Bridging the gap between RLS and ADD

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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lifejoy

Bridging the gap between RLS and ADD

Post by lifejoy »

Hello,
I am new to this site so i will start by introducing myself. I am an eighteen-year-old college student who has had rls for a definite 2 years, possibly longer. With a big botchup, I was prescribed temazepam, which is marketed as a hypnotic, meaning that it's more of an insomnia drug. I started at 15mg and about 8 months later i was consuming many times the largest dosage; I wanted a cure so badly. Eventually my psychiatrist (who was an understanding and sweet woman) decided it was time for me to go to a specialist. I agreed; something needed to be done.

I went to this sleep specialist and he decided we'd try the good ol' cardo/levo at 25/100. A month later we finally stabalized the med at 3 tablets of 25/100. It worked wonders..it even helped put me to sleep. 3 months later the drug stopped working altogether and had me waking up with a ridiculous headache that lasted most of the morning. This doctor acted soooo suprised...why "none" of his other patients had this problem. Made me wonder how many rls patients he has. From here he decided we'd give an epilepsy benzo drug that seems to be working pretty well..but not quite there. Now I have to explain the other half of my story. Just 6 months ago I was diagnosed with ADD (no hyperactivity, just lack of focus and concentration.) It is documented in many journals that add and sleeping problems go hand in hand. I'm curious to whether or not there would be two impeticuliar drugs that would work together to help the add and rls. I suffer from mild (sometimes severe) rls which coincides with add quite simply because lack of my brain regerating its energy. I'm afraid if I was to go onto an add drug than my sleep specialist would set a distance from drugs such as methadone because of 2 addictive drugs that work wonders for 2/3 of people that use them. I'm at college and he's very hard to get a hold of because he's so busy, and because of this I want something that I know will work. I had lortab for my wisdom teeth and remember sleeping like a baby. If it works why are we being denied the very thing that will help. It seems instead every drug except for the most obvious/likely to work are waited until the last step. The process of going through every parkinsons disease, benzo, and seizure medication takes a good year (atleast I know it would with my doc.) If I know that the only painkiller i've ever had (lortab for wisdom teeth) worked for a good night's sleep should I ask doc? I mentioned oxycodone at our last meeting and he looked at me and his facial expression said, "do you honestly think i'm a dumbass?!?" and then he continued to laugh with the "ridiculous" question just asked. I've done my research and oxycodone and methadone are two of the best working rls treatments.

Mayo Clinics put out a report saying that 2/3 of rls patients treated with opiates do extremely well on the treatment..why can't doctors look at this and realize they are specialized in finding a cure with the medicines we have out right now. It's just kind of tough right now, because I see him, we talk for 5 minutes and it's over, and i'm not able to put any input into the final decision. Methadone is a good drug in that its not highly addictive because of its duration, which would deem it (imo) a good drug to start using so that we all might be able to live our lives to the fullest as they were meant. Sorry it was so long, but I appreciate everyone who read it through..thanks :) Much Love, God Bless, and KEEP YOUR HEADS UP--WE WILL WIN THIS FIGHT!! :x [/i]

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

Hi Lifejoy

Post by jan3213 »

It's Jan

I cannot believe anyone who wrote that post is only 18. What an amazing youg person you are!!! I'm here to welcome you to our "family", but your post was so maddening (I really feel for you!!), that I just want to scream for you!! If you've read any of the posts, you know that a few of our members are going to the national meeting for RLS in Long Beach, CA and they are taking ammunition with them--questionnaires filled out by many people who post on this forum, and Qualify of Life Statements which explain how RLS has affected the lives of the people who wrote them. What you are experiencing is the very thing we want "fixed". I don't know if our representatives will be able to present these documents, but hopefully they will get into the right hands so that the doctors and others on Board, or whatever it is they call it, will know that we are people who deserve the right to live a quality life. I'm so glad you found us Lifejoy. I hope you decide to join. There are many wonderful people who belong to this forum--people who can help you by researching questions you may have, we have someone who is very knowledgeable regarding medical information, and the rest of us are here to offer you support and to listen to you when you need to vent. This is a safe place to come and scream your head off! We all understand and each of us takes a turn occasionally to let off some steam. We are a family--you've found a home.

Jan
No one is alone who had friends.

Lifejoy

Post by Lifejoy »

Jan,
Hello!! lol I appreciate your enthusiasm soo much..it's something in this world that a lot of people lack. I do plan on joining soon and the only reason I haven't is because up to this point I've enjoyed the privacy of my conditions of add and rls. I'm always happy when I can help other people and I have left a few replies here. I have a deep interest in topics such as rls and many other ones people have on here and I do as much research as I can to help the well being of others; I feel that it is one's most valuable skill, and everyone has the capability. I can tell that you also sincerely have this love and I thank you for so much devotion you have put into this website and other people's lives. They won't ever forget your kindness and help. If you do happen to know anything about the connection between rls and add please help me out. I typed this topic this morning at 6:?? am and was in that dreamy phase so I hope it made sense :). It's amazing what this community has done for so many people. Ever since I've come I realize that I'm not a hypochondriac, fiend, or any other name people want to throw out. It's extremely comforting and thanks everyone. I will try to reply to everyone's post from this point on if I can do any help. Take it easy and GOD BLESS!!

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

Connection

Post by ViewsAskew »

Hi Lifejoy, as I understand it they think some people are misdiagnosed with ADD as children when they really have RLS. The RLS makes them restless and move around a lot. As an adult, I personally often have ADD-like symptoms because my cognitive function is sleep-impaired. But, I don't have ADD. I'm not sure they know of any other connection; if you hear of one, please let me know.

