RLS LIFE: Drugs, Side Effects & Everything Else

For everything and anything else not covered in the other RLS sections.
sardsy75
Posts: 862
Joined: Thu Mar 18, 2004 8:56 am
Location: Queensland, Australia

Murphy's Law Strikes Again

Post by sardsy75 »

Ol Murphy's been at it again :roll:

When I posted my "reply" last Monday, to our dear friend "Anon" who seems to live in a backward-revolving world, I was smack bang in the middle of a "Category 6" (i.e. GET ME A GAWDDAM CHAINSAW) RLS Attack; hence, the ever so slight sarcasm in that post :wink: and seeing that dude's post just made me see RED

However, I digress, as usual!

Everything was hunky dory up until last Sunday morning and it was while we were visiting my hubby's Grandmother that I noticed I was "fidgeting" a little more than usual (about a 1 on my RLS Scale). I decided not to worry about it at the time, but by 6pm I was at a 4 rating and on a very fast downhill slide whereby 10pm I was at the worst: rating 6 :shock:

Up until Saturday I had been on 40mg Endep/Elavil per night. So, Sunday night I automatically upped it to 50mg, and had 2 x 2000mg Valerian, plus 2 Ibuprofen/Codeine painkillers to counteract the muscle pain I was already experiencing from walking and stretching. I attempted to go to bed at around midnight, but after 10 minutes of thrashing decided to leave my hubby in peace and threw myself out and into the spare bed :(

I thrashed, stretched and shuffled my way around the spare room until about 4.30am Monday morning when I finally fell into an utterly exhausted doze; only to have hubby wake me at 6.30am as he tried to extract the discman earphones from my ears :roll: BTW, I can highly recommend Michael Connelly's latest book "The Narrows"; read it from start to finish Sunday nite/Monday morning, and then got about a quarter of the way through Gordon Kent's "Hostile Contact" :?

It's during your worst times of illness that you discover who your true friends are!

Hubby bolted out the door for work at 7am Monday morning, leaving me alone, to face what was to be a rather nasty day. At about 10.30am a friend (Mr C) who lives in the same town as me (but does not have RLS), came online in Yahoo Messenger. Within five minutes of us chatting, he could tell that I was far from being my usual "happy camper" self. BUT, instead of signing off and leaving me to my misery, he kept me "company" ALL DAY; cracking jokes, paying me out, telling funny stories about the kids in the soccer team he coaches, basically, anything to keep the smile on my face and keep me thinking positively while I was going through literal hell (again!), stretching the utter crap outta my legs to the point where I have spent three days literally unable to walk.

I couldn't thank Mr C enough on Tuesday, and his reply was "I wasn't doing anything that I didn't want to do"; he is a true friend! Mr C has been through some pretty traumatic things in his own life and at one stage on Monday he simply said "on the road to recovery, no one takes a backward step; its just that we think our steps forward are much bigger than what we are really taking." He comes out with some pure gems sometimes!

Each morning since, he has come online, and the first thing he has asked is "How are you and your legs today Nads?" and today he was happy to hear that I was back to being a "happy camper".

Jumpy, I know you have your reservations about Endep/Elavil, due to it being a tricyclic anti-d and it's effects on RLS. I too, have that same reservation unconsciously gnawing at the back of my mind now that i'm up to 50mg per day; knowing that RLS is definitely a "part" of me. I decided to give Dr W a call on Monday arvo, just to let him know that i'd gone backwards...again...and he was most concerned; however, he is still thinking that it is the right treatment, for now, as when the drug IS working, I am getting up to 6hrs deep sleep a night. Back when we met him in May, he said that this would be a loooong, slow process, and that it would probably take up to six months before we see any good results. When I was talking to Dr W on Monday he said he has some patients on 10mg, others on 200mg, it's a matter of finding the right dosage (there's that i'm my own guinea-pig thing again!). He got a smile outta me when he said, and i quote "Nadia, if I could reach through the phone and pat you on the hand to let you know it's going to be alright, i would". I replied, "I can feel you patting my hand Doc!" He is such a polar opposite to Dr S!!!!

That all probably made no sense to anyone, but I had to "let it out" somewhere LOL!

