Self-diagnosed

Whether new to RLS/WED 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.
jumpyowl
Posts: 774
Joined: Sat Mar 27, 2004 2:59 pm
Location: Yantis, TX
Contact:

Self-diagnosed

Postby jumpyowl » Sat Mar 27, 2004 3:45 pm

I am approaching seventy, so I am no spring chicken. :( I am not in favor of taking medications but about twenty years ago I was put on antihypertensive medication. I never seriously believed I had even marginally high blood pressure. Actually had to cut down and vary the medication as I ended up hypotensive and hypokalemic. :x

When my younger brother suddenly died of cardiac arrest at the age of 65 :cry: I started to take my medications more seriously. 8) After weeks of experimentation with various types of antihypertensives, I came to the conclusion that I do not need to take such medications at all so I gradually stopped. :roll: - Bear with me, I believe it has something to do with RLS. :wink:

During all that time I was also under a lot of stress so in order to be able to sleep I was prescribed a low dose tranquilizer taken only at night. This I was taking off and on for at least fifteen years. :oops: I weaned myself of that, too. :)

The last antihypertensive medication my doctor and I experimented with was a combination antihypertensive drug to prevent hypokalemia. That was a near disaster as it first blocked (temporarily) the kidneys then caused severe muscle cramps in the legs.

It was during these weaning periods when I started to notice crawling ant sensations in the lower limbs, severe pain in the knees, especially in the right knee, combined with some sciatica pain, so at first it was not clear what the cause was, possibly withdrawal symptoms :?

I had some minor knee injury in recent past so I had some MRS done and no major cause was found. :o

Hydrocodone left over from the dentist seemed to help. So did some tranqulizer also left over. Searching the internet last week I ran across this web site. :shock:

As if a spot light were turned on! :idea: I only had to read a few pages of the description of the symptoms to know that I had RLS. Then the more I read, especially on the type of drugs that help, I suddenly realized that taking calcium channel blockers, beta blockers of various kinds for decades when none needed could have easily interfered with the nerves' functioning and could have triggered RLS. :idea:

Now I am starting to look for a doctor who will put up with me and is willing to work with me, or am I supposed to work with him? :? I am not crazy about starting on some drugs again, but a man gotta sleep.

Aside but possibly relevant. My daughter is chronically ill with fbromyalgia which also seems to be related to a sleep disorder (alpha wave intrusion in delta sleep phase) and she is on Xyrem therapy that has been approved for narcolepsy and cataplexy. I may end up at the same sleep lab and then we shall see.

Are there any old timers out there with similar problems? :?: Of course, we all have aches and pains, but these are something special!

JUMPYOWL

User avatar
Rubyslipper
Posts: 992
Joined: Wed Mar 24, 2004 2:53 am
Location: Missouri

Postby Rubyslipper » Sun Mar 28, 2004 1:20 am

Most days I don't feel like a spring chicken either although I am just :cry: pushing 50. I do know that RLS can happen more frequently (and more severly) the older you get. By all means, find a doctor who will both work with you and for you. So far I am fortunate to be able to mostly control my symptoms with medication at low doses. But hang in there and let us know how you are getting on. :wink:

Guest

Postby Guest » Sun Mar 28, 2004 3:00 am

Rubyslipper: Thanks for the prompt reply. Plowing through that long post of mine must have taken some intestinal fortitude. :)

You would not want to share your medications, would you? I have found so far that anticonvulsives such as Topamax and or Klonopin (petit mal) appear to help. Naturally opioids also. But these are heavy guns and one would rather keep away from them.

At present I am not even sure what the criteria of help is. I am fairly certain that there are certain sleep disturbances (lack of uninterrupted delta phase sleep) that can only be measured by ECCG in a sleep lab. These can accumulate and cause exhaustion, mood changes (for the worse), muscle pain (other than the classical that goes away with movement). But you can only tell vaguely by how you feel next morning.

