N, Here's a related google link to "neuropsychopharmacologists." Doesn't seem to be an "expert witness" in Minnesota but there is one in Illinois. You could probably call one of them and they might be able to give you more info on one in your area. A call to the UM might also worth the dime. Also, wonder if the local pharmacologist in your area has a specialized program assessing drug interactions. I would list all of yours and see if it throws anything out with respect to contraindications. I know there are several of these on line but perhaps your large med list won't make the comparisons efficiently. Anyway, I would still ask your local pharmacologist for the best way to do that. I think some of the other responses you are getting with respect to meds which are not rls friendly are excellent as some are already quite questionable in that respect. Also, maybe a post to Dr. B. listing your meds and asking for a comment might bring some additional ideas.
http://www.jurispro.com/category/neurop ... ogy-s-512/
RLS LIFE: Drugs, Side Effects & Everything Else
Darling you know I would take that offer anytime. But thank you so very much for offering to go with me. That means the world to me.
If I had the money I would help fly you here. It's just not in the cards as yet.
My Aussie Sweet, you are in a tough and harder place right now, even than before (the first time you detoxed)...............
I know and I have been there to a point, not like you, my love.
I hope you know I am filling the moon and do so every night. I never give up on the possibilities.........or on you.
My love, my prayers, and always my love and support.
Lynne
If I had the money I would help fly you here. It's just not in the cards as yet.
My Aussie Sweet, you are in a tough and harder place right now, even than before (the first time you detoxed)...............
I know and I have been there to a point, not like you, my love.
I hope you know I am filling the moon and do so every night. I never give up on the possibilities.........or on you.
My love, my prayers, and always my love and support.
Lynne
Mark, Lynne, Susan, Corrie, Ann
Thankyou all for wading through my posts and making some sense of my ramblings.
"Neuropsychopharmacologists" ... that's a completely new one for me! I've done a bit of research on the web and there are not many here in Australia; but i've found three or four names and if I can't sort something with my Sleep Doc and GateKeeper I will suggest contacting them to see if they do any consulting work.
Mark, Susan, Corrie & Ann ... your input and advice regarding the medications I'm on has been greatly appreciated and has given me some different things to look at. Some of the medications you've mentioned arent necessarily available here in Australia, or are still being trialled for approval here, but I'll see if I can come up with a list of more than one alternative for each of everything i'm on now.
I have been on Gabapentin with disasterous results, which still haunt me to this day, so i'm not exactly keen on going there again right now.
Below is an email that I sent to my Sleep Doc on Tuesday (I've edited some parts to for privacy & confidentiality reasons):
Dear Dr O
Thought I better put this in a separate email as it relates purely to my RLS and the medications I'm on.
Ok ... where to start and how to make this make sense ...
Right ... the last time I saw Dr N (my 1st GP here in Gladstone), I mentioned that I was having breakthrough RLS symptoms during the day, nearly every day. After his usual "get over it" comment, he had a look at my list of medications and gave me the following options:
1. Increase the Endep {amitriptyline}) to 150mg/night (my brains' "off switch")
2. Increase the Rivotril {clonazepam} to 4mg/night (I currently take 2mg or 3mg, depending on how "dopey" I feel from the previous night's dose ... if that makes sense ... since it has such a long half-life).
3. Increase BOTH
Great!
You and I both know i've been up to 5mg and I don't particularly want to go there again so I have NOT increased the Rivotril.
I HAVE increased the Endep to 150mg/night and the "off-switch" started working again.
However, this is where I come to a dilemna. Technically, and according to a lot of the medical research, that amount of Endep (actually, just Endep itself), should be driving my RLS ballistic, but it's not! I increased the dosage a few weeks BEFORE that dreadful day at the end of October ... {edited for privacy & confidentiality reasons}.
After that, my stress levels went into over-drive. Stress is a known exacerbater for RLS and when I started getting the breakthrough day-time symptoms, stress is what I was thinking. At first, I used Madopar Rapid, but a week later I threw up within half an hour of taking it, three days in a row; so, naturally, I stopped it and scrapped together the money to get a script for 0.5mg Repreve filled. I have been taking 0.25mg/day ... up until last week when one word smacked me fair in the head and made me sit up and say to myself "you silly goose" ... Augmentation!