So, in summary, my week has gone something like this:

Sunday
11am - Rating 1; 6pm - Rating 4; 10pm - Rating 6
Drugs: Endep/Elavil 50mg, Valerian 2 x 2000mg, Ibuprofen/Codeine x 2
No sleep at all; dozed for two hours from 4.30am Monday - 6.30am Monday

Monday:
7.00am - 4.30pm - Rating 6
4.30pm onwards - Rating 4
Drugs: Endep 50mg, Valerian 2 x 2000mg, Ibuprofen/Codeine x 2 (every four hours)
Banished myself to the spare room again and managed to score a full 7 hours solid sleep Monday night through sheer exhaustion only

Tuesday:
All day - Rating 2-3
Drugs: Endep 50mg, Valerian 2 x 2000mg, Ibuprofen/Codeine x 2 (every four hours)
Again, banished to spare room, but tossed and turned for most of the night.
Walking: with the aid of a walking stick (managed to get out to the movies with a girlfriend to see Shrek2 and had a much needed laugh!)

Wednesday
All day - Rating 2-3
Drugs: Endep 50mg, Valerian 2 x 2000mg, Ibuprofen/Codeine x 2 (every four hours)
Again, banished to spare room, but tossed and turned for most of the night.
Walking: with the aid of a walking stick

Thursday (today)
All day - Rating 1-2
Drugs: Endep 50mg, Valerian 2 x 2000mg, Ibuprofen/Codeine x 2 (every four hours)
Once again, I am banishing myself to the spare room, where I am slowly making my way through a pile of books inbetween snatching a few zzz's here and there.
Walking: almost back to normal, with no need of assistance yay!

Well, that's pretty much been me for the past week or so. Can't wait to see what "Murphy" has in store for me next! :wink:

Until next time, take it one step at a time, one day at a time, and most importantly of all STAY POSITIVE!!! Oh, and having a few friends with "gnawable" ears don't go astray either :wink:

Big (((((HUGS))))) to all my RLS Mates and Sweet Dreams to those of you who manage to catch those sometime elusive ZZZZ's!!

Jumpy, try not to kill yourself with your experiments ok?! We kinda like having you around!

Take care of you all!
Nadia
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!!!

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

Wow, Nadia!

Post by jumpyowl »

You are a hero! I would not be that brave to suffer through such nights for several days on ends no matter how many times my doctor patted my hand! :x (I am not picking on you, I worry about you.)

To me the strangest part is ( :wink: ) that you think I am killing myself because I do things independently from my doctors, while admittedly, you are following your doc's instruction closely. If I slept that little for days on, I would already be dead! My old body could not take it. Good thing that you are young and strong!!! As a constrast I have not had paresthesia (PAR) for weeks and I sleep quite well. If occasionally I have some dull PAR, I do something to correct it (i.e. take Mirapex earlier).

Even if I am not welcome :) I am going to share with you my thoughts Nadia, because I feel it is my duty. I may not be right, but think about it a little.

First let me quote from the California page (I am sure you have seen it before):

(3) Antidepressant Medication

This class of medications should be used with caution in RLS patients. Antidepressants can worsen RLS symptoms more often than help them. As depression is a common problem, especially in patients with severe and persistent RLS problems, antidepressants are often prescribed for RLS patients. (No kiddibng]. RLS patients who are put on antidepressants and notice worsening of their symptoms should inform their physician of this problem immediately. (as you are doing].

There are several different classes of antidepressant medication. If a medication in one class causes problems, then a medication from another class may be of more benefit. As with most RLS medications, much trial and error must take place to see if these medications are helping. Due to the long list of antidepressant medications, we will only list them in their appropriate categories.

There are no specific guidelines for using antidepressants in RLS, and generally they are used for RLS in the same doses as for depression. The oldest antidepressants, the tricyclics, (such as Elavil] tend to worsen RLS more than they help. There are two antidepressant drugs, Wellbutrin and Remeron which have more dopamine like effects, so may have theoretically have more positive actions on RLS. This however, has not been looked at systematically yet.
.

Tricyclics & Combinations
Ascendin (Amoxepine)
Elavil (Amitriptyline)
Etrafon (Perphenazine and Amitriptyline)
Limbitrol (Chlordiazepoxide and Amitriptyline)
Norpramin (Desipramine)
Pamelor (Nortriptyline)
Sinequan (Doxepin)
Surmontil (Trimipramine)
Tofranil (Imipramine)
Triavil (Perphenazine and Amitriptyline)
Vivactil (Protriptyline)





What strikes me as odd about your doc that he sympathizes with your miseries but does not budge on his rock-solid stand point that you do not really have RLS, or even if you have it secondary to CFS, you should not have to treat it.