It may be serendipitous that during the past ten years some of the time I spent together with my daughter who has a severe form of fibromyalgia. Severe in pain that is. My wife also has pain combined with inability to get a good night rest.

Nowadays the tendency to prescribe some antidepressant or other, CNS depressant is too great, even when the mechanism of action is unknown. Still when used right they can be a blessing.

Well, enough of the speculation, time to go to bed and start St. Vitus' dance :( What is a good idea? Not to take medication until the symptoms come, or take it right after going to bed? I am not even sure they come every night.

Jumpyowl

Guest

Postby Guest » Mon Mar 29, 2004 2:42 am

Right now I am taking Wellbutrin, Mirapex and Neurontin. I have found that if I take them about 1 hour before bed, they work the best. I have also found out that if I am out late and do not take my meds at about the same time each night, I will really pay for it. When that happens, even the meds don't help. If you read much that Nadia offers on this website, she talks about being your own guinea pig. That is so true. I finally figured out that I need to take my meds at the same time each night and I also found out that caffeine is a killer for me. I like my beer (occasionally) and so far that hasn't been a problem. But I only drink one maybe once or twice a month. If that becomes a problem I'll quit that too. :cry: Right now I am trying to wean myself off the Wellbutrin (an anti-depressant) I just hate taking meds and if I can get by without that one, great :D If not, back to the Wellbutrin. I just started Neurontin about two months ago because the other meds weren't working as well. Instead of upping the dosage of the Wellb. and Mirapex, the doctor suggested starting Neurontin. She also thinks maybe I have peripheral neuropathy, hence the Neurontin. Get to a doctor who is familiar with RLS. This organization has a site for doctors who specialize in RLS. My doc is just familiar with it (she says) but so far she is the best informed of any I have gone to. Anyway, let me know if I can help in any way and please check out the other RLS sites available. Sleep well!!

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

ON MEDICATIONS

Postby jumpyowl » Mon Mar 29, 2004 5:14 pm

Thanks for revealing your meds, Rubyslippers or is it Dorothy? Looks like your doc covered two out of three primary bases for a primary pharmacological attack:

1. (nonergotamine) Dopamine Agonist: Mirapex

2. Opioids/benzodiazepines/nonbenzodiaz. sleeping draughts: skipped

3. anticonvulsants: Neurontin

As you and your doctor have already guessed the antidepressant Wellbutrin is apparently not doing much good for RLS

It is revealing and quite believable that attacks have to be preceeded by the medication to be effective in preventing them.

I have no excess to #1 but I tried a low dose Topamax which is an anticonvulsant (#3) and it helped just by itself. I also tried various members of #2 even before I self-diagnosed myself, and they all seem to help to various degrees. One has to be aware of addiction to certain drugs, although if one takes it for a real symptom and not for the buzz, the danger of addiction is much lower.

It is a good rule of thumb that one should not self-medicate and should be under doctor's care. However, this assumes that the doctor knows what he/she is doing. Unfortunately, nowadays one cannot take this for granted.

If you find that you do not miss the antidepressant once weaned off of it you will be better off. In my experience certain physicians are too quick to prescribe such medications whether it is truly needed or not.

I will read Nadia as soon as I figure out how to navigate on this board.

Good luck!

Jumpyowl
Jumpy Owl

User avatar
sardsy75
Posts: 862
Joined: Thu Mar 18, 2004 8:56 am
Location: Queensland, Australia
Contact:

Re: On Medications

Postby sardsy75 » Tue Mar 30, 2004 2:19 am

Hi Jumpyowl :)

I'm sure you've found my posts around the boards by now.

Age-wise, i'm just a spring chicken, at 28. I had undiagnosed RLS as a child. I can clearly remember being dragged from specialist to specialist only to be told that they did not know what was wrong. It eventually went away by the time I was 10/11.

