RLS LIFE: Drugs, Side Effects & Everything Else

[jumpyowl]

I am truly glad that now you are communicating with your Mum. As you get older the more you will appreciate it!!!

I lost mine when she was my (present) age 23 years ago and I still wish I could discuss things with her. Living 6,000 miles apart between 1956 and 1982 did not help things either

I am so bad on abbreviations but I just have to ask you what you mean by ME? I used to think it was the accusative of "I" but now I think it is a disease. And while you are at it, what is: D&M?? I am darn so ignorant especially when doped up on hydrocodone but willing to learn!

More later! ((((( ))))) [ I like the hug part]

[sardsy75]

Hey Jumpy

I am truly glad that now you are communicating with your Mum. As you get older the more you will appreciate it!!!

So am I!! Mum and I are so alike in so many ways that it's usually been impossible to hold a conversation that doesn't dissolve into an argument about one thing or another We all (Dad included!) breathed a sigh of relief the day I moved out of home (7 years ago!); but I have stayed close to home, only a few kilometres away.

I am so bad on abbreviations but I just have to ask you what you mean by ME? I used to think it was the accusative of "I" but now I think it is a disease. And while you are at it, what is: D&M?? I am darn so ignorant especially when doped up on hydrocodone but willing to learn!

More later! ((((( ))))) [ I like the hug part]

CFS or Chronic Fatigue Syndrome (or "yuppie flu" as some people even have the hide to call it ) is also known as ME or Myalgic Encephalomyelitis ... which I think sounds much more exciting and mysterious

Good ol' D&M's are better known as "Deep and Meaningfuls".

Considering how much I have learnt from you in the past couple of months I would hardly class you as ignorant...far from it in fact...I'd blame the drugs!! My memory used to be sharp as a pin, but now it's quite the opposite

And there's always plenty of ((((((hugs)))))) available - there's nothing like a great big hug to cheer you up ... even if it is a "cyber" hug!

Take care of you!

[sardsy75]

Ack!! If it doesnt rain....it pours!!

Hubby was kind enough to sit with me at the Emergency Dept. for three hours tonight

Why

When I was first prescribed the Endep/Elavil, Dr W (my new Neuro) spent a loooong time going over what the drug contained, what it was prescribed to do, and what the side effects could be. The three main side effects he listed were: problems urinating, problems with the bowels & drowsiness (kewl mix huh!?!?).

Well, i've copped all three and as a result of the urination problems did not put "two and two" together when a very annoying constant lower back ache set in last monday (yup, a week ago!). Monday was also the day the mother of all headcolds hit me

By this afternoon my urine was full of blood and the "passing razorblades" feeling each time was not so enjoyable! Despite already having UTI anti-biotics on hand (from what i had hoped was my last bout 18mths ago!), the infection was far too advanced and well into my kidneys. So, after some advice from a friend of mine who is a nurse, we set off for the ER.

I was lucky in that the Dr on call for my GP was very, very nice and saw the funny side of my compounding problems over the past week. Now i'm on some mega-strength anti-biotics (Bactrim DS - 800/160mg sulfamethoxazole/trimethoprim) which should get my kidneys back on track (and maybe help boot this cold out of my system too - one can only hope!) I was actually prepared for an overnight stay and intravenous anti-biotics, but the Dr is confident that the pills will do the trick within 24hrs.

So, one heck of a wake-up call later....i will be monitoring my body's "signals" a little more carefully from now on. It pays to know what side-effects your drugs might be causing; more importantly, it pays to listen to your body in case there's something else going on underneath that the side-effects are masking!

Take care all

Nadia

[jumpyowl]

All this sounds most unpleasant! Urinary retention and a bad urinary tract infection spreading into the kidneys!!

I wonder how one would protect against that? Drink a lot of water and measure the out- put versus the intake taking into account the perspiration (it is cool down under is it not?)? Also with the head-cold! It seems that your overall immune resistance has been lowered...

I am glad that the doc saw the funny side I bet it was not that funny for you. But sympathy takes many forms...

