Sticky Blood-Hughes Syndrome Support
8,167 members8,387 posts

Advice please

Hi, over the summer I have been having a headache nearly every day and taking paracetamol which has eased them most times, with a few migraines thrown in, but am feeling so tired lately, and have no energy - have seen my haematologist and he's referred me to neurology to get checked over - any advice of good medication or help gratefully received, thank you

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Forgot to mention I keep feeling dizzy but It's not like vertigo but just can't explain how it feels to the doctor, does anyone else suffer like this?

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Joanneg6 im sorry you are feeling so rough. I can't understand why if you had a stroke at 32 plus miscarriages and problem pregnancies they have only put you on Asprin! No wonder you feel better when you inject when you fly!

The migraines and headaches to me are a symptom that is telling you your blood is still too sticky and personally I would be going to an APS specialist on the approved list. I don't know if your Heamatologists is but if not ask your GP for a referral as its time for a change I think.

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If also say don't go to Neurologist much better off seeing a proper APS specialist.

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Hi, you need to be seeing a specific specialist who understands Hughes Syndrome/APS I am presuming you have been properly tested for this, let us know where you are so we can help with finding you the right medical professional, which will not only help you, but also your GP. MaryF

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Thanks so much for your replies, I am in Stockport so any help much appreciated

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NHS Specialists

Professor Imelda Bates

Consultant Haematologist

Royal Liverpool Hospital

Prescott Street, Liverpool

Merseyside L7 8XP

Telephone: 01517 0643

Professor Ian Bruce

Rheumatology Clinical Lead

The Kellgren Centre of Rheumatology

Manchester Royal Infirmary

Oxford Road, Manchester M13 9WL

Telephone: 0161 276 4357

Dr Feroza Darwood

Consultant Obstetrics and Gynaecology

Department of Obstetrics and Gynaecology

Liverpool Women's Hospital

Crown Street, Liverpool

MerseysideL8 7SS

Telephone: 01517 089988

Professor Charles Hay

Consultant Haematologist

Department of Haematology

Manchester Royal Infirmary

Oxford Road, MachesterM13 9WL

Telephone: 01612 764801

Dr Rachel Gorodkin

Consultant Rheumatologist

Department of Rheumatology

Manchester Royal Infirmary

Oxford Road, MachesterM13 9WL

Telephone: 01612 761234

Professor Vanessa Martlew

Consultant Haematologist

Department of Haematology

Royal Liverpool University Hospital

Prescot Street, Liverpool

MerseysideL7 8XP

Telephone: 01517 064322

Dr StephenMcKew

Consultant Haematologist

Department of Blood Sciences

Countess

Chester Hospital

Liverpool Road

Cheshire CH2 1UL

Telephone: 01244 365000

Dr Andrew Will

Clinical Director

Deparment of Paediatric Hematology

Royal Manchester Children's Hospital

Oxford Road, Manchester M13 9WL

Telephone: 0161 7018416

MaryF

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Thanks so much, have GP appointment on Friday so will ask for a referral then, I feel an awful lot better with all the support I have received today, thanks again, I'll keep you informed x

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I am glad that you have got two very good answers.

I suggest you read "Sticky Blood Explained" by Kay Thackray. Also cheque your blood pressure as it must not stay too high with APS.

Best wishes from Kerstin in Stockholm

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I'm sorry you're suffering. These symptoms do seem to be typical APS symptoms when you're not properly anticoagulated.

I'm seeing an APS specialist in November (my rheumy retired) who is in Liverpool so not to far from you. Her name is Prof Martlew and is recommended on the Hughes Syndrome Website. It sounds like you need a referal quickly from your GP to an APS expert.

Good luck X

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Thanks so much, got an appointment on Friday with GP so hopefully get a referral

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Been to GP who has confirmed she will be referring me to an APS Specialist, I cannot thank you enough for all your help 😀

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