So, last Thursday night {Dec 4th} I stopped the Repreve and I've had NO breakthrough day-time symptoms.
However, that doesn't really explain why the day-time symptoms were happening in the first place. Was it the stress? Or was it the increase in dosage of Endep? I honestly don't know. I'm wondering if the Endep has come to the end of its "useful life" in my treatment and I need to switch to something else?
Since increasing the dosage, there are some new side-effects that I'm finding hard to tolerate: mega-dry-mouth; constant tremors ... mainly in my arms and hands, but sometimes my whole body; major difficulties urinating, even if i'm absolutely busting!
I've read through all the CMI's that I printed out and Endep is the one that came up as being the most likely offender.
Since I've only just started seeing Dr T, i'm not sure how he would react to me landing in his office and saying everything i've just typed above. I would be more confident in going to him if he was able to confirm with you that a change from Endep could be a possible avenue to explore.
Since my next appointment to see you isn't until February next year, i'm really not sure how to go about doing this.
Should I go to Dr T, show him this email and then ask him to write to you?
Ok so that's where I'm at with that dilly of a pickle. I haven't recieved any response so I'm hoping that I can put something together on paper to take to my GateKeeper who can liaise with my Sleep Doc ... fingers crossed.
Susan, your suggestions have been the kick in the pants that I've needed. I've been struggling with the "should i? shouldn't i?" for quite some time. After some digging around in the shed in our backyard I found my Yoga mat and the Yoga and Pilates DVD's i bought a couple of years ago. I've also been told that the local Womens Health Centre holds Yoga and Pilates classes so I'm going to see them next week.
This afternoon when I went to the other shed (one that we rent) to get the Christmas Tree, etc, I spotted a book in one of the boxes and was really glad when I realised i'd found my Chakra Meditation Books and CD's. About 6 or 7 years ago I did Tai Chi. I still remember most of the moves, but it's the meditative breathing techniques that I find the most useful (yes, I know there are some old-timers and newbies wondering "how the heck do you meditate when you just want to kick a hole in the wall!?" ... Trust me ... it can be done with time and patience). If I have the right amount of energy I love taking our Rotty, Zena, for a walk (although it's her who usually walks me!). As for swimming; I could swim before I could walk ... however, my lack of loving my body image right now is a big hinderance.
It has been an extremely traumatic week for Troy and I, both mentally and emotionally. No, the girls are not driving us crazy. It's outside sources that are doing their best to beat us into the ground, but they're up against a Momma & Poppa Bear who are being very protective and not giving in to being pushed around at the whim of someone who thinks that because they have money, it gives them power ... nuff said.
Lynne my dear ... methinks you know me better than I do right now!
Righto, i'd better hit the hay and try and get some zzz's. Not sure if I will coz I completely forgot to get my Endep script refilled today so my brain is just going round in circles. To top my night off, I had breakthrough symptoms this afternoon. If we DONT get any storms tomorrow night (our local weatherman has assured us that we will!) i'm gonna be rather peeved!
Love and hugs to all
Thankyou all for wading through my posts and making some sense of my ramblings.
"Neuropsychopharmacologists" ... that's a completely new one for me! I've done a bit of research on the web and there are not many here in Australia; but i've found three or four names and if I can't sort something with my Sleep Doc and GateKeeper I will suggest contacting them to see if they do any consulting work.
Mark, Susan, Corrie & Ann ... your input and advice regarding the medications I'm on has been greatly appreciated and has given me some different things to look at. Some of the medications you've mentioned arent necessarily available here in Australia, or are still being trialled for approval here, but I'll see if I can come up with a list of more than one alternative for each of everything i'm on now.
I have been on Gabapentin with disasterous results, which still haunt me to this day, so i'm not exactly keen on going there again right now.
Below is an email that I sent to my Sleep Doc on Tuesday (I've edited some parts to for privacy & confidentiality reasons):
Dear Dr O
Thought I better put this in a separate email as it relates purely to my RLS and the medications I'm on.
Ok ... where to start and how to make this make sense ...
