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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 7 of 7. This is the beginning of the thread.
Posted by g_g_g_unit on August 27, 2013, at 1:03:32
tomorrow will be a week on just 25mg of Riluzole a day. I feel more agitated, anxious, wired and labile.
unfortunately, no clinician I've e-mailed has heard of such a reaction, aside from one, who claimed he found lowering the dose helpful, but then I'd basically be on a homeopathic amount (1/4 of a pill, 12.5mg, as opposed to the standard 100mg a day).
this is literally the end of the line for me. my GP has never used the drug before, and I'm not sure if I should go even lower, higher or give up.
I can't tolerate benzos (paradoxical reaction), and am taking propranolol 10mg b.i.d. which helps the physical restlessness a little, but does nothing for the other symptoms of overactivation.
Posted by Willful on August 27, 2013, at 11:16:27
In reply to not sure what to do (Riluzole), posted by g_g_g_unit on August 27, 2013, at 1:03:32
Have you tried using small doses of seroquel?
I find that when I use it for sleep, it seems to help my mood somewhat-- and also it's certainly calming at night. But again, I use a combination of meds to treat depression and anxiety. Also my pdoc used it when I was having a lot of anxiety and agitation when coming off parnate and it was extremely effective.
If your GP can't help at this juncture, it's probably time to try another pdoc. Even if you've had mostly bad experiences, if you travel a bit maybe you can find someone who's had more experience with a wider selection of drugs, and has tried unusual combinations. A GP can't possibly help with that-- since he doesn't have the expertise.
Willful
Posted by Phillipa on August 27, 2013, at 11:59:26
In reply to not sure what to do (Riluzole), posted by g_g_g_unit on August 27, 2013, at 1:03:32
ggg long trial study you might be interested in didn't realize approved here for ALS. Phillipa
Posted by rovers95 on August 27, 2013, at 16:44:55
In reply to not sure what to do (Riluzole), posted by g_g_g_unit on August 27, 2013, at 1:03:32
25mg is a very small dose, could the anxiety be attributed to anything else? Perhaps a dose similar to those used in trials (100mg plus) would be better and its antiglutamergenic effects may ease your anxiety? seems a shame to give up a drug of such potential without a proper trial?
cheers
Rover
Posted by g_g_g_unit on August 27, 2013, at 19:40:13
In reply to Re: not sure what to do (Riluzole), posted by Willful on August 27, 2013, at 11:16:27
> Have you tried using small doses of seroquel?
>
> I find that when I use it for sleep, it seems to help my mood somewhat-- and also it's certainly calming at night. But again, I use a combination of meds to treat depression and anxiety. Also my pdoc used it when I was having a lot of anxiety and agitation when coming off parnate and it was extremely effective.Yeah, unfortunately Seroquel gives me akathisia, even in tiny doses.
>
> If your GP can't help at this juncture, it's probably time to try another pdoc. Even if you've had mostly bad experiences, if you travel a bit maybe you can find someone who's had more experience with a wider selection of drugs, and has tried unusual combinations. A GP can't possibly help with that-- since he doesn't have the expertise.
>
> Willful
>
>Yeah, I'll have to think about it. I just can't imagine what they'd prescribe, since literally everything I've tried has presented with intractable problems, and the past 8(?) I've seen have all been a*holes in one way or another, so there are tremendous trust issues.
Posted by g_g_g_unit on August 27, 2013, at 19:48:21
In reply to Re: not sure what to do (Riluzole) » g_g_g_unit, posted by rovers95 on August 27, 2013, at 16:44:55
> 25mg is a very small dose, could the anxiety be attributed to anything else? Perhaps a dose similar to those used in trials (100mg plus) would be better and its antiglutamergenic effects may ease your anxiety? seems a shame to give up a drug of such potential without a proper trial?
>
> cheers
>
> Rover
>
>no, I definitely don't think the anxiety is coming from anything else -- I keep a pretty careful journal and a lot of symptoms (anger, lashing out, extreme irritability) are definitely new and feel drug-induced. the only other thing I was taking is Doxylamine Succinate for sleep, which I've stopped now in case it was contributing at all.
I was on the standard 100mg dose for 4 days initially and felt just as worked up. I know the dose is pretty tiny but I have a history of being super sensitive to stuff, so am not sure if I should go down to 12.5mg and see if I adjust eventually, or just go up to 100mg and try hold out as long as I can. I find it strange I can't tolerate the drug at all, where as ALS patients (with presumably heavily compromised systems) can.
the problem is I can't take anything to ease the symptoms: benzos give a paradoxical effect, antipsychotics cause akathisia, even in tiny doses
Posted by g_g_g_unit on August 28, 2013, at 8:11:55
In reply to Re: not sure what to do (Riluzole) » rovers95, posted by g_g_g_unit on August 27, 2013, at 19:48:21
copied from Imminst:
don't know how useful this actually is to anyone given my med responses are so unusual, but anyway .. I cut out the anti-histamine (Doxylamine Succinate) last night and actually noticed a considerable improvement today.
I was a little bit sleep deprived, which normally improves my mood, but the dysphoria, irritability etc. went away and I actually felt quite happy, albeit a little bit hyperactive and giddy at times. Subtle sense of calm, better stress tolerance and mood a bit more stable though mental anxiety still there. Colors are also enhanced and hedonic tone improved -- it feels like a milder Memantine, which had similar effects, though caused more anxiety.
Downsides are muscle tension (a lot of jaw clenching), difficulty breathing and considerable fatigue. I also get this weird, hollow, restless sensation in my legs/arms.
Anyway, I still don't understand why a glutamate uptake enhancer would cause what feel like dopaminergic effects (on top of RLS). It's a state that doesn't feel like it would be sustainable/enjoyable in the long-term (particularly with the muscle tension and poor sleep) but I'm thinking of hanging on a week longer at this dose, before trying to raise it? My instinct has been to try even lower to reduce side-effects but maybe it's not worth it if some kind of adaptation occurs. It just sucks having no real guidance in this trial, particularly when I'm getting unusual (side)effects, the supply is limited by cost and there's so few decent accounts online. If anyone has any advice, or could even speculate on what I'm experiencing, please feel free.
Ordered Mangosteen (5-HT antagonist) and lithium orotate to try and improve sleep quality.
This is the end of the thread.
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