Now what is next? A couple of good things, your fighting spirit is not broken and your husband stands besides you. GOOD! But Gosh, your poor abused body needs a break! Take care and let us know how you are recuperating.

One cannot help but think of all those little mycoplasma fragments dormant in various parts of the body. But perhaps they are rarer in Australia (although you are "close" to New Guinea, are you not?) Just kidding!!!!!

Take care! Take care! Take care!

[sardsy75]

We live on the central Queensland coast (about 40kms inland from the nearest beach). We have very long hot humid summers and short amazingly cold and often humid winters. Winter arrived with a "BANG" this week and the mornings have been down to 4 - 6 celcius; which makes me miserable with my Reynards!

So living in a sub-tropical climate means water, water and more water is the order of the day for me every day, usually 2-3 litres.

Measuring input vs output is a good idea Jumpy; thanks for the prod!

My overall immune system has definitely copped a beating with the head cold and then my dang kidneys going on strike ... its nearly two weeks later and i'm still sniffling & coughing all over the place It would be nice to give it some time off The Bactrim, however has cleared up my kidney & UTI problem and i'm not experiencing any problems in that "department", but am keeping a much closer eye on things.

However, I refuse to let any of this get the better of me and despite my most recent hurdles, am feeling more energetic and happy than I have in a loooooooong time.

I've been on 30mg Endep/Elavil for a week now, and like the first two doses, the sleep improves for the first 3-4 nites and then goes backwards again. I am scheduled to ring Dr W this week to give him an update and will be mentioning this, along with my other recent adventures to him and see what he says. Will keep you posted on the outcome!

I have also gone from very mild RLS symptoms up one notch to mild symptoms. I'm not too worried about it, but will be mentioning it to Dr W. I am thinking that it is more than likely a result of Winter arriving.

Well, that's it from me for now. It's a beautiful clear winter's day here today....clear blue skies, lots of sunshine, mega-cold blustery winds and a temp of around 19 celcius.

Take care all

Lotsa (((((((hugs)))))) for everyone

Nadia

[sardsy75]

Well, I give up ... i dunno what's going on with this here dang body of mine!! Murphy's Law Methinks

I've been on 30mg Endep/Elavil per night for three weeks now.

I have been putting off ringing my new Neuro with an "update", and now i'm kinda glad that I have.

For the past (lets see, what day is it....oh yes, Monday!) four days, my RLS has returned and, as I sit and type this, on my "RLS Scale of 0-6 (0 = no symptoms; 6 = get me a chainsaw!), i'd rate it at a 3-4 which is NOT a good sign!!! I have the "gotta moves/wriggles" in the hamstring AND thigh areas of BOTH legs, as well as BOTH calf areas. It is bringing back BAD BAD memories, and is scary!!

My REM sleep has improved (i.e. gone from averaging 1/2hr per night to averaging 3-4hr per night), but it's not great. I know Dr W said that it would take up to six months to see any improvement, but with my legs back "in the swing of things" my positive outlook ain't lookin so positive Hubby has been trying his best to get me back into being a "normal bedtime person" (i.e. bed at 9-9.30pm instead of 12-2am), but as y'all would know, this kind of habit is tough to break!!!

So, from an ME/CFS perspective, I'm doing pretty well. The energy levels have improved out of sight ... BUT ... I am very careful of what activities I undertake each day so as to not overdoit.

On the flip-side, from the RLS perspective, the downhill slide i'm on, which is getting progressively quicker, ain't so great.

So, first thing tomorrow morning i'm getting on the phone to Dr W to give him an update and an "SOS" on what to do about my RLS.

One step at a time, one day at a time and stay positive .... applies to me right now!!

Big (((((HUGS))))) to All, and Sweet Dreams to those who manage to catch some ZZZZ's!

Take care
Nadia

[jumpyowl]

Hi, Nadia:

My sincere sympathies!

I will just share my thoughts with you. I hope I will not be too long. From the very beginning, ever since you came back from the capital (?) after the visit with Dr. W there was one thing that bothered me about his diagnosis. I kept it to myself because I did not want to rain on your parade.