Right ... the last time I saw Dr N (my 1st GP here in Gladstone), I mentioned that I was having breakthrough RLS symptoms during the day, nearly every day. After his usual "get over it" comment, he had a look at my list of medications and gave me the following options:
1. Increase the Endep {amitriptyline}) to 150mg/night (my brains' "off switch")
2. Increase the Rivotril {clonazepam} to 4mg/night (I currently take 2mg or 3mg, depending on how "dopey" I feel from the previous night's dose ... if that makes sense ... since it has such a long half-life).
3. Increase BOTH
Great!
You and I both know i've been up to 5mg and I don't particularly want to go there again so I have NOT increased the Rivotril.
I HAVE increased the Endep to 150mg/night and the "off-switch" started working again.
However, this is where I come to a dilemna. Technically, and according to a lot of the medical research, that amount of Endep (actually, just Endep itself), should be driving my RLS ballistic, but it's not! I increased the dosage a few weeks BEFORE that dreadful day at the end of October ... {edited for privacy & confidentiality reasons}.
After that, my stress levels went into over-drive. Stress is a known exacerbater for RLS and when I started getting the breakthrough day-time symptoms, stress is what I was thinking. At first, I used Madopar Rapid, but a week later I threw up within half an hour of taking it, three days in a row; so, naturally, I stopped it and scrapped together the money to get a script for 0.5mg Repreve filled. I have been taking 0.25mg/day ... up until last week when one word smacked me fair in the head and made me sit up and say to myself "you silly goose" ... Augmentation!
So, last Thursday night {Dec 4th} I stopped the Repreve and I've had NO breakthrough day-time symptoms.
However, that doesn't really explain why the day-time symptoms were happening in the first place. Was it the stress? Or was it the increase in dosage of Endep? I honestly don't know. I'm wondering if the Endep has come to the end of its "useful life" in my treatment and I need to switch to something else?
Since increasing the dosage, there are some new side-effects that I'm finding hard to tolerate: mega-dry-mouth; constant tremors ... mainly in my arms and hands, but sometimes my whole body; major difficulties urinating, even if i'm absolutely busting!
I've read through all the CMI's that I printed out and Endep is the one that came up as being the most likely offender.
Since I've only just started seeing Dr T, i'm not sure how he would react to me landing in his office and saying everything i've just typed above. I would be more confident in going to him if he was able to confirm with you that a change from Endep could be a possible avenue to explore.
Since my next appointment to see you isn't until February next year, i'm really not sure how to go about doing this.
Should I go to Dr T, show him this email and then ask him to write to you?
Ok so that's where I'm at with that dilly of a pickle. I haven't recieved any response so I'm hoping that I can put something together on paper to take to my GateKeeper who can liaise with my Sleep Doc ... fingers crossed.
Susan, your suggestions have been the kick in the pants that I've needed. I've been struggling with the "should i? shouldn't i?" for quite some time. After some digging around in the shed in our backyard I found my Yoga mat and the Yoga and Pilates DVD's i bought a couple of years ago. I've also been told that the local Womens Health Centre holds Yoga and Pilates classes so I'm going to see them next week.
This afternoon when I went to the other shed (one that we rent) to get the Christmas Tree, etc, I spotted a book in one of the boxes and was really glad when I realised i'd found my Chakra Meditation Books and CD's. About 6 or 7 years ago I did Tai Chi. I still remember most of the moves, but it's the meditative breathing techniques that I find the most useful (yes, I know there are some old-timers and newbies wondering "how the heck do you meditate when you just want to kick a hole in the wall!?" ... Trust me ... it can be done with time and patience). If I have the right amount of energy I love taking our Rotty, Zena, for a walk (although it's her who usually walks me!). As for swimming; I could swim before I could walk ... however, my lack of loving my body image right now is a big hinderance.
It has been an extremely traumatic week for Troy and I, both mentally and emotionally. No, the girls are not driving us crazy. It's outside sources that are doing their best to beat us into the ground, but they're up against a Momma & Poppa Bear who are being very protective and not giving in to being pushed around at the whim of someone who thinks that because they have money, it gives them power ... nuff said.
Lynne my dear ... methinks you know me better than I do right now!
