# Aminopyridines and Acetyl-DL-Leucine **URL:** \ **Category:** News, Research, and Clinical Trials\ **Created:** [March 10, 2019, 11:50am UTC](https://forum.livingwithataxia.org/t/aminopyridines-and-acetyl-dl-leucine/7316 "2019-03-10T11:50:55Z")\ **Posts on this page:** 12\ **Page:** 1
**Author:** ![Beryl\_Park](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/beryl_park/32/5716_2.png) [@Beryl\_Park](https://forum.livingwithataxia.org/u/Beryl_Park)\ **Post date:** [March 10, 2019, 11:50am UTC](https://forum.livingwithataxia.org/t/aminopyridines-and-acetyl-dl-leucine/7316/1 "2019-03-10T11:50:55Z")
For the most recent information see - > > > Cerebellar ataxia is a frequent and often disabling syndrome severely impairing motor functioning and quality of life. Patients suffer from reduced mobility, and restricted autonomy, experiencing an even lower quality of life than, e.g., stroke survivors. Aminopyridines have been demonstrated viable for the symptomatic treatment of certain forms of cerebellar ataxia. This article will give an outline of the present pharmacotherapy of different cerebellar disorders. As a current key-therapy for the treatment of downbeat nystagmus 4-aminopyridine (4-AP) is suggested for the treatment of downbeat nystagmus (5-10 mg Twice a day \[TID\]), a frequent type of persisting nystagmus, due to a compromise of the vestibulo-cerebellum. Studies with animals have demonstrated, that a nonselective blockage of voltage-gated potassium channels (mainly Kv1.5) increases Purkinje- cell (PC) excitability. In episodic ataxia type 2 (EA2), which is frequently caused by mutations of the PQ-calcium channel, the efficacy of 4-AP (5-10 mg TID) has been shown in a randomized controlled trial (RCT). 4-AP was well tolerated in the recommended dosages. 4-AP was also effective in elevating symptoms in cerebellar gait ataxia of different etiologies (2 case series). A new treatment option for cerebellar disease is the amino-acid acetyl-DL-leucine, which has significantly improved cerebellar symptoms in three case series. There are on-going randomized controlled trials for cerebellar ataxia (acetyl-DL-leucine vs placebo; ALCAT), cerebellar gait disorders (SR-form of 4-AP vs placebo; FACEG) and EA2 (sustained-release/SR-form of 4-AP vs acetazolamide vs placebo; EAT2TREAT), which will provide new insights into the pharmacological treatment of cerebellar disorders. ---
**Author:** ![JVherenow](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/jvherenow/32/5309_2.png) [@JVherenow](https://forum.livingwithataxia.org/u/JVherenow)\ **Post date:** [March 11, 2019, 1:57am UTC](https://forum.livingwithataxia.org/t/aminopyridines-and-acetyl-dl-leucine/7316/2 "2019-03-11T01:57:37Z")
Thank you for posting this. I tried to find acetyl-DL-leucine but can’t find it in the US. So, I’ll ask my neurologist when I speak with him this week. I have chronically low protein levels which my biochemist husband might indicate that I need more amino acids (acetyl-DL-leucine is an amino acid). I’ve also started taking a tri-amino supplement. Always trying something! And, I had 2 hours where my body worked like it used to work! My neighbors had a great band playing (Craig Eastman) and I STOOD and gabbed and gabbed and then sat and tapped my hands/feet IN TIME! Then, I got totally ataxic/floppy but what a great two hours 🙂 ---
**Author:** ![hutchy-10](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/hutchy-10/32/3534_2.png) [@hutchy-10](https://forum.livingwithataxia.org/u/hutchy-10)\ **Post date:** [March 11, 2019, 1:45pm UTC](https://forum.livingwithataxia.org/t/aminopyridines-and-acetyl-dl-leucine/7316/3 "2019-03-11T13:45:06Z")
[https://ca.iherb.com/pr/source-naturals-l-leucine-500-mg-240-capsules/19155](https://ca.iherb.com/pr/source-naturals-l-leucine-500-mg-240-capsules/19155) Is this the same thing? I found and ordered this online (I think the company is based in NY.) ---
**Author:** ![Beryl\_Park](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/beryl_park/32/5716_2.png) [@Beryl\_Park](https://forum.livingwithataxia.org/u/Beryl_Park)\ **Post date:** [March 11, 2019, 5:35pm UTC](https://forum.livingwithataxia.org/t/aminopyridines-and-acetyl-dl-leucine/7316/4 "2019-03-11T17:35:50Z")
🤔 To make sure you’d need to check the list of ingredients. I clicked on the ‘reviews’. They were mixed, and unwanted side effects were mentioned. But as we all know only too well, sometimes personal trial and error is the true test… ---
**Author:** ![hutchy-10](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/hutchy-10/32/3534_2.png) [@hutchy-10](https://forum.livingwithataxia.org/u/hutchy-10)\ **Post date:** [March 12, 2019, 12:39pm UTC](https://forum.livingwithataxia.org/t/aminopyridines-and-acetyl-dl-leucine/7316/5 "2019-03-12T12:39:15Z")
I found this company, the product comes from Milwaukee. [https://www.sigmaaldrich.com/catalog/product/sigma/l7875?lang=en®ion=CA](https://www.sigmaaldrich.com/catalog/product/sigma/l7875?lang=en®ion=CA) ---
**Author:** ![Beryl\_Park](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/beryl_park/32/5716_2.png) [@Beryl\_Park](https://forum.livingwithataxia.org/u/Beryl_Park)\ **Post date:** [March 12, 2019, 12:45pm UTC](https://forum.livingwithataxia.org/t/aminopyridines-and-acetyl-dl-leucine/7316/6 "2019-03-12T12:45:31Z")
🤔 99%…will you try it. Are you taking any medication it might ‘conflict’ with. ---
