IS THERE LIGHT AT THE END OF THE TUNNEL?

Whether new to RLS or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
jan3213
Posts: 1706
Joined: Wed May 26, 2004 8:46 pm
Location: Illinois

Post by jan3213 »

HEY CLARA!

Welcome back! It's so good to see you back on the board..... :)

Hugs
Jan
No one is alone who had friends.

claradragon
Posts: 93
Joined: Wed Jul 21, 2004 5:15 am
Location: kent,england UK
Contact:

Post by claradragon »

good to be back! :wink:
My bio is on pg1/new to rls/new members and current members please help.My diary is under new to rls/is there light at the end of the tunnel?

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

Post by becat »

OOOOOOO IT's My Clara!
I'm in tears just seeing your name. I have missed you so much. Your still in my thoughts and prayers. I hope that things are going well for you.
I also hope and pray that they (the docs) have found something to help you and issues that were are still and settled.
I love you and I miss you and I am glad to have you home my dear friend from across the pond.
Hugs, the biggest hugs.
Lynne

ksxroads
Posts: 645
Joined: Tue Aug 02, 2005 8:19 pm
Location: Kansas

Post by ksxroads »

Dear Ms Dragon or is it Clara :lol: ,


So glad to meet you, and look forward to getting to know you. I am a rather newbie to the board. One thing I do know, is that without the support and encouragement of these wonderful people I would not be experiencing the quality of life that I am currently blessed with. While I am far from cured, I do experience days where I feel just about normal!

************Positive Energy***************

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

Music can be made anywhere, is invisible and does not smell. --W H Auden

jumpyowl
Posts: 774
Joined: Sat Mar 27, 2004 2:59 pm
Location: Yantis, TX
Contact:

HI EVERYBODY!

Post by jumpyowl »

Lynne, Clara, old and dear friends:

I got a note and I just had to see it.

As you know I am trying to accomplish things and am consulting to two companies (both poor but deserve the help). While I am fighting diabetes and obesity, I am losing the battle with RLS.

Not so much with the disease but with the neurologist. I seem to have insufficient energy and a befogged mind to be able to think things out logically.

I apologize that I am talking about my experience and asking for help, possibly my turn will come to help others.

Briefly, the situation is as follow:

I have been on Mirapex since I have deserted you guys. Went through strange drugs which I broke away from, except dear old MiraPex.

I was getting along except my legs were real sore in the morning and woke up after 4 hours sleep. Dr, said that Mirapex is a short range drug 4-6 hours, I should increase the dosage.

I would have preferred either to get off Mirapex or get another supplemental drug. She believes one drug at a time, which is usually a good idea, but not always!

Now I am up to 300 (three hundred) pills a month and I think I am still hurting just as bad. Her theory is that I have a real intense PLMD at night.

My question is?

Since PLMD exists without RLS, how do we know or why do we assume that Mirapex (or a dopamine agonist) works on PLMD?

Since she is giving me the weakest hydrocodone there is, 5/500 once a day, she could give me either a more powerful painkiller which could help, or a muscle relaxant, which seems to work..

I even considered topamax again but I am trying to keep my brain functioning as I need it.

My greatest joy is that I am slowly regaining my skill in playing my violin. My neurologist says that I probably should not do it because of some strange sensation in my wrists, but I am trying to ignore her on that, she is probably a bit of a spoil sport.

I am gradually conquering diabetes. Luckily I got the guts to get off the officiaL DIET in time. Now my fasting glucose levels are down to normal and lost a few pounds (15 lbs). Only thing it cost me was 2 kidney stones as I got dehydrated one day. At least I have a decent edocrinologist who gave me an ACE inhibitor to prevent kidney problems later on.

Boy, I have not had such a long complaining spell for a long time. I have to get back to writing a manual for sales reps.

Please, Lynne remember that I do so fondly of all of you. We had such a nice group here when this board started. How are your Tannenbaums? I wish I still had the time and the clarity of the mind to again become a helpful member of this Forum.

Clara I can't research you now but remember you well. Hope you are still there fighting.

Love to you all,

Jumpy Owl (my name on the diabetes board is Diabowl)
Jumpy Owl

ksxroads
Posts: 645
Joined: Tue Aug 02, 2005 8:19 pm
Location: Kansas

Post by ksxroads »

Dear Jumpy Owl,

***********Positive Healing Energy*************** Being sent to you from this little sitting owl... a name given to me ages ago!

I am no expert on any of this, and like you my brain has been rather froggy as of late. *Fibro Fog* they call it.

I do know that the one hydrocodone 5 at night has kept nightly rls at bay. During the day I take Ultram 100mg 3x a day. If I don't take the Ultram during the day I have daily and nightly rls... which is odd that the lortab 5 will not work but I have to take two lortabs. I worry about the amount and the FDA has warnings about using Ultram with other opiods, but so far it is working on the RLS and I am thankful for that.