Righto, i'd better hit the hay and try and get some zzz's. Not sure if I will coz I completely forgot to get my Endep script refilled today so my brain is just going round in circles. To top my night off, I had breakthrough symptoms this afternoon. If we DONT get any storms tomorrow night (our local weatherman has assured us that we will!) i'm gonna be rather peeved!
Love and hugs to 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!!!
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!!!
My Aussie Sweet,
Please know that your doing the best you can every daggggg gummmmmm day.
I don't know better, I just have been there sorta, on both sides of your post.
I would share my downs if it helps in anyway, yes, even the ones that are not so pretty.
Your doing great with all the stress and to hear that your looking for the mat and remembering the exercises is awesome. The warrior woman in you is there, still fighting to get out. I know the control you have place on her. Good thing for some others for sure. LOL
I have filled the moon and hope that the doc is open to helping, Both of them.
Hugs and much love,
Lynne
Please know that your doing the best you can every daggggg gummmmmm day.
I don't know better, I just have been there sorta, on both sides of your post.
I would share my downs if it helps in anyway, yes, even the ones that are not so pretty.
Your doing great with all the stress and to hear that your looking for the mat and remembering the exercises is awesome. The warrior woman in you is there, still fighting to get out. I know the control you have place on her. Good thing for some others for sure. LOL
I have filled the moon and hope that the doc is open to helping, Both of them.
Hugs and much love,
Lynne
Christmas was a joyous day; Santa was good to me ... but my brain insisted on screwing it up and I was confined to bed at about 6pm Christmas Night with Troy thumping my legs with his fists from my hips to my ankles. It drove me to tears ... not the pain from Troy beating my legs, but the frustration that the one day i want to have "off" didn't happen! No ... I don't have bruises up the back of my legs thankfully lol.
Today ... Boxing Day ... The girls have been out testing their new bikes and doing lots of crafty things ... yup, my brain does it to me again; this time whilst i'm trying to enjoy watching the first day of the Boxing Day Test Cricket Match between Australia and South Africa.
I'm still sticking with 30mg Codeine (Panadeine Forte) and 1mg Clonazepam to knock it on the head.
I must admit here that it got so bad last night (Christmas Night) that I actually tossed down a shot of vodka to see if it would help kick in the meds ... Ahhhh ... No ... Just made the Clonazepam work a lil betta lol. Oh well ... just gotta hurl at it whatever comes to mind sometimes. One of my girlfriends suggested "if one don't work ... try three!" ... but i didnt think that would be wise in case I ended up in the ER being scolded for mixing alco-ma-hol with prescription meds
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Righto ... Have booted the Ropinirole. Not sure if I said that in any of my most previous posts.
Here goes with the explanation of what everything else does:
Amitriptyline ... My Brain's "off switch"
Clonazepam ... Once my brain is switched off, it keeps me asleep
Codeine ... Helps with the pain
Lexapro ... Supposed to keep anxiety in check
Last Sunday was the FIRST time in a VERY long time that I had to dust off the walking stick. It was horrific and lasted for nearly three days.
I think the previous two weeks had literally caught up to me, physically, emotionally and mentally.
For reasons which I'm not about to go into here, I had an enforced, degrading pleasure of seeing a psychologist and a psychiatrist recently.
My new gatekeeper has been extremely helpful, especially when I landed in his office, terrified that the psychiatrist was going to come in over our heads and start playing with my medications. He tried to contact my Sleep Doc, however, she's in Canada (lucky lady!) so he sent a fax anyway which will be at the top of my casefile for when she gets back.
The psychiatrist was concerned about my daily dosage of Amit-yada, and also the Lexapro.
Spent about 3/4 hour with him and the psychologist and at the end it was agreed that because I have already raised my own concerns about the Endep (which i've been on for roughly four years now) and Lexapro with my own Gatekeeper and my Sleep Doc, he was happy to let me sort it all out with them rather than sticking his nose in and causing problems.
And ... I'M SANE!!!!!!!
So, until I see my Sleep Doc in Feb, I'm stuck with what I'm on. I will raise the issue of the Codeine + extras again. Honestly ... if i wanted to screw over my liver and kidneys that bad, I'd rather it be from being too "merry" than from having to put up with un-necessary extra "ingredients" with my medications.
