Memory problems getting worse

I know that memory problems are a symptom of APS but lately I'm having more and more problems concentrating, I can stare at something for ages before it dawns on me what I have to do. I've recently had some sort of virus that made me feel really ill for a few days while I had it I had a few quite severe attacks and I've not really felt right since.

22 Replies

  • Hi there, I always feel like this very badly so after or during virus, my brain fog is off the scale... I write things down and then normally hide the list from myself! Presumably you are having or have had the usual checks to check relevant levels etc. Hope it improves for you soon. Mary F x

  • Hi hon

    Know the feeling! Maddening isn't it? Mine worsens during viruses and definitely when inr is low, also struggle when have done too much, I'm waiting for further checks into neurological state, gp flying fax's to consultants as he's not sure what's going on!

    I would get yourself checked just to be on safe side, especially if no improvement soon. Worry and stress don't help us at all hon!

    Hope you feel better soon.

    Take care gentle hugs love Sheena xxxx :-) :-) :-)

  • There are little programs you can get that "exercise the mind". One is called Luminocity developed by some university professors. The whole philosophy is stretching the mind in a variety of ways via exercises they try to make fun like word find, scrabble, cross words, suduku, specific ones your neurologist can direct you to. Some are free some are not but there is much documented proof that it's "use it or lose it" when it comes to brain function in all sorts of diseases such as alzheimers, diabetes (which also has forgetfulness and many other symptoms).Countless brain diseases. I don't know if this will help you but it does help me. I do word books. My husband does suduku We really are on different planets most of the time. But he believes in the "use it or lose it" philosphy as well. There's one way to find out; try it! Good luck.

    Warm wishes.


  • it does get better, though I am still trying to remember the first half the year, I can not remember any of December really, but work and remembering codes is getting better, my daughter is ten and reminds me to have my meds some days. Make sure your getting enough sleep too. X

  • I've not seen a specialist for a good while (probably years), my last one moved hospitals and her replacement was foreign and could hardly speak English. I'm not really sure what to do at the moment, there's no point going back to my local hospital and I can't afford to be trekking to another one all the time. Years ago when I was first diagnosed ( I've had this over ten years) I was offered an appointment at Dr hughes's clinic but as my then specialist thought my symptoms where under control we never took it up. I'm on a low dose of steroids and just aspirin at the moment but my blood pressure is getting difficult to keep under control, I'm currently taking about 15mg of lysinopril daily.

  • Under a lot of stress at the moment too as I've just gone back into full time education (at the tender age of 42), financially we are really struggling and I've not slept properly for weeks. My wife thinks I may have depression but I'm not going to see the doctor about it as I'm already taking enough medication and I don't want to add anything else to the cocktail.

  • If some help could be found nearer, ie Leeds or from other member on here something nearer to you in Manchester - to see the right practitioner with a new referral would then be able to perhaps have the effect of fine tuning your care locally. Feeling the way you do, could be also clouding your judgement about being more pro active, we all feel like this at times. However to have your medication sorted and tweaked might make you feel better - I hope we can help you like this. Mary F x

  • Tom, disrupted sleep is all part of the hyper aroused autonomic nervous system which is just another part of Hughes. Hoping it will all go away and settle down is unfortunately not a reality and you will get yourself into a vicious circle especially with the stress that you admit you are under.

    Lorazepam or Clonazepam are two excellent medications that are NOT addictive and can help with sleep and tuning down this aspect of the autonomic system. Some GP's are under the impression that they are addictive but they are not with the small amounts you would need to take. Dr Holman a Prof of Rheumatology in Seattle tells his patients to get one of each tablet. to start on the first night by taking a 1/4 of one of them and then on the next night a 1/4 of the other and see what works best. If no difference he tells them to up it to 1/2 and try the same test again. He then tells them to come back and let him know which one woks the best and he gives them a script for it. He allows them to take the medication from a 1/4 to 1 tablet when they need to and their sleep patterns usually improve.

    I hope this is helpful and you can bring yourself to see your Doctor about this before your symptoms get any worse. Good Luck and let us know how you get on.

  • With respect Lorazepam and Clonazepam belong to a group of drugs called Benzodiazapines, and as such are known to be habit forming.

    I used to work in a drug dependency capasity and our recommendation to GP's was not to prescribe this group of drugs for more than five days.

    It once took one of our 'Benzo' patients two years to come off them!

    I think that we should all do our own research into medications and and then make a personal choice as to what we are willing to accept.

  • This is the reason why GP's get het up about these drugs. As I said in my post they are NOT addictive when taken for this reason and in the amounts used for. I had a long conversation with Dr Holman on this very subject and he has over 6000 patients who do very well. The autonomic system has to be calmed down and sleep is just another part of it. Its a bit like giving patients antidepressants for pain when they are not depressed, it is the same principle.

  • I believe you are talking about very low dose and very supervised rather than the full amount with no supervision - I am pleased that you took the trouble to ask the correct doctor about their use for patients with APS, as nothing so far has worked for my bad sleep with my autoimmune profile. Everything I try is done very carefully at low dose some work better than others. I do also normally ask the psychologists who I part time help around, as they also seem up on drugs to be careful around and low dose v just a blanket prescription from GP. Mary F x

  • Benzodiazepines, like narcotics, have a high addiction potential. That is a well known medical fact. There are, however, very good indications for their use.

  • This a bit like saying Morphine is not addictive if used as a pain killer! However Heroine is when taken for recreation perposes!

