I'm writing this with much fear and trepidation but I'm desperate for a solution so here goes. I had a thalamic stroke almost 2 year ago aged 53. I recovered well, took early retirement, worked hard lost a 3rd of my body weight, religiously excercised and radically changed my diet. I gained confidence and even had less bouts of the hideous stroke fatigue. Then 4 weeks ago I had just encouraged my husband to go away and leave me home alone with the dogs, I felt so accomplished and independant and strong THEN 10pm my first ever nosebleed, horrendous bled from my eye also, very frightening ended up in ambulance and hospital A&E I live in a rural area its an hour away plus the main road closed overnight for maintenance for 6 weeks. Anyway that was the start of the continuing nightmare of heavy and long bleeds all but 3 needing A&E it bled anywhere from 3 to 7 hours, 4 lots of cauterising 3 lots of dissolvable packing 2 attemps at non disolvable packing with forceps that was barbaric and has left me traumatised. I had no idea I could be subjected to so much pain and torment. Im told Clopidogrel doesnt cause nosebleeds but can make the bleeding harder to stop. My BP is well controlled ie below 120/80 on Amlodopine and I take Atorvastatin, I also have Pernicious anaemia and get B12 injections. I have been on and off Clopidogrel after cautery but the longest I was off it was 9 days when I bled heavily again and choking on blood again, bled from tear ducts so I couldnt see thought I'd die before a doctor could see me. Im sorry to be so macarb but Im rock bottom over all this and each night I take that pink tablet I feel Im taking poison. I want to heal and it interferes with it . I've read it can take upto 10 days for plateletts to return to normal after ceasing it and also that we need thinners to reduce chances of having another ischemic stroke. Im waiting to heal from last cauterising done by a private consultant on Friday, it can take 2-4 weeks if I bleed in that time from scab coming off too soon Ill be back to being patched and dispatched from A&E normally from a jnr doctor and in all of this Covid is on the rise, its my nose its where the virus enters. Im frightened and on tenter hooks and hate the realisation of the severity of taking blood thinning meds. Anyone got any pearls of wisdom, can we ever really come off them, Ive read that even coming off them could cause a reverse reaction and increased clotting.
Carole, I'm sorry you are having such a hard time. I am no expert in these matters. But I did have a stroke 2 years ago caused by afib. The cardiologist put me on Eliquis, which is an anti-coagulant that seems to be a much used medication for people who have had a stroke caused by afib. I have read that what you are taking is also used, but it is a very different type of medication. It is an anti-platelet. I'm not sure which is the best for you, but since they are different (and there are others besides these), why don't you ask your doctor about it. Maybe there is something else you could take that wouldn't cause the problems you've been having, but would still help to prevent another stroke. I went through three different medications for my afib before I found one I could tolerate. It never hurts to ask--even a phone call to the doctor. The squeaky wheel gets the oil. I'm sure there's an answer out there for you. Love, Jeanne
Hi Carole
What a dreadful time you are going through it sounds awful. Like everyone on this forum we are not medically qualified, but individuals speaking from experience who take personal responsibility for our health (that's the disclaimer out of the way!). Although I do not take Clopidogrel I have read so many comments from people on this subject over the last 4+ years. This site is not very easy to use but if you can dig into the forums and searching on Clopidogrel as the key word, you will get a flavour of people's experiences. My sense is not good, but the heavy bleeding you are experiencing I can't remember seeing. One doctor some 2+ years after my haemorrhagic stroke thought it was an idea to put me on this medication. I declined! One size does not fit all. Someone on here also said the BHF heart website also had information on alternative medication. As Jeanne said keep pushing the doctors (not easy) and seek a change which you can live with and which suits you. Good luck Pat
Hi thanks, I have spoken to a nurse practitioner she has agreed to write to the stroke team for advice on possible alternatives. Sadly on reading up I think all meds to thin/stop blood clotting goes against what you want it to do in an emergency situation but maybe they can suggest something. Many thanks
Hi thanks Pat, it has truly been horrific. Im awaiting a response from the stroke team re any alternatives but fear that any meds which stops our blood from clotting to prevent another stroke also causes us great harm when we need our blood to clot as it was designed to inan emergency. Its dawning on me quite how radical these types of meds are. I suppose Im not medically trained and advancements all the time so perhaps theres hope of an alternative.