And, now my turn

For everything and anything else not covered in the other RLS sections.
ViewsAskew
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Post by ViewsAskew »

Yeah, I think he said to take 1-2 tabs (I don't know the dosage yet as I don't have it - not sure how it comes) twice a day. I'll start with one and see how it goes. I'm so sleepy right now I think I could sleep for a week if the RLS would stop.
Ann - Take what you need, leave the rest

Managing Your RLS

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ViewsAskew
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Post by ViewsAskew »

Almost 5 AM. Not sure when the script will get here but I didn't pay for delivery by 10 AM, so it could be as last at 5 PM.

I watched Marley and Me - I'd tivoed it a while ago. I'm not much of a fan of Hollywood movies, but thought this would be OK. I spent the last 20 minutes of it sobbing - I've been in that exact situation before and it's so sad to lose your best friend - be it doggie, kitty, or whatever.

But, the good news is that it kept me from paying much attention to the RLS. Now that it's over and I'm really tired and not engaged, however, the RLS is through the roof. I'm wiggling and stomping as I type.

I just can't think of anything to do to keep me occupied; I've watered all my plants multiple times, I groomed all my African Violets, I took pictures of all the plants I'm propagating, I did the ironing and I did laundry. I already swept and mopped the other night and did the dusting yesterday. I hate not having anything to keep my busy because all I want to do is sleep otherwise!
Ann - Take what you need, leave the rest

Managing Your RLS

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Neco
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Post by Neco »

That sucks.

Watch the door LIKE A HAWK. I never use Fedex anymore, I do not trust them. Not since the time I waited all morning for my overnight delivery and they dared to put a tag on the door saying them came but I didn't answer.

I was in the living room, which is right next to the front door they always come to, never heard a knock, the dog NEVER barked and she always barks at stuff, much less a person at the door.

ViewsAskew
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Post by ViewsAskew »

Aaarrgh! I was so tired I laid on the couch during a quiet moment and I fel asleep.

You know what happened next. Yep, Fedex came.....and left. I heard the phone but didn't think about what it might be so I ignored it. I was the driver asking to be let into our condo building.

Crap, crap, crap.

Now I get to rent a car and drive to the facility and pick it up, except it won't be there until 6 PM. Well, 6 PM is better than never, right? And it's certainly better than waiting until Monday.

This just became one expensive script!
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

SquirmingSusan
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Post by SquirmingSusan »

ViewsAskew wrote:I just can't think of anything to do to keep me occupied; I've watered all my plants multiple times, I groomed all my African Violets, I took pictures of all the plants I'm propagating, I did the ironing and I did laundry. I already swept and mopped the other night and did the dusting yesterday. I hate not having anything to keep my busy because all I want to do is sleep otherwise!


Um, come to my house and do all that? Sorry, just couldn't resist.

Seriously, I know you're suffering. Are you getting the prescription by FedEx, or the actual medication? Either way stay close to that door. It will get there and you will feel better and be able to sleep. Hang in there! :?
Susan

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Post by SquirmingSusan »

Oh crap. :(

In our area FedEx delivers on Saturdays but not on Mondays. It's good to know that kind of information if you're in that situation again. Next time maybe take some pillows down to the main building entrance and rest there. Except hopefully you'll have the meds you need from now on and this won't happen again.

Hang on; it won't be long now.

Image
Susan

ViewsAskew
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Post by ViewsAskew »

So, the envelope with the script wasn't available until after 6 PM. We rented a car and decided to do several errands, too. We got the envelope with no problem, headed back toward home and stopped to have Indian food at a buffet, thinking it fastest. We went into a South Indian place and out of 18 items, hubby could only have 4 - they either had hing (aesofetida), a spice that for some reason always has wheat in it) or actual wheat. 10 minutes later after asking gazillions of questions, to the place next door that we have had luck before. All was fine, we ate and left.

Next to my art studio, in which I do no art anymore as I have been too tired to leave the condo, so it's become off-site storage. It dropped to 24 F today; it's been in the 40's for about 2 months. Time to get winter coats.

Then to the pharmacy. I know I should have made it first, but it wasn't on the way. They didn't have enough. It's 9 PM, the car has to be back in an hour, my legs are starting to go nuts.

She calls one, two, five, seven stores to find one that has it in stock. It's back north, not too far away from the Indian food :? . Now, it's 9:20 and no way we'll get there, get it filled, and get back.

They have it, they fill it quickly, and call me. As he rings it he say, "Were you aware of what this costs?" I look up quickly, saying, "No, how much?"

"$130.00. Did you still want it?" He looked at me enquiringly.

The joys of no insurance. :twisted: I've said it before, but it bears saying again. I haven't a clue what the best option is for the US, but saying there is no problem means you aren't living in the world the rest of us are.

I put in on my credit card, asked for the nearest water fountain, ripped open the bag and took off the cap, then shoved one in my mouth. I probably looked like a junkie.

That was 33 minutes ago, approximately. I started feeling a bit lightheaded in the elevator coming up to our floor. I "think" my legs feel a bit of relief, but I could be imagining it. It didn't make me projectile vomit as hydrocodone does, so maybe all is well even if I had to spend about $700 to get to this point.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

ViewsAskew
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Post by ViewsAskew »

It's over a full hour - not sure how long it takes to work completely. I HATE the feeling of opiates in my brain. It's like pressure and it always makes me grumpy. The first time I took a mild opiate for tooth pain I was at work; I was fresh out of college and managing a fast food restaurant. By the end of the day, all of my co-workers and employees were like, what's up - you are not nice today!

I just took a sodium naproxen to hopefully remove the mild drumming and pressure in my head.

