Haematologist still says my migraines have nothing to do with APS/Hughes

Hi there this is my first post :), I have recently been diagnosed with Hughes, I had hepatic artery thrombosis in May 2009, I had had a liver transplant in 2004 due to autoimmune hepatitis and the thrombosis caused me to have a second transplant. I had never suffered with migraines before my first transplant but had my first migraine about a month post transplant, and continualy in the years between my transplants, I was put on warfarin on discovery of the thrombosis in may 2009 and since then I had noticed that when my inr was down I suffered migraines, I have now been on warfarin for 3 years and have migraines when my INR is low.

I pointed out the connection to 7 doctors including my liver doc, GP's and Neurologists all of whom told me that my migraines had nothing to do with my INR levels, it was only after reading an article in a magazine where a woman had Hughes Syndrome that I insisted on being referred to a Haematologist, and have now been told that I have Hughes, I asked the Haematologist were my migraines associated with my Hughes and she told me no, that it was extremely rare I have spoken to two other doctors in the same clinic who have said the same, I am baffled, how can they say this when it is clear not only from my migraine and INR diary but in every article I read about Hughes that Migraine is a symptom.

Has anyone else experience this with the Haematologist, I feel like I'm fighting a loosing battle, yes I know I am on the treatment for Hughes but find it quite scary that they can dismiss one of the main symptoms.

11 Replies

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  • Hi there, you are well over half way with your diagnosis... some think they know all about Hughes but have only read the half of if rather than the finer detail. Let us know where you are located so perhaps others can help you with medical names who might help more. Also please feel free to download any of the papers from The Hughes Syndrome Foundation to gently help with the medical educational path. Sorry it is tough for you - a familiar tale I am afraid, and thanks for posting. Mary F x

  • Tanbelan, what you are experiencing with headaches being worse at a lower INR is very well described by Prof Hughes and many patients on here (myself included) experience the same thing! Per Prof Hughes, many require an INR 3.5-4 to be free of migraines and other neurological symptoms which are different for each person, but also may include trouble thinking, word finding difficulty, seizures, etc. It would be nice if doctors knew more about the non thrombotic and other aspects of APS, but sadly many don't--but think they do!

  • I would clip those articles from the patient with Hughes in addition to the ones provided by this site, and send them to the physicians who said migraines have nothing to do with INR levels. Politely ask, in writing, how they justify their answers in light of the attached? Tell them it is in your personal quest to learn about your diseases. It's my bet the first two doctors only asked the haematolgist whom would know the most about that blood part of the disease. An autoimmune specialist would know that migraines were a symptom for some, but not all APS/Hughes patients. Some with INR results that correspond , but not all. That's the insideous part of this disease. It's just not the same for everybody. A lot of people get headaches, but they vary in quantity, pain level, duration and even explanations. There is a basic list of like symptoms, but not all patients have all symptoms and similar symptoms vary in degrees of pain, duration, etc. To confuse further it can prodouce symptoms which mimmick MS and is often misdiagnosed.

    I'd try to get a response in writing and I'd even ask if they have read anything they could provide you that they based their opinion on. Always remember, that's all you are paying for. An educated opinion. There are a lot of opinions out there. Some listen, some don't. Be certain you have one who listens to what YOUR body IS DOING. Not what someone says it should be doing or not doing. If this disease is anything it is individual.

    With regard to your 7 physicians. What ever happened to continuity of care? These professionals should be meeting on your case quarterly or however often they have you set up for check-up. This needn't be detailed unless it IS detailed. I wouldn't think one would have to request it. I would expect it. Maybe an inquiry as to if and how often these professionals meet regarding your case would be a question in order?

    I hope this helps you get a written answer regarding your INR query. Perhaps the doctor will even enclose something to back up his opinion. That would be helpful. At least YOU can educate him with your enclosures.

    Believe it or not, you will get through this. But, some doctors just don't make it easy. Don't be afraid to change to a team that might be more educated on the disease as well as better listeners to your specific symptoms.

