Struggling to remember appointments

[KarenOR]

Hi my memory is getting worse to the point its effecting my work and getting to appointments on time or right day, seeing black dots floating, temper rages that scares me let alone my kids. I had a TIA in December following a nasty ear infection this has left me with a chronic head pressure pain day in day with no let up, got told its a migraine twice until my blood was taken and it was stickier than it should be, neuro team said they will see me in a year why a year? i am in pain now. have had five months off work from December to April and DWP were useless that left me struggling to pay bills in the winter months.

[Jane-Martin]

Hi Karen. I am sorry, but it is not clear, do you have APS? if so what treatment are you on hon? If you are on anti coagulants then they should be adjusted if your blood is 'stickier than it should be'. You are right you should not have to wait a year for help. What area do you live in?

I am afriad I dont know what to suggest until I know your diagnosis and treatment. I did try to look it up in your profile, but dont see anything there to help. I have not done my personal profile either....keep forgetting!

Love Jane xx

[Angelpaws]

Hi Karen, with regards to the memory problem, I have developed a system to help me using a notebook and the tiny post-it flags. Better than a list as I can move them around during the day as priorities change. It's vital for me as I don't remember to take meds or even have a drink sometimes. Larraine x

[KarenOR in reply to Angelpaws]

I forget to take meds when the kids put it the cupboard, at work i am slower than normal and my managers have noticed.

[KarenOR]

Jane i am on blood thinners, pain killers gabapentin, morphine and

beta blokers, as soon,as i had warfin my head pain in my head went and memory came back. I live in Leicestershire

[Jane-Martin in reply to KarenOR]

Did they increase your warfarin when your blood showed up too thick? What is your target INR? If your head pain eased (as mine did) when started on warfarin and it has now returned and your memory has got worse again, then perhaps your target INR might need to be raised. You cant wait a year with such severe symptoms, can you chat with your GP and perhaps get him to refer you to a Rhumatologist who understands APS. Perhaps someone on this site knows of a doc close to you. Else demand a referal to London. I hope you feel better soon. Love Jane xx

[daisyd]

Hi horrible isnt it, my brain is now on my calenda thats if i remember where I have put it my pills are in a dossit box so I know when I have taken them, If letters have to be sent I write on the calenda when I have to do it and when I have. I write lists for everything including what I have to do I write it on the back of the calenda page ( has to be a weekly calenda the month ones are too long.

Just inside the front cover I have the pin numbers for things and pass words.

see what I mean the calenda is my brain !I take it the blood thinners are Warfarin or Clexane

Love Karen

[MaryF Administrator]

Hi there, I hope they hurry up and give you more sensible care, perhaps the neuro is not very up on APS... lots of people from here are in the Midlands area, and could probably flag up a more user friendly medical contact. This does not sound right, seeing how it goes for a year, do please let us know how you get on. Perhaps a referral elsewhere, and if feeling defeated, ill and muddled - take somebody along with you to the appointment with GP or neuro, who could help you politely to fight your case! Mary F x

[KarenOR]

My GPs are really good its from the referals that are the pain, i have really started to struggle and its a painful struggle now

[KarenOR]

Does anyone else get tired quick too?

[CanaryDiamond10]

Yes, you have a lot of good company among the APS population as far as tired goes, myself among them. I'd like to know if anyone who has been diagnosed with APS does NOT get overwhelmingly tired? What do they (non-tired patients) attribute this to? A less symptomatic case? Diet? Stress? Hormones?

KarenOR, could some of your medications be making you tired?I have heard morphine can make one cranky and does not play well with other medications. How about the combination of the medicines you are on? Some tweaking of dosages could be in order. That could be achieved by phone to the prescriber.Maybe something to mention once you are referred properly.

I agree with Mary. It would be a great idea if you could bring someone along to your appointment with your GP or neurologist who could politely argue your case, bring them pertinent information on the disease and document all she can for you during your appointments. Bring a list of questions you want answered and ask her to write the answers down as well so you can refer to it later. Best would be to tape record it, but I do not know if Brittish law would allow that. Confidentiality laws and all that.

[KarenOR]

Thank you my GP is referring me to London to be closely looked at for APS the GP are taking advice from London on how to manage my pain, ive been taken off morphine now, I tire very easy and am really struggling at work, the other day I was sat in the room at work fighting back tears because of the pain in my head.

[KarenOR]

Update been doctors upped on my meds, my left leg is getting worse the doctor could push my leg down with ease. Head pain is got to the stage where its getting to painful to work some days standing and sitting is getting painful.