SO HAPPY that you have the glucose levels normal. I too am diabetic. So far I am not on medication and have managed to keep my AC1 levels below 6 with exercise and diet. Though I could manage both of those areas better.


**************More Healing Energy***************

It has helped me a great deal to read through the posts you have left here on this board, just want you to know that I appreciate your insights and they have helped me more often than you know.

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

Music can be made anywhere, is invisible and does not smell. --W H Auden

ViewsAskew
Moderator
Posts: 16571
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

Hope I can answer a few things, Jumpy. First, there is research that shows the DAs, specifically Mirapex, do help PLMD. "These studies have found that the use of pramipexole greatly reduces periodic limb movements during sleep" http://www.mdvu.org/library/disease/rls/rls_mdopa.html

However, other people have had leg pain from Mirapex and it has gone away upon discontinuing it. I have severe PLMD and have NO leg pain from it. Did you have leg pain before the Mirapex?

I'm sounding like a broken record, but I do think that sometimes our bodies get confused by all that we throw in them. The best way to figure out what we need is to stop all medications for the RLS and see what happens. Dr Earley recommends that for augmentation and I'd hazard that it's good any time you are not sure what is working and what isn't and what is caused by the meds and what isn't.

I also am not persuaded by her argument that one drug is better than multiples. It takes a huge amount of one drug sometimes and it's not as effective as small amounts of mulitple drugs. That said, sometimes multiple drugs can create problems of their own.

It's so exciting that you are playing your violin. How wonderful.

Ann
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.

jan3213
Posts: 1706
Joined: Wed May 26, 2004 8:46 pm
Location: Illinois

Post by jan3213 »

Dear Jumpy, it's Jan~~~~

It's so good to hear from you. I'll never forget all of the help you were to me when I first joined almost two years ago. I miss seeing you here......

I was on Mirapex when you were active here and I still am. I also am on Clonzepam---1.5 mg. each nightly. I have had PLMD, but honestly don't know if I still do or not because I rarely spend all night in bed with my husband. I have to roam the house almost every night, ending up sleeping in a recliner or on a couch in our family room. However, my legs are sore every morning. But, I have developed peripheral neuropathy (ideopathic) and fibromyalgia in the last year and a half. So, who knows why my legs hurt----could be any of the three things (PN, fibro, RLS).

Personally, I seem to need both Mirapex and Clonzepam--although, I am seeing a new neurologist the end of June and plan on talking to her about a new plan of attack on my RLS.

I'm so glad you're playing the violin again. Beautiful instrument..... Music soothes the soul, doesn't it?

Take care of yourself--you know how I worry about you!

Love,
Jan
No one is alone who had friends.

cornelia

Post by cornelia »

Hi Jumpy,

I had sore, painful legs while on Requip or Mirapex on it's own. Once I added Neurontin the pain stopped.

Corrie

claradragon
Posts: 93
Joined: Wed Jul 21, 2004 5:15 am
Location: kent,england UK
Contact:

Post by claradragon »

good to hear from you all,hopefully later in the week when i get more time i'll bring you up date.

my thoughts are still with you all old and new members alike,the day to day frustrations of living with this silent illness...well it's not something that can truly shared with those that don't live with it,but there are a few compassionate souls that realise what we overcome everyday.

love and hugs to you all

clara
My bio is on pg1/new to rls/new members and current members please help.My diary is under new to rls/is there light at the end of the tunnel?

jumpyowl
Posts: 774
Joined: Sat Mar 27, 2004 2:59 pm
Location: Yantis, TX
Contact:

Sorry for the hiatus, I will try to reply to all!

Post by jumpyowl »

I was deeply touched by you all who reacted to my cry for help. :cry: You all helped! I am seeing my neuro tomorrow and getting ready for her. :wink:

I will take you in chronological order:

ksxroads: I do not know you but it is my loss. I actually felt the positive energy you sent my way. Thanks a million. I needed it.

AC1 < 6 is good for a diabetic. What diet are you on? low fat or low carb? For anybody with glycopathy the choice should almost be obvious.

I have controlled my diabetes with losing some pounds, diet, and exercise in the last two months. My AC1 value went down from 7.2 to 6.1 and I lost 15 pounds. Since this value is a 3 months average, the next test should show some more improvement, I hope. My fasting glucose level; is averaging under 110 mg/dL and it is slowly decreasing.

Ann: you amazed me. you were always good but you have grown tremendously since I have been loafing. I also agree with you that when RLS gets severe, it is almost mandatory to use more than one drug. Or at least it should be the preferred treatment.

I looked up a clinical study for Parkinson's patients. The conclusion was that daily doses of Mirapex over 1.5 mg per day up to 5 mg a day showed no added therapeutic value. I have only RLS and am taking 5 mg Mirapex in 24 hours! :shock:

So what I almost expected it happened: my wife and I walked to a party in the neighborhood and sitting at dinner I started to feel strange (I had an afternon nap and took 1 mg of MX after I woke up. What I have forgotten that I also took some MX before I laid down only 2 hours before.