And this was the assumption that you RLS is secondary to CFS. Why could you not have both? And your family history is strongly indicative (your grandfather and on) of RLS. And almost everything we know about RLS indicates or at least suggests that it is just IS. Not the evolvement from and other condition, just as it does not evolve into anything else such as Parkinsons.

Now if we reject the secondary hypothesis, then what you have is being treated for RLS with Elavil only! Or put it in another way, treat only CFS which is again incurable and hoping that RLS will just go away.

One could even retain the secondary hypothesis and wonder that if the primary cause can only be ameliorated in 6-8 months, This means that RLS exists without treatment for that long of a time. It is still does not sound like such a hot idea.

BTW are you sure that you are improving or even want to improve your REM stage of sleep? It is important to dream to be sure but I thought that for exhaustion and muscle and nerve repair one needs delta phase sleep, when the pituitary gland is active in adults. Can you enlighten me on that?

I am just not as tough as you because even if paresthesia comes back just one evening (like yesterday), I will do something to stop it. Of course, having several types of medication at hand makes this possible. I can certainly stop paresthesia by

a/ pain medication b/ tranquilizers c/dopamine agonist d/ anticonvulsive e/ having sex

and a sleeping draught. Or a combination of 2 or 3 of these. Whatever it takes! My aim is to minimize the side effects. Interestingly, the least side effects are caused by pain medication, then tranquilizers, dopamine agonist, and anticonvulsive - in the order of increasing side effect.

So the one that seems to me the least harmful (assuming no addiction) is the same as everybody is scared of, just because some low lives abuse them, appears to be the best. Certainly my daughter with severe fibromyalgia can make her life tolerable or even enjoyable thanks to having a knowledgable pain doctor who is not deceived by propaganda created by the war on drugs politicians (which we are losing anyway).

I admit that it is safer for doctors not to prescribe pain killers again thanks to the strong prejudices of the profession. Why, they even go as far as withholding painkillers from terminal cancer patients!

Well, I get off my soapbox Nadia! I just do not like to hear that you suffer needlessly trying to prove Dr. W's hypothesis.

I am almost in the same boat as you since my new doctor announced that he never writes prescription for pain medication. Luckily, he was walking out the door when he said that. I will change doctors just for that! I realized then that the sleep lab guy does not really want to help making the patients more comfortable. He just wants to use his polysomnograph to measure the improvement in PLMD. But he ignores the fact that his machine does not measure either pain or paresthesia!!!

Let me know what happens during your phone conversation with Dr. W.

Wishing that Murphy's law break down for you, muchos abrazos - many hugs ((((( )))))

[sardsy75]

Hey Jumpy

Now, where to start??

Thankyou for the hugs, much appreciated this morning! I came very close to relegating myself to the couch last night, I was wriggling so much, but stayed in bed, coz it was too COLD!!! So, I haven't slept at all, just dozed here and there for 10mins or so. When I crawled out of bed not long ago I knew things were not good - the spring in my step has gone, and i'm down to a shuffle not a good thing (and to think my Father-in-Law thought I was nuts when I asked if I could have one of his mother's walking sticks when she moved into a nursing home! )

No problemo with raining on my parade - with me, all good things usually come to an end for some reason or another, according to Murphy's Law anyway

The urge to take a "cocktail" of some sort last night was almost overwhelming, but I resisted as I wanted to see how bad things would/could get (sucker for punishment ain't I?!) I have a basket of "goodies" that would send most people running for cover I nearly went running for the Cabergoline before bed, but resisted. (If I was working full-time I would have!)

I think you're right about the REM & Delta Phase sleep my apologies ... it is the Delta Phase sleep that I'm supposed to be getting improvement on, which is what should stop my RLS.

Now, for the Important Stuff!

I put in an "SOS" call 7.58am this morning and as it turns out Dr W is here in sunny Rockvegas today, so I left the SOS with "Sister" at the outpatients clinic at the hospital. Dr W rang me at 8.25am - now THAT is Service!!! I wasn't expecting a callback until at least later on this afternoon, or even tomorrow!