In May/June last year (03) I was fighting a low grade virus which my GP could not pinpoint. In the last week of June I rocked up to my GP, scared out of my wits because I just did not want to stop "waggling" my legs. My RLS had hit so hard that my GP and the neurologist I'm now seeing had worst case scenarios such as MS, Motor Neurone and "Stiff Person's" Diseases at the top of the list. However, after countless blood tests, x-rays, MRI's (now THAT was fun :roll: ) being poked, prodded and asked a million questions I was labelled the most severe case of RLS the Neuro and his colleagues had ever come across (yay-not!).

I was started on cabergoline (not widely available in the US, but quite popular here in Aust) as it has the longest lasting effects of around 32hrs. Within 8 weeks I was up to 5mg/day and only just keeping things under control. In late October I went through augmentation and my Neuro switched me to Parlodel (bromocriptine): A complete disaster and two weeks of hell! Back onto the Cabergoline in November and struggled along until the day after Christmas Day when I finally cracked. After a long talk with my Neuro he decided to add Madopar (levodopa and benserazide) to the Cabaser. So, in January this year I was on:

5mg Cabergoline per day (taken at dinnertime)
2 x 100mg Madopar (taken an hour before bedtime)
1 x 500mg Valerian (taken an hour before bedtime)
1 x Multi-Vitamin & Mineral Tablet (to counteract my complete loss of appetitie from the cabergoline)
1 x Bio-Magnesium Tablet

At the same time I was averaging about 1-3hrs sleep a night and working myself into the ground (10-11hr days, plus nightwork, plus w/ends). I'm a financial accountant by trade.

At my Neuro appointment in late January I begged for help with my sleep (or lack thereof) and was prescribed a very low dose of Temazepam (10mg), which in the end achieved nothing. I was also off for a chest x-ray as I had been battling the most annoying dry cough for a few months by then. Cabergoline can cause lung problems if used for a long period in high dosages. My x-rays came back clear, but my GP wasn't convinced and sent me for lung function tests, which, also came back clear.

It was about this time that my Neuro decided to "drop off the face of the planet" so since January I've been dealing primarily with my GP.

Everything came to a head on February 7th when I asked my hubby to call the ambulance for me at 2.30am. My blood pressure had bottomed out through the floor, and my core body temperature had Dropped to 35.1 degrees celcius (37 is normal). The combination of work, little or no sleep and no relief from my RLS had sent me into a major anxiety attack. With the complete support of my GP, nurses, hubby and parents I resigned from work the following Monday, with the hope that getting away from the stress of my working environment and having a period of complete rest would help bring me under control.

It's been seven weeks since I resigned, and although just getting away from the stress made a huge difference, the problem was not solved. I was still coughing, so we (GP & I) decided to trial a decrease in the cabergoline by 1mg to 4mg, and, to help me sleep (after I'd had the third degree about sleep hygeine) I was prescribed sinequan (a tricyclic anti-d). After a week or so, my cough had disappeared and I was getting 5-6hrs Deep sleep per night(yay!). The following week, my legs started going crazy. I had read that tricyclics could cause RLS symptoms to increase, so we automatically reduced the anti-d and increased the Madopar to try and sort it out. No good, legs got worse. It finally dawned on me that it was Madopar augmentation. So, back onto the anti-d and weaned off the Madopar and onto Parlodel (still on 4mg cabergoline as well). It took about four days, and then I was in HEAVEN!!! No Symptoms!!!!

For nine days I had no symptoms at all, the first time since October last year. But, my cough had come back, so, it was back off the Parlodel and down to:

4mg Cabaser/day
2 x 25mg Sinequan/night.

Last Friday my legs finally figured out what had been going on and my symptoms were back with a literal "BANG" and i've been fighting them ever since. Sunday night was the worst night. So, i'm back to my GP this afternoon to figure out what we can do. Pramipexole isn't yet released here in Australia so we can't go there unless we can get onto my Neuro. My only other lifeline right now is going to Ultram/Tramal.

