[babs74]

Does anyone have moments where they are forgetting what they are doing? Like i was at work saturday and i was scanning some items to ring up and i had them in my good hand and i kind of blanked out (brain fart) several times and forgot where i was and what i was doing. Then also i dont reconize people i should.. like family i grew up with, but dont see as often as i would like. or at work today reconized someone i barely knew then turned my head and looked back and it was like looking at something for the first time. It didnt look familiar at all. It seems to be getting more frequently and i feel like i am getting dementia to be honest, and i am getting scared. My neuro thinks there migranes and the topamax is at 100mg. freaking me out..just want to make sure thats its not migranes.. please help! confused in crps land!!

[SandyRI]

Hi Barbara,

IMHO, If all these symptoms started with the Topamax, you might want to go off it for a while to see if they abate. It might be the meds. Our limbic system can also get messed up with RSD and cause some or all of those symptoms. But before you blame the RSD you may want to see if the meds are the reason for your brain fog.

XOXOX Sandy

[Kakimbo]

Hi Babs.

I completely understand. I am on high doses of several meds. My short term memory is very foggy. I will bring home a new movie to watch and my husband will say that we just watched it last week! I have no memory of it. I find that I also find myself forgetting words for the most usual of things. It's a maddening side effect of both meds and RSD. My Neuro said that it might level off over time. I personally would rather stop the meds, especially Neuronton, as that seems to be the worst.

Please, don't feel like you're losing it. Remind your family and friends that you are having this problem. My kids tease me, but they are just trying to make me feel better. Remember, stress is bad for us.

Good luck.

Kim

[babs74]

it started before the topamax.. she started me on topamax cuz she thought they were due to migranes.. cuz i was have blurred vision as well. my vision was going black, or it would look different. it started in november and i started topamax in jan. im at 100mg now have been for bout 2 weeks now and its not getting better so thats why i am getting worried.. i had to gradually go up on topamax as most know.. but they seem to be more frequent now..feel like i am losing my mind some times. and lately i feel like things are not quite right.. that somethin bad is about to happen. and last time that happened was in sept. and we went to a state line rally and 5 bikers were killed that weekend.. so a little worried..ok a lot worried.. this is a new feeling for me. i dont quite understand it.. i feel kind of like a freak.

[SandyRI]

I was only on 100 mg of Topamax for a while. And when I saw Dr. Getson in December he told that it wasn't a high enough dose to do anything (he called it "subtherapeutic"). So he upped it. He wanted me to go up to 300 mg a day - 100 mg every 8 eight hours. That was too much for me (I only weigh 125-130). I was a miserable witch (and that's putting it a nice spin on it). So I've backed it down to 200 mg a day. I'm still pretty miserable, but not as bad. I'm hoping that some decent weather will improve my mood...I don't wake up with the migraines like I used to - the ones that make me vomit - unless I use my arms for something, or I sleep on the back on my head by mistake, or I go outside in the windy weather without a hat (I only did that ONCE!). So I think the Topamax has helped me. I couldn't tolerate Neurontin or Lyrica - stuff was like poison.

Good luck to you, sorry about your head. XOXOX Sandy

P.S. There are black box warnings on a lot of these siezure meds and some of the anti-depressants too. So watch your moods. They can make you suicidal.

Originally Posted by babs74

it started before the topamax.. she started me on topamax cuz she thought they were due to migranes.. cuz i was have blurred vision as well. my vision was going black, or it would look different. it started in november and i started topamax in jan. im at 100mg now have been for bout 2 weeks now and its not getting better so thats why i am getting worried.. i had to gradually go up on topamax as most know.. but they seem to be more frequent now..feel like i am losing my mind some times. and lately i feel like things are not quite right.. that somethin bad is about to happen. and last time that happened was in sept. and we went to a state line rally and 5 bikers were killed that weekend.. so a little worried..ok a lot worried.. this is a new feeling for me. i dont quite understand it.. i feel kind of like a freak.

[fmichael]

Dear Babs -

As I mentioned to keep smilin a month ago, this is an important topic that (1) comes up a lot on the forum and (2) doesn't get the attention it deserves in medicine in general. So, with that introduction:

Hi. This topic, sometimes referred to as "brain rot," comes up with some regularity. (So my apologies to those who've heard some of this before.) And we've all been told by our doctors that it's all the meds we're on, as though going to cognative-behavioral boot camp is going to make this all better. But the comments of KS would appear to put that to the lie, as does the stufy from the "Pain and Pleasure Labratory" of A. Vania Apkarian, Ph.D. at Northwestern - perhaps the leading academic lab for the study of the neuroscience of pain in the United States - which is at the end of the post.

But to begin with the meds, Baclofen for one can be hard on short term memory. I knew that from prior experience while I was still trying to practive law and have it up after a day and a half. Over the last few years, I've been back in it, having blown through Zanaflex and been advised that it's the most effective drug out their for CNS induced spasms, in constrast to - say - Flexeril, which is designed for cramping secondary to local muscle tears and the like. Opioids can, of course, have their effects as well.