I took him through what has happend since I initally saw him:

10mg/night for 10 days
RLS symptoms disappeared completely and delta phase sleep lept from 1/2hr/night to about 4-5hrs/night; but this slowly went backwards after about the 5-6 day mark. Energy levels went from zilch to "my gawd where's all this energy come from" within 5 days.

20mg/night for 10 days
Still no RLS symptoms and delta phase sleep went back up to 4-5hrs a night and got to as much as 7hrs; but again, slowly went backwards after the 5-6 day mark. Energy levels still at the "oh my gawd"

30mg/night for 21days
Everything going hunky dory for the first two weeks, but the beginning of the third week (last week) Everything goes backwards, both sleep and legs until, as you know, last night.

He chastised me for not ringing him last week (which I took on the chin!) and straight away said that ME/CFS (like RLS) is an individual thing and that 30mg Endep/Elavil was obviously not a high enough dosage for me.

He has some ME/CFS patients on 10mg Endep/Elavil, and others on 80mg, so like with RLS, its a game of trial and error to find the right dosage. So, I'm to up the dose to 40mg as of tonight - and keep him in the loop. He asked when my next "visit" with him would be and when I said September, he sounded a lil "bummed" - I don't think he quite realises how popular he is now that word about him is spreading around town like wildfire!

I am inclined to agree with him on this one as my RLS symptoms completely disappeared when I first started on the Endep, and only reappeared when my "system" had gotten too used to the dosage and my sleeping patterns went haywire. As soon as I said that my sleep had been going downhill for a week until I hadn't slept at all last night he latched on to it straight away (and got another round of chastising!).

I also filled him in on my UTI/kidney problem from a couple of weeks ago, and he took that on board, and made me promise to call him if it happens again now that we're increasing the dosage.

So, once again, it's "guinea pig" time yay!!

Well, that's all from me for now ... I've got a date with my GP in an hour ... he has no idea what's been going on, and is about to get his own update (and I get a new repeat script for Endep at the same time!)

Take care all
Nadia

[jumpyowl]

I appreciate your long and informative note. It taught me a lot. I am also glad that the hugs helped!

I hope your local doc will be supportive as he usually is.

[Sole]

Hey Jumpy

Now, where to start??

Thankyou for the hugs, much appreciated this morning! I came very close to relegating myself to the couch last night, I was wriggling so much, but stayed in bed, coz it was too COLD!!! So, I haven't slept at all, just dozed here and there for 10mins or so. When I crawled out of bed not long ago I knew things were not good - the spring in my step has gone, and i'm down to a shuffle not a good thing (and to think my Father-in-Law thought I was nuts when I asked if I could have one of his mother's walking sticks when she moved into a nursing home! )

No problemo with raining on my parade - with me, all good things usually come to an end for some reason or another, according to Murphy's Law anyway

The urge to take a "cocktail" of some sort last night was almost overwhelming, but I resisted as I wanted to see how bad things would/could get (sucker for punishment ain't I?!) I have a basket of "goodies" that would send most people running for cover I nearly went running for the Cabergoline before bed, but resisted. (If I was working full-time I would have!)

I think you're right about the REM & Delta Phase sleep my apologies ... it is the Delta Phase sleep that I'm supposed to be getting improvement on, which is what should stop my RLS.

Now, for the Important Stuff!

I put in an "SOS" call 7.58am this morning and as it turns out Dr W is here in sunny Rockvegas today, so I left the SOS with "Sister" at the outpatients clinic at the hospital. Dr W rang me at 8.25am - now THAT is Service!!! I wasn't expecting a callback until at least later on this afternoon, or even tomorrow!

I took him through what has happend since I initally saw him:

10mg/night for 10 days
RLS symptoms disappeared completely and delta phase sleep lept from 1/2hr/night to about 4-5hrs/night; but this slowly went backwards after about the 5-6 day mark. Energy levels went from zilch to "my gawd where's all this energy come from" within 5 days.

20mg/night for 10 days
Still no RLS symptoms and delta phase sleep went back up to 4-5hrs a night and got to as much as 7hrs; but again, slowly went backwards after the 5-6 day mark. Energy levels still at the "oh my gawd"

30mg/night for 21days
Everything going hunky dory for the first two weeks, but the beginning of the third week (last week) Everything goes backwards, both sleep and legs until, as you know, last night.

