POZ Community Forums
Meds, Mind, Body & Benefits => Mental Health & HIV => Topic started by: savorthemoments on July 06, 2007, 07:32:55 pm
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Hello Everyone,
I would be very interested in hearing if any one else has experienced similar neurocognitive issues.
I started having serious memory, concentration, recall and information retrieval issues a few years back.....complimented with daily headaches. I went through all kinds of tests, spinal taps, etc... and couldn't find anything......I was very concerned about possible dementia, but was told not to be. Finnally, I went through a rather extensive neurocognitive exam for two days with Drexel. The examination basically confirmed the issues I was having, but could not pinpoint a cause. They recommended starting ritalin, which has helped my concentration and recall to a degree.....not to mention overall energy, and they also recommended rehabilitation therapy. I have been working with a speech and language therapist with very goods results, but memory and retaining information is still a problem in some area's. She has tough me new ways to memorize things and retain information. I've been told that I should think of this like a stroke victim does and I may simply have to relearn some of the basic skills I once had.
I have made great gains, but still get frustrated by how hard I have to work to retain information........it seems like it was once so easy to understand, follow conversations and retain information....now applying the rehab technique's to real life is the challenge.........
I just read the information that posted on aids meds from Italy which I found somewhat happy to see something being published finally. I am involved in a 4 year study at the NIH is conducting at Mt. Sinai.
I would just love to hear from others who have experienced anything like what I have.................. that hasn't happened as a result of an accident or infection of some kind. ??? ::) ???
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Your problems sound fairly severe, so I'm not sure what you would consider similar.
Several years ago I noticed I was forgetting things I shouldn't, like longtime friends' names. The VA ran me through some neuro-cognitive tests and they came back impaired in some areas like fine motor control and memory retrieval. It's not dementia, but a low-level sort of impairment. When I get together with friends who are long-term survivors it's like a forget-a-thon. Compared to the classic AIDS dementia it's a lot more subtle. But it does affect functioning.
I tried Aricept through a private Psychiatrist just to see if it would make a difference and it made me feel even foggier. I started Ritalin a month or so ago, it seems to help. The VA's only suggestion for me was to make grocery lists.
If you do a search on here of "brain fog" you'll see discussions of this type of thing. I'm sure there have been other threads too, I just haven't been around long enough to point you to them. And I think Tim Horn posted on the study you're talking about over in the research forum.
http://forums.poz.com/index.php?topic=13422.0 (http://forums.poz.com/index.php?topic=13422.0)
BTW, what's the deal with the study? Are they tracking your function or trying some kind of treatment?
And what were we talking about?
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savorthemoments, I was put on ritalin last month for CFS and yes it makes a difference. You do remember more but I still have my moments.
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I have a HUUUUUUUUGE fear of dementia, but my doctor (Infectious Disease) both say that I have absolutely no sign on neurocognitive impairment. I didn't believe them, so I also went to a neurologist, got and MRI, an EMI, and and EEG and they also told me that I have no symptoms of indications whatsoever so any type of dementia.
They said that if I am displaying any symptoms that they are related to my EXTREME anxiety and Depression.
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I had an MRI of the brain in 2002 that showed unexplainable "bright spots" in my brain.
The science of Neurocognitive Functioning is still very new, and there's so much to learn.
I can trace a decline from seven years ago, for sure. Some of it might be natural aging (eyesight and hearing, for instance), but I've found my vocabulary slipping, an increased sense of panic (and the inability to control it), confusion, etc. Is this an artifact of depression or CNS damage? Is there any way to pull these apart and assess a cause/effect relationship?
I suffer from daily headaches and am prone to migraine. Neurologists attribute this to the damage done to my cervical spine after years of merchandising furniture stores. There is also a link with TMJ, another issue I deal with all the time. I've done everything from pain meds and benzos to yoga and meditation exercises. Nothing has made a permanent difference, though some things have helped more than others in terms of temporary relief.
Brent
(Who remembers what he used to know)
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I've been positive for 22 years, 12 years ago I was diagnosed as a "paranoid schizophrinic". The diagnosis should have been AIDS related dementia and I ended up in a phyciatric care center. My t-cells at the time where below 50. I was hearing voices, seeing things, and just plan "out of it". Thanks to the cocktails my health has greatly improved. I decided to go to college and I got my AA, then I got my BA, then a MSW (graduated with a 4.0), and am now working on a MPH. My advisor tells me I have to get my PhD next. I have to work hard to stay on top if my classes, but I am driven to not give up on life. Sometimes I wonder if HIV has affected my capacitiy to learn and retain information, and then I wonder if all the pot I have smoked has affected me, then I think, hell I'm getting older it just an aging thing. I have been very blessed and I wish you the best.
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I first experienced dementia back in 1988. Noticeable lapses in memory, spelling...leaving out letters...some speech gaps...stuff I was aware of capacitywise. Very depressing. My doc ordered a brain scan. They saw something ...but mostly just noticed it. I took AZT for 2 weeks and symptoms went away. We never did another brain scan follow up I was an AZT refusnik because of intolerable side effects but thought something was happening brainwise so it was an available option. In 1995 I had stopped many of the available drugs because of side effects and I was experiencing mental capacity problems...again. I had run my business for 18 years so some routine tasks were like autopilot...but I was having lapses, problems, etc...very depressing. I applied to get in a dementia clinical trial using ziagen...which was surfacing as a new drug but untested in people. It was supposed to have good brain penetration...whatever that might mean...so I took a series of screening tests and "the good news is you don't qualify" "the bad news is you are borderline". I petitioned Burroughs Welcome to let me in the trial because I had limited treatment options... They wanted to assess the drug in people so they let me in... Within 3 days of taking drug...I could feel my old cerebral self...a wonderful feeling. AIDS dementia exists and it is reversible. That is good news.
Its so depressing to be notice the clues....those subtle capacity changes...which are only noticeable to us. I remember some dismissive reactions..."its the stress of being infected" "the stress of seeing so much death and friends declining" "you're getting older" NOT... of course I was but these experiences were distressing and noticeable...mostly to myself. ziagen has been good for me on the mental capacity salvage and then stabilization. I am still on it over 10 years later ...with viracept and rescriptor....so far no resistance. A relatively side effect free combo....lipowise, Peripheral neuropathywise,....
I've taken multiple treatment interruptions....experimented on myself over the years...and several times I restarted because I could feel "something mental" happening. Getting back on meds knocked out whatever was evolving cerebrally. That's my story....a great feeling to have a mental comeback....
I think docs dont understand the cerebral problem like they eventually will. Similar to some of them not being sensitive to our peripheral neuropathy feedback....they haven't experienced it....
Dementia is treatable. Good luck.
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Thank you, everyone for all the feed back. I can't begin to tell you how much it helps!
The Nuero cognitive challenges are not clearly understood, even by the so called best of the best doctors...........looking at this together and sharing our experiences really gives great insight and helps with my understanding.
Going back to school is exactly what I've done as the next step to my rehab program. It's been challenging at times but overall extremely positive for me!
I recommend it to everyone! Keeping our minds sharp with learning challenges is one of the best ways to fight!
I have also be on a new cocktail since the 1st of this year, the new TMC125 expanded access drug, the results have been amazing! This combined with the ritalin and I feel like I am really moving forward again!
Thanks again!