Losing Days & Memory Loss

[stellakitty]

Hi All,

I have seen memory loss casually addressed at various points on the forum...

Have any of you experience memory loss or "lost" parts of a day? My daughter has had four days within the past 6 months where she does not remember what she did. We went to the movies and out to eat, she doesn't remember doing this. I will add, she did not feel well that day, passed out in the restaurant as we were leaving. We could not get her to come back around, so I got her wheelchair out of the car and we "hauled" her out.

Without going to into great detail, she had one of these days last week...She wound up with a serious injury, but does not remember how it happened. She has POTS, she has progressed to the point where she will now pass out everytime she stands up, so she is driving a wheelchair. She has days when her b.p. is so low our home machine will not read and she is on O2.

I am wondering...Could the combo of low b.p. and O2 cause this type of symptom? OR, is this a result of a drug combo gone wild? She is on quite the drug mix, Toprol, Zoloft, Regaln, Neurotin, Advair, & Provigil.

I'm not asking for any medical advice, just if you have experienced this type of symptom and have you been given an explanation for it.

Thank You

Angie

[steph37822]

oops

[Dawg Tired]

Yep, the memory loss is part of this for me. I quit driving when I found myself driving in unfamiliar territory the second time. Before I quit work it would be a joke that I would do double duty - I would forget I had already done something so I would do it again! I once woke up and didn't know whaer I was or who was in bed with me - it was hubby but still; i didn't know anything!

[corina]

I have the same trouble. Things that my sister tells me we played with when we were children, but also the short time memory is real bad from time to time. And bad in general. Not finding the words I want etc. I talked this over with a neuropsycholoist prof but since he had never heard of POTS/dysautonomia he couldn't tell if it is related. But I've never been like this and it seems to get worse. Nowadays I can't combine walking (in the house only, using wheelchair outdoors)and talking as my walking needs all my concentration there doesn't seem to be room for more. My PT told me that you see this with people who have had a stroke. They can only do one thing at a time. Well, let's keep it like that, since there's no other option, but it really effects my life!!!

Best wishes to you and your daughter Angie!

Corina

[BuddyLeesWife]

When my husband has one of his pre-syncope episodes his memory is definately affected, just the short term surrounding the episode and actually just during and immediately following the episode. Fortunately his long term memory is great and even short term when his BP is ok. I believe it is related to the lack of oxygen to the brain.

[taylortotmom]

Hi. What you are describing sounds serious and should be checked out aggressively if it hasn't already. I have had sxs for five years including many T.I.A.'s. With the T.I.A.'s I experienced confusion, disorientation, and huge short term memory loss problems. I still have residual problems. (Sometimes, I forget how to pronounce common words- it is really odd). Anyway, as stated by others the lack of oxygen and low blood pressure are definitely contributing factors. However, you want to be careful and not assume that what your daughter has experienced is just pots sxs gone awry. Sometimes, (thankfully, rarely) it can be TIA's or even fell blown strokes. So be careful and have it checked out. Good luck!

Carmen

[stellakitty]

Carmen,

I don't know what this means. Could you please clarify?

I have had sxs for five years including many T.I.A.'s. With the T.I.A.'s I experienced confusion, disorientation, and huge short term memory loss problems.

Thank You

Angie

[Ernie]

Hi,

I definetely have problems with my short-term memory but when I faint I loose my long term memory also. I remember when I was going to university and fainted before the exam I had to reschedule the exam and restudy the whole exam almost from scratch.

Ernie

[Rita]

I have dealt with the memory loss as well. To the point of not remembering who I even saw some days, or repeating the same questions. My son calls me Dorie the little fish in Finding Nemo that always says hi my name is Dorie and then can't remember she already old you or who you are. This can be very bothersome sometimes and it used too scare me, although it did go and come mostly when I felt bad. My nero doc says this is absolutely normal because when we have these syncope episodes or pass out spells our brain shuts down, therefore it works kinda like a computer once you shut it down it may lose memory that was not already stored and sometimes it takes a while for the memory too come back that was already stored. I am not a doc of course ; however, this is how it was explained to me and it makes sense. I hope this gives you some releif.

As far as the meds go I have taken oxygen and it really seems to help as far as focus , because it supplies your brain of oxygen as well. I am sorry you have to watch your daughter go through this, but think of it in the long run this will eventually make her a very strong individual. She will have already dealt with many complications in life as a child that when she becomes an adult she will already be a great decision maker and be able to deal with lifes ups and downs.