I am still saying that even IF he is right (and he may not be) six months is too long to go without sleep and being in misery just to prove a point. And it does not even sound right to me. Six months is too long to find out whether any medication is working or not. And Murphy's law does not seem to have anything to do with it, although I am also puzzled why you have this short vacations in between the flare-ups.

AT THE LEAST you should have something at hand that takes care of you duriing flare ups!! In the past what was the stuff that help you the most??? You do not have to switch your medication during those times just supplement it.

Okay, Nadia, let me have it with both barrels.

With concern,
Last edited by jumpyowl on Thu Jul 15, 2004 1:49 pm, edited 3 times in total.
Jumpy Owl

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

Nadia

Post by jan3213 »

I really admire you, Nadia. You have such a good attitude. But, you are so young (at least I've gotten that impression from your posts) and you have such a bad case of RLS already! I know what you mean about the chainsaw--I have thought it was lucky I didn't have a machine gun handy before after not sleeping for several nights in a row (weeks, in fact). Anyway, I wish I could help you--I KNOW you have a doctor, but as my neuro told me, there are meds out there that can help, you've just got to find the right combo!! I really feel frustrated for you!! I REALLY wish I could fly you here to St. Louis to see him! I'm not trying to butt in, honestly! I just REALLY care about what you're going through!!! It sounds so much like what I experienced a few years ago and it's HORRIBLE!!!!!! Sleep deprivation can do so much harm to your body--you're such a smart lady, I KNOW I'm not telling you anything you don't know! Just know that I REALLY CARE and I'm so frustrated for you. I know that doesn't do you any good, but I just had to tell you.

Jan

Sole
Posts: 212
Joined: Sat Jul 03, 2004 9:25 pm
Location: Oregon

Post by Sole »

Nadia,

I echo the sentiments of Jumpy and Jan. You're such a trooper to be able to bounce back from your episodes. I know how horrible they are. Night after night with little to no relief. Can make you feel helpless and hopeless real quick. Not to mention, drive you absolutely insane.

I'm with Jumpy on this one. It's great that you've established a good report with your Dr. but come on, Sister, six months is not a trial run. It's torture. Regardless, if the RLS is secondary or not, you need treatment for it NOW. Sure, no medicine is going to work all the time but if the Elavil were really working, it would not quit working so fast and leave you with these furious episodes. But that's just my opinion. Ultimately, you're your best judge. :-)

So did you like Shrek 2? I haven't seen yet but we plan to take the kids. Let us know how you're doing tomorrow.....or today...whatever it is over there. :lol:

You're truly a great example for all of us.
Sole

"If you ever drop your keys into a river of molten lava, let'em go, because, man, they're gone."

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

Re: Wow, Nadia!

Post by sardsy75 »

jumpyowl wrote:You are a hero! I would not be that brave to suffer through such nights for several days on ends no matter how many times my doctor patted my hand! :x (I am not picking on you, I worry about you.)

What strikes me as odd about your doc that he sympathizes with your miseries but does not budge on his rock-solid stand point that you do not really have RLS, or even if you have it secondary to CFS, you should not have to treat it.

I am still saying that even IF he is right (and he may not be) six months is too long to go without sleep and being in misery just to prove a point. And it does not even sound right to me. Six months is too long to find out whether any medication is working or not. And Murphy's law does not seem to have anything to do with it, although I am also puzzled why you have this short vacations in between the flare-ups.

AT THE LEAST you should have something at hand that takes care of you duriing flare ups!! In the past what was the stuff that help you the most??? You do not have to switch your medication during those times just supplement it.

Okay, Nadia, let me have it with both barrels.

With concern,


Jumpy :)

First up, I'm far from letting you have it with both barrels.

It's now 7.15am Friday and I have just crawled out of bed after another night of interrupted sleep. Last nights cocktail included: 50mg Endep/Elavil, 2 x 2000mg Valerian, 2 x Ibuprofen/Codeine and 2 x Paracetamol/Codeine. I dropped off to sleep at about 11pm. However I woke three times during the night.

This morning, my legs are at what I would call rating 2, which really, is not a good sign. In theory, when I went up to 50mg I should've been back to a rating 0 within 48hours; but i think i've stressed out about this and it's taking a little longer to get back to "normal".

Yes, the short vacations have me puzzled too. But then again, i'm a puzzling kinda case.