It doesn't seen that one will do it. It's enough to sit quietly while I type or watch a movie but I can feel the RLS just waiting for me to really relax. Then I'd need more. Not sure how I should play it tonight. If I want to try and sleep before 4 AM (6 hours after the first dose), I'd need to take another dose relatively soon. If it lasts 6 hours for pain, maybe it lasts a bit longer for RLS and I could get 8 hours out of it. If I took one more in about an hour, over 2hours after the first, maybe that would get me through several hours of sleep. I can hope, anyway.

He gave me enough to take up to 8 a day, but I'm hoping, at $130 bottle, I can get at least 2 months out of it, maybe 3 (though that's probably really pushing it).

OH! I can get at least that much if we alternate this with something else....now to find the something else. Tramadol just doesn't work on it's own, but maybe I could alternate 3 or 4 days of tramadol and Mirapex with 4 or 5 of this. I hope that 3 or 4 is enough of a break. Oh, and Mirapex costs a lot itself.*

Just realized I'm planning my life as IF this actually worked....I still don't know that it does! The methadone feels much like this. It knocks it out enough for me to do my daily activities without RLS, but it doesn't allow me to sleep. Hmmmm. Guess I'm getting a bit to optimistic. Guess that beats the pessimism I felt just the other day, however 8) .

* Checked on the status of generic Mirapex in the US. Found the following:

"At this time, no generic Mirapex (pramipexole) products are available in the United States. The first patent for the medication is set to expire in March 2011. However, Barr Pharmaceuticals has challenged the Mirapex patents in court, and due to the results of the settlement, Barr will be able to market a generic version no later than January 2010."

Hey, only a month to go!
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Neco
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Post by Neco »

I hope it works out for you.. Remember you've been aggravated, so you may just need a chance for your body to calm down.. The important thing is to plan out a schedule regardless and keep to that schedule for redosing.

If at least for a few days until your body calms down.. 8 a day is a lot, so don't overdo it of course. If you could stick to 3 or 4 a day that would be great.

Hope it all works out

ViewsAskew
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Post by ViewsAskew »

Given that I'm not a fan of how opiates make you feel (weird, huh?), I will not overdo it!

I just can't decide if I should take a second one, lol. It's 2 AM, 4 hours since the first one. I don't want to take a second one, but I want to sleep. I HATE going to bed, falling asleep and being roused out of a deep slumber by RLS. I just hate it. I'd rather stay awake and be miserable as that is less psychically horrifying.

If I wait too long, though, there is a chance it's not enough if I take the second one because too much of the first is out of my system. Grrrrrrr
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Polar Bear
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Post by Polar Bear »

OMG Ann, what a day, what effort to get your script and your meds. It's like the stuff a movie is made of.

I'm thinking of a movie ..... I think maybe it was called The Out of Towners - or something like that - perhaps it was Jack Lemon and Sandy ...... (someone)..... where the main character was trying to make a very important appt and everything just went wrong. It is a movie that creates a feeling of helplessness as surrounding events conspire to make things as difficult as possible.

Just thinking about the cost of your med. We used to have a charge of £6 per item on a script, with it being free for over 60s, under 16s, and the needy who fall into a prescibed criteria, and sufferers of certain crhonic conditions like diabetes. All scripts are now free of charge. Government Health Minister says funds can pay for this ..... but now it appears we have the worst and dirtiest hospitals in Europe, send patients to USA for surgery that cannot be performed in the UK, et al.

So our prescribed drugs are free, we do not have to worry about that, the way you have to with your med costing $130.

On the other hand, we are afraid to have to go into hospital, especially the elderley, cos of MRSI and the various other bugs that can kill.

Sorry, I digressed at little.
I hope that as I type this that you are fast asleep.
Perhaps allow' yourself enough meds to get a few nights good sleep and then re-think about alternating meds etc. when in a clearer frame of mind.
Betty
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ViewsAskew
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Post by ViewsAskew »

PB - I honestly don't know the answer. I know that it doesn't work in many places, including in the UK, Canada, and here, just to name a few. I just know that if I didn't have a credit card and didn't have some savings, I wouldn't be getting those drugs.

Still haven't decided....but am leaning toward taking one right now. They're supposed to work on RLS for 6-8 hours. It's a little over 4 hours now. That should give me a few hours of overlap, hopefully enough to get me to sleep for awhile. If I wake up in a few hours with RLS, I'll know to take them closer together tomorrow. If it works, I can try lengthening it until it doesn't work. Eventually I'll get it to where I just take enough for the RLS.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

cornelia

Post by cornelia »

I wish you blissful sleep Ann. Better times will come, but these are very hard times. See what RLS can do: you had to give up art altogether. I still remember you telling us that you had a new studio.

Like Nadia did, I think it is great that you tell in detail what is appening to you. It gives especially outsiders, family members and docters too a very realistic view of what RLS patients have to go through from time to time.

Corrie

SquirmingSusan
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Post by SquirmingSusan »

Ann, please do what it takes to get some sleep right now. You don't need to start rationing right away, or figure out how you're going to make this all work for the next few months. Take some time and don't worry about that stuff for a couple days. Just get ahead of the RLS and relax and get caught up on your sleep. Those other issues will wait.

Just relax...
Susan

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Post by Betty/WV »

Ann, I'm so sorry you are having such a tough time right now. I hope you find a solution soon.

RLS is such a confusing, terrible syndrome. When I read the posts on this site, and see how many are suffering, it really hurts me. I have had my share but right now its not so bad. But what am I facing down the road. It is so hard to figure out the meds., some of you seem to understand the pharmacuetical end of RLS very good. Not me. And my doctor doesn't understand RLS very well either. So I mainly rely on this site and of course there is always Dr. B, who helped me out when I was going to have surgery.

Wish you the best, Ann. And all the othe RLSers. BETTY/WV
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

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