Memory issues

[Tomcat]

So for some years now my memories been awful, I forget most things, ie..came back to finish the last year of my degree and couldn’t remember how to use the software. I can go somewhere I’ve been dozens of times and not know how to get there!! Conversations, appointments etc are all forgotten. I’ve also noticed that my thought processes are awful, a few times someone has asked me a simple enough question but it just leaves me with a blank head, like literally nothing... I have to ask a few times and then either it starts working or I just give up. I was on Hydroxychloroquine and stopping taking it had helped a lot but has by no means cured it. I’ve been told my INR should be between 2-3, is this right?

[lupus-support1 Administrator]

This must be very scary for you. Please go and see your consultant as soon as possible. You may have to see your GP first and they may be able to get you an urgent appointment.

There are many reasons why this is happening so please try and get this appointment so the doctors can help you.

Stay safe and be well.

Ros

[jetjetjet in reply to lupus-support1]

Hi Tom I am also a Triple Pos. and my memory ha been on A slow decline for the last couple of yrs now . But recently i had some very emotionally bad things happen and the added stress is what i believe has made it worse and a sleeping problem also - I have been working with my Doc. have you also had sleep problems - i also am on Hydroxy . 400 mg daily . I don't see your age in there But i have had APS since at least 2009 and i am 66 years young HA . I take muscle relaxers and Gabapentin . also pain meds all daily are you taking any of these others that i mentioned . curious to know. Sorry for slow response .not having good days But very interested don't see a lot of males on here . you began here in 2012 . Lure always has good advise - i know her well and she tells me the same ..

[Tomcat in reply to jetjetjet]

Hi Jet, I’ve had this for about 25 years (if my memory is correct), I’m 50. I take three blood pressure meds, warfarin and steroids, I used to be on Naproxin for the pain but tbh I’m not really in that much pain any more.

My main problem these days is brain fog and memory issues. Its awful most days. I’ve seen neurologists, Hematologists, Rheumatologists etc and none seems to be interested in offering continuing support.

[jetjetjet in reply to Tomcat]

I cut my Gaba back from 2,400 a day to 1,200 a day - my doc questioned why i wanted t do it is because i was having weird things going on So i now am going to see about picking it back up . My Hydroxy has been OK .

[Tomcat in reply to jetjetjet]

I was on Hydroxy but only as prescribed by my Gp, after suffering with memory problems I did some reading and that was one of the side effects of it so I stopped taking it. My aches and pains are nowhere near as bad as they used to be so I dont miss it, my memory has improved though not as much as I’d like

[Lure2]

Hi Tomcat,

I read that 2 years ago you did see a memory-specialist for your bad memory. You did see him for 6 month and they said you did not have dementia-issurs.

I asked you to find a Specialist of autoimmun illnesses who understand that we have too thick blood that has to be properly and stable thinned. Have you now found a Specialist?

As I understand you now use Warfarin with an therapeutic value of 2.0 - 3.0. I need an INR of 4.0, but some of us can have a bit over 3.0.

If you still have typical neurological symptoms from APS perhaps an INR of 2.0 - 3.0 is n ot sufficient.

Also I know you had B12 tablets to take but you stopped to take them and our Admin HollyHeski said 2 years ago that you had to take them for life. Ask also to have a thyroid-panel and D-vit. Perhaps a GP could take those bloods.

Please try to get to a Specialist as soon as possible as you should not go with these neurological symptoms. Please let us hear how it goes for you!

[Tomcat in reply to Lure2]

Thank you, this is part of the problem, remembering to do things. My heads such a mess at the minute but i have no choice but work as we dont get sick pay

[Lure2 in reply to Tomcat]

Hi Tomcat,

I know. APS means that when our blood is not thinned enough most of us get a lot of neurological symptoms. Severe brainfog and memory-issues. I had those before I started Warfarin and when my INR was set too low.

I always write everything down. I do hope you will feel better. Do you have someone who can help you to get in contact with a Specialist?

[Tomcat in reply to Lure2]

How is INR calculated? Ie.. my own personal INR. I would dearly love to have my head working properly again, it makes me look like such an idiot at work at times.

I’ve only been on Warfarin for a relatively short time (maybe 6 months to a year?).. and I cant recall if its made my memory better or worse, I was on aspirin previously. I’m just starting to consider ringing a specialist to try to get some more help.