So, I have a choice of two experiments:

1. Stay on the Endep/Elavil at 50mg and supplement it with something I already have a good supply of;

OR

2. Go completely off the Endep/Elavil altogether. However, I'm not going to start on something else straight away, I want everything to be clear from my system so I have some idea of what the heck my body does with no drugs at all. (Jumpy, do you know if there is a set number of days for a drug to be "gone" from the system?) Going from past experiments, it usually takes 5-8 days for me. This could get scary, but I've got to figure this out somehow. However, Jumpy, if you've got a better idea, i'm all ears.

In the case of flare-ups, or should I say, right now, let me peruse my "home pharmacy box": I have a choice of the following (going in order of best to worst in each treatment "category"):

Anti Parkinson

- Cabergoline 1mg & 4mg (with five repeat scripts yet to fill)
- Flixotide Accuhal (to counteract the cough which could come back) (with five repeat scripts yet to fill)

- Levodopa100mg/Benserazide25mg (Madopar125) (with five repeat scripts yet to fill)

- Levodopa100mg/Benserazide25mg Soluble (MadoparRapid125) (with five repeat scripts yet to fill)

- Levodopa250mg/Carbidopa25mg (Sinemet) (no repeat scripts; approx 60 tabs remaining)

- Bromocriptine 2.5mg (Parlodel) (with five repeat scripts yet to fill)

Sedatives

- Diazepam 5mg (Antenex) (2 unopened vials of 50 tabs + 1 open vial with approx 40 tabs)

- Zolpidem 10mg (Stilnox) (two tabs left, no repeat scripts)

Anti-Seizure


- Gabapentin 300mg (Neurontin) (3 repeat scripts left + 1 open box with approx 90tabs left)

I could almost open a pharmacy with that stockpile!!

In the first instance, I would reach for the Cabergoline; however, I am mindful of the cough coming back.

My second choice would be the Levodopa/Benserazide, but the sudden drops in BP are not nice.

Third choice would probably be the Diazepam.

Fourth choice would be a combination of the above three.

Jumpy, remember back a few posts ago in this thread I mentioned my extreme lactose intolerance when I was a child? Well, I think it also may have a hand in all of this as well. My current diet is pretty much 98% lactose free, (100% is going to be a literal pain in the proverbial with reading ALL the labels on food) however, if I have something with too much milk/cream in it (i.e. quiche, pasta, etc) I'm convinced it starts my legs going.

I still have an appointment with a third Neuro in Brisbane for September. He's supposed to be the "bees knees" for everything, including RLS. So it looks like yet another trip to Brisbane could be on the cards.

Argh!! I'm stressing out, I know it, and it ain't helping things!!!!

On a good note, I've got a massage/cranio session this morning, so I'm hoping that Marion can get my stress levels down.

Jumpy, I'm all ears.

Jan, thankyou for your support! BTW, I'm 28 ... 29 is fast approaching.

The idea of starting a family has been put to the literal back end of the line....again.

I know I know, STAY POSITIVE!!!

Luv ya guys
Nadia
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!!!

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

28--fast approaching 29

Post by jan3213 »

Nadia

I have twin daughters who are 27. I could be your mother! I was in my late 30's before RLS reared its ugly head (I may be repeating myself--I'm starting to do that a lot). Anyway, I'll be watching your posts to see how you're doing! My girls haven't shown any signs yet, fortunately. My son, who is 29, has had a few episodes, but not very many. All I can do for you is care and I really do. Jumpy is the one who is knowledgeable. Aren't we lucky to have him? And we're lucky to have you, too. You've both helped me (remember my surgery?). Anyway, know that someone in the middle of America is thinking of you and cares very deeply about a young woman named Nadia! And, I don't care who thinks that sounds sappy!!!

Sincerely,
Jan

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

Phew, you gave me quite a task!

Post by jumpyowl »

Nadia wrote among others:
So, I have a choice of two experiments:

1. Stay on the Endep/Elavil at 50mg and supplement it with something I already have a good supply of;

OR

2. Go completely off the Endep/Elavil altogether. However, I'm not going to start on something else straight away, I want everything to be clear from my system so I have some idea of what the heck my body does with no drugs at all. (Jumpy, do you know if there is a set number of days for a drug to be "gone" from the system?) Going from past experiments, it usually takes 5-8 days for me. This could get scary, but I've got to figure this out somehow. However, Jumpy, if you've got a better idea, i'm all ears.


Well, let me see #1. This is not a bad idea.

#1/a I would supplement it with Diazepam (Valium) 5 mg would be enough (?) and leave the level of Endep the same.