He chastised me for not ringing him last week (which I took on the chin!) and straight away said that ME/CFS (like RLS) is an individual thing and that 30mg Endep/Elavil was obviously not a high enough dosage for me.

He has some ME/CFS patients on 10mg Endep/Elavil, and others on 80mg, so like with RLS, its a game of trial and error to find the right dosage. So, I'm to up the dose to 40mg as of tonight - and keep him in the loop. He asked when my next "visit" with him would be and when I said September, he sounded a lil "bummed" - I don't think he quite realises how popular he is now that word about him is spreading around town like wildfire!

I am inclined to agree with him on this one as my RLS symptoms completely disappeared when I first started on the Endep, and only reappeared when my "system" had gotten too used to the dosage and my sleeping patterns went haywire. As soon as I said that my sleep had been going downhill for a week until I hadn't slept at all last night he latched on to it straight away (and got another round of chastising!).

I also filled him in on my UTI/kidney problem from a couple of weeks ago, and he took that on board, and made me promise to call him if it happens again now that we're increasing the dosage.

So, once again, it's "guinea pig" time yay!!

Well, that's all from me for now ... I've got a date with my GP in an hour ... he has no idea what's been going on, and is about to get his own update (and I get a new repeat script for Endep at the same time!)

Take care all
Nadia

Hi Nadia,

We haven't met but I've read many of your very informative posts. You've certainly been on the RLS rollercoaster. I hope you don't mind me jumping in but I have a question. You say you're taking Elavil. From what Jumpy says and from everything I"ve read, Elavil exhaserbates RLS symptoms in most patients. Is it working for YOU? I was prescribed it a couple of weeks ago and at the same time being weened off klonopin and here I am, It's midnight and no sign of sleep in sight. I know everyone is different but I'm wondering if you know why it's working for you? Sorry for interrupting your thread.

sole

[sardsy75]

Hi Sole

Apologies for not replying here last night ... I literally "crashed" 3 hours earlier than I usually do! Think I was a little worn out from my week of going backwards.

Anyone/everyone is most welcome to fire questions/queries in my direction; I am more than happy to share my experiences and offer advice (and cyber hugs too!).

All my life I have usually been the "exception to the rule" for one thing or another, and when it comes to Tricyclic Anti-Depressants, it didn't stop there!

When I resigned from full-time work back in Feb this year, I had already pleaded with my first Neuro for help with my sleep, and instead of help, scored the lowest dosage of Temazepam he could possibly think of, which did stuff all for my problem.

So, I turned to my GP, Dr K. After giving me a major grilling about my sleep habits and sleep hygeine he was satisfied that I was doing everything right and that my problem was that I was caught in a viscious circle of
1. getting my legs to "stop"
2. getting the rest of my body to relax
3. getting my head clear
4. getting my legs to "stop" again
5. and so on

He told me that I didn't need a sleeping tablet; but instead needed something to "switch my brain off" so I could get to sleep. (BTW Dr W gave Dr K major "brownie points" for starting down the right track!)

Dr K prescibed Sinequan (Doxepin), which is from the family of Tricyclic Anti-D's. I had already read about the possible negative effect this could have on my RLS, but considering he had spent nearly 20mins going through the loooong list of alternative Anti-D's, I agreed to give it a go.

After three weeks, I was up to 75mg/night, and it was having no adverse effects on my RLS, so we concluded, that yes, yet again, I was an exception to the rule However, I did not make it very public on many of the RLS forums I'm a part of as some of the beratings and jealousy can be quite viscious.

When I met Dr W in May, we went through the same rigamorole. As I was "jumping for joy" about getting off all the other drugs he was saying, "now i'm going to put you on a Tricyclic Anti-Depressant called Endep (Elavil)" and I stopped mid-jump. We discussed the problems that Tricyclics can cause RLS patients, but Dr W was convinced that RLS was not my main problem and had only "kicked in" (pardon the pun!) because I was so deprived of delta-phase sleep (the time when the body repairs & relaxes the muscles). So, once again, I agreed to give it a go (I was quite used to being my own "guinea pig" by then anyway )

As you saw from my post above, my RLS symptoms literally "disappeared" within a couple of days, and my delta-phase sleep had gone from non-existant to a few hours at a time.

