# Any drugs that help?

**URL:** <https://forum.livingwithataxia.org/t/any-drugs-that-help/2074>\
**Category:** General\
**Created:** [March 8, 2014, 1:20pm UTC](https://forum.livingwithataxia.org/t/any-drugs-that-help/2074 "2014-03-08T13:20:21Z")\
**Posts on this page:** 19\
**Page:** 1

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**Author:** ![Scotty](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/scotty/32/1075_2.png) [@Scotty](https://forum.livingwithataxia.org/u/Scotty)\
**Post date:** [March 8, 2014, 1:20pm UTC](https://forum.livingwithataxia.org/t/any-drugs-that-help/2074/1 "2014-03-08T13:20:21Z")

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Was just wondering if anyone was taking any drugs that helped with their symptoms.

I have SCA1 and my neurologist suggested Pregabalin (Lyrica). Im on a very low dose but it does seem to help smooth out my movements.

I take all the vitamins, co-q 10 etc, but was wondering if anyone was taking anything else that works.

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**Author:** ![Steve1](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/steve1/32/1307_2.png) [@Steve1](https://forum.livingwithataxia.org/u/Steve1)\
**Post date:** [March 8, 2014, 4:01pm UTC](https://forum.livingwithataxia.org/t/any-drugs-that-help/2074/2 "2014-03-08T16:01:50Z")

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Scotty,

Do you take magnesium 420 mg? If you have kidney problems a doctor should be involve. For my slurring and choking

I use calcium 1000 mg 500 mg magnesium vitamin D3. If you are deficient in magnesium a lot of vitamins will not function in the body. Magnesium is a helper enzyme cofactor for a lot of vitamins such as B1 and B12. Here is a PubMed article that states this. [http://www.ncbi.nlm.nih.gov/pubmed/4050546](http://www.ncbi.nlm.nih.gov/pubmed/4050546) Can you tell me all the symptoms you are having?

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**Author:** ![Steve1](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/steve1/32/1307_2.png) [@Steve1](https://forum.livingwithataxia.org/u/Steve1)\
**Post date:** [March 8, 2014, 5:47pm UTC](https://forum.livingwithataxia.org/t/any-drugs-that-help/2074/3 "2014-03-08T17:47:09Z")

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Scotty,

Here is another PubMed article PubMed stands for US government medical library.

[http://www.ncbi.nlm.nih.gov/pubmed/10727669](http://www.ncbi.nlm.nih.gov/pubmed/10727669)

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**Author:** ![Steve1](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/steve1/32/1307_2.png) [@Steve1](https://forum.livingwithataxia.org/u/Steve1)\
**Post date:** [March 8, 2014, 7:26pm UTC](https://forum.livingwithataxia.org/t/any-drugs-that-help/2074/4 "2014-03-08T19:26:19Z")

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Scotty,

Here is a article by NAF diet for ataxia. I feel they are a little short on magnesium their recommendation for magnesium 100 mg RDA recommend 420 mg male and 350 mg female. I take 500 mg 1/2 dosage morning and night. [https://www.ataxia.org/pdf/Ataxia\_Diet\_FAQ.pdf](https://www.ataxia.org/pdf/Ataxia_Diet_FAQ.pdf)

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**Author:** ![Scotty](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/scotty/32/1075_2.png) [@Scotty](https://forum.livingwithataxia.org/u/Scotty)\
**Post date:** [March 9, 2014, 7:09pm UTC](https://forum.livingwithataxia.org/t/any-drugs-that-help/2074/5 "2014-03-09T19:09:02Z")

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Hi Steve,

Not taking Magnesium currently, but will have a look. Thanks.

Was diagnosed 2 years ago and have seen a steady decline in my abilities. I still walk without any aids at the moment, but do stumble and lose balance. I sell cars, and fell at work for the first time. I take 75mg of pregabalin in the mornings. It seems to help with stiffness.

I do have tremors. My hand shakes. I cant carry drinks. Its worse if I feel someone is watching. I know the mind makes everything worse.

I don't choke to often at the moment, but I know that's to come.

I used to run, but its too hard now. I go to the gym once a week. Lifts weights and then go on the cross trainer. It does seem to help. The trick seems to be not to overdo it. To try and get stronger without tiring yourself too much.

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**Author:** ![Steve1](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/steve1/32/1307_2.png) [@Steve1](https://forum.livingwithataxia.org/u/Steve1)\
**Post date:** [March 9, 2014, 11:56pm UTC](https://forum.livingwithataxia.org/t/any-drugs-that-help/2074/6 "2014-03-09T23:56:41Z")

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Scotty,

When I was in my early 50s I also would stumbled. I remembered walking down the hall and loose control of my foot and stumble.

