Am I experiencing a Miracle??

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
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GymChamp
Posts: 5
Joined: Wed Apr 04, 2012 6:39 pm

Am I experiencing a Miracle??

Post by GymChamp »

I joined the RLS site four years ago but this is my first post (I think).
My RLS symptoms began 14 years ago when I was 51. My family doctor prescribed a couple of meds that had no effect, then prescribed Neurontin.,
That helped a lot, but my symptoms at that time were only the "creepy crawly" feeling with occasional leg jerks. Symptoms progressed rapidly and extensively. Soon I was taking 4 mg of Requip and 1 mg of Mirapex per night. By then my symptoms were as if I was being poked with a cattle prod every couple of seconds. "An urge to move my legs?!" That's an unfortunate JOKE in my case. I have seen at 5 board certified neurologists plus 3 different family doctors. I went back to my original neurologist because he possesses the most knowledge of RLS and he also listens to me intently. And yet still my symptoms continued to be intolerable. On top of that, I have not had a decent night's sleep in all these years, barely getting any sleep at all, and mostly in brief 45 minute naps on the sofa at night. I have been advised by 3 of my neurologists that mine is the worst case they have treated. It got into my arms and shoulders, my trunk, and also terribly bad in my abdominal muscles. My son, a medical school student, suggested to me that perhaps a stimulant that does not elevate blood pressure might possibly help. Is there such a thing, I asked? Modafinil, he said, brand name Provigil, is such a stimulant, he advised. So on my next regular visit I asked my neurologist about it. "It could make it worse," he advised. "But otherwise there is no harm done," he said. We even joked about how he would write up my case for publication in the Neurology Journal if it was successful. Well it has been two weeks now. Two weeks of T O T A L R E L I E F. I take 1 mg of Mirapex around 7 pm. I take 15 to 30 mg of Tamazapam at bedtime. I take 100 mg Provigil at 8 am and again a 1 pm. Maybe it's too early to tell if this is the MIRACLE I hope it is, but these past 2 weeks have been miraculous. I am sleeping through the night. I have total remission so far. Modafinal is a Very Expensive drug... $482 for a 30 day supply at my CVS, with my insurance. However, I found it at kiwidrug.com (during a 20% off sale for orders over $300) for only $159 for a 100 day supply, a savings of 90%, and it's delivered to my mailbox. I hope my results appear in the Journal of Neurology and on the front page of this site. I am 65 and feel 10 years younger! After facing TORTURE, REAL TORTURE, Every Night for over 10 years, relief is a genuine Miracle. P.S. I tried to attach a photo of my Rx but apparently a photo is not a valid file attachment. If possible to post a photo let me know and I will post it.
Warmest regards to all,
Ted J. Champion
Matthews, NC

stjohnh
Posts: 1284
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Am I experiencing a Miracle??

Post by stjohnh »

Wow. That would be great if there is another effective treatment.
Blessings,
Holland

GymChamp
Posts: 5
Joined: Wed Apr 04, 2012 6:39 pm

Re: Am I experiencing a Miracle??

Post by GymChamp »

I'm still afraid to believe it.... This is the first real relief I've had. Can't wipe the smile off my face!!!!
Jim

stjohnh
Posts: 1284
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Am I experiencing a Miracle??

Post by stjohnh »

What happens if you don't take the mirapex, just the provigil and temazepam?
Blessings,
Holland

QyX

Re: Am I experiencing a Miracle??

Post by QyX »

stjohnh wrote:What happens if you don't take the mirapex, just the provigil and temazepam?


Ya, I am asking myself the same question.

4 mg of Requip and 1 mg of Mirapex is a lot. For me it looks like augmented, so it doesn't surprise me that your symptoms got that worse.

It's strange that even you've visited so many doctors nobody had that thought.

Otherwise it is very interesting that Modafinil is helping.

Skippy
Posts: 27
Joined: Mon Feb 08, 2016 4:14 pm

Re: Am I experiencing a Miracle??

Post by Skippy »

Very interesting...I have often found that drugs have the opposite effect on me than what would be expected. I wonder if taken at night if it might help me sleep. I cannot take sleeping meds. they make my rls worse. I have found that if I can't sleep in the early morning because of rls that if I drink coffee that I can fall asleep.

Sojourner
Posts: 1657
Joined: Tue Dec 05, 2006 5:56 am
Location: USA

Re: Am I experiencing a Miracle??

Post by Sojourner »

Here's at least one article comparing modafinil and caffeine. I'm in the group for which caffeine is a total rls trigger.

http://www.ncbi.nlm.nih.gov/pubmed/15198278
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.

GymChamp
Posts: 5
Joined: Wed Apr 04, 2012 6:39 pm

Re: Am I experiencing a Miracle??