Well, that's pretty much it in a nutshell! I hope I've answered your query.

As I said in my other post to you ... if the Endep/Elavil is only making things worse for you, do not continue with it. It's no use going through more hell than you already have to!

Take care
Nadia

[sardsy75]

I made Dr K's day yesterday ... when he walked into the office, there on his desk was a big box of chocolates I'd bought for him!

He asked what they were for, and I said it was to make up for not getting in to see him sooner to give him an update on how my trip to see Dr W went. He was chuffed

I was only there for an Endep repeat script, which should've taken 5 minutes, but he sat back and we ended up chatting away for a good 20 minutes! I think he was grateful for the "time out".

I filled him in on my trip to Dr W, and the more I told him, the more he agreed with Dr W's diagnosis. He was more than happy when I confirmed that I was OFF ALL the nasty drugs, and we had a good chuckle over my "experiences" with Neurontin. (BTW Jumpy, that offer still stands )

He was pretty excited when I told him about my newfound energy levels and commented on how much "healthier" I was looking and sounding

So, all in all, he's more than happy with how i'm progressing and doesn't want to see me unless I've broken a leg or something LOL.

I bumped up the dosage to 40mg last night, and ended up crashing very early! This morning, my legs are down to a 1-2 on my RLS Scale, which is a good sign, so with a bit of luck they'll be back to "normal" tomorrow or Friday.

Well, i'm off for a HOT shower! Tis a rather cold winter morning here in "Sunny Queensland", and my fingers, toes, nose and ears are like icebergs (gotta luv Reynards!)

Take care all
Nadia

[jumpyowl]

Thanks for the report, Nadia. She wrote:

Posted: Tue Jul 06, 2004 5:31 pm Post subject: Vist with my "Gatekeeper" Dr K

--------------------------------------------------------------------------------

I made Dr K's day yesterday ... when he walked into the office, there on his desk was a big box of chocolates I'd bought for him!

He asked what they were for, and I said it was to make up for not getting in to see him sooner to give him an update on how my trip to see Dr W went. He was chuffed

I was only there for an Endep repeat script, which should've taken 5 minutes, but he sat back and we ended up chatting away for a good 20 minutes! I think he was grateful for the "time out".

I filled him in on my trip to Dr W, and the more I told him, the more he agreed with Dr W's diagnosis. He was more than happy when I confirmed that I was OFF ALL the nasty drugs, and we had a good chuckle over my "experiences" with Neurontin. (BTW Jumpy, that offer still stands )

Bribing the good ole doc, heh? I have got to learn Australianese to take full benefit of your post. What is "chuffed"?

Well, Nadia! If you read my update on Mirapex (and NT) you will have the answer to your offer. I also have at least one full vial of NT. But if I would ever want to experiment with anticonvulsives I would probably try Topamax first! I certainly did not enjoy the vertigo effect. Not even mentioning the puzzling ORTHOSTATIC HYPERTENSION.

Your post is extremely interesting because it teaches me that different people with possibly different or more complex affliction react to certain drugs differently. (It is a popular saying but it is not strictly true that everybody is different - that surely would drive doctors crazy).

I admit I have been down on Elavil/Endep due to the experience of some peope I have known personally (which BTW includes my wife and daughter). I have never taken it.

I am glad that your family physician thought that you looked better. (Just to be sure, he did have his glasses on, did he not? ). Seriously, even if not, your doc received a bunch of audio input and doctors can tell a lot, especially during a 20 minute relaxing conversation.

Here is to hope that you will be even better by Friday. Let us know, will you?

[Sole]

Hi Sole

Apologies for not replying here last night ... I literally "crashed" 3 hours earlier than I usually do! Think I was a little worn out from my week of going backwards.