That's my lil vent for today.
Hope everyone has had an enjoyable Christmas Day xoxo
Today ... Boxing Day ... The girls have been out testing their new bikes and doing lots of crafty things ... yup, my brain does it to me again; this time whilst i'm trying to enjoy watching the first day of the Boxing Day Test Cricket Match between Australia and South Africa.
I'm still sticking with 30mg Codeine (Panadeine Forte) and 1mg Clonazepam to knock it on the head.
I must admit here that it got so bad last night (Christmas Night) that I actually tossed down a shot of vodka to see if it would help kick in the meds ... Ahhhh ... No ... Just made the Clonazepam work a lil betta lol. Oh well ... just gotta hurl at it whatever comes to mind sometimes. One of my girlfriends suggested "if one don't work ... try three!" ... but i didnt think that would be wise in case I ended up in the ER being scolded for mixing alco-ma-hol with prescription meds
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Righto ... Have booted the Ropinirole. Not sure if I said that in any of my most previous posts.
Here goes with the explanation of what everything else does:
Amitriptyline ... My Brain's "off switch"
Clonazepam ... Once my brain is switched off, it keeps me asleep
Codeine ... Helps with the pain
Lexapro ... Supposed to keep anxiety in check
Last Sunday was the FIRST time in a VERY long time that I had to dust off the walking stick. It was horrific and lasted for nearly three days.
I think the previous two weeks had literally caught up to me, physically, emotionally and mentally.
For reasons which I'm not about to go into here, I had an enforced, degrading pleasure of seeing a psychologist and a psychiatrist recently.
My new gatekeeper has been extremely helpful, especially when I landed in his office, terrified that the psychiatrist was going to come in over our heads and start playing with my medications. He tried to contact my Sleep Doc, however, she's in Canada (lucky lady!) so he sent a fax anyway which will be at the top of my casefile for when she gets back.
The psychiatrist was concerned about my daily dosage of Amit-yada, and also the Lexapro.
Spent about 3/4 hour with him and the psychologist and at the end it was agreed that because I have already raised my own concerns about the Endep (which i've been on for roughly four years now) and Lexapro with my own Gatekeeper and my Sleep Doc, he was happy to let me sort it all out with them rather than sticking his nose in and causing problems.
And ... I'M SANE!!!!!!!
So, until I see my Sleep Doc in Feb, I'm stuck with what I'm on. I will raise the issue of the Codeine + extras again. Honestly ... if i wanted to screw over my liver and kidneys that bad, I'd rather it be from being too "merry" than from having to put up with un-necessary extra "ingredients" with my medications.
That's my lil vent for today.
Hope everyone has had an enjoyable Christmas Day xoxo
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!!!
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 wrote:Righto, i'd better hit the hay and try and get some zzz's. Not sure if I will coz I completely forgot to get my Endep script refilled today so my brain is just going round in circles.
P.S. I got NO sleep that night and was a literal grumpy momma bear with a very sore head.
The Endep DOES switch off my brain. It's interesting how just one night without it proved that it does do exactly that.
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!!!
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!!!
N.B. Methinks I was a lil out of it when I wrote this so just came back to correct the mistakes i've just picked out lol ... 27/12/08
Guess its my night for rambling ... sorry everyone. Everything is just so mixed up, stressful, hurtful, frustrating, angering, and every other word my smurfin brain wont let out right now.
If i seem to be repeating things, i'm sorry ... i'm in such a muddle i'm not sure which way is up/down or left/right anymore and here is the only place I know where I can write down what's going through my mind (well, what my brain will let out at the time ...) without fear of recrimination or scoff or scorn.
Ok ... Lets start from the top.
