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protein s blood clots and headaches ?


blue-kat

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  • 2 months later...
  • 2 weeks later...

I have one right now but it's not related to my Protein S Deficiency. If you suffer from them it's worth getting to know your 'triggers' and how to watch for them. There is often a day or two of warning with milder symptoms. My triggers include skipped lunch, stress, and lack of sleep. I have domperidone for the nausea, and co-dydramol for pain relief. I also use 4-head vapour stick and an eye mask.

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  • 11 months later...

Are you sure? I have terrible headaches that actually make me sick if I dont lie down. My brother has headaches often too. We both have PSD I never linked it before but would be interested to know who amongst those sufferers of PSD also have frequent headaches. It could be medication related? Or BP? I often feel some of my medical problems are related to PSD despite no one actually saying so. I have endometriosis and I believe it is made worse by my PSD. I have kidney problems too as a result of a coma caused by PE's, I wonder if there just isnt the correct info linking it to PSD. In th UK so little is known of this problem. I almost died, I was on ventilator a month in ICU and doctors just told my family I would never wake up. The reason? They had absolutely no idea how to treat my multiple clots in my lung. I developed pneumonia and the clots became infected. It was only my Mum that convinced them to search and consequently they contacted doctors in the states who advised them. Sadly I suffered a brain abcess and stroke while in the coma but obviously I made it through and woke up but it made me acutely aware that doctors and consultants here just dont know enough about this illness. Isnt it possible then that there may indeed be links to other symptoms or conditions that we are just not aware of yet?

I have one right now but it's not related to my Protein S Deficiency. If you suffer from them it's worth getting to know your 'triggers' and how to watch for them. There is often a day or two of warning with milder symptoms. My triggers include skipped lunch, stress, and lack of sleep. I have domperidone for the nausea, and co-dydramol for pain relief. I also use 4-head vapour stick and an eye mask.

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I have been back to the doctor about my migraines since I last posted because they were becoming more frequent. I was also getting a regular niggling headache that I would wake up with most days and stay with me for the rest of the day (diagnosed as a cluster headache). For the cluster headaches I was started on a low dose of Pizotifen. For the times when I had migraines I have tried using Imigran (sumatriptan succinate) and Naramig (naratriptan hydrochloride). Naramig is supposed to be better than Imigran for people with thrombophilia. However through trial and error I have found Imigran works best for me, even though it causes pretty painful phlebitis and muscle tension that makes me feel like I've got flu. My Pizotifen dosage was doubled and this has helped to reduce the frequency of migraines and has solved my cluster headache issues. Pizotifen is now part of my daily medication. Imigran is used reluctantly but is still better than going through a migraine, especially since if it worsens and I'm sick it will create pin-prick broken blood vessels around my eyes (due to my warfarin). At times of migraines I'm cutting back on the stronger pain meds and using Imigran and eye masks with bed rest. I think the main thing to learn from all of this is that if you suffer from migraines then you can understand your triggers better, and get some helpful meds, but what works varies from person to person and unfortunately you have to be a willing guinea pig to get to a better place.

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  • 2 weeks later...

I have had migraines/headaches for a long time. My father also had migraines. My father was more recently diagnosed with a clotting disorder (which from his doctors results may require me to get more testing) at one point Protein S and now "prothrombin gene 2210 mutation". His migraines have so far stopped in the 3 or so months since his stroke (He should have had his blood tested when I had my sisters get tested!!!!). I'm in the process of switching doctors and am hoping that this new one will be able to help better than the one I've had where his new nurse couldn't find my pulse for 3 visits!!

Amy

Diagnosed with Protein S deficiency Oct 2007 5 weeks postpartum with a 4" clot

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  • 1 month later...

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