I'm on a lot of meds though, and niether Zanaflex nor Oxycontin should be contributing to the profound loss of organization ("executory function") I've experienced over the last year: where my consumption of meds has been stabile for years: but I'm told that "rare reactions" are possible. And while I got an overblown diagnosis of small vessel brain ischemia from a radiologist in August, and had an apparent TIA in September, a complete neurovascular workup at UCLA by a stroke specialist just came back clean, including any constriction of the arterioles, the small diameter blood vessels in microcirculation that extend and branch out from arteries and lead to capillaries:

Arterioles have thin muscular walls (usually only one to two layers of smooth muscle) and are the primary site of vascular resistance. Arterioles receive autonomic nervous system innervation and respond to various circulating hormones in order to regulate their diameter.

http://en.wikipedia.org/wiki/Arteriole

Schwartzman et al found that in a study of 656 patients had CRPS duration of greater than 1 year, found, among other things that:

More than half of the patients in this study reported cognitive and memory difficulties. Deficits in information processing48 and short-term memory49 have been reported in patients afflicted with chronic pain. Chronic pain has also been shown to impair working memory50 and decision-making.51 The disruption of cognitive performance in chronic pain patients could result from a number of factors such as pain medications,50 stress,52 the engagement of the prefrontal cortex by chronic pain,51 and the fact that pain may act as a distractor resulting in impairedworking memory.50

Notes
48. Grigsby J, Rosenberg NL, Busenbark D. Chronic pain is associated with deficits in information processing. Percept Mot Skills. 1995;81:403–410.
49. Ling J, Campbell C, Heffernan TM, et al. Short-term prospective memory deficits in chronic back pain patients. Psychosom Med. 2007;69:144–148.
50. D_i_c_k BD, Rashiq S. Disruption of attention and working memory traces in individuals with chronic pain. Anesth Analg. 2007;104:1223–1229.
51. Apkarian AV, Sosa Y, Krauss BR, et al. Chronic pain patients are impaired on an emotional decision-making task. Pain. 2004;108:129–136.
52. Patil PG, Apfelbaum JL, Zacny JP. Effects of a cold-water stressor on psychomotor and cognitive functioning in humans. Physiol Behav. 1995;58:1281–1286.

Schwartzman RJ, Erwin KL, Alexander GM, The Natural History of Complex Regional Pain Syndrome, Clin J Pain. 2009;25:273-280, 278, FREE FULL TEXT AT http://www.rsds.org/2/library/articl...lexanderGM.pdf

My hunch had been that it was a side effect of the sympathetic neurogenicvasoconstriction (and vasodilation in areas of edema, wahere water leeched out of the untoned blood vessels). See, e.g., J. Schattschneider, K. Hartung, M. Stengel, et al, Endothelial dysfunction in cold type complex regional pain syndrome, Neurology 2006; 67; 673-675, 674-65:

Microcirculation is regulated by neural and endothelial factors. Disturbances in thermoregulatory control of skin blood flow followed by a decrease in skin temperature due to enhanced vasoconstriction have been demonstrated in chronic stages of CRPS.7 It is assumed that in cold type CRPS patients, peripheral vasoconstriction results in tissue hypoxia and tissue acidosis. 2,3 The production of free radicals within the ischemic limb may be responsible for the endothelial dysfunction observed in the present study and the histopathologic changes observed by others.8 This process may induce a vicious cycle of impaired perfusion, hypoxia, and acidosis followed by the production of even more free radicals. [Italics in original.]*

Notes
2. Birklein F, Weber M, Ernst M, Riedl B, Neundorfer B, Handwerker HO, Experimental tissue acidosis leads to increased pain in complex regional pain syndrome (CRPS). Pain 2000;87:227–234.
3. Koban M, Leis S, Schultze-Mosgau S, Birklein F. Tissue hypoxia in complex regional pain syndrome. Pain 2003;104:149–157.
7. Wasner G, Schattschneider J, Heckmann K, Maier C, Baron R. Vascular abnormalities in reflex sympathetic dystrophy (CRPS I): mechanisms and diagnostic value. Brain 2001;124:587–599.
8. van der Laan L, ter Laak HJ, Gabreels-Festen A, Gabreels F, Goris RJ. Complex regional pain syndrome type I (RSD): pathology of skeletal muscle and peripheral nerve. Neurology 1998;51:20–25.

However, when I was tested at UCLA with transcranial Doppler under a CO2 challenge, my "Pulsiltility Index" was within nomal limits, e.g., there was no evidence that the arterioles in the brain failed to dilate properly when presented with a loss of O2. And while my neuologist has advised me that the transcranial Doppler is not as reliable as the "Gold Standard" test of CT angiogram, I have to discuss the "risk/reward" scenario with my internist, where I've had my share of nuclear medicine studies over the last few years.