I had to find a new GateKeeper (for those who are relatively new to these boards, this is a term that was coined {sp?} by a very old and valued friend of a lot of us who've been around since the board's "conception" in early 2004 ... His name is Jumpyowl and oh how I miss him and his wise words and berating of my hairbrained experiments. Anyhoo, he came up with the term "Gate Keeper" instead of using the words Primary Care Provider {PCP}, or General Practioner {GP} or Family Practioner {FP} ... and ... as usual ... as Jumpyowl would say "I digress ..." )
Right ... I had to find another Gate Keeper last month as the Administration Manager at the place I was going to decided she didn't like me or my straightforward speakin (really gotta watch that around this town!) and she struck me from the books. I highly doubt that the Gate Keeper I WAS seeing at that time even knows that I'm gone, let alone the truth behind it.
Anyhoo ... After much stress, I contacted a friend who had nothing but high praise for the GK his mother sees; so I rang and asked if he was willing and able to accept a new patient with a plethora of problems. Much to my relief, he agreed. I've only seen him twice so far, and both times, I've been stressed to the max, legs (well, actually, brain really) going wild ... and just in need of someone to listen to me and NOT say "Get Over It".
As I mentioned 2 posts ago, I landed in his office last week, terrified about a psychiatrist wanting to change my medications. I was talking so fast I can't even remember what I said, but he calmly picked up the phone and that was when we found out that my Sleep Doc is in Canada. Oh well ... we tried. He then sent the fax so it would be in my file down there.
Susan, Mark, Corrie and Anne, I thankyou for all the advice and tips. I think i've said thankyou already, but just covering my bases. I've done some research and have a list of alternative medications that are available here in Australia. What they cost though is another matter entirely.
Diagnosed Stuff (& relevant medications):
1. Chronic Refractory Familial Restless Legs Syndrome ... NO PLMD - 2 sleep studies to prove it (Clonazepam, Amitriptyline, Codeine/Paracetamol)
2. Hashimoto's Disease ... a form of HypOthyroidism (Thyroxine)
3. Reynauds Disease ... linked to the Hashimoto's ... found that out from the psychologist!
4. Chronic Fatigue Syndrome
5. Chostochondritis (Refer list for RLS lol)
6. Anxiety/Depression (Lexapro)
7. Epstien Barr Virus ... aka Glandular Fever
What is smurfing me off the most is the breakthrough symptoms I'm getting ... AGAIN ... during the day. Yesterday's was because of a heap of storm activity in the region. The stuff over the w/end that had me dustin off the walking stick i've put down to the three straight days of bein on my feet doin the last of the Christmas shopping with the girls, followed by an enormous grocery shop; so methinks i went way over the threshhold of the "exercise" line.
Yes, i've found my yoga mat and my yoga & pilates dvds. I'm waiting until the girls go down to their mums next Saturday so I can have some peace and quiet. Why wait? Well, I just want to be able to start off when i've got the house to myself and i'm not having to keep two eyes on three, or more, kids at the same time.
My "happy face" has come unglued coz a mate said to me "Gee you look tired!" And here was me thinkin I still looked "the best I've seen you in a long time" from the same friend, about 4 weeks ago.
I know I need to change the Amit-yada ... Yes i've done a detox before, but that was BEFORE i moved in with Troy and the girls and I could go nuts in relative peace ... but this time it's going to be harder, esp since it's my brain's "off switch! I'm gonna have to resist increasing the clonazepam each week as I cut the Amit-yada back. Oh yay ... I remember the "old days" when I functioned on less than 3hrs sleep ... fun fun!
I also need something other than 1mg Clonazepam and Paracetamol (??? yup, I was with it last night! Paracetamol shud be Codeine) to try and knock daytime symptoms on the head. Sometimes i'm scared to drive ... let alone walk around the house! I've got bruises up and down my arms from collecting the corner of the cupboards right near our bedroom door. Other days, i feel fine.
It's as though i'm back to square one again and February seems like a lifetime away right now.
Ok ... my brain aint lettin my fingers co-ordinate, so i'd best take myself to bed.
No need to respond ... just needed to get a few things written down before my brain really shut down for the night.
Shalom
Guess its my night for rambling ... sorry everyone. Everything is just so mixed up, stressful, hurtful, frustrating, angering, and every other word my smurfin brain wont let out right now.
If i seem to be repeating things, i'm sorry ... i'm in such a muddle i'm not sure which way is up/down or left/right anymore and here is the only place I know where I can write down what's going through my mind (well, what my brain will let out at the time ...) without fear of recrimination or scoff or scorn.
