Hughes syndrome, clots & headaches

After being pescribed warfarin for a venous sinus thrombosis and subsequent diagnosis of Hughes, it was great to have a time with no headaches. But the headaches returned. After a further scan,which showed no clots. etc, I was told that the returning headaches were due to a sudden pressure build up behind the eyes caused by the rapid clot dispersial. So now I have a papilliodaema which needs treating via a lumbar puncture (spinal tap) which should soon relieve the pressure.

I thought i'd share this. as there seems to be lots of APL sufferers who report headaches after anticoagulation. This may be the reason for some of those who suffer!

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  • HI there, your post is interesting and will be most useful to others, please keep posting as to your progress with the treatments AND I really hope you feel much better really soon. I hope the next treatment does indeed take away some of your pain. Mary F x

  • I too suffer with headaches every day and am on a high dose of warfarin. The doctor can not understand. They done a bubble heart echo, and found a hole in my heart which they beleive was caused by a clot, further investigations in 2 weeks. This too could cause headaches, but your comments are food for thought, and I will be asking if this could also be the cause. Thanks for sharing this with us..... Take care x

  • That's Interesting to hear. I had three bloodclots on the brain and two years on I still get headaches despite being on Amitriptyline to help with pain management. I have always suffered with my eyes from an early age, but have perfect vision. I sometimes get some blurring and see stars for no apparent reason, or sometimes when I have overdone it a bit. Hearing what you have experienced is very useful as no one has ever mentioned having a lumber puncture before. Keep us updated on how things go with you as every little helps ( that sounds like an advert for Tesco's!). Thanks :o)

  • hi there i too had sagital sinus thrombosis and sigmoid during and after pregnancy. I needed several LP's to relieve the pressure - and my vision returned to how it was pre clots. Like Sal i take amitriptyline which helps. my clots were back in 1991 and only recently on plaquenil i had return of migraines so had to stop them. Headaches seem to be an issue with APS and for me related to below theraupeutic inr's or high ones. Now the menopause has also reared its ugly head i believe hormones are now also adding to the causes of headaches ;-) i have been on warfarin since diagnosis was made of hughes after the second episodes of clots.

    Hope the headaches go soon they do have a distinctiveness to them ;) raised intracranial pressure headaches i think i could write a book on the differences of headaches ive had over the years ;-) the LP to me felt like a valve on the pressure cooker lid being lifted to release all the pressure - it was well worth the LP for instant relief of the headache - hope it will be the same for you kathyxx

  • Hi

    I was diagnosed with intercranial hypertension 6 years ago with hedachae symptoms and papillodaema in both eyes, I have had lps too but mainy diagnostic rather than theraputic. Opening pressure of about 35.

    I have been on diamox now for years to reduce the pressure, it does this by generally reducing the fluid in the body as its a mild diruretic. This seems to be the treatment of choice for interbranial hypertension (or topamax)

    Doctors think mine was triggered by a clot but none seen on a scan.

    I know what you mean about the different headaches Kathy - pressure ones are very distinctive and mine are always left sided.

    Good luck

    Helen x

  • Hello again ! it's been 6 days after I received a Lumbar puncture to relieve the headaches and all I can say is be prepared for 6 days worth of pain & headaches!

    The procedure itself was straightforward enough, they reduced my opening pressure from 20 down to 13, so a small amouint of cerebral fluid was taken off.

    What I wasn't expecting was the resultant "spinal" headaches I got afterwards, I have since been told that this is to be expected as the spinl fluid recovers, along with the trauma experienced by the cerebral cortex, etc. So if you need to have one of these procedures, ASK ABOUT EXPECTED HEADACHES< ETC, and get some really good painkillers & hydration drinks in.

    Suffice to say, that I cannot really tell yet whether the headaches I was having have abatd, as it's still only day 6, but the headache I Do have is more pronounced around the front/Top of the head, not like the "eye" located ones I was having.

    I'll keep you all posted as to how this has reduced pressure, as I'm due for a eye exam by the eye clinic later on today.

  • I'm really sorry to hear about your Spinal headache I know how that feels and I don't want to paint a bad picture but when I had mine it went on for 10 weeks!!!. Apparently this was due to a CSF leak and should have been treated with a blood patch. Soooo if yours continues for too long don't put up with it and insist that they check for a leak and do a patch which can give immediate results..... Or so I am told! Good Luck.

  • Bit of an update since I last wrote, concerning headaches, etc after the lumbar puncture...

    Well the headaches I were having have more or less completely gone, much to my relief, those headaches I do get are more or less treatable normally with paracetamol. I still get the occasional Tinnititus, usually more so when I'm tired. It's weird that, once you have been diagnosed with a clot, you can get very anxious about headaches, and if they will lead to a return to the "bad days" before treatment!. Another thing that changed, was my INR went really irregular, leading to a reduced dosage of 3 Mg daily, as opposed to the 3Mg, 4Mg alternating ratio. Good news is that I get to see a neurologist sometime soon, and have already received an appointment back with the stroke clinic early January. It wil be interesting to see what;s said there.

    I know that the APS affects that I'm getting now are not a patch on what some of you guys are experiencing, but I thought I would share my case so that you may see similarities and be able to get treatment to fit, so to speak!

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