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USEFUL BLOG regarding Hughes Syndrome and Migraines
J.L.’s sister, four years younger, had been diagnosed with Hughes syndrome, having had a DVT and pulmonary
embolism
, and a previous history of two miscarriages – and a long history of migraine. Mrs. J.L. herself had not had any thrombosis, and had not had any pregnancies.
J.L.’s sister, four years younger, had been diagnosed with Hughes syndrome, having had a DVT and pulmonary
embolism
, and a previous history of two miscarriages – and a long history of migraine. Mrs. J.L. herself had not had any thrombosis, and had not had any pregnancies.
MaryF
in
National Migraine Centre
10 years ago
Waiting for my test results
I also have scar tissue in lungs likely due to pulmonary
embolism
(never smoked). Yet, the doctors have never caught a clot in action or saw a DVT in me on a scan.
I also have scar tissue in lungs likely due to pulmonary
embolism
(never smoked). Yet, the doctors have never caught a clot in action or saw a DVT in me on a scan.
Tranquility1
in
Hughes Syndrome APS Forum
10 years ago
Does anyone know if Dual Flow Concentrators are available?
I have my own from the NHS and it could happen that my wife 'may' also need one following a pulmonary
embolism
and I would prefer a single machine with 2 outputs rather than two noisy ones.
I have my own from the NHS and it could happen that my wife 'may' also need one following a pulmonary
embolism
and I would prefer a single machine with 2 outputs rather than two noisy ones.
Hidden
in
Lung Conditions Community Forum
10 years ago
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First time using heparin
Hi all, Warfarin doesn't seem to be helping me much these past few weeks - at target and above I still had slurred speech and weakness on the right side and my mouth had dropped and I was dribbling from the right side of my mouth again - nice eh? Too much information :) Today my INR was 1.9 I am not
Hi all, Warfarin doesn't seem to be helping me much these past few weeks - at target and above I still had slurred speech and weakness on the right side and my mouth had dropped and I was dribbling from the right side of my mouth again - nice eh? Too much information :) Today my INR was 1.9 I am not
stillwaiting
in
Hughes Syndrome APS Forum
10 years ago
dvt heparin injection for flying?
hi all, i came off warfarin last september after having a popliteal dvt following an operation on my lower leg, i get married in 4 weeks time an we are going to lanzarote for 3 weeks will i need the heparin injections for the 4.5 hour flight? i remember the nurse saying i should have them on all flights
hi all, i came off warfarin last september after having a popliteal dvt following an operation on my lower leg, i get married in 4 weeks time an we are going to lanzarote for 3 weeks will i need the heparin injections for the 4.5 hour flight? i remember the nurse saying i should have them on all flights
emmalou81
in
Anticoagulation Support
10 years ago
Low Pulse Rate
I was diagnosed A/F during 2007 and was put immediately put on warfarin which was changed to Rivaroxaban four months ago. I am 73 years old. I suppose like a lot of my fellow sufferers I am accustomed to waking up in the morning feeling OK but as the day progresses energy levels tend to dissipate.
I was diagnosed A/F during 2007 and was put immediately put on warfarin which was changed to Rivaroxaban four months ago. I am 73 years old. I suppose like a lot of my fellow sufferers I am accustomed to waking up in the morning feeling OK but as the day progresses energy levels tend to dissipate.
credimus
in
Atrial Fibrillation Support
10 years ago
Has anyone suffered a DVT while on warfarin?
I was diagnosed with APS (and lupus) after a DVT presented itself and blood tests were taken. I have been on warfarin ever since. Things have been fine - with the ups and downs that we all experience, but I now fear I have another clot (not diagnosed). What were peoples experiences if you have in
I was diagnosed with APS (and lupus) after a DVT presented itself and blood tests were taken. I have been on warfarin ever since. Things have been fine - with the ups and downs that we all experience, but I now fear I have another clot (not diagnosed). What were peoples experiences if you have in
JMA_10
in
Hughes Syndrome APS Forum
10 years ago
INR of 1.3 after 6 months of Merivan 2.5 mg.
No more Pulmonary
embolism
(thank God) but i am a little worried of this low INR level though i am on 2.5 mg does of merivan. Any suggestions?
No more Pulmonary
embolism
(thank God) but i am a little worried of this low INR level though i am on 2.5 mg does of merivan. Any suggestions?
aelokr
in
Anticoagulation Support
10 years ago
Warfarin not in range so on it plus Heparin. Joints in hands and wrist, knees and one heel painful - why?
INR has gone below 2 and stayed there for a few weeks now. They keep upping the dose but it is having little impact. This means I have to inject Heparin (well family do as I can't stand needles) until it goes above 2. I have noticed my joints are really aching which they don't do when Warfarin is
INR has gone below 2 and stayed there for a few weeks now. They keep upping the dose but it is having little impact. This means I have to inject Heparin (well family do as I can't stand needles) until it goes above 2. I have noticed my joints are really aching which they don't do when Warfarin is
Elaine77c
in
Hughes Syndrome APS Forum
10 years ago
Do you need to avoid vitamin K food on fragmin?
