Misscarriage and migraine

Hi

I'm looking for any help or advice.

I've had three misscariages one at 8 weeks one at ten weeks and one at 12 weeks.

I have practically begged for testing as drs keep saying it's just bad luck.

But one test confirmed my blood clotting was above guidelines. And now I'm waiting for second test.

I've always suffred migraines from an early age. I've been taken in an ambulance to hospital once as they suspected I'd had a stroke. My face dropped on one side my speach slurred and jumbled and arm was tingling .But they just said it was a migraine.

My first period lasted an entire year non stop! I missed lots of school as some days I was clotting so heavily.

No Dr has taken these issues into consideration. But I'm desperate for an answer. And if anyone could shed some light if my symptoms sound like Hughes syndrome.

Sorry for such long message.

Xxx

12 Replies

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  • Hi and welcome you are completely on the right track, make sure the GP does all the tests, push them hard, and better if done at the hospital so the samples don't hang around as they are time sensitive: hughes-syndrome.org/about-h...

    Also do have a good read of the charity website: hughes-syndrome.org/

    Also this contains the list of specialists: hughes-syndrome.org/self-he... presuming you are in the UK, if not we will still try and help.

    Also a film:

    MaryF

  • Thank you so much for replying. Yes I live in the UK.

    I feel drs think I'm being over the top but loosing three babies has broke my heart and I cannot face any more heartache. I've paid privately twice as I've been so desperate for help.

    Xxx

  • I am so sorry you have been through such a terrible ordeal, you can see our list of specialists, please take your partner and or your most trusted relative to the GP as your advocated and INSIST politely and urgently that they refer you, this condition is not to be ignored, and your history is very clear. They need to look after you, and help you get in the best possible condition to try again when you are ready, as they do the blood tests make sure they look at your iron, B12 and vitamin D and also your Thyroid... once you have the diagnosis and help, you life will improve immensely. You are among people on this forum you have suffered in a similar way to yourself and we are all here to help each other. MaryF

  • Hello Charlie and, as my colleague Mary says, welcome to our friendly forum.

    Mary has given you all the right advice.

    Where is the UK are you from? This information will make it easier for other members here to give you local knowledge and advice.

    Best wishes.

    Dave

  • Thank you for your kind replies. I hope the results of my next bloods will shed more light.

    I am from south Wales.

    Xx

  • Hi Charlie

    We do have a patients' group that meets in Bath and we are hoping to arrange our next meeting in November. If you would like to send me your email details in a private message, not in open forum, then I will pass them to our coordinator, Daniella, and ensure that she adds you to our emailing list. We are having a bit of difficulty arranging the next meeting as we have held them at the Royal National Hospital for Rheumatic Diseases (The Mineral Water Hospital) but this hospital, which has been in the centre of Bath since the 1750s, has recently been taken over by the Royal United Hospital and our contact nurse there has retired. However, I have just heard that it will be at 10:30 to 12:00 in the MacMillan Suite on the second floor of the RNHRD on Monday 16th November.

    Dave

  • I have suffered with migraines since I was kid, sometimes having weeks off school as they were so bad. I also suffered early miscarriages and a late one at 5 and a half months. It wasn't until after this combined with 3 dvt's, years of agony with my joints and muscles as well. I wasn't diagnosed until I demanded the tests as they were also adamant that it was all bad luck or weight problems (being 6ft and playing rugby and football meant I had a bigger frame than usual) then when I fell pregnant again I was put on daily fragmin injections and aspirin and I now have a healthy 1 year old boy. Don't give up hope and keep pushing for what you want!

  • I'm so sorry to hear about your losses.

    But you have given me hope to hear your success story.

    Thank you for sharing your experience with me.

    Xxx

  • Hi, I also have suffered now 4 miscarriages since Feb this year. All early 5-7 weeks and again was told with the first 2/3 I was unlucky it was just one of those things. During my last pregnancy I had the test for APS and it was positive. My consultant has said I need another test to formally diagnose but the next time I get pregnant he will put me on twice daily clexane injections, progesterone and HCG injections twice weekly. I m already taking low dose aspirin and will stay on this. It is really important you get referred by your GP to a recurrent miscarriage specialist as your symptoms do sound like APS and after my consultant saying I do not need to wait to have another test, with my one positive test and the fact I am constantly miscarrying he is confident he has found the cause and will treat me accordingly on my next pregnancy. My other concern for you is that during my last miscarriage, just last week, I stopped the aspirin and was really unwell, my left side went numb and I was very scared. I am now ok thankfully and have ovulated again just 10 days after the loss! If you have Hughes it is really important you have the right support and I now feel more confident that when I get pregnant again I will have the support needed. No guarantees of course but I now feel more comforted a treatable cause has been found. So sorry for losses, I know exactly what you have been through, good days then of course the horrible bad days. All the best x please try your best to get referred!

  • Thank you for sharing your experiences with me. Misscariage is cruel. I'm happy you've been rightfully diagnosed. I wish everyone the best of luck for the future. I will hopefully find out my outcome of my test results soon. I'm praying my next pregnancy will be successful if properly treated. Fingers and toes crossed! Xxx

  • Oh you poor darling. I too suffered from debilitating migraines from teens until diagnosis (APS) last year & have also suffered miscarriages and a stillbirth.

    Since I've been medicated I've not had a single migraine & I am being managed through my pregnancy with the wonderful team at St Thomas'.

    My meds for APS include aspirin (75mg) and Daltaperin injections daily.

    I really hope things start looking up for you once you are prescribed the right drugs. I'm sure you will.

    Best wishes

    Hayley

  • I'm so sorry to hear of your losses.

    Congratulations on your pregnancy I wish you all the luck in the world.

    I'm currently waiting for an appointment with my consultant to find out my second blood test results.

    I feel very anxcious waiting to find out if I have APS.

    But Dr has prescribed clexane and progesterone for my next pregnancy regardless of my results.

    Just want answers now. : (

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