#1/b The other possibility is to decrease Endep to a previous dose level and supplement it. In this case, I would supplement it with:

Cabergoline (Cabaser) (I was suprised to find that this drug is also being sold as a sex drug under the name Dostinex. :oops: )

OR if need more help, Cabaser and Diazepam.

#2 You have to go off Endep gradually. This should be the final resort. I am not a great believer of stopping suddenly unless continuing with something similar (like a drug holiday).

Every drug has a half life in the body and they vary widely (also depend on what other drugs you have in your system). Eight days sound extreme but highly depends on the drug. Half life of Endep is: less than 24 hours
Metabolism

Studies in man following oral administration of 14C-labeled drug indicated that amitriptyline is rapidly absorbed and metabolized. Radioactivity of the plasma was practically negligible, although significant amounts of radioactivity appeared in the urine by 4 to 6 hours and one-half to one-third of the drug was excreted within 24 hours.


Now I supplement the Mirapex (0.5 mg) almost every night depending on pain level, how sleepy I am, whether I have a foreboding of paresthesia coming on (yours is with a big P). There is something to say about synergism but one always have to worry about drug interactions.

Eventually you may have to go to plan #2. But you do not have to remain drug free while you are weaning away from one. That is needless torture. :shock:

If you have the ear of your local doc, the one with the chocolate addiction, :wink: I would ask him for Ultram (Tramal) (300 mg) and Temazepam (30 mg).

You may not need anything else. :oops:

Let me know what you decide. These are occasional uses BTW. Just when you have the bad cycle. You can stop the supplement any time, since you are using it for only a few days.

I would stay away from Neurontin unless you really liked it. :wink:

Disclamer: I am not qualified to give medical advise and this note is not meant as such.
Jumpy Owl

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

Post by sardsy75 »

Sole wrote:I echo the sentiments of Jumpy and Jan. You're such a trooper to be able to bounce back from your episodes. I know how horrible they are. Night after night with little to no relief. Can make you feel helpless and hopeless real quick. Not to mention, drive you absolutely insane.


Feelings of utter helplessness, hopelessness and complete insanity aren't as far away as some people think when we're going through our worst days. However, I have vowed to never, ever, ever give in to whatever is getting me down or sick as it is the loved ones left behind who end up with the bigger burden of wondering "where did we go wrong?". I say this because a very very close friend of mine (who is/was my age) took his life two weeks before Christmas in 2002. He was a much loved only child and a much loved friend. This wasn't his first attempt at taking his life; it had actually taken him 10 years to "get it right". I can still remember counselling him for most the night one night right before I was due to sit for two final exams at university the next day; but, my friends came first, I didn't care that I failed my exams (I was later granted special consideration and was allowed to resit the exams - and passed). Every single day I think about him; and every single day I vow not to go the same way; no matter how hard it gets.

Sole wrote:I'm with Jumpy on this one. It's great that you've established a good report with your Dr. but come on, Sister, six months is not a trial run. It's torture. Regardless, if the RLS is secondary or not, you need treatment for it NOW. Sure, no medicine is going to work all the time but if the Elavil were really working, it would not quit working so fast and leave you with these furious episodes. But that's just my opinion. Ultimately, you're your best judge. :-)


I'm more than happy to hear everyone's thoughts, ideas and opinions. I "fell apart" on my dad's shoulder last nite out of pure frustration and could only say "it's getting too hard; i don't know where to go next." I have tried so many different drugs and so many different combinations of drugs in the past twelve months, it's a wonder that i'm not wandering around thinking "am i arthur, or martha, today??" The support and encouragement you guys give me are the gentle (and sometimes not very subtle) nudges in the right direction that I need to get back on track.

Sole wrote:So did you like Shrek 2? I haven't seen yet but we plan to take the kids.


Like it? LOVED IT!!!! Another girlfriend has not yet seen it so I may be going back for a third dose of much needed laughter! If you're a cat lover (as I am - we have two "children": Fidget [4yrs] and Pickles [18mths]) you will simply adore "Puss In Boots"! The second time round was just as funny as the first as I picked up a LOT of little things that i'd missed the first time round. Plenty of fun for the kids, and LOTS of fun for us adults!

Sole wrote:Let us know how you're doing tomorrow.....or today...whatever it is over there. :lol:


It's now 8pm Saturday night, and i'm doing much better. I will elaborate more in a reply to Jumpy's post.

Sole wrote:You're truly a great example for all of us.


Awww shucks! I just hope that through posting my experiences that I am able to help someone else through their experiences.

