This will probably only really been relevant to uk residents as its about a TV programme.
So... This week there is a week long storyline on emmerdale. Just sat down to watch the second episode and cannot for the life of me remember what happened last night! Have not got a clue how it ended. I try and think and my mind goes totally blank! This is so frustrating just said to my partner 'is there actually any point in me watching this special week long story as I already can't remember what happened last night!'
It's hard enough following programmes as it is but when you've really got to follow a particular story it's impossible!! Ha!
I am like this with reading too and I really like to read I have to put a tick in the front of all my books so I know I've read it!
I can watch most of a programme before I realise that I've watched it before or my partner will often notice before I do that I've already seen it!
Is this just me or does anyone else relate to these specific things?
Sorry, I have gone on a bit!!
Written by
Sara_A
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It does sound you are rather brain foggy currently, have you had your medication reviewed of late? INR? People often go in and out of this, particularly if flaring for some reason, hope you feel better soon. MaryF
Yeah I saw my rheumatologist 5 days ago he's increased my azathioprine as I've been having a flare for last 8 months since having my baby. He's sending me for an mri anyway to do with my headaches that I've always had really and is changing my aspirin to clopidogrel as he says it's better, did discuss daily heparin for headaches but I'm not keen.
Maybe my memory is a bit worse than normal hadn't really noticed
Keep an open mind to anticoagulation, and also your symptoms, it sounds like you have a very supportive consultant there. Also make sure your vitamin, D, B12 and Iron and Thyroid is all ok, as that can add to feeling awful. MaryF
I am on vitamin d as always been low, had b12 checked recently all ok. Yeah will see how it goes I had heparin for 10 months for my pregnancy and hated it, but I'd obviously do it if i really had to.
Could just be tired as baby and toddler up in the night at mo!
Oh dear! This was me a few weeks ago. I watched a program (I record a lot to fast forward through the ads) and my husband asked why I was watching it again. I told him I hadn't seen it and he told me we sat down together and watched it 2 days ago. I had absolutely no recollection of the story at all, or having watched it and we argued about it. I made him fill in some gaps to prove he actually watched it!
May I ask what anticoagulation drug you are on after your trip to Hong Kong? Clexane or Rivaroxaban or what?
I can tell you that my memory is not totally good even if I am on Warfarin in the right level. My friends also have trouble finding names ( they are slightly over 70 so it could perhaps be normal) but I have trouble to find names for things and I say the wrong word for it (people laugh sometimes and it can be a little embarassing). If I am nervous it can be difficult to express myself.
Before Warfarin sometimes I could not remember if my parents were dead or another time what occupation my children had. That lasted only half an hour and came rather seldom (frightening) because after that I started Warfarin. At those moments I was on baby-Aspirin.
I should have been on anticoagulation earlier but as I had micro-embolies which were not seen on the Scans and I did not know what APS was and if I really had it, I did not want Warfarin (known as "rat-poisson").
The Doctors actually suggested that I should try it but I waited to wait. After I had read "Sticky Blood Explained" I understood that I had APS and that I had to start anticoagulation.
I think those moments make damage to our brain and that damage will not go away with anticoagulation. It is for that reasons it is so important to have our blood thinned at the right level and do not wait till we have a big stroke.
That is why I am on this site for such a long time also, trying to tell people not to wait but educate themselves and find an Expert who knows what treatment we need. I am primary APS but many members have also other autoimmun illnesses, some "cousins" with APS and an APS-Specialist who often is a Rheumatologist knows these diseases also. It is a tricky illness and we are all different.
It was not my intension to write such a long answer but it just happened......
I'm on Rivaroxaban (20mg)+Aspirin (100mg) daily. I had to have a small surgery so had to stop the meds 48hours before and had a Clexane shot in the 24 hours before then resumed Rivaroxaban 12 hours after surgery. It was after this time my brain went to sludge for a few weeks! I have since spoken to my Haematologist who said that in future if I need surgery I should go to hospital a day early and go on IV Heparin that will run until 4 hours prior to surgery and commence immediately after then follow on with Rivaroxaban. I did ask what if there's an emergency (bad car crash, deep wound etc) and he said there's enough stuff to throw at me to control bleeding if it happens. The more important thing to remember is to take Rivaroxaban at the same time each day to have optimum anticoagulation - the one thing I do remember.
I still do have moments when I can't remember the name of things or people and I just say hand me that "thingummy' and hope that whoever I'm talking to can read minds!
Hi Sara_a. Ditto! I've just had to keep going back to check your name 3 times before writing this and then a forth to make sure it is remembered correctly. What are we like?? Yes it is problematic. I need and want to go back to work, but I am afraid I won't be able to cope with remembering procedures. Life can be so distressing and cruel. Take care.
I'm sorry but that first bit did make me laugh! I know it shouldn't but u have to laugh about it sometimes!
Well I've just rang my gp as the last 2 days I've been getting more pains in my head and really forgetting things more than normal! My mind just goes blank and takes me a while to think really hard then it sometimes comes back. His answer over the phone was 'I don't think it's a stroke try to stop thinking about it it's probably because u are worrying about it! Let's hope he's right! Don't really know what to do now I hope it will be ok'
Yes it's very distressing, I also find it really hard when work want me to do new courses cos I just can't do it I can't think and study its horrendous is that how u get?
Hi Sara I think you need to find a Specialist in Aps. As Kerstin say you don't want to wait until something happens. .I don't know where you live but there are many Specialists around the country. all the best Elfie
Hi I'm in Scarborough, I've been under rheumatologist at James cook for a few yrs and I feel a bit reluctant to question him about seeing an aps specialist now when he's always treated me. I've not had a blood clot before and am changing from aspirin to clopidogrel at the moment
I'm also in Scarborough as you probably know.I'm just a bit worried that aspirin or clopidogrel is not going to be sufficient anticoagulation if you are suffering with bad headaches.I had really bad migraines which were helped by aspirin at first but after ayear or so I needed something different. I started the Tinzaparin injections and the migraines were greatly reduced. If you like we can meet for a coffee in town sometime for a chat .All the best Elfie.
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Please can anyone recommend a good Rheumatologist in any of the following hospitals:-
Appeal for APS specialists in the UK (sorry - rest of the world will follow at a later date!)
Awaiting blood tests impatiently
jerking arms and legs at night