When I was working I would drink 6 cups of coffee a day I found out coffee depletes your magnesium in the body. I found out magnesium is a helper enzyme cofactor to a lot of vitamins such as B1 and B12. I had a painful stiff muscles in my back and legs. My left hand would tremble when I carried a cup I would go to the gym and when I worked out to hard I would have back spasms. Then finally in my early 60s I would get painful nocturnal leg cramps. When I took calcium magnesium vitamin D3 all the muscle stiffness went away. My friend had a stroke and is paralyzed on his left side called I told him to see a doctor he said he did not want to see a doctor and asked what I did for painful nocturnal cramps? I told him I take calcium magnesium vitamin D3 he tried them and he came back the cramps where better but he still had some cramping. So I suggested B1 in the form of sulbutiamine and vitamin B5 200 mg he said this got rid of all his cramps. RDA recommends 1000 mg calcium 420 mg magnesium vitamin D 600 iu for males over 50. Since you take pregabalin you should see your doctor before taking magnesium like JC suggested.

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**Author:** ![Steve1](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/steve1/32/1307_2.png) [@Steve1](https://forum.livingwithataxia.org/u/Steve1)\
**Post date:** [March 10, 2014, 12:30am UTC](https://forum.livingwithataxia.org/t/any-drugs-that-help/2074/7 "2014-03-10T00:30:17Z")

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Scotty,

Here is a article that states the importance of magnesium. [http://drsircus.com/medicine/magnesium/magnesium-deficiency-symptom..](http://drsircus.com/medicine/magnesium/magnesium-deficiency-symptoms-diagnosis)

The suggestion B1 and B5 to my friend was additional to calcium magnesium vitamin D3. I am 72 now with severe gait disorder do to cerebellar atrophy so do everything possible to prevent cerebellar atrophy.

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**Author:** ![Scotty](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/scotty/32/1075_2.png) [@Scotty](https://forum.livingwithataxia.org/u/Scotty)\
**Post date:** [March 10, 2014, 12:52pm UTC](https://forum.livingwithataxia.org/t/any-drugs-that-help/2074/8 "2014-03-10T12:52:18Z")

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Haha! Very true John. I already rattle when I walk!  
  
John "JC" Colyer said:

> you can also just get expensive urine from it

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**Author:** ![Steve1](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/steve1/32/1307_2.png) [@Steve1](https://forum.livingwithataxia.org/u/Steve1)\
**Post date:** [March 11, 2014, 6:39pm UTC](https://forum.livingwithataxia.org/t/any-drugs-that-help/2074/9 "2014-03-11T18:39:01Z")

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Scotty,

JC doesn't want me to give advice but if it was me I would ask the doctor for a RBC magnesium blood test asap.  
 Scotty said:

> Haha! Very true John. I already rattle when I walk!  
>   
> John "JC" Colyer said:
> 
> > you can also just get expensive urine from it

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<div class="post-metadata">

**Author:** ![Scotty](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/scotty/32/1075_2.png) [@Scotty](https://forum.livingwithataxia.org/u/Scotty)\
**Post date:** [March 11, 2014, 7:44pm UTC](https://forum.livingwithataxia.org/t/any-drugs-that-help/2074/10 "2014-03-11T19:44:56Z")

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Hi Steve,

Have bought what you suggested. Will let you know how it goes.  
   
 Steve said:

> Scotty,
> 
> Do you take magnesium 420 mg? If you have kidney problems a doctor should be involve. For my slurring and choking
> 
> I use calcium 1000 mg 500 mg magnesium vitamin D3. If you are deficient in magnesium a lot of vitamins will not function in the body. Magnesium is a helper enzyme cofactor for a lot of vitamins such as B1 and B12. Here is a PubMed article that states this. [http://www.ncbi.nlm.nih.gov/pubmed/4050546](http://www.ncbi.nlm.nih.gov/pubmed/4050546) Can you tell me all the symptoms you are having?

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**Author:** ![Lit\_Smith](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/lit_smith/32/208_2.png) [@Lit\_Smith](https://forum.livingwithataxia.org/u/Lit_Smith)\
**Post date:** [March 16, 2014, 9:34am UTC](https://forum.livingwithataxia.org/t/any-drugs-that-help/2074/11 "2014-03-16T09:34:25Z")

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Hello Scotty

I have SCA1 too. I was using poles, now I use a rollator. The neurologists have only tried to get me on Baclofen for easing cramp. It did not agree with me and so I found an alternative herbal supplement - turmeric.

I take 1 x 400mg Organic Turmeric in the morning an 1 at night. I also take Opti 3, a vegetarian Omega-3 (very similar to fish oil).

You need to be careful that drugs do not interact with herbal things. I found this good site to check stuff on

[http://www.mskcc.org/cancer-care/integrative-medicine/about-herbs](http://www.mskcc.org/cancer-care/integrative-medicine/about-herbs)

I also take Co-Q10 (like you) and Resvasterol and creatine.

Also this is old but has a useful bit on anti-oxidant levels (if you scroll down)

[http://www.ataxia.org/pdf/DrSusanPerlmanQ&APresentation.pdf](http://www.ataxia.org/pdf/DrSusanPerlmanQ&APresentation.pdf)

I do not know if anything really helps, but psychologically I feel better for taking them!

