National Migraine Centre
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Migraine or cluster headaches??????

Hi, I've been having what i was told by the hospital were migraines quite frequently for the past month and today i went back to the dr after being prescribed propanolol on Mon but the side effects were too bad. He told me i wasnt having a migraine as my symptoms dont match nor do migraines occur as often as i get them - vomiting, light sensitive bad pain and it also effects my speech and i get a bit disorientated (last yr they thought i had a stroke but got told it was a bad migraine by a consultant) anyways today he thinks its cluster headaches and i have now been given pizotifen tablets to try. I am so confused and just want the pain to stop. Does anyone else experience similar symptoms?

Michelle

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Do you have any relatives in your family with autoimmune diseases including thyroid, early heart attacks and strokes, and history of miscarriages etc? MaryF

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My nan had 2 strokes and a heart attack bless her but at a later age other than that i dont think so, but i'm only 34 not that age matters i know but its not as common is it they did rule out a stroke though.

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Ok, the reason i ask is some people have Hughes Syndrome/APS some simple blood tests can rule it out. MaryF

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I've never heard of Hughes syndrome before, I had blood tests the last time I was in hospital the only think it showed was low Iron which is now back to normal

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Hughes/antiphospholipid syndrome can cause both low-grade symptoms and potentially fatal conditions as a result of blood clots.

In pregnancy, Hughes/antiphospholipid syndrome is the most common, potentially treatable cause of recurrent miscarriage, and is also associated with other complications such as pre-eclampsia, premature birth and stillbirth.

Some people are affected by symptoms more than others, while others may have the antiphospholipid antibodies (aPL) but do not develop any blood clots and/or have pregnancy complications. As of yet, we simply don’t know the reason why these anomalies exist because so much research still needs to be carried out.

The typical low-grade symptoms of Hughes/antiphospholipid syndrome are:

headache and migraine

memory problems

dizziness and balance difficulties

visual disturbances

blotchy skin (livedo reticularis)

arthralgia

fatigue

The common acute conditions caused by Hughes/antiphospholipid syndrome are:

thrombosis – DVT

strokes and mini-strokes (Transient Ischaemic Attacks)

heart attacks

pulmonary embolism (blood clot on the lung)

As Hughes/antiphospholipid syndrome is a blood disorder and blood flows throughout the entire body, nearly any organ can be affected. Consequently, the brain, eyes, ears, lungs, heart, kidneys, liver, bowel, skin, nails, bones and joints can potentially all be affected to varying degrees.

The brain is particularly susceptible in Hughes/antiphospholipid syndrome patients, as the ‘sticky blood’ can impair circulation and limit oxygen which can result in a variety of low-grade neurological symptoms.

Remember - it is NOT necessary to have all the symptoms to be diagnosed with Hughes/antiphospholipid syndrome.

Here are the blood tests:

Anticardiolipin antibodies (aCL)

Lupus anticoagulant (LA)

Anti-beta2-glycoprotein-1 (anti-B2GP1)

If you do get your GP to test, do them at the hospital as the samples taken are time sensitive, might be a good idea to rule the condition out. MaryF

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Thank you for your advice I have a follow up with my Dr next week so will ask about blood tests again.

It sounds like such a debilitating illness 😔

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I completely agree with Mary that it would be a good idea to check this out, but do be prepared for your doctor not to know about these tests / this condition as being related to headache: bring in the info she has shared.

Personally I got into a lot of trouble with a GP simply for asking for the tests. I brought them up again with a specialist and he had not heard of the connection and didn't want to know.

Don't let my experience put you off though, your doctor may be more enlightened and your health is at stake.

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I was very interested to read this. I suffer from migraines for several days a month. I have had recurrent miscarriages and am requesting the blood test for aps. I have several symptoms and know for sure there were no chromosonal abnormalities on the last one and all was well at 7 weeks. I had never heard of it until recently. Am I right in thinking you need 2 blood tests several weeks apart ?

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You do need the blood tests several weeks apart, and when your request them off the GP, take the forms to the hospital as the samples taken are time sensitive, so more accurate if not left hanging around. Also you need doctors who understand the condition. There is a forum on this platform for Sticky Blood/Hughes Syndrome, but do stay on this one also! Which area do you live in, as will send you some details.

MaryF

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Cheshire

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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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I'm under Leighton hospital in Crewe . Is there anyone there?

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Here is the whole list, there is no a person in each hospital, you have to get tested as suggested above and referred to your nearest one. hughes-syndrome.org/self-he...