Anyone/everyone is most welcome to fire questions/queries in my direction; I am more than happy to share my experiences and offer advice (and cyber hugs too!).

All my life I have usually been the "exception to the rule" for one thing or another, and when it comes to Tricyclic Anti-Depressants, it didn't stop there!

When I resigned from full-time work back in Feb this year, I had already pleaded with my first Neuro for help with my sleep, and instead of help, scored the lowest dosage of Temazepam he could possibly think of, which did stuff all for my problem.

So, I turned to my GP, Dr K. After giving me a major grilling about my sleep habits and sleep hygeine he was satisfied that I was doing everything right and that my problem was that I was caught in a viscious circle of
1. getting my legs to "stop"
2. getting the rest of my body to relax
3. getting my head clear
4. getting my legs to "stop" again
5. and so on

He told me that I didn't need a sleeping tablet; but instead needed something to "switch my brain off" so I could get to sleep. (BTW Dr W gave Dr K major "brownie points" for starting down the right track!)

Dr K prescibed Sinequan (Doxepin), which is from the family of Tricyclic Anti-D's. I had already read about the possible negative effect this could have on my RLS, but considering he had spent nearly 20mins going through the loooong list of alternative Anti-D's, I agreed to give it a go.

After three weeks, I was up to 75mg/night, and it was having no adverse effects on my RLS, so we concluded, that yes, yet again, I was an exception to the rule However, I did not make it very public on many of the RLS forums I'm a part of as some of the beratings and jealousy can be quite viscious.

When I met Dr W in May, we went through the same rigamorole. As I was "jumping for joy" about getting off all the other drugs he was saying, "now i'm going to put you on a Tricyclic Anti-Depressant called Endep (Elavil)" and I stopped mid-jump. We discussed the problems that Tricyclics can cause RLS patients, but Dr W was convinced that RLS was not my main problem and had only "kicked in" (pardon the pun!) because I was so deprived of delta-phase sleep (the time when the body repairs & relaxes the muscles). So, once again, I agreed to give it a go (I was quite used to being my own "guinea pig" by then anyway )

As you saw from my post above, my RLS symptoms literally "disappeared" within a couple of days, and my delta-phase sleep had gone from non-existant to a few hours at a time.

Well, that's pretty much it in a nutshell! I hope I've answered your query.

As I said in my other post to you ... if the Endep/Elavil is only making things worse for you, do not continue with it. It's no use going through more hell than you already have to!

Take care
Nadia

Nadia,

I'm glad you've found something that's helping you. Relief is such a wonderful thing isn't it? I stopped taking Elavil four nights ago. It wasn't helping. It just made me really groggy the next morning. Now I'm just taking Klonopin and that's stopped working too. It's amazing how panicked I get when I can't sleep.

Read your post below. What a nice patient you are. My dr.'s got a looooong way to go before she sees any chocolates on her desk.

Man, I hope I didn't stop taking the Elavil and Trazodone too early. I'd only been taking them for two weeks. But I didn't want to give them a chance to make my bad situation even worse. I need to find somewhere online where I can buy Percocet without a prescription. I had a few left over from the miscarriage I had last month (got them from the hospital) and they worked very well. But I only had a few so they went fast and I really doubt my Dr. will prescribe any to me.

Oh well, just gonna keep on keeping on.

sole

[sardsy75]

Bribing the good ole doc, heh? I have got to learn Australianese to take full benefit of your post. What is "chuffed"?

Time for some lessons in Aussie Slang huh? Come to think of it, I think I might be the only Aussie in this here discussion group....or are there others lurking out there???

I think i'll have to invest in some Aussie Slang Dictionaries to send to everyone for Christmas!

Chuffed = feeling surprised, yet appreciated

I've included a few links below if anyone needs a "time out" from pacing the floors to learn a bit more of our "lingo":

http://www.koalanet.com.au/australian-slang.html

http://members.ozemail.com.au/~enigman/ ... ang.html#c

http://www.australianexplorer.com/slang/

http://www.geocities.com/SouthBeach/Bre ... zslang.htm

Big (((((HUGS))))) to all
Nadia