Anyway the overdose started to affect me during dinner. First I tried to overcome it but it was getting worse. I had to chose either to stay and possibly pass out or try to get home. I whispered to my wife that I have to go but she should stay and enjoy herself (calm voice). I was sitting only 10 feet from a rear door. So I sneaked out. Nobody even knew I was not there anymore as we won no door prize. :)

I made it home (400 yards of walk) and laid down. The side effects were fairly strong hallucinations (vocal), vertigo. Finally I did go to sleep.

I woke up hours later with a head filled with buzzing cotton. My wife was already home but did not want to awaken me.

Since then I tried to cut down on the MX but not having anything to substitute for it makes it hard. Codein derivatives also help but I do not really have any left. I have Topamax and also tinazidine a muscle relaxant. But I have not started to take any of them regularly. The lower leg cramps are reallly intense. Magnesium may help a little.

Also my lower arms, wrists and fingers act like I have Carpal tunnel syndrome. My neuro checked me for that and I do have some sign of it. Nerve conduction is still okay. She think I should give up violin. However, as long as I am capable to play I will not obey her.

Hello, Jan: My, you have been blessed. I am glad to hear that neurontin and clonazepam help. I have plenty of neurontin left over. I will ask her for clonazepam (I prefer Ativan (lorazepam) but doctors do not like to prescribe it.)

You are right about the soul. I can play for hours at night even though by that time I have fairly severe muscle pain just standing there. Just cannot stop. Two of my favorites right now is Monti: Czardas and Manesset: Meditation (from the opera Thais). But play a lot of Bach, Handel, and Mozart.

Cornelia: I remember you well. From Holland are you not? When you mention Neurontin I remembered of the hundreds of pills I have on the shelf. I am not sure what the shelf life is.

I was considering Requip, probably not that much different from Mirapex. I shall ask her. That is her preference BTW (causes no diarrhea).

Well, Clara! Last but not least. We are all waiting for you to let us know what all have been happening in your life.

Let you know how I get along with Sasha tomorrow. Wish me luck!

8) :?: :!:
Jumpy Owl

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

Post by becat »

Jumpyowl, You lovely man.
I loved reading about the violin and what you prefer to play. Truely heart music, no don't stop yet.
I wish you all the luck tomorrow with the doc and I hope you attempt to control your brain, so that you do not out do her degree to quickly. LOL
Teach softly my Feri.
My love to you, please be careful with your body and those meds. We need you still and always.
My heart to you.
Lynne

jumpyowl
Posts: 774
Joined: Sat Mar 27, 2004 2:59 pm
Location: Yantis, TX
Contact:

Becat, I am so glad you joined this impromptu gathering

Post by jumpyowl »

Good advice Lynn: You are right I do get into arguments with docs. Last time it was with our family doctor. I will try my best tomorrow to behave. Lo prometo!

Fondly,

your jumpy and diab-owl! Soon to be a violin-owl! :)

My wife says I am improving. What did Bernard Shaw said to an obnoxious person:
"My lady, you can only improve!

How you sleeping Gal? AS you can see I am not either. :( :
Jumpy Owl

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

Post by becat »

Well Don't change your name too fast on me, but whatever you decide to name yourself I'll love it for sure. You've done no wrong in my eyes thus far.
Sleeping? Is that a normal thing others do? LOL I have gone downhill so badly since last Nov.. I made a horrible medical choice and almost hemmoraged in Florida and the National Convention. I know now that I was lucky I did not have a stroke. Never the less, it cost me plenty in my health and body. The doc in charge of me proved himself nothing more than having a degree in OBGYN and no real compassion or mentally sound advice.
I haven't slept through the night since. I'm trying and the doc has added Clonazapem to the mix, which I fought. But I do miss the sleep and the being awake when the rest of the world is.
I'll be fine soon enough, I'm fighting all the bad stuff I can and trying to up the good things. I need to get back on my mile and 1/2 every night for one. That really helped with my legs and I lost 4 sizes in clothes since you've seen me last.
Darn it Jumpy, we are so close I may need to come and have lunch with you and your sweety one afternoon. Let me get this kiddo graduated and the family and party out of the way........and then I'm coming to Tyler to see you. It's been too long that I've laid eyes on you and I think it would do me a world of good....that is if your up to lunch with a woman like me? LOL
Love ya too much for my own good. LOL
be good with the doc, get some pain meds and lower than darn Mirapex.
Lets us know what happens.
I sure do miss you.
Love Lynne

Guest

Post by Guest »

Hey, Jumpy--

Sara here, just wanted to say "good luck" with the doc tomorrow, congrats on the progress with your diabetes, and love to think of you playing the violin. That really touched my heart for some reason. :D

Hello and hugs to you and all old friends!

Sara

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