Ok ... Lets start from the top.
I had to find a new GateKeeper (for those who are relatively new to these boards, this is a term that was coined {sp?} by a very old and valued friend of a lot of us who've been around since the board's "conception" in early 2004 ... His name is Jumpyowl and oh how I miss him and his wise words and berating of my hairbrained experiments. Anyhoo, he came up with the term "Gate Keeper" instead of using the words Primary Care Provider {PCP}, or General Practioner {GP} or Family Practioner {FP} ... and ... as usual ... as Jumpyowl would say "I digress ..." )
Right ... I had to find another Gate Keeper last month as the Administration Manager at the place I was going to decided she didn't like me or my straightforward speakin (really gotta watch that around this town!) and she struck me from the books. I highly doubt that the Gate Keeper I WAS seeing at that time even knows that I'm gone, let alone the truth behind it.
Anyhoo ... After much stress, I contacted a friend who had nothing but high praise for the GK his mother sees; so I rang and asked if he was willing and able to accept a new patient with a plethora of problems. Much to my relief, he agreed. I've only seen him twice so far, and both times, I've been stressed to the max, legs (well, actually, brain really) going wild ... and just in need of someone to listen to me and NOT say "Get Over It".
As I mentioned 2 posts ago, I landed in his office last week, terrified about a psychiatrist wanting to change my medications. I was talking so fast I can't even remember what I said, but he calmly picked up the phone and that was when we found out that my Sleep Doc is in Canada. Oh well ... we tried. He then sent the fax so it would be in my file down there.
Susan, Mark, Corrie and Anne, I thankyou for all the advice and tips. I think i've said thankyou already, but just covering my bases. I've done some research and have a list of alternative medications that are available here in Australia. What they cost though is another matter entirely.
Diagnosed Stuff (& relevant medications):
1. Chronic Refractory Familial Restless Legs Syndrome ... NO PLMD - 2 sleep studies to prove it (Clonazepam, Amitriptyline, Codeine/Paracetamol)
2. Hashimoto's Disease ... a form of HypOthyroidism (Thyroxine)
3. Reynauds Disease ... linked to the Hashimoto's ... found that out from the psychologist!
4. Chronic Fatigue Syndrome
5. Chostochondritis (Refer list for RLS lol)
6. Anxiety/Depression (Lexapro)
7. Epstien Barr Virus ... aka Glandular Fever
What is smurfing me off the most is the breakthrough symptoms I'm getting ... AGAIN ... during the day. Yesterday's was because of a heap of storm activity in the region. The stuff over the w/end that had me dustin off the walking stick i've put down to the three straight days of bein on my feet doin the last of the Christmas shopping with the girls, followed by an enormous grocery shop; so methinks i went way over the threshhold of the "exercise" line.
Yes, i've found my yoga mat and my yoga & pilates dvds. I'm waiting until the girls go down to their mums next Saturday so I can have some peace and quiet. Why wait? Well, I just want to be able to start off when i've got the house to myself and i'm not having to keep two eyes on three, or more, kids at the same time.
My "happy face" has come unglued coz a mate said to me "Gee you look tired!" And here was me thinkin I still looked "the best I've seen you in a long time" from the same friend, about 4 weeks ago.
I know I need to change the Amit-yada ... Yes i've done a detox before, but that was BEFORE i moved in with Troy and the girls and I could go nuts in relative peace ... but this time it's going to be harder, esp since it's my brain's "off switch! I'm gonna have to resist increasing the clonazepam each week as I cut the Amit-yada back. Oh yay ... I remember the "old days" when I functioned on less than 3hrs sleep ... fun fun!
I also need something other than 1mg Clonazepam and Paracetamol (??? yup, I was with it last night! Paracetamol shud be Codeine) to try and knock daytime symptoms on the head. Sometimes i'm scared to drive ... let alone walk around the house! I've got bruises up and down my arms from collecting the corner of the cupboards right near our bedroom door. Other days, i feel fine.
It's as though i'm back to square one again and February seems like a lifetime away right now.
Ok ... my brain aint lettin my fingers co-ordinate, so i'd best take myself to bed.