Hang in there,

Rita s

[taylortotmom]

I'm sorry for not clarifying. A TIA is a transient ischemic attack, referred to often as a "mini-stroke". I have a history of complicated migraines so it took a while for my former neuro to be able to differientate between the migraines and TIA's. My tell-tell sign was blindness in one eye that would occur for just a few seconds before my other symptoms and seemed to correlate with my erratic heart rate. Migraines, syncope, and TIA's are so similiar in the way they present. It can be very scary and confusing to try and determine what is going on and that is why I emphasized having your daughter check out thoroughly. Even the scariest of symptoms are more manageable if you know what is going on.

Carmen

[morgan617]

I have real problems with telling people the same things repeatedly. It is mortifying. And I am starting to have some real memory problems. I also believe it's related to anoxia, or lack of oxygen to the brain. Really the most frustrating thing for me is spelling. I was such a good speller and now sometimes I can't spell the simplest words... but I don't lose whole days. It's normal to come out of a faint a little disoriented, but to lose a whole day seems a little odd, I guess I'd get it checked out. Actually, I don't guess I would, I just would....morgan

[stellakitty]

Thanks...

What is so scary about this is the reaction from the "medical community". My daughter ended up in a Pysch Hospital under a 72 hr lock down b/c she was injured and did not know how. The staff at the P/H released her after 30 hrs, they did not feel she was a threat to herself, the pyshcharist, (sp) at the facility, is trying to feed me some "dissociative disorder" pyscho babble. My daughter sees a counsler, every other week, she feels her main problem is depression, understandly so, as she is 16 with a chronic illness, not a MAJOR pysch problem.

I have been reading this board for 2 years now, so I know most of you at one point or another have been told you need pysch care. Now that is crazy...

I/she/we need some validation as to why she's "spacing out". My daughter does have an appt. with another neuro in a couple of weeks. She had a EEG about 10 days ago, it showed some abnormal activity, but nothing conclusive. Seems as if I spend most of my time chasing my tail for answers...

Angie

[DawnA]

Hey I have the dissociative disorder diagnosis too! What a bunch of crap. Like others I have no memory left. When I am really bad their are periods of time I can not remember. When I am sleeping a lot I can not remember if I dreamed something or if it really happened. On really bad days I function on fumes, cause I have kids thank God they are older. I can no longer multitask and it is getting harder and harder for me to be active on this forum. I can not rememeber what I read to respond and I can not come up with the words. I am in a world of my own and it gets a little lonely at times. I am not like this when I am feeling well.

I hope and pray that these problems disapate for your daughter. Yes she will be a better person for it. But I am sure you can think of much better ways to make her a good person. Have you tried any alternative meds. I strongly recommend omega 3 and coQ10. They helped me tremendously for a while, but I have a progressive metabolic disorder and am in an exasorbation. I know of others it has helped including both of my daughters.

God bless,

DawnAv

[BuddyLeesWife]

Great suggestion Carmen to make sure to test for TIA's. That was the first set of testing the neurologists did on my husband to confirm that he was not having them. Their wording was something like "We have found no evidence to suggest TIA's". In my husband's case, we now believe it is due to the lack of oxygen from the lowered BP but it took us a long time to get to this point and we are still not really sure, more like resigned to the explanation since nothing else has shown up.

[Eillyre]

Hi Angie!

I've somehow missed you up until now, so it's nice to meet you!

I too have had a lot of memory problems, mostly occurring when my BP was very low. I could "miss days," activities, conversations, all sorts of things! It was a bit scary at first, but on my new meds and better BP regulation, I'm experiencing MUCH better memory retention.

I don't know anything useful about your daughter's meds, but thought I'd throw in my two cents anyway. I would definately let the doctor in charge of the dysautonomia symptoms know what's going on! Sorry your daughter's going through the whole "psychological disorder" ringer -- hope you'll be able to find some answers soon!

Angela

[Ernie]

Hi,

When I was on Metoprolol my cognitive skills were so bad that I could not study (memorize) for my exams and when I was listening to the teacher in class I thought she was talking Chinese because I did not understand a word of what she was saying. I kept asking the other students "In what language is she talking?" When I went to the ER because the side effects of that medication were really bad the ER doc told me that Metoprolol affects memory and concentration. It was the day before my final exam. Good thing I found out why I felt so stupid. So I stopped the medication and 2 days after I could start to memorize again. I had taken that med for 3 months.

Ernie

[stellakitty]

Hi Angela,

I've been on this board since Oct 03, but I only have 22 posts, OOPS! You guys do such an excellent job of answering each other concerns & questions, I usually don't have anything to add, thus 22 posts. AND, I am the mom of a 16 yr with POTS, 90% of the time I'm CLUELESS!!!

SO, I've "introed" myself again, nice to meet you! Know I am reading your trials and tribulations daily and I'm sending GOOD vibes!