[Lure2 in reply to Tomcat]

I can tell you what has happened to me here in Sweden. I have had all three antibodies positive in high titres for several years. I started with Aspirin but after some years with TIAs and doublevision and loosing my vision on one eye for a short time I just had to start Warfarin even if I did not like trying "rat poison."

I started with an INR over 3 .0 to begin with and felt much better, but not before I was at an INR of 4.0, I did not have to fall to the ground. At that time I did not have a selftesting machine so rather often I was too low in INR without knowing it and I therefor fell to the ground without any reason and not able to hold out my hands to protect my face. I have had a Hematologist (Specialist in APS also) helping me to stick to an INR that suits me and helping me to get a Selftesting machine. selftest every three or second day at home and parallelltest at the hospital every second or third month when I have a machine at home that is.

It is a lot of different symptoms and different organs attacked by this illness though but many symptoms we have in common.

Many sufferers can not use a selftesting machine as they can not get the possibility to selftest as often as they need. Cost a lot among other reasons.

If you can not selftest you should be able to get to a clinic or hospital much more often so you could get an INR steady and high enough. It is a tricky illness indeed but we need a Specialist and so many have had to fight real hard to get to this Specialist. I do hope you can do manage to get to a Specialist who can help you. The INR (thickness of our blood) changes a lot sometimes without our knowledge. That is why it is important to test the blood often.

Talk to a Specialist who understands your situation and I am sure he will help you to manage APS a bit better. This was one of my longest things.....must eat now.

Hope I helped you a bit.

[Lure2 in reply to Lure2]

Those Specialists you did see were not specialists on autoimmun illnesses like APS. Not every Rheumatologist or Hematologist is. Usually the Neurologists do not understand that our problem is our sticky blood first of all.

But the Doctor who now gives you Warfarin at present would be possible to at least talk to and explain that an INR of 2.0 - 3.0 is what normally people without APS get when having heart-issues. A Specialist of APS will at once understand that you need a higher INR than 2.5.

We have to fight but please do not give up. You are so young; 50 years. I am 76 now but I have found my Specialists and that is why I try to help others as I nave noticed what a big difference it can be to have our blood thinned the way prof Hughes told us.

[Tomcat in reply to Lure2]

In that case, whats an average INR for someone with APS? I had no idea that the level they have me on is for a normal person.

[Lure2 in reply to Tomcat]

I am not sure it is, but usually when you get bad heart-issues you get Warfarin with a quite lower INR and if your Doctors are not specialized on APS, then they do not know that we have thick blood that has to be thinned properly at quite a higher range. That is one of the most important things to have a Specialist who has that knowledge.

How high that range should be is very individual as to the person, number of antibodies and number of titres and what symptoms he has and also other autoimmun illnesses like SLE, Sjögrens, RA etc etc.

Most often you can hear from what the Doctor says, if he is interested and knowledable in your illness if you ask a couple of questions. Test him in a sort of way.

Usually we need an INR between 3.5 - 4.0 or a little less or even a bit higher but as I said it is individual.

Usually with Lupus Anticoagulant positive and primary APS and perhaps also neurological symptoms you need the higher INR.

I am not a Doctor but as I have been very interested in this illness and been here on this site for several years I have "picked up" some things. Hope that helped.

[Lure2 in reply to Lure2]

I can tell you that I also had very high bloodpressure several years ago. Better after I started Warfarin also. Can also go with APS. I take also now 3 heart/bloodpressure drugs so it has stabilized. Important to keep it down as I also have high Pulmonary Hypertension and 2 leaking heartvalves (also may go with APS). I feel fine though. I have very good Specialists here in Stockholm.

I eat a lot of greens and take a walk every day. If you eat greens you may have to eat more Warfarin as the greens will lower your INR. Therefor I eat the same amount every day and so there are no difficulties. Merry Christmas to you!

[Tomcat in reply to Lure2]

Thank you so much for all the advice, I really appreciate it. I also have high blood pressure and I’m on 3 different blood pressure meds. I’ve been going the gym a lot in the past as I was over weight, I’m due to start going again in January so that covers my exercise. I’ve had this condition for a long time now (in excess of 20 years) and other than my original specialist who actually referred me to Dr Hughes himself I’ve not actually seen an APS specialist. At the time Dr Hughes was willing to see me but as my symptoms where being well managed there was no point.

