Depression

[Jonn]

My memorie is getting worse what can i do

[MaryF Administrator]

I notice you have just joined, do you have a diagnosis of Hughes Syndrome/APS, this is a forum specifically for this disease, please confirm before we attempt to help you. MaryF

[Jonn in reply to MaryF]

Yes

[MaryF Administrator in reply to Jonn]

Ok, are you under one of our recommended specialists in the UK? Being on the right medication helps, and also ruling out being at a low level for Vitamin D, B12 and Iron, and also ruling out any outstanding issues with a thyroid problem. Are you on Warfarin? MaryF

[Manofmendip in reply to MaryF]

Hi John

I second what my colleague, Mary, has already advised you.

Dave

[MaryF Administrator in reply to MaryF]

And I will add that many people feel considerably better in terms of this, when they become members on here, as it reduces the sense of isolation and the peer support is good, keep using the forum we are here to help each other. MaryF

[Fra22-57]

I write all birthdays appointments on my calendar or I would forget.Always looking at it to check things.have notebook in kitchen I jot things down in notebook in kitchen ..anything like remembering to tell my husband things when he comes in,things said on phone calls.if I don't,I won't remember or only bits of things.They say try n keep active and amongst people but when you are disabled and only have an odd visitor it is hard.I have just started reading again. Thought that would help me to jolt my brain into restarting writing a novel I started before becoming I'll.

Also reading about someone else's life story gets you remembering bits about your own

[molly1969]

Word searches and puzzle books keep me remembering words etc always looking up dictionaries. But sometimes it's hard looking for the thing you want. I also write everything in a diary. Birthdays. Work. Dentist appointments etc. I think everyone does. If you've had a stroke it's hard to remember things even next day. Don't worry. Nothing wrong in writing every thing down x

[Lure2]

Tell us a little more about yourself. Are you depressed also? That can happen when we do not understand what is wrong with us. We even think we are crazy.

Hope you have an APS-Specialist as this, besides anticoagulation, is the most important thing. Also read as much as you can about APS (Hughes Syndrome). Read "Sticky Blood Explained" by Kay Thackray.

Best wishes from Kerstin in Stockholm

[Jonn]

Iam depressed as well as having memory loss

[MaryF Administrator in reply to Jonn]

As well as checking out your levels of Thyroid, Vitamin D, B12 and iron, (any of those being out will add to your sense of feeling down, please don't rule out some supporting talking therapies they do help a lot. I can send you a link to directory for your area if you come back to me. Best wishes. MaryF

[Lure2 in reply to Jonn]

I feel very sorry for you. This is a truama in several aspects.

Have you talked to that Doctor who diagnosed your APS? There are so very few doctors who really understand this illness and do not want to show us how little they know. APS is very rare and Prof Hughes found out about it only 30 years ago. Do you have a GP who you could talk to about some antidepressants in a low dose? I have had a low dose since 1992.

Stay on this site and feel free to tell us about your symptoms as we understand.

Before i started Warfarin and was properly anticoagulated I had also very bad memory. I did not know for half an hour if my parents were dead or not.

Very frightering! At the same time i could call up a friend and have a talk. Like living in two worlds!

Kerstin

[Yllek in reply to Jonn]

Hi john

Welcome to the forum.

I understand how you feel and very much feel as you do. I'm newly diagnosed and feel a whole range of emotions!

We are all here to listen and help. Not that I've been much help I tend to just moan a lot at the minute!! Hope you have a good doctor as that's half the battle with this illness X

[Jclif]

I just wanted to offer support. I've been diagnosed for almost 2 years after having 2 PEs.. I just left a dr who has ordered an mri. She is the first to understand how serious my cognitive & memory issues are. They have escalated severely in the past 3 months. I understand how frustrating & hopeless it can be. This is a great forum to help you remember you're not alone & APS is real.

[Lure2 in reply to Jclif]

Hi, Have you now found a Doctor who knows APS and who is willing to raise your INR? If it is possible, try to selftest.

Kerstin in Stockholm