-Hughes Syndrome Support
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Hi! I am new here, and a norwegian girl with APS.

- My english is bad! I hope you understand ;-)

I got diagnosed with APS in 2012, after suffered from 5 DVTs. Last week at work it suddenly felt like someone had hit me in the back of my head. I got extremely dizzy (vertigo) and had a hard time to see properly. They had to call the ambulance and I was sent directly to the hospital. CAT scan, MRI, ultrasound of the blood vessels and spinalpuncture were all fine. They could not find anything wrong. Have any of you experienced something similar? Could the extreme dizziness have something to do with my APS-diagnose? I would be thrilled to get some answers :))

Best wishes from Norway! :)

14 Replies

Hello and welcome, it is possible that your symptoms could be for any number of reasons and not necessarily APS. However on our charity website we have the specific tests which your doctor could do to determine if this may be the case. The tests are not difficult or expensive. That is your first step. If the tests come back showing anything related to this, then I may be able to help you locate the nearest place with working medical knowledge.

Also if you are going back for any follow up care after your visit to hospital, you could give them the details of the charity website, it may help as there is no harm to be ruling it out as the various doctors, try and help you with diagnosis.

However if as you say you have the diagnosis, then more detail is required with your medication, sometimes if the blood is not kept thin enough it can cause the symptoms you describe.

Men hvis du sier at du har diagnosen, da flere detaljer er nødvendig med medisiner, noen ganger hvis blodet ikke blir holdt tynn nok det kan føre til at symptomene du beskriver.

Mary F

Hei og velkommen, er det mulig at dine symptomer kan være for en rekke årsaker, og ikke nødvendigvis APS. Men på vår veldedighet nettsiden har vi de spesifikke tester som legen din kan gjøre for å finne ut om dette kan være tilfelle. Testene er ikke vanskelig eller dyrt. Det er det første steget. Hvis testene kommer tilbake viser noe relatert til dette, så jeg kan være i

stand til å hjelpe deg med å finne nærmeste sted med arbeider medisinsk kunnskap.

Også hvis du kommer tilbake for noen oppfølging omsorg etter ditt besøk på sykehuset, kan du gi dem detaljene i veldedighet nettsiden, kan det hjelpe så det er ingen skade å være regjerende det ut som de ulike leger, prøve og hjelpe deg med diagnosen.


Thanks for answering me back!

My doctors; the hematologist and rheumatologist already did this tests. And I got the APS diagnose in 2012. The tests I mention in the question, was only the tests they did to exclude stroke and things like that when I experiences the extreme dizziness last week.

I was just wondering if any other people with APS have experienced something similar, with the extreme dizziness? :-)


Oh ok, between us it got lost in translation.... google translate! Also, I have re read your post again! Yes the symptoms you describe can happen with the disease. It is vital the the team looking after you set your INR at the right level and that you have the correct drug for best possible outcome. I am sure others on this site can advise you further! Regarding anticoagulant medication.

Oh ok, mellom oss det har gått tapt i oversettelse .... google translate! Også, jeg har re lese innlegget ditt igjen! Ja symptomene du beskriver kan skje med sykdommen. Det er viktig at teamet på jakt etter deg sette ditt INR på riktig nivå, og at du har riktig legemiddel for best mulig resultat. Jeg er sikker på at andre på dette nettstedet kan råde deg videre! Angå antikoagulerende medisiner.

MaryF x


Hello and welcome

What medication are you on. Are you on Warfarin?

Dizziness in APS can be due to micro clots of the blood in the very small blood vessels in the ears.

Please give us more details of your medication and who is managing your APS.

Best wishes.


Hei og velkommen

Hva medisiner er du på. Er du på Warfarin?

Svimmelhet i APS kan skyldes mikro klumper av blod i svært små blodårer i ørene.

Vennligst gi oss flere detaljer om din medisinering og som administrerer din APS.

De beste ønsker.



Hi Manofmendip! :) Thanks for answering me!

I only take warfarin. My INR is supposed to be 3. Its a bit hard to regulate, and therefore often a bit higher. Its a life-long treatment. It is my normal doctor that check my INR and changing the warfarin-dose. In Norway we call the doctor "fastlege", and he is an internist. Additional I go once a year to a rheumatologist, just for a checkup and to control if/when i develop lupus. Otherwise I am on my own ;-) Expertise among doctors in Norway seems to be absent...

When I was admitted to hospital a week ago, it was straightly to neuro-sector. They didn't find anything wrong with my head. I can also mention that I am very often very tired. And if I could, I would sleep 12 hours or more every night.

Micro clots of the blood in the very small blood vessels in the ears, is something i didn't think of! :)


And also I have migraine.. I use Imigran when I got seizures. And 3 months ago, I started using Inderal/Pranolol (blood-pressure medicine) obviating.


There are quite a few doctor;s names I can see associated in Norway from a detailed search I have done. Let me know if you require these to make any contact in your own country. MaryF

Det er ganske mange lege, s navn jeg kan se forbundet i Norge fra et detaljert søk jeg har gjort. Gi meg beskjed hvis du trenger disse for å gjøre noen kontakt i ditt eget land. MaryF


Thank you for sending this Anne.

Many people with APS need an INR of around 4.0 for their symptoms to be manageable, you should discuss this with your Rheumatologist. I have now converted from Warfarin to Fragmin (Low Molecular Weight Heparin), which is an injection once a day and no INR tests needed. This has helped my dizziness and other symptoms a lot. An expert on dizziness in APS patients is Peter Savundra at The Portland Hospital in London; you may be able to get a private appointment with him. I saw him about my dizziness and he is very very good.