Hood luck with what ever you try : )

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**Author:** ![Patsy](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/patsy/32/3_2.png) [@Patsy](https://forum.livingwithataxia.org/u/Patsy)\
**Post date:** [May 21, 2014, 11:02am UTC](https://forum.livingwithataxia.org/t/any-drugs-that-help/2074/12 "2014-05-21T11:02:51Z")

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My neurologist has prescribed Pregabalin [Lyrica] for my muscle ache and nerve pain. I searched this site for any mention of it and found this discussion.

The leaflet is quite scary but then... arent they all!!

I was hoping it would relieve pain and let me get on with life but seems it will just make me more tired.

It says do not drink alcohol too which is disappointing as I like a glass of wine with main meal.

Any comments?

Patsy

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**Author:** ![branthony](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/branthony/32/1402_2.png) [@branthony](https://forum.livingwithataxia.org/u/branthony)\
**Post date:** [May 21, 2014, 2:40pm UTC](https://forum.livingwithataxia.org/t/any-drugs-that-help/2074/13 "2014-05-21T14:40:15Z")

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My SCA hit me hard when i was 53. I have SCA 14 with myoclonus. I take keppra and klonnapin but it doesn't always keep things under control. I have tremors as well. I take all the vitamins as well (B12 and d deffiecent). I can no longer walk or take care of myself.

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**Author:** ![Scotty](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/scotty/32/1075_2.png) [@Scotty](https://forum.livingwithataxia.org/u/Scotty)\
**Post date:** [May 21, 2014, 3:11pm UTC](https://forum.livingwithataxia.org/t/any-drugs-that-help/2074/14 "2014-05-21T15:11:11Z")

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Hi Patsy,

My advice is to try Pregabalin. It loosens me up. I take 75mg in the morning. I used to split it. Take some in the morning and some in the evening. Taking it in the evening would make me stumble more as my muscles were too loose.

Just having it in the morning works for me. I havent noticed it making me more tired than I already am.

I like a glass of wine at night too!

Red wines not good for your muscles apparently, so try white!  
  
Patsy said:

> My neurologist has prescribed Pregabalin [Lyrica] for my muscle ache and nerve pain. I searched this site for any mention of it and found this discussion.
> 
> The leaflet is quite scary but then... arent they all!!
> 
> I was hoping it would relieve pain and let me get on with life but seems it will just make me more tired.
> 
> It says do not drink alcohol too which is disappointing as I like a glass of wine with main meal.
> 
> Any comments?
> 
> Patsy

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**Author:** ![system](https://canada1.discourse-cdn.com/flex027/uploads/ben_ataxia/original/2X/e/e30900c8db9e7859445c45df1a93b72099e1b777.png) [@system](https://forum.livingwithataxia.org/u/system)\
**Post date:** [May 17, 2016, 1:57am UTC](https://forum.livingwithataxia.org/t/any-drugs-that-help/2074/15 "2016-05-17T01:57:36Z")

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Hi Scotty

,i have SCA1 to, my wife is a pharmacist so i try anything and everything out there but haven't found anything besides exercise that is beneficial

have you yet?

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**Author:** ![Scotty](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/scotty/32/1075_2.png) [@Scotty](https://forum.livingwithataxia.org/u/Scotty)\
**Post date:** [May 17, 2016, 6:57am UTC](https://forum.livingwithataxia.org/t/any-drugs-that-help/2074/16 "2016-05-17T06:57:55Z")

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Hi Nath, still Pregabalin. Now I take slow release beta-blockers as well. Seems to help with the shakes. You could try them?

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**Author:** ![system](https://canada1.discourse-cdn.com/flex027/uploads/ben_ataxia/original/2X/e/e30900c8db9e7859445c45df1a93b72099e1b777.png) [@system](https://forum.livingwithataxia.org/u/system)\
**Post date:** [May 17, 2016, 10:16am UTC](https://forum.livingwithataxia.org/t/any-drugs-that-help/2074/17 "2016-05-17T10:16:42Z")

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yeah thanks bro ill hit up my nero. or DR up for a script(whoever i see next)

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**Author:** ![Scotty](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/scotty/32/1075_2.png) [@Scotty](https://forum.livingwithataxia.org/u/Scotty)\
**Post date:** [May 17, 2016, 10:40am UTC](https://forum.livingwithataxia.org/t/any-drugs-that-help/2074/18 "2016-05-17T10:40:09Z")

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Cool. Let me know how it goes

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**Author:** ![ataxiabr](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/ataxiabr/32/1826_2.png) [@ataxiabr](https://forum.livingwithataxia.org/u/ataxiabr)\
**Post date:** [July 4, 2016, 6:23pm UTC](https://forum.livingwithataxia.org/t/any-drugs-that-help/2074/19 "2016-07-04T18:23:48Z")

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HI there, is there a similar diet for people with SCA-3?  
Thanks!
