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Suhcuddo (@suhcuddo)

How do I get some sleep?

Sleep Health | Last Active: Mar 23, 2013 | Replies (63)

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Hi. Iam very,very sorry to see your comment. I read it several times and I can honestly say…IT SUCKS BUT I,M RIGHT THERE WITH YOU!!!!!!! You gotta wonder what we did to deserve this crap…. Suhcuddo, all I can say at this point is hang in there and solve one problem at a time, You inspire me cause here I am with ONLY severe RLS and I have lost all hope. My nero Dr. threw his hands up since I,ve tried just about every crappy drug for this and only REQUIP. {large doses} somewhat controls the RLS. Your neck pain is maybe manageable????? , and the acid reflux ‘SHOULD BE ABLE TO CONTROL”, but what are you doing for your RLS?. I am not into social media and I,m a newbie at this forum,so please forgive my awkwardness…. Maybe some angel will see this and help us both with these ailments. I,ve been so healthy all my life, it,s so difficult and the Drs. that i have been to actually know less than me about RLS. You are in my thoughts and prayers and I feel that at the very least, you should know that I hear you and I LITTERALLY feel your pain………..David

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Replies to "Hi. Iam very,very sorry to see your comment. I read it several times and I can..."

I like to refer to my RLS as RBS because it effects my whole body. I was on mega doses of Requip for years and unfortunately you do become emmune to it over time. It’s just that type of drug I guess. I am currantly taking a combination of Pramipexole and Gabapentin. It helps better than the Requip so you might want to ask your doc, about it. I think that the docs, don’t really know what to do about RLS, I’m not even sure if they really know what it is. They come up w/ these causes that have nothing to do w/ me, like pregnency and anemia. Have they told you anything? about what might be the cause? And if they think they’ll find a cure? As for my neck pain that started w/ a MVA in July turns out I have arthritis. Stress makes it worse. That’s why we need sleep. Lord, what I would give to be able to sleep nightly like normal people. I really appreciate your feed back. And hope to hear from you soon…….Suhcuddo

Hi S., Well it’s 12:01am Sunday morning and here we go again. I went to bed at 10:00pm and now I’m wide awake and feel like I’ve been sleeping and dreaming forever. I came to the laptop and saw where you had responded so at least I can fill you in. I hope you are getting some “Z’s” and maybe feel a little better. I certainly like and agree with your RBS analogy. It truly does effect the whole body and spirit also. May I answer your questions and concerns now………no they have not told me anything abou causes. I’m male, so pregnency is out, anemia also . Had all tjhe standard tests years ago. Other than this ,I,m really healthy. Smoking is my only vice and thats been going on for about 58yrs, but not heavy. I feel that the “cause” is genetic. Both of my folks had RLS and POP would sleep right through it. Tough generation!!!!!!! As far as a cure, well it ain’t too far up. on the ole totem pole. They claim it’s “non fatal” but I suspect you & I may argue with that. After all……..how many folks feel so hopeless and desperate like you and me.I won’t type the rest of that statement……….As a note to u, I was driving yesterday, and it HIT like a frieght train in the right leg and my best description is it was like getting shocked by 110volts. The muscles would tense-up every 25 seconds from lower back to toes. an hold for about 3 or 4 seconds in waves of agony. Good Lord!!!!! That has been happening alot lately and I’m pretty concerned. I call it ……PARKINSONS LITE. Hope u giggled a little. That neck problem of yours makes me sad. Good Grief, S, you sure don”t need that. Any way you can maybe lower the stress in your life? Probably a dumb question, huh. Maybe the good Lord will ease your stress level or ,at least send u a great looking masage’ therapist with big ole white wings and such……….Yeah I am sooooooo sure!!!!! Just kidding, S, i know it is not funny at all, but we gotta do something. Again, maybe I made u smile just a little. I appreciate tjhe scoop on REQUIP. Looks like the same thing may be happening to me. what the heck is Pramipexole????? Not familiar w/that one. I tried Gabapentin. and even the newly approved HORIZANT and as usual, no relief. Rigjht back to Requip.Well I may be boring you since I,ve gone on so long and I apologize for that. You are in my thoughts and prayers and please keep your chin up and your back to tjhe wind, I,m a stranger but through our mutual suffering, I DO care. Have a great Sunday kiddo……hope to talk again soon……..PS do u know about th RLS foundation?????

