Hi everyone. I 've just found this site and I'm so relieved that I'm not going through this ordeal alone.
I live in the UK and I am on dialysis awaiting a transplant.I can manage to deal with the other symptoms that having kidney failure gives me but for the last 10 months I have been suffering severe RLS.
The main problem is getting to sleep.I know that I thrash around when I am asleep,as my husband has told me that I nearly knock him out! However I'm not too bothered by that, it's just the hours every night in tears with frustation, tossing and turning desperate for some sleep.
So far I can't find a drug that works for me or at least one that stays working!
My Dr. first gave me Zimovane which worked for about a month then had no effect. Lorazepam was next but didn't have any effect whatsoever.So my Dr. said try the "original knock-out drops" Cloral Betaine or mickey finns.I thought these were bound to work but once again-nothing! Then I tried Tegretol which worked for about two months and I thought hurray I'm going to be allright now.After upping the dose to the max my Dr. was happy with, it then ceased to have any effect.
I then read about Ropinirole and how it was supposed to be a breakthrough in treating RLS,so I asked my Dr. for it and had great hopes,but it made me feel so sick,which maybe I could have put up with, but the main problem was that although it took the RLS away it gave me insommnia! so that kind of defeated the object.
Out of desperation next ,I remembered an old packet of Temazepam that was in the cupboard,so I took 10 mg and I had the first proper sleep for months.However the stage I'm at now is that I've had to go up to 15mg and then 20 to still work and now the 20 doesn't work.
Could anyone tell me how high I can go with the temazepam or should i go back to one of the others but in a bigger dose,or alternatively is there another drug i can ask for which maybe works in the same way as Tegretol or Temazapam but is longer lasting.
I would be so grateful for any help as I'm getting desperate.
Please someone help!
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ViewsAskew
- Moderator
- Posts: 16576
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
My thoughts. . .
It sounds like you've been through the proverbial wringer. My thoughts are with you. Here is a link to a site that lists all drugs that are used and the usual dosages. I use this info when I see my primary care doctor, while I await a in the distance appointment with a new neurologist. The website is maintained by a doctor who is on this organization's board.
http://www.rlshelp.org/rlsrx.htm
Good luck. Maybe you can take this info with the new Mayo Clinic algorithm http://www.mayo.edu/proceedings/2004/jul/7907crc.pdf and get some better results.
Ann
http://www.rlshelp.org/rlsrx.htm
Good luck. Maybe you can take this info with the new Mayo Clinic algorithm http://www.mayo.edu/proceedings/2004/jul/7907crc.pdf and get some better results.
Ann
(((((((((Sandy))))))))
n/a
Last edited by becat on Mon Dec 28, 2009 2:47 am, edited 1 time in total.
Welcome Sandy
Hi, I'm Jan
I just want to add my welcome to Becat's. I am so glad you have found us, but so sorry you have to suffer from RLS in addition to dialysis and the stress of waiting for a new kidney. It humbles me so to hear your story, Sandy. What courage you have and what an inspiration you are to all of us. I wish I had an answer for you, but I don't. Becat gave you some very good advice about the Non-Pharm section on the forum. I hope you find something in that section that might help you. I just want reiterate what Becat said about RLS. In reaching out for help for yourself, you have helped all of us. Coming from someone who is facing such a serious situation as a kidney transplant, you have confirmed that RLS is at the very least, a nuisance and at the very worst, almost intolerable. Thank you. I want you to know that you have found a "family" here. That's what I like to call us. You will find many wonderful people (you have already met one of the very best, Becat!). We have people who have a gift for researching issues, people who are very knowledgeable concerning medications, etc., and people who are always willing to lend an ear or a shoulder when life gets too difficult. This is a place where you can be yourself. It's a refuge, a home. Welcome! God bless you!!
Jan
I just want to add my welcome to Becat's. I am so glad you have found us, but so sorry you have to suffer from RLS in addition to dialysis and the stress of waiting for a new kidney. It humbles me so to hear your story, Sandy. What courage you have and what an inspiration you are to all of us. I wish I had an answer for you, but I don't. Becat gave you some very good advice about the Non-Pharm section on the forum. I hope you find something in that section that might help you. I just want reiterate what Becat said about RLS. In reaching out for help for yourself, you have helped all of us. Coming from someone who is facing such a serious situation as a kidney transplant, you have confirmed that RLS is at the very least, a nuisance and at the very worst, almost intolerable. Thank you. I want you to know that you have found a "family" here. That's what I like to call us. You will find many wonderful people (you have already met one of the very best, Becat!). We have people who have a gift for researching issues, people who are very knowledgeable concerning medications, etc., and people who are always willing to lend an ear or a shoulder when life gets too difficult. This is a place where you can be yourself. It's a refuge, a home. Welcome! God bless you!!