Finally, there remains the area of gray matter loss secondary to chronic pain in general, and CRPS in particular. See, e.g., Geha PY, Baliki MN, Harden RN, Bauer WR, Parrish TB, Apkarian AV, The Brain in Chronic CRPS Pain: Abnormal Gray-White Matter Interactions in Emotional and Autonomic Regions, Neuron 2008;60:570-581, 577-578, FREE FULL TEXT AT http://www.rsds.org/2/library/articl...aliki_etal.pdf

Conclusions
We provide several lines of evidence indicating that the patient with CRPS has multiple pathological changes of the brain. We observe global disorganization of the relationship between gray and white matter in these subjects. Regional gray matter atrophy seems limited to brain regions that can be related to these patients’ deficits in emotional decision-making and abnormal sympathetic outflow. Regional white matter anisotropy was observed in a bundle in the hemisphere contralateral to the gray matter atrophy, where long distance connections and branching patterns were reduced. The interrelationship between gray matter atrophy and white matter connectivity provided evidence for both decreased long distance connectivity and regional increases and decreases in connectivity and branching patterns. These results suggest that the abnormal anatomy of the CRPS brain may underlie many of the autonomic, cognitive, and pain abnormalities seen in this pernicious syndrome.

While the article is technical and taxing in spots, most of the terms that are used are dedined in it, and those that aren't can be accessed using the Medline Medical Dictionary at the top of the NT page. If you are not aleady familiar with area of this work, I suggest that you look it over now. It may well be the answer to the question this thread has posed. And as such, it makes potential cures like ketamine (which I can't have due to pre-existing glaucoma) and maybe even RUL ECT (illegal for the treatment of chronic pain in California since a 1976 voter initiative campaign) look a heck of a lot less radical, all things considered.

Mike

* If anyone wants a copy of this one (for personal, non-commercial use) just drop me a PM with your email address.

To link to that thread and in particular the ensuing discussion (and citations) relating to some unique brain changes in CRPS patients that may influence memory, when compared to people suffering from other chronic pain conditions - Posts 9 & 11 - go to http://neurotalk.psychcentral.com/thread113499.html

[peppermintpatty]

I am sad to say that I too am suffering from this symptom. It is one of the most scary symptoms that I have, to be honest. I feel like I'm losing my mind some days. I do forget things occasionally, but it's affected me the most in word selection. I'll be in the middle of a sentence & simply cannot place the word I want to use. It's quite frustrating to me, as I am young & was relatively healthy before all of this hit me.

I would say that I suspect the medicine, but I started out on Neurontin/Effexor and over time have switched to Lyrica/nortriptyline, and the issues have not changed, so I really don't know. I have read that it is a symptom of the CRPS itself, but I'd prefer to blame it on the meds. I just really don't know.

[SandyS]

As you all know, my 16 year old daughter has RSD, and she takes nothing for pain. But, she has brain fog all the time. I think it is a symptom of RSD. When she is in a flare the brain fog pretty bad. So, I am just adding another aspect to the brain fog.
Sandy

Originally Posted by peppermintpatty

I am sad to say that I too am suffering from this symptom. It is one of the most scary symptoms that I have, to be honest. I feel like I'm losing my mind some days. I do forget things occasionally, but it's affected me the most in word selection. I'll be in the middle of a sentence & simply cannot place the word I want to use. It's quite frustrating to me, as I am young & was relatively healthy before all of this hit me.

I would say that I suspect the medicine, but I started out on Neurontin/Effexor and over time have switched to Lyrica/nortriptyline, and the issues have not changed, so I really don't know. I have read that it is a symptom of the CRPS itself, but I'd prefer to blame it on the meds. I just really don't know.

[SandyRI]

Thanks Mike for sharing all your work with the rest of us. It's awesome how much we have benefitted from your research efforts.

I've been on a sick leave from work since last summer - and not just because I was getting physically sicker. That was definitely a big part of it. But also - I was starting to make mistakes. I work on complex analytical stuff all day. And some kind of "brain fog" was setting in. (meds, RSD, exhaustion...??)

I was lucky that I found the errors before someone else did.

XOXOX Sandy

[babs74]

I am only on topamax. wc wont pay for anything and i cant really afford my meds.. and i dont have anything that helps right now.. so i just take the topamax.. was on lyrica july of last year.. it helps and will be back on it again hopefully soon when the case is over.. but i also forget words i am trying to say.. so its really called brain rot huh.. well i was trying to figure out what to call it.. well its better than just being tarded i guess.lol.. it makes me feel stupid.. cant wait til deposition training, thats going to be so much fun..lmao. going to forget everything right after i do it.. but it might be kind of fun..hehe.. atleast i am not alone and can laugh about it now..but the forgetting where i am or seeing things differently scares me.. what if i forget to stop at a stop light or stop sign with my kids in the car or something? and my kids get hurt? there has to be something they can do for us right? just things like that worry me.. me im expendable.. im 35. that sounds depressing i know. but im more worried bout my children then i am myself..i dont want them to suffer cuz i got hurt anymore than they have to.. they do now cuz i got hurt and lost my job and lost my house and in debt up to my eyeballs and my hubby lost his job all within 8 months time. but still,,