Sticky Blood-Hughes Syndrome Support
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Migraines returned

Hi all, not feeling well at all, migraines have returned whilst on prophylactic tinzaparin. Only saw the doc. 6weeks ago seemed to be okay then ,now feeling very tired nausea and headaches. I contacted the specialist nurse and has given me an urgent appt. For thusday has anyone else experienced these symptoms? Just wondering whether I need a higher dose. Thanks elfie

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Hi Elfie.

Who is managing your APS, as you should discuss the Heparin dosing with them.

I'm on Fragmin and I know that I need to have a therapeutic dose to feel reasonably well, which for me with a body weight of 80kg is 15,000IU.

I also take Amitriptyline for migraine prevention and I started that when I was still on Warfarin and I haven't had the courage to stop it now that I'm on Fragmin.

Where are you from?

Best wishes.

Dave

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Hi Dave,I'm from scarborough and see prof emery in leeds, I'm also on amitriptylline 30mg. Just wondered if it takes bit of maneuvering until I get the right dose ,I hope I see the prof. On Thursday I don't particularly fancy starting warfarin. Elfie

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Thanks for your reply.

When I had a trial of Fragmin, under Prof Hughes, prior to starting on Warfarin, I was on a prophylactic dose and it made me feel better but not 100% so.

When I went back on Fragmin, after 8 years on Warfarin, because I was getting a return of symptoms, I was put on a therapeutic dose and, mostly, I feel much much better.

Dave

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i

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Hi sorry just asking Ellie is this prof emery in Leeds looking after your APS cos I am from Huddersfield and my doctors going to send me to leed to see a specialist just asking sorry for interrupting

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Hi lesley, yes prof emery is looking after my aps. He is very good but apparently not on the list of specialists. Are you sure you are seeing him? Which hospital are you going to? There is a. Dr. Michael martin at st. James's hospital, I go to chapel Allerton lupus unit. Best wishes elfie

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Hi Elfie not sure witch doctor it will be my doctor sed he going to try get me to see a specialist at St James or leed general so not sure yet but when I seen you on here saying that you was going to leedsthats why I asked I only whent back to my doctors on Friday and told him I need him to send me to a specialist who deals with APS then he sed I will try get you in to jimmys or the general at Leeds if that's ok I sed its fine as long as they know about APS cos all the ones in Huddersfield have no idea rat all so not getting no where so will let you know when I get a letter to see who ever I am seeing thanks

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Hi lesley, thanks for writing back, do let me know who you are seeing it's important that we see the right specialist. Good luck with your appointment. Best wishes. Elfie.

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I will do thanks Easley

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Hi, I'm Niamh, 17, constant migraine, numb fingers, nose bleeds, memory problems, etc for 2 years now. My mum started me on aspirin having read about hughes, and have now got my fingers back, nose bleeds stopped, thumping in ears stopped, all in 2 weeks! Still got 5/10 headache, I pass out when it 10/10. Been to doc today to ask for a blood test....I live between Scarborough and Whitby. I think he now convinced I'm mad!!

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Hi there, you're so young ,i'm 64 and i think i have reason to complain.have u been diagnosed and seen a consultant yet ? If not u or ur mum must insist that u see a specialist . I live in scarborough and travel to leeds to see a rheumatologist.Best wishes elfie

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Hi, docs just rung as I need more bloods doing, not done the right ones yesterday. Not diagnosed yet, but my response to aspirin was amazing. I think the doc may have gone and done some reading up...I hope! My mum has asked for a referral to Dr. Griffiths in Newcastle, but gp wants bloods back first. Thanks for replying . Niamh

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Hi niamh I'm glad you are getting things sorted, make sure you do get referred to the right person. Wish you all the best. Elfie

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Hi Niamh,

These are all symptoms I had at your age (and on/off most of my life) along with aural hypersensitivity and the feeling of the speeding up of time (not sure if you get that?). At the time I thought it was all "normal" teenage stuff (I took some migraine drugs for a while but that was about it). Since then I've just lived with it without thinking much more about it.

It wasn't until I nearly died last year at the age of 37 from blood clots on my lungs that I was diagnosed with APS. I'm sure there are many on here who like me just put their various symptoms down to "just one of those things" and didn't think much more of it until an acute episode nearly killed them.

You are definitely NOT mad. None of us are doctors so it could be something else but it is best to get these things checked out like you seem to be doing.

Good luck.

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Thank you Richard, still awaiting blood results. Still taking the aspirin, def an improvement. Niamh

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Hi Elfie,

We have "talked" earlier.

I remember that APsnotFab told you to be sure that you did have an APS-Specialist. The name of your Dr was not on our list for guaranteed Specialists of APS. That is exstremely important to be correct treated and anticoagulated.

Is this Prof Emery in Leeds an APS-Specialist?

Sorry to worry you but it is important. Good that you are seeing your Dr on Thursday. If he is not on the list ask to get a referral to one of those.

Hope to hear from you. Hope you will feel better very soon!

Kerstin in Stockholm

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Also Elfie if you do not find the list of approved APS-Specialists in Britain, I give it to you now;

hughes-syndrome.org/self-he...

Look at "selfhelp" and then "specialist in your area".

Kerstin

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I agree with Kerstin.

For some reason the link that Kerstin sent you comes up as 'URL not found' when I click on it, so I'm posting it again for you.

hughes-syndrome.org/self-he...

I have now repaired the broken link in Kerstin's post, too.

Dave

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Thank you Dave. It must be that I had forgotten the "dots" at the end. I now know next time.

Hope your visit to the doctor was positive!

Kerstin

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Thanks Kerstin and Dave I will sort it on Thursday. I'll let you know what is going to happen best wishes elfie

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Hi Elfie, have been to see Prof. Hughes and am trying fragmin , done 3 days. Still got headache, but my family think I am 'sharper'. Will try a swimming training session next week, as that's a good guide for me..hard exercise seems to make the headache worse, (have had heart fully checked) and the aspirin def made me able to swim longer! No joy at the gp, they even griped at the letter from Prof Hughes telling them to give me fragmin. I hope you are feeling better, as it is awful feeling crap all the time. Niamh (ps, I do not swim unsupervised!)

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Hi niamhathome,

Stick to Prof Hughes! He knows what he talks of. He is the best of APS so you are very lucky.

Kerstin in Stockholm

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Thank you Kerstin, we debated about going to someone nearer, but mum said if we were going to pay, we may as well see the best! Actually it was the getting to London at short notice that was expensive, but worth it. He is fantastic, and Kim and Alison are lovely too! Niamh

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Hi , thanks for letting me know how you're getting on, i'm glad you're getting sorted. As kerstin said stick to prof. Hughes . I'm also feeling better, migraines much improved since bigger dose of tinzaparin and started plaquenil . I wish i could swim it's a good exercise but i get really panicky when my head goes under the water (what a wimp ) all the best elfie

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Thanks Elfie. This web site has been a huge help. It has let me see I am not the only person with a continuous migraine, and that there is a physical reason for it, and not just a mental one! I also had the rash above my knees when I saw the Prof. I had not realised it was significant until he pointed it out. Sometimes it is very obvious, and sometimes hardly at all. I hope you continue to improve. Niamh

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Hi niamh yes this forum is excellent , all the very best elfie

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