  • With respect you are taking a very general view. The specialists that use these medications in the circumstances that they are being used... at the extremely low doses have found over many years that their patients DO NOT get addicted. I am not here to judge or argue with them but to pass on information because it has been helpful to thousands of patients. If you want to just accept that these drugs are addictive and leave it at that then thats your opinion but for those that want to try something else which as I say has been beneficial then that is another option for them to try.

  • I take 1 mg of clonozapam in the am and 1 mg. in the pm to control an arm/hand tremmor and severe stuttering problem that I was left with after a stroke in 1998. I was also instructed to take an additional 1 mg before bed if sleep began to be a problem. I've been taking this drug over 12 years although I was at a higher dosage just after the stroke. Whether it is addictive or not, it completely controls my problems with absolutely no side effects. I do have occasional stuttering breakthrough if I am nervus or in a position where total attention is on me, i.e. a speech or talk. If I didn't use clonozapam I am truly not understandable and my arm could hit you without me directing it. I can be walking and all of a sudden my fingers will spread wide open dropping anything I may be carrying without my commanding it. These occasions are rare, however. All in all, the drug helps me considerably and in the 12 years I have taken it we have not yet had to increase dosage on a daily basis. It's a lifetime drug for me and they told me so when they first prescribed it. But as long as it helps to the degree it does on me I don't mind the addiction. When I think about it - I guess I am addicted to all of my pain drugs as well, but I wouldn't give them up if they help to normalize my life. I really wouldn't have a life of quality without them. So addiction doesn't sound so bad to me.


  • I think I can see the clear point that APsnotFab is making, low dose and well supervised prescriptions... I must say when I have had the odd bit of help with sleep, (mine is terrible) even with something like the odd Zopliclone prescription I was advised on a very low dose, and only every other night to push my sleep pattern back in. No ADMIN on here would every recommend high dose highly addictive drug use, merely pass on good and well documented information. As a part time worker in a psychotherapy practice I am only too aware of drug addiction in terms of both recreational and pharmaeutical uses.

    Mary F

  • I think that particular drug is prescribed in different dosages for different ailments. The important thing is that they are prescribed and managed by a physician. Also the very word "addiction" is not necessarily bad. It is just necessary sometimes and that too should be a decision between the patient and doctor. Sometimes it is all that is left.

    Tomcat, I think you should try to get an appointment to see where your body is at right now. You stated you hadn't been thoroughly checked for years. You're past due! So many things can change in 10 years or even 5 years. If I were you I would try to get that appointment with Dr.Hughes. As long as you have to travel and take time off anyway. If he could do the initial work up on you and then suggest a doctor to pick up his work that is closer to where you live, it would be the most ideal situation. But you shouldn't go on just guessing or assuming that this is another flare. I would imagine it would remove much stress if you knew for sure what to expect of your body. Perhaps aspirin is not the ideal thing for you any more. You really should be seen, you are still a young man.

  • As I said in my original comment 'We all have to do our own research and make a personal decision on what we choose to put into our bodies'. The bottom line is that we don't do the prescribing but if we did all aspects of recommended meds good or bad should be made known so informed choices can be made.

    I totally agree that some people use benzodiazapenes for many years and may not have any issues and only encounter problems when they come off them.

    The majority of my clients were prescribed their medication by qualified physicians.

  • Sue you should know from this Forum that sadly many Doctors dont know what is good for their APS patients let alone expecting their patients to make a choice about drugs!

    Again with respect you are making your assumptions from a very biased view point based on your back ground. You have no specific knowledge of the use of these drugs in the capacity I have suggested or the results that the treatment brings. To be clear I am not talking about unscrupulous physicians writing out countless scrips at will. This is 1/4 or a 1/2 of a tablet of 1mg as required until a sleep pattern is properly established and they do not have issues when they stop taking them either. When sleep is disrupted it fuels the autonomic system which causes "wind up", this in turn creates pain and other symptoms. Those medications have been found to be superior to other medications in treating this. I wanted to be sure of my facts about this so emailed the Clinic Manager of a Prof at Guys to check and he agrees.

    No one is in the business of suggesting drugs that would get patients addicted to anything and frankly the implication that you think thats what I or those Doctors are doing is insulting.

    I think the majority of your "clients" were taking their medications under very different circumstances and it is not appropriate to compare them.

  • Dear Tomcat, I too have returned to full-time education in my forties and have had issues with my memory. I feel part of the problem is we can no longer work around things, we have to be able to recall information immediately and unaided; tricky with APS. I have relooked at how I learn things, flash cards now work for me, and I have tried, wherever possible, to be extra kind to myself. I tackled my sleep issues by cutting out all caffeine, tea included, after 11am, it has helped a lot. Also, being super organised about everything, my mummy role and student life, means I worry slightly less helping me to switch-off at night. My phone diary is set up with reminder alarms freeing up valuable headspace and energy for the stuff I have to remember. Finally, I revisited my anti-coagulation therapy with the doctors and moving onto a stronger form of anti-coagulation has helped, not completely solved, with my memory issues. Goodluck.

  • Your assumption that I have ' no specific knowledge' of these drugs is incorrect and I have worked extensively within and with the NHS and alongside Specialists.

    I reiterate that my personal view is that each individual must make personal choices regarding treatment options.

    This is my final comment on the subject.

  • Tom,

    Like some others who've responded, I find that sometimes when I'm feeling ill my memory problems are worse. But, in your situation, I would want to find a knowledgeable specialist and be seen soon for a thorough workup. My experiences was a tough one. I didn't know I had APS–in fact, thought I was perfectly healthy. But I noticed strange "brain blips" writing the wrong words, memory problems for several months. I brushed them off and ended up having a stroke. If you go for a good check with a knowledgeable doc, he/she should check your clotting time to make sure your blood isn't "sludging up."

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