If I had a chainsaw right now, i'd chop them off, but that wouldn't really acheive anything as then i'd have to contend with a) phantom RLS and b) learning how to walk on my hands :roll:

Think I might go and give my massage therapist a call and see if she can fit me in for a cranio-sacral session.....

Until next time....take care
Nadia
28/Qld/Aust
Nadia

My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

Guest

What a cocktail!

Postby Guest » Tue Mar 30, 2004 4:17 am

Hi, Nadia:

I did not realize you posted here so I went and posted on the Hydrocodone forum where I could not even correct my post :( .

I got lost all the names of your medications and now it is too late for me to look them up. But I was struck by the fact that you did not seem to have received any opioids (unless I missed some of them). If one ignores the prejudice of the doctors against them, they can be useful in otherwise hopeless cases.

You did not mention pain. And only lately they admit that pain can be associated with RLS (except that early publication in 1695 :) ), but they did not call it RLS then.

I will reseach your drugs (they are more meaningful to me by group name such as anticonvulsants). My daughter has a severe form of fibromyalgia. She cannot work and she is on 8 different medication and six hormones. One of the medication is a strong sleep medication designed to help increase delta phase sleep.

She has been on extended release morphin for several years now and it has done wonders for her. She is no longer suicidal.

And I thought I had it bad!

You must be a fighter. I am glad you are taking it easi(er).

JumpyOwl

User avatar
Rubyslipper
Posts: 992
Joined: Wed Mar 24, 2004 2:53 am
Location: Missouri

Postby Rubyslipper » Wed Mar 31, 2004 2:14 am

Well you two, it's nice to keep in contact. It's also nice to know people who are very well informed about this wonderful :evil: health problem we share. Nadia, I am very glad you were able to quit work and I truly hope that you can find the meds that will finally work for you. So far, I haven't had problems with the weaning project from Wellbutrin. But it's early days yet. I had a run-in with a cow and gate 6 weeks ago and have a torn rotator cuff. It hurts like thunder but I really have to be careful what I take for the pain. So many OTC meds just send me over the edge with the RLS. I go to the doctor Thurs to see what I should do (surgery?) My RLS is not that bad yet but it really scares me that it may be getting worse as time goes by. I have to work, my husband is disabled and my work has paid insurance. I am hoping to take early retirement but that is still 7 years off. I have been trying to slow down but it is very hard to do. Anyway, guys, thanks for being here. New friends are great. :D
My real name is Kathy but I am a Wizard of Oz nut and my Grandma's name was Ruby. Anyway, sleep well!!

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

What is in a name?

Postby jumpyowl » Thu Apr 01, 2004 5:18 pm

Kathy is O.K. considering that my older daughter's name is Kathy and she is finally pregnant! :D It is finally time for me to become a granddad having had four children. But I digress.

Well, Rubbyslippers you are in luck, if you can call it that because the opioids happen to be not only good for pain but also for RLS! Hopefully your doctor is cooperative. Just make sure that first you take the pain medications (because dopamine agonists block the effect of opioids (but not the other way around!) and later the dopamine agonists if any. [ If I sound knowledgable I got it all from the Medical Bulletin right here on this good ole' web site] :)

There are two major groups applicable; morphine and codein (derivatives):

For you it would be easier to get the latter. Such as hydrocodone (Lortab or Vicodan) i.e. oxycodone (Percodan or Percocet), or Propoxyphene (Darvon, or Darvocet).

I made an appointment with my doctor tomorrow and we shall see how it goes. I am preparing myself and actually both you and Nadia helped a great deal. I want to be able to spot it right away if he is brushing me off or B.S.-ing me. :roll:

JumpyOwl
Jumpy Owl

User avatar
Rubyslipper
Posts: 992
Joined: Wed Mar 24, 2004 2:53 am
Location: Missouri

Postby Rubyslipper » Fri Apr 02, 2004 1:25 am

Let us know what the doc says. My doc is taking a wait and see attitude on the shoulder. He gave me two cortisone shots and some exercises, said to come back in a month. Anyway, walk in to the doctor's with a good attitude that says, I have a problem, what can we do about it?! If he doesn't want to work with you, go to someone else. These sites are good so that you can take info with you and don't have to depend just on what the doctor says. Good luck!!!

