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Main Forums => Pre-HAART Long-Term Survivors => Topic started by: Solo_LTSurvivor on March 14, 2011, 02:48:04 pm

Title: Sustiva Craziness
Post by: Solo_LTSurvivor on March 14, 2011, 02:48:04 pm
I have a question for anyone currently taking Sustiva.  I've been taking it ever since its induction and have been fortunate in that I never had to deal with any of the side effects.  I recall that it made me feel really groggy during the first week when I started on it all those years ago, but that quickly dissipated.

But for some reason I've been feeling out of sorts and I have a strong suspicion that Sustiva is behind it.  It all started in this last week or so and I noticed that I felt really "hungover" when I woke up.  And one morning the room was spinning and I was really dizzy and also had a headache.  I don't drink much, so the only other thing I was thinking it could've been from is not getting enough sleep - as I am a night owl.  And having a cat that has a tendency to come jump on the bed just as you're about to doze off doesn't help. At least I can take ambien when I get tired of tossing and turning when that happens :)

But even so, my not getting a full 6 - 8 hours sleep in the past has not made me feel as shitty as I have these last few days.  This morning I also noticed a headache when I got up, but I also didn't get a lot of sleep last night.  After taking ibuprofen, my head is still hurting somewhat slightly as I type this.

Tonight I plan on getting more sleep but I'm wondering how much longer this horrible groggy feeling is planning to stick around.  I'm also wondering if I need to speak to my doctor about switching to something else, despite the fact I've been undetectable for years (thanks to Epzicom and Sustiva)?  I can't take this much longer because this grogginess, headaches, and feeling hungover without the benefit of drinking is for the birds :)

Has anyone else here taken Sustiva for many years and then all of a sudden start experiencing side effects out of the blue?
Title: Re: Sustiva Craziness
Post by: OneTampa on March 14, 2011, 04:47:17 pm
Hello Solo,

I've taken Sustiva (low dose 400mg) for about 11 years now.  In 2007, out of the blue, I experienced headache, dizziness, the room spinning, balance issues and throwing up.  I went to the doctor and they thought it was food poisoning since I also had diarreha.  I suspected, instead, that I had a middle-ear infection as I had some pain near my ear.  Turned out that it was a middle-ear infection.  I received some antibiotics and everything cleared up in about 5 days. No problems like that since and I continue to take Sustiva at the low dose.

So, you may want to check back with your GP and also ask to see an ear, nose, and throat specialist.

Take care.
Title: Re: Sustiva Craziness
Post by: denb45 on March 14, 2011, 05:25:32 pm
Wish I could be more help, it's been 12 yrs. since I took Sustvia, as it didn't work very well for me, I was only on it for about 6 month to a yr. before I was switched to Viramune (nevirapine, NVP), but that one didn't last very long, as well, about 2 to 3 yrs.  ??? currently, I'm not on any non-nukes, as they didn't work for me  :-[
Title: Re: Sustiva Craziness
Post by: Solo_LTSurvivor on March 14, 2011, 09:18:52 pm
Hey 1TPA and Dennis:

Thanks for the input.  I did notice that my GI tract was feeling a bit off kilter when these symptoms first started, although I wasn't having diarrhea... but the "texture" wasn't normal. The food poisoning theory entered my mind, fleetingly -- as I know that one of the local supermarkets can be guilty of selling merchandise that... um, could be past its shelf life, as I've noticed that sometimes after eating meat I bought that looked fantastic in the store.  Apparently it's amazing what a bit of red food coloring can do under the right lighting  :o

And then with the crazy weather, it is also possible that I could be a tad off from center more than usual.  I should know better to pull out the string bikini as soon as it hits 50, especially when it snows the very next day.

I have a feeling that whatever is causing it will blow over.  I'm just really sick of my head being in a spin when my feet touch the ground -- but I guess it must be true: "it feels like, it feels like I'm on drugs" :)

Thanks again!
Title: Re: Sustiva Craziness
Post by: denb45 on March 14, 2011, 09:37:45 pm
Feel better ;)  go out and do something fun too  :)
Title: Re: Sustiva Craziness
Post by: Solo_LTSurvivor on March 23, 2011, 12:18:26 am
Just a fast update: whatever was going on with the Sustiva and me vanished faster than a crack whore looking for rocks in a white shag carpet, thank chaos.  No more spinning rooms and foot on the floor to make it stop.

And Dennis: maybe your advice for me to do something fun sent it packing, as I really prefer popping in here for my entertainment :)
Title: Re: Sustiva Craziness
Post by: Theyer on March 23, 2011, 04:45:42 pm
That Dennis he,s powerfull
love
t