Take care of you Sole :)
Nadia
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!!!

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

Nuthin wrong with "Sappy" !!!

Post by sardsy75 »

jan3213 wrote:All I can do for you is care and I really do. Jumpy is the one who is knowledgeable. Aren't we lucky to have him? And we're lucky to have you, too. You've both helped me (remember my surgery?). Anyway, know that someone in the middle of America is thinking of you and cares very deeply about a young woman named Nadia! And, I don't care who thinks that sounds sappy!!!


Jan

You have no idea just how far caring thoughts can be "felt" around the world. It's the same with (((((HUGS))))) and the "warm, fuzzy feeling" you get when someone's just "sent" them to you!

Although you aren't able to be right here with me, I know that you are with me all the way in spirit, and that is sometimes far more uplifting and healing than simply "popping a pill" and hoping to feel better in the morning.

I don't possess the wonderful medical knowledge of Jumpy, but I do possess the knowledge of my own life experiences (all 28 yrs and 10mths so far!), and that is what I draw on when I offer advice and encouragement to all who have crossed my path in this journey. If I know where valuable/helpful information can be sourced, I also endeavour to pass this on too.

Jan, Your caring has been much appreciated over the past few days and has certainly helped in getting me back on track.

Big ((((((HUGS)))))) for you!
Take care of you!
Nadia
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!!!

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

I Promise not to make the task so hard next time!

Post by sardsy75 »

jumpyowl wrote:
So, I have a choice of two experiments:

1. Stay on the Endep/Elavil at 50mg and supplement it with something I already have a good supply of;

OR

2. Go completely off the Endep/Elavil altogether. However, I'm not going to start on something else straight away, I want everything to be clear from my system so I have some idea of what the heck my body does with no drugs at all. (Jumpy, do you know if there is a set number of days for a drug to be "gone" from the system?) Going from past experiments, it usually takes 5-8 days for me. This could get scary, but I've got to figure this out somehow. However, Jumpy, if you've got a better idea, i'm all ears.


Well, let me see #1. This is not a bad idea.

#1/a I would supplement it with Diazepam (Valium) 5 mg would be enough (?) and leave the level of Endep the same.
#1/b The other possibility is to decrease Endep to a previous dose level and supplement it. In this case, I would supplement it with: Cabergoline (Cabaser)
OR if need more help, Cabaser and Diazepam.
#2 You have to go off Endep gradually. This should be the final resort. I am not a great believer of stopping suddenly unless continuing with something similar (like a drug holiday).

Let me know what you decide. These are occasional uses BTW. Just when you have the bad cycle. You can stop the supplement any time, since you are using it for only a few days.

Disclamer: I am not qualified to give medical advise and this note is not meant as such.


Well, I've made it through Friday AND Saturday without too much trouble. In fact, as I sit here typing, my legs are pretty much back to "normal" (or 0 on my Scale) ... which, considering what I was like for most of this week, is fantastic!

I had a one hour combined massage and craniosacral therapy session with Marion yesterday morning (Friday) which was a positive mega boost for my rather drained energy levels.

However, my mum (bless her!) decided to give me one of her "I love you, and I mean well, so here's what I think you should be doing" lectures which kinda sent me backwards emotionally. Needless to say, when my dad dropped over later on to pick up some stuff, I fell apart on his shoulder and had a good cry. My dad has stuck by my mum for 30-odd years, and he knows how sick I've been throughout my life and how sick I am now, and understands that although she means well, mum isn't really helping me with her lectures LOL. But, after a good cry, a hug and some advice from my dear dad, I was feeling a lot better.

I also ventured back into the marital bed last nite! I slept pretty well, waking only twice. But it turns out that hubby spent the entire nite wide awake, completely paranoid about making a wrong move in case he disturbed and woke me up :roll: Ahhhh, I love him so much!!!

Today (Saturday) I have taken pretty easy and slowly and pottered about the house doing light jobs before heading out for some exercise in the form of a slow meander through the grocery store for the fortnightly shop. I ran into my hubby's parents and grandmother as I was leaving and they shouted me afternoon tea, so I ended up having a nice hour with them. Grandma was pleased to know that her walking stick had come to my aid during the week (she's now confined to a wheelchair for her adventures out). My father-in-law still has trouble coming to grips with me being able to get so slow and weak at my age; but that's his problem!