    Best of luck. Wish I had that magic answer for you, but here is a starting place to pin them down and begin to collect your own library of ALL of your diseases, My nephew is a pancreas kidney transplant patient, twice over. He must be in his 40's now but was a severe diabetic since age 5. This one has held a year. He is a home nurse and already back at work! A very positive person.

    I wish you strength, and a sense of humor to combat the frustration.

    Canary

  • Hi there, I am on the same merry- go - round and use this site as backup to my physicians, as my migrains also get worse as my INR decreases, it is decreasing every week now, i am now under 2 1.8, will be interesting to see if he increases my warfarin levels now - as it takes me 6 months to get to 3( v frustrating to suffer the migrains in the meantime)

    Hang in there as we all do like monkies

    All the best Kris

  • This may be dated information, but when I was first diagnosed I was told that patients with venous clots, such as DVTs, did well with an INR of 2-3. But par patients with arterial ocelots, such as TIAs and migraines, had to belt thinner as their APSzantibodies were more reactive (talented?). Perhaps your docs do not recognize the distinction?

  • Keegan, have you considered asking for lovenox/clexane to use during the periods when your INR is so low you get headaches so you don't have to suffer?

  • Sorry, Kelgem (iPad changed your name)

  • Wow thank you all for your replies, its nice to know Im not alone, my range is between 2-3 but I find when im down below 2.5 I have headaches and fuzzy head, forgetting words, really tired, etc etc, I had been putting these symptoms down to so many other things as I do have other autoimmune diseases but the more I research hughes, a lot of my symptoms are to do with that. What's even more annoying is that the haematologist was so flippant about the diagnosis, when I asked a few questions like should I be worried should I be looking out for anything in particular like symptoms etc, she just said no as I was on the treatment (warfarin) that the diagnosis didn't really make much of a difference it just put a name on it. She told me that there is no need for me to see her again as there is nothing more they can do for me, that because of my hepatic artery thrombosis I would be on warfarin for life and that was that, so Im a bit up in the air about the whole thing, the more I read about it the more questions I have and now I don't know where to direct them, I suppose I could go to my G.P but he is of the same attitude as the haematologist ! Are you under the care of a haematologist or just your G.P's do you see them on a regular basis. Thankfully I haven't had any other clots but i don't want to just hope that it never happens again if there is something more that i can do to prevent it. MaryF I am located in Dublin.

    Thank you all for listening :)

  • Hi Tanbelan

    Welcome to the Forum.

    Migraines are a very big part of the picture for Hughes Syndrome sufferers and certainly when I was on Warfarin (Target INR 3.8 - 4.2) if my INR dropped below about 3.2 I would get them. After 7 years of being free from migraine under normal circumstances, i.e. INR in range, the migraines came back and had to be treated with a low dose 20mg of Amitriptyline. I'm now on Fragmin rather than Warfarin, for other reasons, but I still take the Amitriptyline to keep the migraines away.

    You should certainly give you Haematologist some of the information from the HSF website and Kate at the HSF may be able to point you to papers written about migraine and APS. There is a paer by Drs Cuarado, Khamshta & Prof Hughes entitled 'Sticky Blood and Headache' publused in the Jouranl 'Lupus' in 2001, which deals with the problems that you are experiencing.

    It certainly sounds as if your target INR may be too low and you might like to consider seeing Prof Hughes, privately, at the London Lupus Centre, London Bridge Hospital.

    Best wishes.

    Dave

  • A hematologist diagnosised me and I use my GP to coordinate my care. I see a rhumy every six months, an optomologist every six months (cause of the plaqunel) and my urologist as needed. Crazy I know.... good luck!

  • Oh ya, a little foggy right now .... I forgot to say I get migraines also.... my INR has fallen below 2 for over a month now even with an increase in warfarin and I've had a steady headache the whole time...

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