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Author Topic: Brain Seizures and AIDS  (Read 2450 times)

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Offline wetsand

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  • Posts: 12
Brain Seizures and AIDS
« on: June 20, 2008, 10:22:28 AM »
Frequent lurker and infrequent poster here.  After months of feeling crappy, fatigue, night sweats, a bout with what I thought at the time was the worst "flu" of my life, I had a brain seizure for the first time ever at 46, and landed in the hospital.  That led to me getting tested and discovering I had Aids with my Tcell count in the 30's and my viral load in the 700,000 levels.  I started anti-seizure meds, expensive and fog inducing and later Viramune and Truvada.  The Aids meds have put my numbers in the right direction, and even better, got me to feeling normal again.  But my neurologist insists I have to stay on the anti-seizure meds for the rest of my life.  My brain has changed he says, despite having normal CAT scans, an EEG, and an MRI.  But I feel strongly that I had the seizure because I was walking around with a very mean virus kicking my butt and that now that it is under control, it won't happen again.  Of course I'm scared it will, so I follow the the Neuros advice and take the brain meds just in case, although I hate the dopey way it makes me feel.  My work requires, high performance, concentration and coordination, which the brain meds (Keppra and now Dilantil) work against.  Having a seizure at work (I freelance) would sink my career.  My ID doc postulates that I don't need them but you know how docs don't like to openly contradict each other.  I plan to get another second opinion from a different Neuro guy when I can afford a visit, but in the mean time, I was wondering if any one on the poz boards has similar experiences and what might be some of the lay opinions out there. 
Thanks for the thoughts,

Oct 07 Seizure
Nov 07 tested +
Dec 07 CD4 37 VL 750K
Feb 08 started HAART
Apr 08 CD4 300 VL 3000

Offline Iggy

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Re: Brain Seizures and AIDS
« Reply #1 on: June 20, 2008, 11:13:53 AM »
Hey Ant

I do not have direct experience to relate and thus give you meaningful feedback in regards to your experience, but I wanted to say I'm sorry for this development and what I can appreciate is a scary or at least worrisome development.

I hope someone else will chime in soon with meaningful related experience, but I wish you my best hopes.

Offline BT65

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Re: Brain Seizures and AIDS
« Reply #2 on: June 20, 2008, 02:16:46 PM »
Ant, I don't have any experience with this either.  Just wanted to wish you luck, especially getting the 2nd opinion.  I hope things turn out well.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

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Offline MarcoPoz

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Re: Brain Seizures and AIDS
« Reply #3 on: June 20, 2008, 03:35:03 PM »

I'm not on seizure meds--yet, but some day I might.  I made a post about my happy little brain issues called "...if I only had a brain..".  The thing is, once we get our diagnosis, we know that many things change.  We can adjust, adapt, compensate for and become tolerant of many things if we have support and the right mindset.

I run the risk of having stroke-like symptoms every second of the day.  I still drive (for now) I still compete in Scotish Heavy Athletics, still work, flyfish, hike, make love, drink and tell very bad jokes.

Please don't think I'm making light of your situation.  I completely empathize, especially since what you do requires a sharp mind and reflexes.  I quess the best advice I've gotten about my recent brain issue is actually a quote.  I think its something like "I'm not afraid of the storm, its helping learn how to sail my boat" or something like that ;-)

Give yourself time...breathe.  Focus on what you can do, not what you can't...and try to be ready for the next change coming.  Maybe the wind will help you stear to a place you've always wanted to see?


Offline dgr20002

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Re: Brain Seizures and AIDS
« Reply #4 on: June 20, 2008, 09:24:54 PM »
My question is were you told you have Toxoplasmosis and that is what caused the seizure?  I had a partner that was in denial many years and one day out of the blue in Costco of all places he had a seizure. He ended up in the hospital for 6 days of ICU and had very low CD4. He was on Dilantin and he had to take it the rest of his life. It was to control the seizures and once the Dilantin level got low he would have seizures.

He too felt fine and stoped taking the Dilantin as he thought he was OK until he had another seizure. The only thing you can do from the experience I witnessed is to take the Dilantin to keep yourself from having a seizure. I must also add there are things that will reduce Dilantin levels in your blood. Certain anti-smoking meds actually can cause seizures as we found out but that med was new at the time and that side effect was not then known.

If you do have a diagnosis of Toxo then you probably have some scar tissue that will not go away and the more seizures you have the more scar tissue you will develop.

My partner did take Dilantin and usually as much as 600mg a day and he did still work in a banking position but the stress and the meds did take a toll on him.

If you have any specific questions I will try to answer them but this was my first hand experience living with someone that had a half dozen seizures or more. Most were at home but one did happen at his office as well.


Offline Matty the Damned

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Re: Brain Seizures and AIDS
« Reply #5 on: June 20, 2008, 10:17:44 PM »
The cause of the seizures needs to be determined, so seeking a second opinion from a Neurologist is a good idea.

There are other anti-seizure drugs which may help you including carbramazapine, sodium valproate and lamotrigine but which is used (if any) will be determined by the neurologist. Be mindful too that having seizures may well impact on your legal ability to drive amongst other things.


Offline wetsand

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  • Posts: 12
Re: Brain Seizures and AIDS
« Reply #6 on: June 22, 2008, 12:23:40 PM »
Thanks to everyone who replied.  I've been taking the Dilantin for several days now and haven't experienced much beyond the slight buzzy/grogginess feeling.  Maybe I'll get used to it and the effects will lessen.  Sometimes I think I would be better off smoking some good pot instead.  Sensi would probably costs less than the Keppra did ($365.00/month).  When I complained about the expense, my Dr. switched me to the Dilantin but was so pissy about it, I wonder if he had a financial reason for prescribing the Keppra.  Dilantin has been around a hundred years and the patent has run out so it is only 30 bucks for a months worth.  A much easier pill to swallow.  But it also has a lengthy track record, so less of the unknowns for long term use.

As for the AIDS meds, Viramune and Truvada are doing me very good.  I feel so much better, even after just months. 

Voting "present" in 2008


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