Is that 12:01 your time or my time? My time is pacific time. Genetics do make sense,though I’m the first and only one that I know of in my family. God getting it while driving would be rough! I feel for ya,and glad you didn’t loose control. I didn’t know they had tests for it, except for sleep studies.
EXACTLY!! It’s like squeezing a spring way too hard then letting it go “BOING!” and the pain that goes w/ it arg! When I first started the Pramipexole, it didn’t do much. so they added the gabapentin on top of it and that seems to work pretty well. I’m used to being low man on the totem pole being #6 out of 7 kids. But they do need to put some importance to to this. It may not be fatal but it is totally debilitating.(in more ways then one.) All I need for my neck is a 24 hr heat wrap and restitution from the woman who rear ended us. Thank-you for the giggle and the smile :). For if we don’t laugh at this as only we can(Being there), then we are in a whole heap of trouble. It keeps the desparation at bay. I’ll look up that foundation right now. chat w/ ya later.

Good evening S! It’s good to see your note. I’m on central time down in the deep south but all things cool are on Pac time in my humble opinion. It brings back such wonderful memories of Berkley, Alameda, San Fran., Downey,Oakland,Long Beach and such. Those WERE the days!!!!!!! God just to be able to go back for a little while. Whooa…..my spirit went soaring…sorry. About your 24hr heat wrap….am I oversimplifying by asking about ICYHOT.? Yeah I know, it’s too simple to be any good ,but I gotta take a shot at it. No word on the Big White Wings yet????? Wow you are 6 out of 7.. thats really pretty cool. Have you checked your siblings to see if they have the RLS curse???? Seems like No7 would have said something about it. By the way, what was up with the woman who poped you? Let me guess………cell phonnnneeeee. maybe not or maybe so. I ‘m so sorry that happened to ya. It could be any of us at anytime. Lots of “lawers” love it but I sure do not. Your spring analogy was spot on. You actually made me giggle&smile. Thanks. You probably already know by now but I think it is http://www.rls.org for the foundation. Membership is cheap and they have a wealth of Knowledge and with your computer skills, it may be of some help. They are the Lone Voice in the desert when it comes to the FDA and things such as that. I’m going long again so b-4 I go , I don’t want to forget to ask if you have ID,d the “Trigger” for your RLS. Mine is unfortunately food and relaxation. Nighttime is my worst enemy. Kind of a reverse vampire……. luv,luv luv, the sunlight ang hate the dark cause it brings on the nagging spectre of ,as you put it, RBS. Evening meals can be explosive with misery unless I time it just right with Requip. and RequipXL in combination. You have me curious about Pramipexole. Gonna look it up now. Hope to hear from you…. it’s Sunday, maybe you are resting. I sure hope so. Adios for now.

Howdy do! It was good to hear from ya 🙂 I’ve often wondered why they call it the “deep” south? I’ve never been. The furthest S. I’ve been is Las vegas that was just to visit my sister. When I was a kid I ran away to Calf, but didn’t get very far. I’m further north than that “Twi-Light” territory. If you keep up w/ such things. I like a good vampire movie but could never get into that one. I guess I just have a thing for Frank Langella (sorry), Any ways…I’m allergic to Menthol which is what makes those work. I use a damp clothe in the mic but I have to keep micing it ’cause it cools down so fast. But it works. and it’s cheap! She just said she was distracted and was looking down. So was I, but I was the passenger in a stopped car. She wasn’t. I’m just thankful, it coulda been a lot worse. I luv luv luv the sunshine too! probably ’cause we don’t get any. This past year has been horrible too. Not good for us depressed types, I’ve never really figured out what my triggers are. It just seems to be random, Walking more than usual or stressfull exercise will make it worse, If I get a cold or a flu that aggrevates it as well. I have noticed that the muscle relaxers the docs gave me for my neck help. But I worry about all these pills. Addiction is a big thing in my family. I don’t want to fall in that trap. Caffine and Niccotine are my only vises and I’d like to keep it that way. I’ve seen what the other things can do. I’ll ask my sis, but I don’t anyone else in the family does, My daughter is in her early 30’s so she may be a little young yet. I didn’t start getting symptoms till I was 40. Except for the cramps,I’ve suffered from those all my life. She’s never had that problem so I’m hopein’ she won’t have this. It’s Mon now, I spend Sundays hiding from the football goin’ on in the livin’ room. Wow, Did I go long or what? Sorry, didn’t mean to chat your ear off. It’s just sooo nice to chat w/ someone in the same shoes..ya know? Hope to hear from ya soon “S”

Hi S, fantastic to hear from ya. so much to share and ask this afternoon after reading your note. you made me smile. i gotta go finish a few things, but promise to come back asap to respond. This is cool!!!!!

