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Hughes Syndrome APS Forum

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Hi all. Was wondering,does anyone else suffer with daily headaches when they are on Warfarin?

Loopydaisy profile image
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Loopydaisy
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MaryF profile image
MaryFAdministrator

Hi there, many on this forum do have daily headaches and have to have other medications for the migraines/headaches alongside their Warfarin or other prescribed medications. Also some people do better on alternative anticoagulants. There is no harm in bringing this up with your consultant to see if something can be fine tuned for you. I have awful migraines, but not as badly or as frequently as they were prior to two Aspirin a day, before this, almost continual. MaryF

tassie profile image
tassie

I do and my rheumatologist didn't think they were Hughes related. Mind you I don't really trust her opinion. She did refer me to a neurologist and I have an appointment in August with her.

It can take a long time to get a diagnosis and suitable treatment for any of our issues unfortunately.

AvsG profile image
AvsG

I take Warfarin and get daily headaches. They not nearly as severe as they were before starting Warfarin. Since I had a TIA last year I've had constant pressure and discomfort at the back of my head (lower right hand side). I am going to ask Consultant next month if there is anything else that could help,

Avril

GinaD profile image
GinaD

Do you keep a health log? If you chart daily headache frequency and duration as well as INRs ( when drawn,) you might be able to spot a relationship.

GIna

AvsG profile image
AvsG in reply to GinaD

I do keep a Health Log and it does help. My headaches and symptoms get worse when my INR is too low but also when too high I feel unwell. When I'm on target I am better but still have 'flares' intermittently. It's so frustrating,

Avril

Lure2 profile image
Lure2 in reply to AvsG

Do you have the possibility to selftest?

Kerstin in Stockholm

AvsG profile image
AvsG in reply to Lure2

Hi Kerstin, I do self test and dose. This gives me better control and I feel much safer than when I attended the clinic. I keep note every day of my symptoms. I guess it's the unpredictable nature of Hughe's Syndrome that we have to live with,

Avril

I have familial warfarin sensitivities..apparently, it's genetic.....

Loopydaisy profile image
Loopydaisy

Thankyou all for your comments. Im going to start keeping a diary of when I have the headaches in relation to what my INR results are. Im still awaiting an appointment to come through to see a haemotologist as Ive suffered a second DVT within the last four years and the possibilty of being on warfarin for the rest of my life is daunting-especially with the headaches! :-/

AvsG profile image
AvsG in reply to Loopydaisy

Good luck Loopydaisy, I hope things improve for you soon,

Avril x

Loopydaisy profile image
Loopydaisy

Thankyou Avril x :-)

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