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

First visit to the Gate Keeper

Postby jumpyowl » Sat Apr 03, 2004 12:55 am

Hello, everyone!

My doctor is in his late fifties, Dr. C., an internist, and has an advanced degree in pharmacy or pharmacology. Lately I talked him into my getting off anihypertensive medication which I have been on for over twenty years, probably unncecessarily.

I did some research prior to my visit, plus I was equipped with the advice of Rubyslipper and Nadia.

There was a new nurse, in her early fifties no white coat, :wink: still my pressure was up 160/90 and my pulse 100. She commented on that but I told her I was excited, she said I can see that. She weaseled my symptoms out of me but I told her I want the doctor figure out what I have, so I am not going to reveal my suspicions. I also had the names of three doctors in a nearby larger town (whom I obtained from this web site). I also printed out the Medical Bulletin and high lighted the important parts and also made and typed up some notes. I was ready!

Dr. C. came in. He is a low key guy. First I asked him if I can be candid with him because I have the feeling he thinks I am assuming too much prerogative in patient care. He looked puzzled. I said his nurse Susan certainly hated my guts. Then his face cleared up and said: "Do not worry, Susan is long gone."

That out of the way, I described my symptoms. He asked about the tingling ant-like sensation. I told him there was considerable discomfort, mostly in the knees. (He already sent me to the orthopedic surgeon with that). Then I said " it comes on when the limb is at rest and goes away with movement." He looked pensive. "Nocturnal phenomenon, but if I drive on the interstate for long periods of time it certainly will come on in my right leg - cruise control helps." (Come on man, how many hints I should give you? - I thought, OK one more!) " Hydrocodone helps!"

His face cleared. "You know, I have another patient like that!"

Restless leg syndrome! we both said it. I showed him the names of the three docs in Tyler, TX , he happened to know all of them. I asked him whether he want to tackle this, at least initially. he was quite willing.

He said, I will write you a script for Hydrocodone that is the cheapest. I said I hope the one with at least the 7.5 mg of codein derivative in it. Of course not, " let us start with 5.0 mg/500 mg. Then we will see if we need a sleep lab study," etc.

I asked him, whether "theoretically a dopamine agonist would be better since it attacks the problem and not the symptom." he looked at me sadly, and said quietly: "You know this is not curable." That was not my point but I let it slide. Then he said visibly relieved: "I shall see you in two weeks!" and walked out.

I must not be an easy patient but I am glad we are on the same team!

Sorry for going into so much detail but I guess everyone had their bouts with white coats and sharing them may serve a useful purpose, if nothing else letting steam off.

BTW, my vital signs at home were somewhat better: 138/67 pulse 78!

Cheers!

JumpyOwl
Last edited by jumpyowl on Sat Apr 03, 2004 7:02 pm, edited 1 time in total.
Jumpy Owl

Eric1056
Posts: 3
Joined: Sat Apr 03, 2004 6:44 am

I'm New here but I'm not getting help from Doctors!!

