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cyberdog

trouble with Riluzole

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Hey, I noticed in the last thread I posted (about noise sensitivity) that people were interested in my Riluzole trial .. I actually started about a month ago and abandoned it after a week because I was feeling more anxious. Since I had just come off clonazepam, I thought the withdrawal might be interfering and wanted a clean slate.

 

Unfortunately, I began again 2 days ago and am definitely feeling more activated on the standard dose of 100mg (50mg twice a day).

 

I'm so distraught because this is pretty much the end-of-the-line for me and my GP has no experience using the drug, so can't advise me.

 

I can't find any accounts of anyone using a lower dose, but I have a history of being extremely sensitive to medication, so am thinking about scaling back to 25mg once or twice a day and working my way up from there.

 

I did contact the professor at Yale who oversaw some of the trials and he said he's never seen anyone grow *more* anxious on the drug. Does anyone know of any professionals who I might be able to contact for advice?

 

Thanks so much!

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So sorry, Cyberdog! I was hoping the Riluzole would be a key for you!

 

If you've spoken to the folks affiliated with the trial, I unfortunately don't have any other ideas for you to that end. Not sure who you spoke or corresponded with, but was it Michael Grant? I was under the impression that he has a position within the NIMH, rather than at Yale, but I might have that wrong. He's the one I corresponded with a couple of years ago regarding this trial. So if you haven't talked with him, he might be a possibility.

 

I would try the lower dosage, too. I mean, what do you have to lose at this point? And if you have an established history of sensistivity, then perhaps you're dead on in that regard.

 

My fingers remain crossed for you! Keep us in the loop!

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Thanks for the update--- sorry it's not helping, either :-(

I agree with Nancy (as usual) maybe go down to very small dose?

 

I have been doing a lot of reading on the effects of excess glutamate -

have you tried cutting certain foods out (like gluten, feeds it big time)

Also put my dd8 back on PharmaNac (studies done by Stanford University on this product)

And, some other theories about noise sensitivity

lack of magnesium, or yeast overgrowth...

meanwhile, I'm here on my couch with my earplugs in, lol.

 

Let us know how you are doing--- thanks again---

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Thanks for the quick reply guys!

 

MWOCDS: It was Dr. Pittinger -- there are two studies by him on pubmed (one in adults, one in children) and he also prescribes the drug in his practice. I haven't spoken to Michael Grant, but will look him up. I suppose the drug isn't used very widely and I haven't come across anyone who took less than 100mg, so was feeling disheartened, but there are always exceptions I suppose. I'll back down to just 25mg tomorrow and take it more slowly.

 

S&S, I was pretty big on a gluten-free diet for a few years. It might have made a difference (my digestion was at least better). I try to eat well, but to be honest, I feel so overwhelmed at the moment that I've been doing some comfort eating, which I try not to pressure myself about. It isn't a lot (I still avoid pastas etc.) but I have been having sourdough bread, rather than gluten free, and the occasional pizza. If I do ever get my depression/anxiety under control, I will look at improving my diet again.

 

NAC didn't work for me, unfortunately -- I found it quite activating.

 

I'm also relying on my earplugs too. I've started to realize that I might not be extremely sensitive per se, but that I'm just in the wrong environment (constantly noisy, chaotic) for an introverted 27-year old. I don't have any issues, for example, being in the city, with loud music, ambient noise etc. It's just yelling and barking I can't tolerate, which I think is normal. *sigh* my ultimate aim is to get out of here; I was pinning a lot of hope on the Riluzole (which is a fault of mine .. I'm a dreamer :/) c'est la vie..

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NAC didn't work for me, unfortunately -- I found it quite activating.

If you perform a Search on the PANDAS forum here, you'll find some previous threads about NAC and how it works for some and doesn't for others (activating). For the most part, I think what we've come to infer is that the difference in response to NAC may be in methylation issues. Have you ever looked into genetic testing and/or methylation?

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I tried lamictal for 3 days and had to quit. I have extreme sensitivities to meds as well. It made me really tired but also wired some part of my brain and I didn't sleep for 3 nights and that was the last straw. I have a problem with meds making me extremely tired then wired at the same time.

 

I tried memantine for a week. It would knock me out like I was hit over the head with a bat. The problem was all day I was a zombie, literally so sedated. And as I continued, I got more and more sedated to the point where all I could do was stare at the ceiling and not even think.