[KellyInTexas Administrator]

Hello Tomcat.

Lure has given you such good advice.

And Ros wisely states what you yourself know- get in touch with your specialist.

Start writing everything down. Everything. Make it a habit.

My neurologist sent me for neuropsychology testing and counseling because the testing results for my memory ( especially short term) are so poor.

I was given tips . Mainly- write everything down. Get a calander. Set alarms on iPhone- label the alarms and reminders. But let the old fashioned calander serve as the template for phone.

[NanaPam]

I have had the same problem. They keep my INR between 3.5 and 4.0 otherwise I start having TIA'S if it falls lower than 3.5. Everyone is different with the INR levels. And yes I take Hydroxychloroquine. I also take Gabapentin for fibromyalgia. I feel like an idiot when I can't remember things. So I definitely hear you

[Tomcat in reply to NanaPam]

Can I ask what a TIA feels like? I have certain ‘episodes’ when I’m ill and I’ve never been told what these actually are.

[Lure2 in reply to Tomcat]

They are microembolies or clots disappear within 24 hours of time. Otherwise they are some sort of stroke. Neurological symptoms of different issues that will go away again. How is your own "episodes"?

Better you tell us about them. Can be followed by a real stroke that is why Specialists of APS want us on anticoagulation. And an anticoagulation that is high enough and stable.

[Tomcat in reply to Lure2]

If my bloods out then I get these ‘episodes’ that I can feel coming on seconds before they happen. I usually go very weak, sometimes I get hot and occasionally dizzy. Usually passes quite quickly. I also do sometimes lose sight in one eye for a few minutes (kind of creeps in slowly till I cant see then creeps back out again)

[NanaPam in reply to Tomcat]

For me , I get confused and the left side of my face goes numb. It usually goes away within 45 minutes. Sometimes they're worse and numbness spreads down into my left arm. When it's over, I just don't usually feel well for a day or two.

[Lure2 in reply to NanaPam]

2 years ago we "spoke" and you had a lot of different autoimmun illnesses and had Warfarin with a thereapeutic INR-range of 3.5 - 4.0.

I wonder if you still have a Specialist which you no doubt need for all your different diagnoses? You should absolutely not have those neurological symptoms you mention with that high INR on Warfarin!

I guess you do not have Warfarin today or you can not stay at a steady level which you need. Do you feel those symptoms if your INR is at 4.0?

[NanaPam in reply to Lure2]

Those symptoms I talked about normally only occur sometimes when my inr falls below 3.5. I have a primary care doctor, cardiologist and nephrologist. I haven’t been seeing a hematologist or rheumatologist recently for financial reasons.

[Lure2 in reply to NanaPam]

Yes, I can understand that. Then you should not be under an INR of 3.5!

You and I have the same therapeutic INR range (3.5 - 4.0). When I am under and INR of 3.5 I must take a Fragminshot not to have a clot or emboli etc. You should absolutely also have that. Many here have that.

Talk to the Doctor who is responsible for your Coagulation. Obviously you have neurological symptoms when your blood is too thick. Good Luck!

[Lure2]

I had also those Amaurosis Fugax (loose vision on one eye for some minutes) and the Neurologist at that time said it was probably some form of TIA and that I should try Warfarin. Today I have my other two Specialists. Is it one eye always and the same eye every time?

You should see an Ophtalmologist (eye-Specialist) and also talk to the Doctor in charge of your Anticoagulation and tell him or her that perhaps you are not correct anticoagulated as you get those symptoms.

Anyway you should do something about this as soon as possible. How many antibodies were positive when prof Hughes diagnosed you several years ago? Do you know if you are Lupus Anticoagulant positive?

[Tomcat in reply to Lure2]

I honestly cant remember, its been a very long time. I did forget to mention thar my last CT scan showed an old area of damage but they said it was stable, didnt say what had caused it but that my aps could be related to it.

[Lure2 in reply to Tomcat]

Always get copies of bloodsamples and journals. Perhaps you can still ask for those papers. Important for you to know if you meet another Doctor.

Also read as much as you can about APS. We must learn ourselves as often our Doctors do not know much.