Post by GymChamp »

1. "4 mg of Requip and 1 mg of Mirapex is a lot": Yes, it's enough for a horse. Made me very nauseous many times. After 2 years the requip dosage was reduced to 2 mg, still take 1 mg of mirapex. My symptoms were "that worse" before the heavy doses. Augmentation was investigated and re-investigated. Docs said not my problem.
2. Still need the mirapex... I feel the "electricity" begin to buzz in my legs but now that subsides within 20 minutes without escalating to TORTURE. Have not tried going without mirapex. I don't mind a little buzzing or tingling in my legs for 15 to 20 minutes!!!
3. Caffeine: One neurologist was a caffeine evangelist. He preached that caffeine was the root of all sorts of maladies, especially with rls. I have gone caffeine free a month at a time seeking relief. Honestly it had zero effect on me, except being drowsy during daytime and having symptoms as a result!! I seldom have any caffeine after 2 pm. And I never buy that supercharged $10 coffee at those oh-so-cool coffee houses. I got used to Army coffee, so any coffee tastes good to me.
4. Again, that "urge to move your legs" has never described my symptoms other than the first 6 months of the disease. That's like saying you experience an urge to to run cold water on your hand when it is covered in burning napalm. Some urge, huh? My legs, arms, abs, "don't need no stinking urge" to jerk and contract with great force, they accomplish that all by themselves.
5. I would not consider taking modafinil within 8+ hours of bedtime. Without the tamazapam I have difficulty staying asleep even without the torture routine.
6. It is interesting that modafinil is helping. But in my case that's like saying being rescued by the lifeguard from the bottom of the pool and given CPR to restart my breathing and heartbeat is "helpful." Not at all being critical, just offering an honest representation of my experience.
7. These are the facts in my case. I hope they help. That is the reason I share my experience. I had nothing but misery to share until now, so I remained silent until now.
8. This is my last post for a month or so, until after my next physician visit. Best wishes for everyone's relief!

QyX

Re: Am I experiencing a Miracle??

Post by QyX »

How would you prescribe your primary symptoms?

What I get so far is insomnia. That's why you are taking the Benzodiazepine. Then you have this "electricity" ... a symptom I know very well by myself. I hate it. It is difficult to treat. Normally it occurs when I am taking a substance who is not RLS compatible. I also consider it being it a symptom of augmentation. The longer I took DAs, the more worse this "electricity" got. As long as I have "electricity" symptoms I can't sleep at all. I am very sensitive to this kind of symptom.

After all you should avoid taking drugs who make your RLS worse and looking into opioids seems like a reasonable option.

GymChamp
Posts: 5
Joined: Wed Apr 04, 2012 6:39 pm

Re: Am I experiencing a Miracle??

Post by GymChamp »

Your questions are addressed in my first post above. I took oxycodone for 2 years, as much as 60 mg per day. It provided the euphoria and an addiction that was uncomfortable to break, but it never provided relief from the "electricity" or the powerful jerking of my limbs and abdominal muscles. Want to know how RLS has affected me for past 12 years? ... get a Taser and hit yourself with it, except my convulsions last a couple seconds and repeat every couple seconds for an hour or four.

GymChamp
Posts: 5
Joined: Wed Apr 04, 2012 6:39 pm

Re: Am I experiencing a Miracle??

Post by GymChamp »

I no longer suffer (and I suffered terribly for 12 years) and so I let the membership know exactly how that came about.

Best wishes to all; I truly hope you find the relief you seek too.

nimshie29
Posts: 1
Joined: Tue Nov 17, 2015 6:17 am

Re: Am I experiencing a Miracle??

Post by nimshie29 »

Thanks for posting. It is paradoxical because Provigil is a stimulant. I am glad you found something that works for your horrific symptoms. I am on Sifrol (pramipexol) at the moment but am awaiting augmentation with dread. This may be a way out when it occurs. I have chronic pain and not being able to lie down and rest when in pain was driving me to suicide.
You must have a new release on life? Have you considered reducing/stopping your other meds especially the bezos? I have a feeling that most meds suppress our normal release of dopamine and other neuro-modulators and over time make our symptoms worse?

Joanie60
Posts: 197
Joined: Thu Mar 15, 2012 2:48 pm

Re: Am I experiencing a Miracle??

Post by Joanie60 »

GymChamp,

I am SO HAPPY for you!!! How wonderful that your son is involved and helpful, and that your doc will prescribe what you need. What an incredible blessing...to have your life back :-)

Fingers crossed that this combination works FOREVER!!

Joanie

badnights
Moderator
Posts: 6259
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Am I experiencing a Miracle??

Post by badnights »

I am blown away by GymChamp's experience. What's going on there? I'd love to know. I'd love to feel 10 years younger- -I feel like I've aged 30 years in the last 10.

I take modafinil every morning. It doesn't help my WED/RLS at all. It doesn't keep me awake if I have the opportunity to sleep, but it helps to keep me alert when I want to be awake. I experimented with taking it at nighttime to see if it would help the WED/RLS - I forget why, it was something QyX found helpful that made me wonder about it - but it had no effect there either. It didn't prevent me from sleeping, but didn't seem to help the WED sensations either.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

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