 

So sorry your experience is going like this. Just wanted to tell you that i can totally relate. My psychiatrist is always baffled at the reactions I get to medication. Something is seriously off in our brains. Seriously.

 

But I urge you to not give up yet and yes, with us, start at the smallest dose possible b/c we are more sensitive. With certain things I'd be breaking pills apart into tiny pieces. Start off smaller and stay like that for a couple of weeks then move up.

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Hey Ophelia --

 

I know you've been exploring a lot of different things . . . have you ever had genetic testing done or investigated methylation? If what some of the responses show is true . . . that a "lopsided" methylation cycle caused by a gene mutation can make a person more sensitive to this and/or less sensitive to that . . . perhaps supplementing the cycle appropriately would help you (and Cyberdog) respond more classically to medical and psychological interventions? It's a complicated subject, but also one that some people have really been able to make headway with. LLM, in particular, is a bit of a home-grown "expert" on the topic!

 

Keep fighting the good fight!

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Hey Ophelia --

 

I know you've been exploring a lot of different things . . . have you ever had genetic testing done or investigated methylation? If what some of the responses show is true . . . that a "lopsided" methylation cycle caused by a gene mutation can make a person more sensitive to this and/or less sensitive to that . . . perhaps supplementing the cycle appropriately would help you (and Cyberdog) respond more classically to medical and psychological interventions? It's a complicated subject, but also one that some people have really been able to make headway with. LLM, in particular, is a bit of a home-grown "expert" on the topic!

 

Keep fighting the good fight!

I just posted my results because I don't have any brain power to study and try and learn about this stuff. I am hesitant and scared with any supplements though b/c I have reactions to simple vitamins and supplements as well.

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MWOCDS: I did have my histamine levels tested and they were high, so my doctor at the time concluded I was probably an undermethylator. But supplementing with methyl doctors (methylfolate and methyl-b12) just agitates me, so I gave up on that cause pretty quickly.

 

Ophelia22: Thanks. Lamictal is pretty notorious for having a rough titration; I also know that you have to be really careful with Memantine because of the long half-life (70+ hours) and that it's necessary to dose at exactly the same time each day and go up in small increments.

 

I've cut down to 25mg of Riluzole but am still reacting badly; since it's been 4 days, I don't want to go any lower and lose my progress but I do think I'll ask my GP for a prescription for a beta-blocker to see if that helps. I also ordered some Lemon Balm which hopefully might help take the edge off.

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MWOCDS: I did have my histamine levels tested and they were high, so my doctor at the time concluded I was probably an undermethylator. But supplementing with methyl doctors (methylfolate and methyl-b12) just agitates me, so I gave up on that cause pretty quickly.

 

Ophelia22: Thanks. Lamictal is pretty notorious for having a rough titration; I also know that you have to be really careful with Memantine because of the long half-life (70+ hours) and that it's necessary to dose at exactly the same time each day and go up in small increments.

 

I've cut down to 25mg of Riluzole but am still reacting badly; since it's been 4 days, I don't want to go any lower and lose my progress but I do think I'll ask my GP for a prescription for a beta-blocker to see if that helps. I also ordered some Lemon Balm which hopefully might help take the edge off.

To whatever extent the comparison might be helpful . . . my DS is an undermethylator, also. Very high in histamine and so responds well to quercitin, zyrtec and/or Pepcid. Also, B6 and zinc seem to help him a lot; we tried methyl B12 for a bit, and like you, he just got more agitated, rather than less, but the B6 seems to be more than just helpful -- it's necessary. We tried cutting back at one point, and he did not do well. He's taking 2,000 mg. of B6 daily. We also think (though have not tested) that DS tends toward pyroluria.

 

This is a fairly simplified chart that was circulated here many moons ago, but it was our introduction to methylation and gave us some basic ideas about what might work to help DS versus what might not be beneficial.

 

http://www.nutritional-healing.com.au/content/articles-content.php?heading=Major%20Mental%20Illness%20Biochemical%20Subtypes

 

As for lamictal, it has been very helpful for DS and we've attributed some of that, rightly or wrongly, to its glutamate modulating properties. We did begin it very low and tritrated very slowly, but the initial response on a low dose was very good and has remained good since.

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one week on 25mg and things are still bad. wondering if I should go even lower (12.5mg .. though that seems almost homeopathic) or raise to the standard dose (100mg) and just grit my teeth and try hold out.

 

I find it strange my system would be having such trouble with a drug designed for ALS

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