Best wishes.


Takk for at du sender denne Anne.

Mange mennesker med APS trenger en INR på rundt 4,0 for sine symptomer å være håndterlig, bør du diskutere dette med din revmatolog. Jeg har nå konvertert fra Warfarin til Fragmin (lavmolekylært heparin), som er en injeksjon en gang om dagen og ingen INR tester som trengs. Dette har bidratt til min svimmelhet og andre symptomer mye. En ekspert på svimmelhet i APS pasienter er Peter Savundra på The Portland Hospital i London, kan du være i stand til å få en privat avtale med ham. Jeg så ham om min svimmelhet og han er veldig veldig bra.

De beste ønsker.



A good thing to remember is that anywhere there is blood in your body the APS can affect ---- jet

En god ting å huske er at overalt hvor det er blod i kroppen din APS kan påvirke ---- jet



Hope this finds you well. About 5 weeks ago I experienced something similar. It was mid morning and suddenly felt a massive headache coming on, then felt I was going to throw-up followed by a near black out. one of my co-workers rushed me to the ER. all the test results were normal - that included CT scan of my head; full panel blood work; INR was 2.4. No one seems to know what brought it on but I have had headaches / migraines almost constantly but I know I don't feel right.




Håper dette finner du vel. Ca 5 uker siden jeg har opplevd noe lignende. Det var midt morgen og plutselig følte en enorm hodepine kommer på, så følte jeg skulle kaste opp, etterfulgt av en nesten svart ut. en av mine kolleger stormet meg til ER. alle testresultatene var normale - som inkluderte CT scan av hodet mitt, full panel blod arbeid, INR var 2,4. Ingen synes å vite hva som brakte det på, men jeg har hatt hodepine / migrene nesten hele tiden, men jeg vet at jeg ikke føler meg rett.




Hello. I had a stroke at 31. Hospital took 12 hours to do MRI and discharged me the next morning with no followup, medication or consideration that I was a single mum. I had no speech for 6 months until I taught myself to talk again. 8 years on a neurologist (unrelated to stroke) ordered another MRI showing major stroke and several TIAs. I get vertigo and pressure headaches often. I had been told my stroke was an a-typical migraine. Nonsense. I am now wondering if the TIAs are from repeated slurred speech and dizzy episodes.

Newly on warfarin with range of 2-3 which I think is too low. But also have Lupus and now consultant wondering about an alternative for both conditions as warfarin has not made me feel any better at all or killed symptoms.

I wonder if MRI doesn't show TIAs accurately? Please contact your Thrombophilia Dr and tell her of these problems. I wonder if your INR range is right?

Hei. Jeg hadde et slag på 31. Sykehus tok 12 timer å gjøre MR og utladet meg neste morgen uten oppfølging, medisiner eller betraktning at jeg var en enslig mamma. Jeg hadde ingen tale for seks måneder før jeg lærte meg å snakke igjen. 8 år på en nevrolog (ikke relatert til hjerneslag) bestilte en ny MR viser større slag og flere TIA. Jeg får vertigo og trykk hodepine ofte. Jeg hadde blitt fortalt min hjerneslag var en a-typisk migrene. Tull. Jeg er nå lurer på om de TIA er fra gjentatte sløret tale og svimmel episoder.

Nylig på warfarin med rekkevidde på 2-3 som jeg tror er for lav. Men har også Lupus og nå konsulent lurer på om et alternativ for begge forholdene som warfarin ikke har gjort meg til å føle noe bedre i det hele tatt eller drept symptomer.

Jeg lurer på om MR ikke viser TIA nøyaktig? Ta kontakt med din Trombofili Dr og fortelle henne om disse problemene. Jeg lurer på om din INR-område som er rett?


Hope you can read this. I don't know how to translate this to Norwegian.

I had similar symptoms which lead to my diagnosis and a prescription of lifetime warfarin. But I have done well since my diagnosis. The dizzy spells and the head aches ended when i started warfarin. The fatigue has returned from time to time and this usually means my immune system and inflammatory response have turned on again. Don't despair -- when you and your doctors find the drugs which work for you, you can likely go years, -decades even -without symptoms.

Gina in West Virginia

Håper du kan lese dette. Jeg vet ikke hvordan man skal oversette dette til norsk.

Jeg hadde lignende symptomer som fører til min diagnose og en resept på livstid warfarin. Men jeg har gjort det bra siden min diagnose. De svimmelhet og hodepine endte da jeg begynte warfarin. Utmattelsen har returnert fra tid til annen, og dette betyr vanligvis min immunsystemet og inflammatorisk respons har slått på igjen. Fortvil ikke - når du og dine leger finne medikamenter som fungerer for deg, kan du sannsynligvis gå år,-tiår selv-uten symptomer.

Gina i West Virginia



Im from Sweden :) so my english isnt so good.

I have experience almost the same thing.

A few week ago it felt like something snapped in the back of my head. At the same time my head turned very warm. Felt like a warm wave vent trough my head.

I havent talkt about this with my doctors, and wondering if it could be related with my Aps?!

Hugs/Kramar från Tessan


I have APS among other things and get migraines also. I also get episodes of vertigo which was eventually diagnosed as Meniere's disease, not uncommon with APS. An ENT, ear specialist verifies it. It is worth ruling it out or in, as it may be.


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