And now for my current philosophy regarding all of this:
ADD, ADHD, movement disorders, OCD, addictions, depression all involve neurotransmitters. Too much, not enough, not able to uptake, etc. Seems to me, that when one is out of whack, it makes it easier to get the others out of whack, too. And once you start taking meds to alter the creation or uptake, you affect the others, too. IMHO, the drug makers and the doctors are just guessing when it comes to making and using them. Often the literature about these drugs will indicate that they don't know how it works!

Alwaysearching

Dealing with ADD and RLS

Post by Alwaysearching »

I am new to this forum but have dealt with RLS and ADD for a long time. Unfortunately, it seems to always be a matter of one drug working for a while and then moving on to something else. I think over the years I have been on every drug available for RLS. The one that I thought really worked the best was neurontin. The only problem is that it is also a painkiller and Doctors are reluctant to leave you on that for long. I am currently back on Sinemet again to treat the RLS. It works pretty well but it is tough to get up in the morning. I am not with the program until 10 am. I was diagnosised with ADD about 10 years ago. I currently am taking Ritalin during the day and Sinemet at night. I have also been through most of the ADD drugs and ritalin seems to be the best for concentration. What I found is that I cannot take the time release Ritalin or the other time release versions because it conflicts with the RLS and you will not get enough sleep. I have not heard of one drug that will deal with both problems. I tried Stratera and although it has a very calming effect, you cannot get to sleep at night with the dosages that are recommended. Good Luck

alwaysearching

update

Post by alwaysearching »

I wanted to follow up now that I am off work. As I said Ritalin works best for an adult. I do find that there is a rebound effect from it late in the evening where you get a little depressed. Adderall works, but it will not give you the concentration effect of ritalin. I have tried effexor and did not find that it worked very well. As I said earlier, I cannot tell about straterra because the doses required to improve your conentration with ADD will cause you not to be able to sleep.

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

Late to the subject

Post by becat »

Hello to you all,
Lifejoy, I have strong opinions about the drugs we take for RLS and why those are the one we are sometimes limited to.
First of all, unless your doc. has a fair amount of knowledge and experience dealing with RLS.........honey your in charge of teaching them. Sounds crazy, Right? It's not. Your doing the right thing by yourself, in knowing as much as possible. I also recommend that you listen to your own body and make notes. Reactions to things like milk, alcohol, your other medications, college students have stress, just as much as anyone. It all counts. Your body is not like any other body, so your meds. stopped working, your not crazy. It's not easy to find what works, as you stated. It's a constant work in progress. The RLS REBEL has some great non-pharm coping skills. Go read this and it may offer some help from time to time.

www.rlsrebel.com

My favorite line from the Long Beach Meeeting is the one:

This is the most common disorder, you'll never hear about.

Even the people that deal with this have little clue what to give us and how it all works. How long it will work for you is not the same for me. That's the truth. It is a matter of playing the field here. If they knew for sure what was really going on then we'd be closer to a diagnostic test.
It's iron, it's connected to ADHD, it's all possible, but not all provable. There is not even a true dianostic test that is out there that points it out. Ferritin levels, transferritin levels..........there's a question on the board right now about when the best time of day to have this tested.........the counts change throughout the day. Helpful test, but not if it's not done at the right time. GGeeeeezzzzz, it's a process living with this stuff some days, but it's worth it in the long run. Never let this define you.......you will define it in time.
About the medications.......well, (clear throat, breath) all of the current medications are "off label" use. Meaning that the government has not said that it's a real treatment for RLS. Not surprising when it's an overly ignored disorder. There are certain medications that are watched by the DEA. Over prescribing these medications might invite trouble. Being only 18, you have such a long way to go with this. I could understand them starting you out slow and on the smallest drug for pain they could. Guest what, you deserve Quality of Life as much as anyone. They can look at you crazy, tell you it's not needed, but if you live in pain, you suffer. Suffering is no longer allowed in my book. You don't have to get used to living in pain, it is a fact.
Yes, I'd go back and face your doctor down. You mention your Quality of life and ask him or her is this all the we're going to do about this. Is there an age when I will deserve to live pain free. IF YOU ARE NOT IN PAIN OR JUST OUT OF YOUR MIND WITH THE RLS, CHOOSE SOMETHING DIFFERENT THAN PAIN MEDICATION FOR AS LONG AS YOU CAN. I really mean that. You may never be symptom free, ever. But there are choices and your doctor needs to be your partner. If you feel he or she is not, seek another doctor. Unavailable is never a good thing. You can call the assistant to the doc., call until they respond.
Honey, we are always here for you. Your going to get through all of this with us. I wish I had more to help you, but my support is the only thing......maybe a little been there, done that too.
Be well.

lifejoy

Post by lifejoy »

Hey you guys, thanks a lot for the support and information. I've been away from the computer for a while, and am now checking the post for the first time in a week so it's nice to see people replying. I recently am doing pretty well and in the keep-it-out-of-your-mind mantality, and I think that this helps..I try to consider the cancer patients sitting in their hospital beds in nonstop pain. I hope that eventually the RLS in all of us will leave just as darkness every morning, but either way I hope that this community stays together and strong. Thanks again for the help and I probably won't be on again until sometime after Thanksgiving Break (it's a busy week) TAKE CARE! :D

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