Postby Eric1056 » Sat Apr 03, 2004 7:25 am

Hi Everyone, I'm new here but have been suffering with this disorder for at least 10 yrs. As a child I had growing pains in my legs off and on thru most of my childhood yrs. Then all symtoms disappeared for 20 yrs. Now, I'm 47 and can't sleep without taking some Benedryl 300mgs and 100mgs over the counter sleeping pills. I get these leg cramp like feelings and wake-up and go back to sleep then they reappear and I'm awake again and its an endless cycle. I started taking a suppliment called MSM(500mgs) and Magnesium (250mgs)( some help) and potassium 200mgs and Aleve (2) tablets, at times I have to take a valium or two (10 mgs each). My doctor doesn't seem to have any idea of what this disorder is all about; I found this web-site by reading some MSN health article that mentioned this disorder.
All these Meds work most days but never always 100%. I'm on my feet all the time at work on hard floors and moving all the time, when I sit I get the feeling that I need to move my legs. So I stand-up and the feeling disappears, I sit down and they're back. I've have arthritis in my knees and ankles. I take Vioxx(25mg) and Allegra for a non-specific allergy. After reading alot here, I feel relieved to find out I'm not nuts. Does anyone know if any of these meds or suppliments are helpful or unhelpful or even worsening the symtoms? Is there any medication that relieves these symtoms or is it all just a shot into the dark? Any information at this point would be helpful and I'm going to find out if my insurance plan has any of the two doctors listed here, that I can change my general health provider to. Thanks to everyone for listening and for any info. Eric.
May the Peace of G_d be with you always.

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

What not to take for sleep!

Postby jumpyowl » Sat Apr 03, 2004 10:02 am

Hello, Eric:

I think you are right in suspecting that your health care giver is not up to steam on RLS. :( He/she should have warned you that most over-the-counter sleep aids contain or consists of antihistamines, including H-1 antihistamines such as Benadryl. And as such they make you and other RLS patients feel worse. :roll:

Also decongestants and all types of cold medication may or even will exacerbate the symptom of restlessness. So they are not much help as sleep aid, especially since the drowsiness they induce is only a side effect.

Other drugs you have to watch out for because they will probably make your symptoms worse are:

most antidepressants (an exception is Wellbutrin/bupropion)

as I mentioned; antihistamines

antipsychotics (e.g. phenergan)

in general: dopamine antagonists, calcium channel blockers, anti-emetic medications (compazine, thorazine).

Anything effective, you need a prescription for. The least expensive is the opioid hydrocodone (less than $10 for a month's supply). It is quite useful especially if your symptoms include discomfort.

First of all, you need a doctor who knows something about RLS or at least is willing to skim through the 32 page long Medical Bulletin (found on this Web site).

Good Luck and Happy Dreams!

JumpyOwl

P.S. I almost forgot. If you are married you need an understanding and sympathetic wife as well :)
Jumpy Owl

User avatar
Rubyslipper
Posts: 992
Joined: Wed Mar 24, 2004 2:53 am
Location: Missouri

Postby Rubyslipper » Sat Apr 03, 2004 1:59 pm

Eric, My new friend Mr. Owl has it right. For most of us, medications like Benedryl cause more harm than good. Your best bet is to get with a good doctor (and if the first or second or more aren't good, find one who is) It has taken me 4 times to get with a doctor who knows what she is talking about and she is a GP not a specialist. Jumpyowl has taken the right course in knowing your info before you go in. If a doctor can't take a patient helping with his own care, he isn't worth a lot. Even with a goo doctor, you will usually find out that you are your own guinea pig. It's a trial and error thing. What works for me may not work for you. That's what makes RLS such a nuisance, besides the symptoms. Medication is not cut and dried and neither is diagnosis. This is a great site for info. check out the other topics here too. Let us know how you get along. Please don't put off going to the doctor.

Eric1056
Posts: 3
Joined: Sat Apr 03, 2004 6:44 am

Thanks For the Feedback!1

Postby Eric1056 » Sun Apr 04, 2004 12:10 am

Hi Again,
Just wanted to thank you for the feedback. Sometimes I felt as though I had no one to talk to about this disorder. It's a good feeling to find others with a simular problem that can offer some info on this disorder.

I'll take the advise an try to find a Physician who knows something about this and is willing to help relieve some of the discomfort and anguish.

I see in the data base there are two doctors in my area that are listed and will generiously share any info with all for the betterment of everyone here.

G-d Bless,
Eric
May the Peace of G_d be with you always.


Return to “Just Joined?”

Who is online

Users browsing this forum: No registered users and 1 guest