Jan
No one is alone who had friends.
Hi there Sandy I'm Lyndarae, and I and truly humbled by you tonight, I start to feel sorry for myself and then I here your story. This RLS is a daily battle for all of us, but I can not even begin to imagine how you must feel. Like Jan and Becat said you are not alone anymore!!! And tonight I know there will be many prayers comming your way. You hang in there hon. You might be an ocean away but you are in my heart. Lyndarae
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bradyferguson
- Posts: 74
- Joined: Tue Sep 21, 2004 1:29 pm
Brady
It's Jan
Brady said:
That is so true, Brady. This IS a safe place to vent, but it is also a place of HOPE!! I don't need to say anything else, except what a valuable asset you are to this forum!
Jan
Brady said:
One point that I would like to make. (PLEASE DO NOT TAKE OFFENCE TO THIS AS IT IS JUST MY OPINION). If there is a time that I do enjoy the benifits of controlling my RLS I will not dissapear from this fourm. I have seen it happen in AA and NA where people come and go only when they are in times of need. We need people in this fourm to share when things are going well in there lives. THAT GIVES ME HOPE that someday I might enjoy the same. If this was just a fourm to vent when feeling frustrated or to share only when things are going bad THERE IS NO HOPE.
That is so true, Brady. This IS a safe place to vent, but it is also a place of HOPE!! I don't need to say anything else, except what a valuable asset you are to this forum!
Jan
No one is alone who had friends.
quality of life statement
Hi Sandy,
I told you, your message would get a strong reaction. I wanted to tell you what I'm about to jump into and see if you'd like to help.
I'm getting ready to go the the USA National RLS Meeting next week. My special project has been to collect Quality of life statements and prepare a packet for the keynote speakers and a couple of other persons of interest.
I was so thrown by your post, as a couple of others here, I was wondering if you would be interested in writing one out for me?
The link listed below is the main thread on this subject or you could email me a letter.
http://www.restlesslegs.org/phpBB2/view ... sc&start=0
It doesn't have to be big, just honest. How RLS has effected your life? I really hope you'll think about it. I have until Sunday, Nov. 7 this week to collect all that are going to be put into the packet. Your story is one of importance and I think speaks to us all.
Thanks for thinking about it.
I told you, your message would get a strong reaction. I wanted to tell you what I'm about to jump into and see if you'd like to help.
I'm getting ready to go the the USA National RLS Meeting next week. My special project has been to collect Quality of life statements and prepare a packet for the keynote speakers and a couple of other persons of interest.
I was so thrown by your post, as a couple of others here, I was wondering if you would be interested in writing one out for me?
The link listed below is the main thread on this subject or you could email me a letter.
http://www.restlesslegs.org/phpBB2/view ... sc&start=0
It doesn't have to be big, just honest. How RLS has effected your life? I really hope you'll think about it. I have until Sunday, Nov. 7 this week to collect all that are going to be put into the packet. Your story is one of importance and I think speaks to us all.
Thanks for thinking about it.
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lifejoy
temazepam
Sandy, first of all our situations seem to be extremely similiar. 3 years ago I realized that I was always tired, inexplainably. I decided to go to a psychiatrist to see if something could be diagnosed. At first it seemed that I had insomnia since RLS and insomnia often accompany eachother. She decided to prescribe temazepam to me. I started with 15mg and soon after went straight to 30mg because it didnt seem to be enough. In a nutshell, 7 months after her prescribing this I was taking 7 30mg pills. Looking back it seems crazy but tolerance developed faster than I could have ever fathomed. It was incredible..even with that much in me I could watch tv for an hour or two into it. The truth is, temazepam is a benzodiazepine, BUT it's marketed as a hypnotic for sleeping; a insomnia medication. It probably will not help your legs from staying still, it definitely didnt me. Benzodiazepines such as klonopin are marketed for anxiety and seizures in the United States and in England it's only prescribed for epilepsy. Talk to your doctor, you don't want to fall into the trap that I did. Withdrawal is a *****, but it can be avoided now. Best of luck to you and GOD BLESS