Jumpy, thankyou for your thoughts and comments. I have taken them on board and have decided that if things go "downhill" again ("touch wood" :? ) that experiment #1/a would be my "Plan A" and if that doesn't work then "Plan B" would come into effect, namely experiment #1/b.

Jumpyowl wrote:I would stay away from Neurontin unless you really liked it. :wink:


Ya think????? :wink:

Think I might save them for a "rainy" day ... or for if I'm really, really, really hankerin' for a hallucination or three...or four 8)


Well, it's almost 9pm and i'm plumb worn out; it's been a very long and very trying week. So, i'm going to head for a nice warm shower and a nice warm bed and hopefully catch up on some of the zzzz's i've missed this week. Tonight it's forecaste to get down to 5 degress celcius, but I think it's going to be colder! Definitely snuggle/huggle weather!!

Thankyou to you all for the positive and caring thoughts this week; they have really helped! Jumpy, you're an angel, a true friend, and a trooper!

(((((HUGS))))) to everyone and sweet dreams for those who catch those sometimes elusive zzzzz's.

Take care
Nadia
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!!!

Heronak
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Post by Heronak »

Nadia,

It's so good to hear you're feeling better, after such a rough week. The hopelessness can take over when you're suffering day after day, night after night, with no relief, no sleep. I hope this new week brings you many things to smile about,

Heron

jumpyowl
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Can you help?

Post by jumpyowl »

I think we should generally accept a reference system, so that we can refer to past posts and previous posts by others readily and clearly.

Possibly: "Select a Forum" has five forums on it. We could just number them from I to V. Then we have to specify the topic possibly by title and author's name. Then we could refer to a page number if the thread is long, or the name of the poster which replies to the topic(thread).

For example, V. -Heronak:Algorithm for RLS/p. 1/jumpyowl

I chose this one because I would like everyone to read it. It is not long but has a lot of info. 8)

My method is still clumsy. Does anyone out there has a better way of doing it?

Nadia, look up REFRACTORY RLS there if you have not already. And try it on your present neuro or your new one whom you see in September. I just have this vague idea that you might have that "rare" condition. It does fit you, sort of. :?
Last edited by jumpyowl on Sun Jul 25, 2004 11:23 am, edited 1 time in total.
Jumpy Owl

sardsy75
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Location: Queensland, Australia

RE: Refractive RLS

Post by sardsy75 »

jumpyowl wrote:Nadia, look up REFRACTIVE RLS there if you have not already. And try it on your present neuro or your new one whom you see in September. I just have this vague idea that you might have that "rare" condition. It does fit you, sort of. :?


Hey Jumpy :)

Yes, i'd already come across Heron's post but had not read the entire article until yesterday.

I think you're right about me "fitting" into the Refractory category :? You could pretty much put my name all over it really, considering my track record over the past 12 months lol.

I will be taking it to Dr K (gatekeeper), Dr W, and as I am more than likely going to see this third Neuro DrS-2, him as well.

I've been doing a lot of catching up on both work and household stuff this past week, having literally lost an entire week the week before with my dang legs. Not happy!

My sleeping patterns have been all over the place this week, but thankfully my legs have been "behaving" themselves. There was an interesting program on TV here this week relating to Insomnia and (shock horror!) STRESS! :shock: If anyone is interested in taking a look at the transcript, i've copied the weblink here: http://www.abc.net.au/catalyst/stories/s1159720.htm

My current drug regime is as follows:

1. Amitriptiline (Endep/Elavil) - 1 x 10mg + 1 x 50mg (taken at night)
2. Valerian 2000mg/Magnesium Oxide 83mg - 2 tabs (taken at night)
3. Multi Vitamin/Mineral/Herb - 1 tab (taken in the morning)


With my sleeping patterns being completely shot this week for the past three nights i've added the following:

4. Diazepam (Antenex) - 1 x 5mg (taken at night)

Although I did not actually go to bed until 1am this morning (no, i was not staring at pixels, i was actually reading a really, really, really good book!) once i dropped off to sleep (around 1.30 i think), although I was roused slightly by hubby at about 7.30am, I did not wake-up until 10am this morning! Not a bad effort!

Considering last weeks "category 6" efforts, the muscles on my back-side, from my neck to my ankles, are taking a while to recover, so to counteract the pain factor i've been using the following as needed:

5. Ibuprofen 200mg/Codeine Phos 12.8mg (Nurofen Plus) - 2 tabs (taken every eight hours)
6. Paracetamol 450mg/Codeine Phos 9.75mg/Doxylamine Succinate 5mg (Mersyndol) - 2 tabs (taken at night)


Now, before y'all jump down my throat, yes, i know doxylamine succinate is an antihistamine, but, as usual, it has no obvious effect on my RLS.