OK now I,m back. Sorry for the delay. In reading your last note let me address some points…… the deepsouth is Louisiana.<baton rouge area to be more specific. I wish I could have shared some of the sunshine that we had this summer with you & yours cause It was plentyful and very dry this year. I,ll request some for ya with the Powers-that-be. Dosen’t hurt to ask. U were kinda brave to run to calif. as a kid. Wow. I’m impressed. That shows that you are strong- willed and that strength is to be admired. It is probably what keeps u going and thats a GOOD thing. I only mention v-pires cause they alledgedly can’t take the sunshine whereas u an I and others like us relish it……..{who is F. langella…duuuuh?} Good point about Menthol. I guess that knocks out my theory bout ICY-HOT. Only other thing that comes to mind is heatring pads and the trendy yet effective Bean-Bag type that u put in the micro-wave. Ms. S what about my theory on inflammation as opposed to arthritis, and possible relief from the 3 shot series of steroids. Any thoughts or comments???????? Do u think it is worth mentioning to your DR.?????? Yeah I’ll bet she was just lookn down, lookn down at her phone…… good grief!!!!! If u have not figured out what your triggers are here is a big CLUE, from the research dept. per RLS Foundation {I”m trying to not sound like mr know-it-all} the TWO MOST COMMON TRIGGERS are CAFFINE and nicotine. Chocolate will send me sailing with RLS because of the caffine in it. Luv it but limit it drasticly. Only DECAF coffee will do although I personally drink a pot of it each am since I’m up all nite. And since my RLS has worsened in the last 14 months, I can’t imagine what would happen if I digressed to caffineated. Probably……BOOOOM!!!!!!. Will u think about it???? The nicotine is an unknown for me but very suspect since I don’t Z AS MUCH , and I smoke when i’m up. Your feedback on this ,so far is requested. out of concern. As far as exercise and stress, I agree…… it seems to aggrevate it. B4 I forget, RLS morphed into augmentation in 2010 when I treated the common cold with DAYQUIL, NYQUIL AND OTHER COLD TREATMENTS. Please BEWARE!!!. again , I did not know until I referred to the RLS info that I sent off for 25yrs ago. hey I ,m reeeally going long again,,,,,,,,,,so sorry Ms S. Digest this an please comment. and let me know if I peaked any intrest. Always fantastic hearing from u so please keep it rolling. There is so much more to share. Thanks……………David

Yea, ya gotta stay away from the benidrils that stuff will put me into a “Spring loaded” mode. As for the cafine I just forgot about it I’ve gone from 3 pots reg. to 3 cups 1/2 calf. So I’m workin’ on that. And I’m down to 5-6 cigs a day, more on bad nights though. I’ve switched to lights and do 1/2 at a time. Sounds weird, but it’s workin’ for me. I’m going to call my neorologist today, He’s the one that has me on the gabapetin and pram, I looked them up and the side effects include depression and mood changes. Well, I’m also takeing The methocarbamol for muscle spasms and neck pain. Just guess what their side effects are. Yep, the same. So I think it’s time for a med review. My sweet tooth has really gone A-wall on me. I’m goin’ through a salt and protien phase right now. I luv my pepperoni and cheese sticks. ‘Specailly the pepper jack :)YUM! I don’t know why, even my moachas don’t sound good these days (those have allways been decaf). Caffine has never really bothered me. the way I found out I was addicted was when I cut back on it and got the head aches. I amagine that any stimulant will triggure it. So I been tryin’ to stay away from them. And like I said I’m workin’ on the 1/2 calf and smokes. It’s turning out just like my Dad used to say…”Everything I like is either illeagal, immoral, or fattening.” Oh getting old can suck sometimes. I’d like to answer you sooner on this but I’m a noisy typist. And since retirement he sleeps til’ 10:00.
O.k you asked. Frank Langella played Dracula in the 1979 version w/ Laurence Olivier and Donold Pleasents. It’s more of of a romance movie than a horror flick. Great movie though. If your into the story though, beware, they have Lucy and Mina turned around in this one. Well, I guess you just got a taste of what I do at night. (when I’m not playing my videa games.) Well, I gotta get on the phone, so hopefully hear from ya soon (U R right, This is way cool!!!)

HIIIIIIIIIII!!! Greetings from the south again, I got your last note and parts of it cracked me up. So glad you knew about the caffine and benidrils. nowq that’s out of the way..I,m so glad that you are going to do a med review. That’s a very big deal. I’ll wager that the stuff that is supposed to help you is actually killing you. I,m in the middle of 3 projecrts so I,m going short now ‘but Iwill have more later today…Thanks S…..

Scroll down your comment from yesterday. O.K?

Hey. lost contact with u. I have Info. for ya. please advise………

Ur not getting my emails? That’s weird. Well, keep trying. I’m still here. and have been been waiting. I’m deffinately thinking about another doc. just not sure how to go about getting one.

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