Hi All After 2 years on warfarin, I asked to for my drugs to be reviewed as I had spent 5 months feeling very unwell (INR unstable). I am now on fragmin and feel almost like my old self! I spent 2 years being extremely careful with high vitamin k food (as it would seriously affect my inr) Do I have to
Hi All After 2 years on warfarin, I asked to for my drugs to be reviewed as I had spent 5 months feeling very unwell (INR unstable). I am now on fragmin and feel almost like my old self! I spent 2 years being extremely careful with high vitamin k food (as it would seriously affect my inr) Do I have to
elt-las
in
Hughes Syndrome APS Forum
10 years ago
Professor Graham Hughes' BLOG February 2014 via London Lupus Centre
February 2014 This time, a real record – the wettest winter ever recorded here in the southern part of Britain! Terrible flood scenes. In this month’s blog I propose to deal (or to start to deal) with ‘treatment’ – still a major issue for all of us – patients and doctors, living with Hughes syndrome
February 2014 This time, a real record – the wettest winter ever recorded here in the southern part of Britain! Terrible flood scenes. In this month’s blog I propose to deal (or to start to deal) with ‘treatment’ – still a major issue for all of us – patients and doctors, living with Hughes syndrome
MaryF
Administrator
in
Hughes Syndrome APS Forum
10 years ago
I am on long term rivaroxyban (for recurrent P Es). I now need to have major surgery. What advice has anyone been given about stopping
and restarting rivaroxyban? I react badly to Warfarin but would be happy to use heparin temporally.
and restarting rivaroxyban? I react badly to Warfarin but would be happy to use heparin temporally.
Wagnerm
in
Anticoagulation Support
10 years ago
I want to try one of the new anticoagulant drugs for my A F but my doctor says take warfarin. So at present am on aspirin.
Have only just been diagnosed and would like to try these fairly new drugs but I was wondering if the cost has anything to do with it.
Have only just been diagnosed and would like to try these fairly new drugs but I was wondering if the cost has anything to do with it.
doubtingdolly
in
Anticoagulation Support
10 years ago
Lung Volume Reduction Surgery (valves) - Is it a postcode lottery?
There has been a lot of interest and support from many of you regarding this procedure but it seems that there are a lot of variations over the country with some medics willing, others not (cost?) and a few who'd never even heard of it. (call yourselves doctors?). Seems like it still depends on where
There has been a lot of interest and support from many of you regarding this procedure but it seems that there are a lot of variations over the country with some medics willing, others not (cost?) and a few who'd never even heard of it. (call yourselves doctors?). Seems like it still depends on where
notlocal
in
Lung Conditions Community Forum
10 years ago
Anti coagulation at last!
I've mentioned before that I had a pulmonary
embolism
several years ago so I've been on warfarin before which I tolerated well, does Apixaban have many side effects? I have a hiatus hernia and a very sensitive stomach so worried about that.
I've mentioned before that I had a pulmonary
embolism
several years ago so I've been on warfarin before which I tolerated well, does Apixaban have many side effects? I have a hiatus hernia and a very sensitive stomach so worried about that.
Beanz1970
in
AF Association
10 years ago
Differences between LMWHeparin and Warfarin, how they work, side effects and suitability.
Hi all, I've been looking at the different anticoagulation treatment given for different cases/people, it seems the treatment is usually dependant on whether you have suffered a thrombosis or not. If you have then I believe the common treatment is warfarin however some take Heparin. Is this down to
Hi all, I've been looking at the different anticoagulation treatment given for different cases/people, it seems the treatment is usually dependant on whether you have suffered a thrombosis or not. If you have then I believe the common treatment is warfarin however some take Heparin. Is this down to
jp83
in
Hughes Syndrome APS Forum
10 years ago
Pulmonary Hypertension
I was diagnosed with primary APS in 2001 after a massive pulmonary
embolism
. In 2011 I was diagnosed with Primary or Idiopathic Pulmonary Hypertension. I would like to meet other people with this condition in the context of Lupus or APS.
I was diagnosed with primary APS in 2001 after a massive pulmonary
embolism
. In 2011 I was diagnosed with Primary or Idiopathic Pulmonary Hypertension. I would like to meet other people with this condition in the context of Lupus or APS.
Romartsantos
in
Hughes Syndrome APS Forum
10 years ago
Genetics...
I was diagnosed with APS 4 years ago after a DVT & PE. (I was 35) I have a 19 year old daughter that I wanted to be tested for any blood disorder before being put on birth control. Thank goodness I did!! Her tests came back that she has Protein S Deficiency and Antithrombin III Deficiency. But not
I was diagnosed with APS 4 years ago after a DVT & PE. (I was 35) I have a 19 year old daughter that I wanted to be tested for any blood disorder before being put on birth control. Thank goodness I did!! Her tests came back that she has Protein S Deficiency and Antithrombin III Deficiency. But not
lisakay
in
Hughes Syndrome APS Forum
10 years ago
After 4 years of good health - with warfarin and having stopped smoking, I am devastated to have suffered a mild TIA this week. Why?
Why do outbreaks occur even when on warfarin? Can stress or anything else cause it, as I believe not. Does anything help alongside meds - I am now back on heparin until my INR levels reach 2.5. So frustrating but lucky to get fab care at RIE. Any advice gratefully received ?
Why do outbreaks occur even when on warfarin? Can stress or anything else cause it, as I believe not. Does anything help alongside meds - I am now back on heparin until my INR levels reach 2.5. So frustrating but lucky to get fab care at RIE. Any advice gratefully received ?
Edinburgh
in
Hughes Syndrome APS Forum
10 years ago
Is it normal just to be released as quick as that?
I developed A Pulmonary
Embolism
back in March, only months after having my son (I'm 32), and was rushed to hospital, put on warfarin and kept in for nearly two weeks, I was taken off warfarin back in November despite not having any further scans to see if the clots had dissolved.
I developed A Pulmonary
Embolism
back in March, only months after having my son (I'm 32), and was rushed to hospital, put on warfarin and kept in for nearly two weeks, I was taken off warfarin back in November despite not having any further scans to see if the clots had dissolved.
Brocka1981
in
Lung Conditions Community Forum
10 years ago
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