**Author:** ![hutchy-10](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/hutchy-10/32/3534_2.png) [@hutchy-10](https://forum.livingwithataxia.org/u/hutchy-10)\ **Post date:** [March 12, 2019, 12:55pm UTC](https://forum.livingwithataxia.org/t/aminopyridines-and-acetyl-dl-leucine/7316/7 "2019-03-12T12:55:29Z")
I would try it for sure. This appears to be a company webpage that we may not be able to order directly from. Sorry. Still searching. ---
**Author:** ![hutchy-10](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/hutchy-10/32/3534_2.png) [@hutchy-10](https://forum.livingwithataxia.org/u/hutchy-10)\ **Post date:** [March 12, 2019, 2:16pm UTC](https://forum.livingwithataxia.org/t/aminopyridines-and-acetyl-dl-leucine/7316/8 "2019-03-12T14:16:29Z")
I have to say I’ve exhausted google over this product. Some searches took me back to L-leucine. I’m not certain if this is the same as DL-Leucine, maybe it’s a different product? a different formulation? A question for a doctor? Does a doctor have access to it? I don’t know, but I’m certainly going to inquire about it at my neurologist visit next month. I need to check if it is right for me anyway as one should always do before taking any medication. ---
**Author:** ![Beryl\_Park](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/beryl_park/32/5716_2.png) [@Beryl\_Park](https://forum.livingwithataxia.org/u/Beryl_Park)\ **Post date:** [March 12, 2019, 3:13pm UTC](https://forum.livingwithataxia.org/t/aminopyridines-and-acetyl-dl-leucine/7316/9 "2019-03-12T15:13:15Z")
🤔 Yes, I think this needs an expert’s opinion, chances are they may be the same thing but, the link does specifically say ‘DL’… ---
**Author:** ![JVherenow](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/jvherenow/32/5309_2.png) [@JVherenow](https://forum.livingwithataxia.org/u/JVherenow)\ **Post date:** [April 13, 2019, 4:40pm UTC](https://forum.livingwithataxia.org/t/aminopyridines-and-acetyl-dl-leucine/7316/10 "2019-04-13T16:40:32Z")
I’ve been on 4-aminopyiridine for about a month now. I took 5 mg QD for a week and then BID. When I moved to twice a day, I started to feel awful, way more dizzy than usual. One morning I could not even stand without falling over. That’s when I finally associated the increased dizziness with the 4-AP. I stopped it and the dizziness went away so that was the cause. However, while I was way more dizzy, I was also way less ataxic! So, now I’m trying it every other night, just 5 mg. So far, the ataxia is pretty quite. I went for a walk last night! Woooo hoooo! I have a genetic variation in my liver that makes me a poor metabolizer of most medications. Because of this, I think the regular dose was just way too high for me (a common event in my life). So, when you try things, always keep in mind the need to personalize dosing for your body (lower or higher depending). Knowing your genetics can help in that regard (I did 23 and me and then ran my genome in to promethease; I also had some genetic tests done at the hospital and those agreed completely with the promethease analysis). ---
**Author:** ![Beryl\_Park](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/beryl_park/32/5716_2.png) [@Beryl\_Park](https://forum.livingwithataxia.org/u/Beryl_Park)\ **Post date:** [April 14, 2019, 9:42am UTC](https://forum.livingwithataxia.org/t/aminopyridines-and-acetyl-dl-leucine/7316/11 "2019-04-14T09:42:51Z")
🙂 I wish my husband was a Biochemist. Re 4-AP, in your opinion, does this give exactly the same good results as the much touted Ampyra 🤔 And, if you yourself have downbeat Nystagmus, have you noticed an improvement in this due to 4-AP 🤔 xB ---
**Author:** ![JVherenow](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/jvherenow/32/5309_2.png) [@JVherenow](https://forum.livingwithataxia.org/u/JVherenow)\ **Post date:** [April 14, 2019, 11:44am UTC](https://forum.livingwithataxia.org/t/aminopyridines-and-acetyl-dl-leucine/7316/12 "2019-04-14T11:44:19Z")
I don’t know about Ampyra. My neurologist had my 4-AP compounded by a compounding pharmacy. I have not been diagnosed with nystagmus but I often have what I describe as very jumpy eyes. The 4-AP makes that jumpiness worse for about 8 hours after I take it. But, then, things are definitely more stable on the whole. I’ll keep up my low-dose regimen and keep everyone posted. It’s good to be cautious about attributing change to this thing or that thing. I’ve noticed a great deal of variability with this condition. While some things are near constant without medication (difficulty breathing, gurgly heart caused by the POTS/small fiber neuropathy), my ataxia is episodic. It is reliably brought on by cold weather (which is finally abating here in Massachusetts) and exercise. And exercise has not sent me to immediately lie-down and gyrate since about a week into the 4-AP. But, it’s warmer here. So, I need to time to tell if the 4-AP is really helping or not. But my husband and I went for another walk yesterday and I was not wiped out and wobbly when we got back!!! YES!