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To Moilerner
About Chantix
I am seeing my neurologist in about a month. At that time I was going to ask her about Chantix. May I ask if you had to go through any hoops to get your neurologist to go along with Chantix. Did you need to present any documentation?
Had your neurologist even heard of it’s application regarding Ataxia before?
Was it covered by Rx insurance? Is this off-label use considered experimental?
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oldtimer,
I showed my neurologist this article on Susan Weir and how chantix helped her. she didn't know about it. she talked to Dr. Zesiewicz at univ of fl for the protocol, no hoops. tzesiewi@health.usf.edu 813-974-5909
http://hscweb3.hsc.usf.edu/health/now/?p=7277
I'm on medicare. it is not covered. for quantity of 120 I paid $77.00. I'm not sure if it's experimental. I would think so.
good luck! its not a cure. it does help some people.
moilerner
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hi oldtimer,
I wanted to let you know that chantix has helped my dizzies but I'm shaking and bouncing like never before. so I'm lowering my dose to .5 mg 2x a day. my neuro hasn't gotten back to me yet but I'll find out soon enough if a lower dose is right for me.
moilerner |
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First of all, I’m glad that chantix helped with the dizzies but, what do you mean by shaking and bouncing? Are you referring to a Parkinson-like shaking? And did it do any good to cut down on the dose? Did your Neuro ever get back to you?
I’m trying to get as much information as possible, before seeing my neurologist.
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hi oldtimer,
I guess the shaking and bouncing is Parkinson like. I cut my dose to .5 2x a day. my neuro got back and told me to lower my dose. my right hand still shakes but it was doing that before chantix. I'm still dizzy but it's manageable. It's still soon to tell but I think cutting my dose has helped. I wish you good luck if you try it. I've only heard good things about it from other ataxians.
moilerner |
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Oldtimer,
I up my morning does of Trehalose to two table spoons so far I am ok and kept my noonday does to 1 table spoon. I might try upping my evening does to two table spoon and see if I can take it. |
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Moilerner,
We both suffer from cramps because DRPLA and SCA2 are chromosome 12 mutations. Thats why taking cal-mag helps both of us. |
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I can't take too much cal/mag otherwise I'm in the bathroom alot. my allele 1 cag repeats are 38 and allele 2 cag repeats are 22. sounds like I know alot. all I know is the way I feel. do you have problems with balance?
moilerner |
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Moilerner,
Yes I do have balance problems but I still can walk unasisted. I got my ataxia at 55 I am 68 now and progressed the most the last 3 years. I can take 1667 mg of cal-mag without any problems. I tried taking extra 400 mg magnesium on top of what I am taking now and got the runs. I hope you are well and doing fine with your cramp problem. |
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Moilerner,
Keep taking cal-mag because my dad who had ataxia with severe cramps did not take cal-mag and he died of colon cancer. I've read that cal-mag deficiency leads to colon cancer. We ataxians I believe who have SCA2 and DRPLA are deficient in cal-mag so we have cramping. By taking cal-mag 1667 mg I have not had one cramp. We also need cal-mag
to build strong bones because we are prone to falling. Please read website on calcium deficiency. Espeacially on 'What calcium deficiency leads to' and 'Calcium Deficiency'.
http://www.squidoo.com/calcium_deficiency |
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Moilerner
How is your progress with chantix
I went to my neurologist yesterday and she gave me an RX for Chantix.
I had sent her an email previously, so she could research it if she needed to.
Dr Zesiewicz did not respond, so if I understood correctly, she (my neuro), went by the information on the University of South Florida website . http://hscweb3.hsc.usf.edu/health/now/?p=7277
Anyway, my editorializing aside, is this the same amount. your doctor prescribed to you?
The first 4 days, I take 0.5 mg
The second 4 days, I take 0.5 mg twice a day
The third 4 days, I take 1.0mg in the morning and 0.5mgs in the evening
The fourth 4 days, I take the full amount 1.0 mg in the morning and 1.0mg in the evening.
I have not gotten it filled yet. |
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hi oldtimer,
my dosing was similar, over 4 weeks I work my way up to 1 mg 2x day. I am still shaky (got worse on chantix). I have been decreasing my dose hoping the shaking will be less or stop. I saw my neuro yesterday. she gave me primidone for essential tremor. I woke up this morning after taking it the night before and I felt like Frankenstein. I could do nothing all day. I won't be taking that again too soon. it amazes me that chantix is helping me function throughout the day.
moilerner |
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hi Hamachi,
in addition to taking cal/mag I also eat goat yogurt (recommended by my acupuncturist). goat products are supposed to be alot better than cow products. although goat yogurt tastes different than cow, like it fresh off the farm (if you know what I mean).
moilerner |
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To Moilerner
If the shaking got worse on Chantix, how is it helping you function through the day?
I guess I am asking, in what ways has it brought about improvement?
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I used to get so dizzy when I'm vertical, then I would have to rest for a few hours. I couldn't do much. on chantix I'm still dizzy but I am less dizzy and it's manageable. I don't have to rest half the day. dizzy for me is crippling. I'll take shaking over dizzy. do you get dizzy?
moilerner |
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Moilerner,
Please read what Dr. Cannell says on website www.Purityproducts.com.
Go to search box and enter Dr. Cannell. He says Vitamin D3 is essentional in absorbing Calcium.
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To Moilerner,s question re dizziness
Dizzy is too hard for me to put a finger on.
My main problems are balance, speech and handwriting, followed closely by coordination.
Out of doors and in large spaces, the balance problem is more pronounced. Doing things becomes more difficult as it progresses.
When I am tired, dizzy comes into play. Dizziness is not constant, more situational.
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hi oldtimer,
hows chantix going? is it having any positive effect?
I'm still dizzy but managing.
my brother and I are going to visit my other brother in Florida. he has ataxia and malaria which he got in Vietnam. we're going in May by train. flying has become a pain in the neck these days.
moilerner |
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Moilerner
I quit the experiment with Chantix.
I only lasted 10 days. I was feeling worse, I don’t know if it was from progression or the Chantix.
I started a new symptom, my legs were bouncing uncontrollably during an exercise class, and I had an all around feeling of blah and bad taste, and my balance and fatigue were worse.
Since I quit, I have stopped bouncing and having a foul taste in my mouth.
My balance is still worse, so I guess it was progression. There is still not enough known about this as a symptom control. There is a lack of documented trials. What works for one doesn’t work for all. From what little I have read, it works best for those in worse shape and for smokers.
I saved my pills for a future try, when I know more about it.
Anybody got a Chantix story to share?
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Oldtimer,
Are you still taking Trehalose? I am on my second order of 4 3lbs bags from BrooklynPremium so far my progression has not slowed appreciatebly.
My body only tolerates 1 table spoon 3 times a day.
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