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Author Topic: Has anyone else experienced seizures/convoltions from medication interactions?  (Read 6841 times)

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Offline savorthemoments

  • Member
  • Posts: 15
Hello all,

I started having bazaar seizure and convoltion like issues almost daily a few years back that we haven't been able to confirm a reason for. We could never confirm them. Finally after getting so frustrated I challenged my doctors and we stopped my seizure meds and they seemed to have stopped completely! Except for occasional tremors....and headaches.

Has anyone else experienced anything like this? I'm grateful they have stopped, it's been 8 months.........but after 3 years of this I can't say I'm not concerned about them possibly returning......

Would enjoy your feed back,

Savor the moments! :)

Offline bear60

  • Member
  • Posts: 4,105
Is this an HIV issue?
Poz Bear Type in Philadelphia

Offline redhotmuslbear

  • Member
  • Posts: 605
  • A genuine certified freak of nature, and a hot one
Has anyone else experienced anything like this? I'm grateful they have stopped, it's been 8 months.........but after 3 years of this I can't say I'm not concerned about them possibly returning......

It sounds like you're going through a lot of guessing games without any real diagnosis.  Have EEGs, CTs, and MRIs been done?

I was diagnosed as having a seizure disorder in 1981, after several operations to replace CSF shunts plus a botched exploratory for a non-existent tumor that left me in a coma for six weeks and quadriplegic for six months.  Every few months thereafter, I'd have an episode that appeared seizure-like, and the docs would ratchet up my meds.  By August 1987 I was on 800mg Dilantin and 120mg phenobarbital a day.  Then, I had an episode one night after being at a contentious meeting, was rushed to the local ER and mellowed out on oxygen and valium.  An EEG did not show evidence of seizure, so the neurologist (Les Williams, Alexandria, VA) tapered off the meds, and I haven't had any problems since.  His diagnosis was that I was having migraines on top of severe sinus distress, not seizures.

Then, last summer I began to experience tremors that were often incapacitating.  The main driver for them was stress--I was in a tumultous plural relationship at the time--and based on familial histories, my neurologist (Linda Sigmund, Fairfax, VA) labelled the condition and the past issues as "essential tremor."  I did not have genetic testing done, but the prevalence of tremor on my mother's side is high.

"The real problem is not whether machines think but whether men do." - BF Skinner
12-31-09   222wks VL  2430 CD4 690 (37%)
09-30-09   208wks VL  2050  CD4 925 (42%)
06-25-08   143wks VL  1359  CD4 668 (32%)  CD8 885
02-11-08   123wks off meds:  VL 1364 CD4 892(40%/0.99 ratio)
10-19-07   112wks off meds:   VL 292  CD4 857(37%/0.85 ratio)

One copy of delta-32 for f*****d up CCR5 receptors, and an HLA B44+ allele for "CD8-mediated immunity"... beteer than winning Powerball, almost!

Offline savorthemoments

  • Member
  • Posts: 15
I have been positive for over 18 years and until approx 3 years ago I was in good healthy. My episodes were diagnosed as seizure disorder in the beginning and Yes we have preformed every test(EEG's, MRI's, CT's etc)a number of times, conducted many seizure study sleep overs and I have had the pleasure of a number of spinal taps. All showing no evidence of seizure or any other concern. 

When these episodes started I was on a HIV four drug combination of Kaletra, Viread, Agenerase and Epivir. We used a number of anticonvulsants combinations over the next 2 years. The seizure combo's either didn't help control the episodes or they increased the episodes. Finally after working with some of the best Neurologists in NYC, NJ & Philly I was introduced to David Simpson at Mt Sinai, NY (Director of Neuro-Aids Research). He agreed with my gut instinct to stop the anticonvulsants medications. He also felt that these "organic seizures" were the result of drug-drug interactions between the protease inhibitors and the anticonvulsants.

I have not had seizure activity now for almost 8 months, however I am left with occasional tremors, regular headaches and mild neurocognitive issues.

Five months ago I also started a new 5 drug combination, TMC125, Fuzeon, Norvir, Emtriva and Darunavir that has proven to be a very positive move.

It's been a challenging period..........that I welcome any feedback on and wanted to share.

David thanks for your feedback, I'm sorry to hear of your bumpy ride.

Savor the Moments, Scott

Offline weasel

  • Member
  • Posts: 1,873
Hey , savor the moments !,
                                        I suffered terribly when my doctor put me up "DEPAKOTE ", it might as well have been LSD .
I went for months thinking i was going to die !
I would fall down , I could not stand . I had delusions ! Hallucinations . it was awful !
I stopped after six months !

my doctor , Mr. BOMBAY !  told me I could have died ,when I stopped taking the medicine that was killing me .

good luck with your problem , check out all interactions !
I know it is difficult , because most doctors are so smart ................LOL

" Live and let Live "

Offline joemutt

  • Member
  • Posts: 1,062
I had a light seizure in an airplane last month, had scans, seemed ok.
Probably the cholesterol and the sitting blocked my bloodflow.
Now I take cardioaspirin. My doc prescribed me pravastatine but
I m gonna try to get the cholesterol down myself first.
While I dont think it s a direct effect from my hivmeds the cholesterol is.


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