MaryF

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Thanks so much for your help. I'll keep you posted!

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Your symptoms do sound like migraine and it IS possible (although a terrible ordeal) to have migraines very frequently, even every day. I had them daily and still have them weekly. I've also had stroke-like symptoms and also could not tolerate propanolol. Cluster headaches tend to be of shorter duration but you can have many attacks in a day and have them every day for months, according to what I have read.

Have a look at the Migraine Channel on Youtube and do a search for a doctor called Peter Goadsby interviewed by another doctor called David Kernick. They clearly explain the difference between the two kinds of headache. (Both are experts in headache)

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Thank you i'll have a look

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I agree with Frodo, I have chronic migraines so have them more often than not with similar symptoms as you describe. As far as I know Cluster headaches are much more distinctive. Originally I was classed as having Transformed Migraines which really just means they do not behave classically e.g. they can be shorter or longer than 48 hours etc. GP's are terrible with these things and so too are neurologists it was only when I finally saw a consultant who specialized in migraine was I treated appropriately. I've had them since I was 5, I'm 39 now and each year they are different. Peter Goadbsy is brilliant. Although unless you can travel to London he won't be available to you. Do your own research, get in contact with The Migraine Trust. Try and get a referral to someone who knows what they are talking about, you might have to rub a few GPS up the wrong way though first!

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Thanks I think the Dr wasnt exactly happy with me yesterday as I complained about the Propanolol medication but he cant expect me to take medication that doesnt agree with me. A neurologist is next on his list if this medication dont work so we'll see I aint holding my breath tho

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Well good for you! I've been on both the meds you mentioned they didn't help me but you have to work your way through the list. I still find it very hard to see GPS and generally always try to take someone with me, I do find you get a much better response when a witness is present. Good luck!

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Thats a good idea thank you i have a few people who would come with me

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The symptoms and treatments for cluster headache are quite different from migraine which is why it is essential to get an accurate diagnosis. Ask your GP for a referral to a neurologist who specialises in primary headache, as this is the only way to know which type you have. Best of luck!!

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I have had the daily cluster migraine. Don't care what anyone says, they ARE migraine because the sumatriptan stops them in their tracks. Obviously though I can't take them everyday. The pain lasts from anything between 3 to 12 hours then starts again early hours of the next morning

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Pitzotifen helped the frequency and intensity of my migraines (no weight gain either) so you may be on a winner anyway !!

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Thats good to know. Fingers crossed. Thank you

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Pizotofen reduced my symptoms but I wasn't keen on them. I gained weight quickly as well.

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I'm hoping i dont gain weight if i do i'll stop taking them

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Yes this sounds like auto immune disease to me. I have these symptoms and I have a form of vasculitis. Symptoms are very similar to yours. This is a very difficult condition to diagnose and most doctors don't even have it on their radar for some reason. It needs a proper type of specialist do evaluate your symptoms. I would caution anyone against going to a neurologist to try to get this diagnosis. Sadly a neurologist was unable to diagnose me (unless it is a neurologist with understanding of vasculitis) they probably won't know what to do with you as this kind of migraine is caused by inflammation and not a neurological problem.

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I had to go back to the drs on Friday and it was a different dr shes reffered me to a neurologist and told me to do a migraine diary for a month. I've never heard of vasculitis before how do they treat that?

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Well vasculitis is a rare auto immune disorder. I had other seemingly unconnected issues. Ibs type symptoms. It didn't get diagnosed until I developed joint pain (arthralgia). But my major and worst symptom were the neurological symptoms associated with the migraine. Frequent bouts of it...so painful. Pain down the side of ny head feeling seasick. Dreadful aura. Tinnitus.

I saw a rheumatologist for the joint pain who recognised I had an inflammatory process going on. I got referred to an immunologist who diagnosed me in the end. During that time I was sent to a neurologist by my vasculitis doctor. She was great but recognised she couldn't help. She told my consultant that she recognised I had a complex migraine syndrome but it wasn't within her expertise to diagnose. I now get treatment with mycophenolate and interferon. That keeps inflammation under control. Migraine has been gone for 3 years now x

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Omg you've been through it then with that. My migraines are getting a lot more regular even when i get a normal headache its started to have an impact on my speech i say the wrong words or cant say the right words properly even the simplilest words. I'm hoping they will be able to sort them soon as it tires me out and they so painful.

Glad they sorted your's and you now have a diagnosis and on the correct treatment ☺ x

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