I'm in for a busy week this week; I've picked up two new clients, and possibly a third for my business (Bookkeeping); all of whom i'm meeting with sometime during Monday - Wednesday and then i'm off to Brisbane Thursday - Saturday to do some training for my work. It's going to be a hectic week, and i'm not sure how my body is going to react ... hopefully it won't (touch wood!).

Big (((((HUGGLES))))) for everyone and sweet dreams to those who manage to catch some of those sometimes elusive zzzz's :wink:

Take care all!
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!!!

jumpyowl
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Location: Yantis, TX
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You caught me, Nadia.

Post by jumpyowl »

You are so right refractory and refractive are not the same. I meant to go back and correct it but I have never got to it in time. :(

I know you are busy but I wanted to ask you, did you find my extraction of the full MAYO article helpful? I like things to be condensed with the back-up of the whole thing, but again it could only be me. :?

Good decisions you made about the upcoming doctors' visit. :)

I used to have some good friends in Brisbane, Drs. Frank English and his baby brother, some 20-30 years ago. How time flies....!

Huggies or is it huggles? ((((( :oops: )))))
Jumpy Owl

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

Re: RE: Refractive RLS

Post by sardsy75 »

sardsy75 wrote:I'm in for a busy week this week; I've picked up two new clients, and possibly a third for my business (Bookkeeping); all of whom i'm meeting with sometime during Monday - Wednesday and then i'm off to Brisbane Thursday - Saturday to do some training for my work. It's going to be a hectic week, and i'm not sure how my body is going to react ... hopefully it won't (touch wood!).


And what a hectic and painful week it was :?

Between half a dozen migraines, my "dear" RLS, and a now constant ache in my hips, I did actually learn quite a bit at the intensive two day course on Quickbooks Pro I attended on Thursday and Friday :roll:

In the past 10 days, I've had six migraines, which is far from good :shock:

My RLS kicked with such ferosity at around midday on Thursday it was quite scary. Thankfully I had a spare prescription with me for the 1mg Cabergoline, so I did the bolt to the pharmacy straight after training finished. "Plan B" was in full swing :cry: I stayed with an Aunt & Uncle while I was away and it was far more comforting to come "home" to some sympathetic ears, a hug, and a homecooked meal; rather than a depressingly empty hotel room.

They kicked in again very early Friday morning and by the time 4pm rolled around, I'd had 1mg Cabergoline at 9.45am & 1mg at 1.45pm; and 2 x Codeine/Ibuprofen tablets at around 11.45am. I'm convinced it was the chairs in the training room, and there was no use in swapping for another, as they were all the same :roll:

I think another trigger was the "unconscious" stress of the whole organising the trip, the actual travel and then having to concentrate quite hard for two long days :?

Today (Sunday), my RLS is back to a "1" on my scale; however I'm getting quite worried about the now constant ache in my hips, knees and ankles and hope to get an appointment with my gatekeeper, Dr K sometime this week to get some relief.

As my flight wasn't until late last nite (Sat), I spent yesterday doing some theraputic shopping in the factory outlet store area (my hubby's going to kill me when he sees the next c/card bill :wink: ) and then I spent some time with my Grandma (mum's mum - who has parkinsons). I didn't tell her I was coming to visit & when I arrived, she was dozing in her chair; but the minute she opened her eyes as I walked in, her whole face lit up, it was wonderful! We had a great time catching up on all the "family gossip" and although she's not all that steady on her feet now, she insisted on getting up to give me a HUGE Bear Hug before I left. Later on, talking to the uncle I was staying with, he told me that they've given her a max. of two years to live. The parkinson's is progressing quite rapidly, and even in the two months since I saw her last I could see the difference in her.

On a positive note though, even tho my body pretty much went feral on me while I was away, the break away from my normal day-to-day stuff was what I needed. I had two of the best solid nites sleep I've had in a loooong time :!:

Anyway, that's enuff from me for now. It's probably going to take me a good few days to recover from that trip, before I do it all over again next week for another two day course, this time for MYOB. Then I have to get organised to go back a third time to see the third Neuro Dr S-2. Ahhhh, the things we do :!:

Big (((((HUGGLES))))) to all, and Sweet Dreams to those who manage to catch some of those elusive zzzzz's

Take care!!
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!!!

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