No need to respond ... just needed to get a few things written down before my brain really shut down for the night.
Shalom
Last edited by sardsy75 on Sat Dec 27, 2008 5:17 am, edited 1 time in total.
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!!!
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!!!
-
Polar Bear
- Moderator
- Posts: 8821
- Joined: Tue Dec 26, 2006 4:34 pm
- Location: United Kingdom
Hi Nadia,
Phew.... what a 'merry christmas' few days it has been for you.
I have no advice at all... but think of you.
Phew.... what a 'merry christmas' few days it has been for you.
I have no advice at all... but think of you.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation
-
ViewsAskew
- Moderator
- Posts: 16581
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
I have always thought that when there are multiple things at play that the person needs a very special doctor. It's just too hard to muddle through all that for the average jane or joe. I also keep thinking that maybe, just maybe, there's something else happening that the docs aren't finding yet because of the other things that they are attributing all this to. But, I say that all the time about my DH and two good friends, all of whom have autoimmune disorders.
Whatever it is, I am so sorry you are still going through all of this, Nadia. I have had a few bad nights lately and am a whiny baby, lol. I'm no minimizing my own when I say this; you have so many things happening at the same time.
Here's still hoping you have some respite from it...and soon.
Whatever it is, I am so sorry you are still going through all of this, Nadia. I have had a few bad nights lately and am a whiny baby, lol. I'm no minimizing my own when I say this; you have so many things happening at the same time.
Here's still hoping you have some respite from it...and soon.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Yes ... tis the season to be jolly ... so why the smurf am i on my "pity pot"?
Guess i've finally reached the Real end of my patience and tether and just want some "time off" for want of a better phrase from all of this, that and everything else that's being/been hurled in my/our direction.
Ann, i think you're right about needing a Specialist Doctor. I think there's one here in town. If not, I know there's a good Specialist General Physician, up where I used to live, whom I saw about 4 years ago.
I see where you're heading ... do every test under the sun and see what comes out at the end. I could handle that. LOL i've handled some pretty tough crappolla this year and last, so a few (hundred) medical tests wudn't phase me at all.
Ha ... just thought of something ... I'd have eyes rolled at me and "where are we going to get the money from" thrown straight at me.
So ... where does one go?
Betty ... no problemo ... this was my first stop coz I knew I wouldn't get told off for being so down n out at Christmas.
Righto ... someone betta yank that pot out from under me and take their turn on it coz i'm gonna watch the Cricket.
Guess i've finally reached the Real end of my patience and tether and just want some "time off" for want of a better phrase from all of this, that and everything else that's being/been hurled in my/our direction.
Ann, i think you're right about needing a Specialist Doctor. I think there's one here in town. If not, I know there's a good Specialist General Physician, up where I used to live, whom I saw about 4 years ago.
I see where you're heading ... do every test under the sun and see what comes out at the end. I could handle that. LOL i've handled some pretty tough crappolla this year and last, so a few (hundred) medical tests wudn't phase me at all.
Ha ... just thought of something ... I'd have eyes rolled at me and "where are we going to get the money from" thrown straight at me.
So ... where does one go?
Betty ... no problemo ... this was my first stop coz I knew I wouldn't get told off for being so down n out at Christmas.
Righto ... someone betta yank that pot out from under me and take their turn on it coz i'm gonna watch the Cricket.
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!!!
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!!!
-
ViewsAskew
- Moderator
- Posts: 16581
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
I know this is a political statement and this isn't a political board...so off goes the moderator hat.
I just don't understand how the words "for-profit" and "health care" can be put in the same sentence. They are mutually exclusive. If I want to maximize profits, I will NOT maximize what is best for those I treat/serve. It's not possible to have both.
End of rant.
I don't know how you're supposed to do it. But, it sure seems you may NEVER figure it out if you don't. Can you imagine staying like you are today for the rest of your life? With the chance that maybe someone might figure it out?
There are no guarantees in life, but I do know one thing...if you don't try, there are much fewer chances that you'll get what you want and need.
I also don't know how Australia's heathcare system works. Is anything paid for by the government? Are there programs you can participate in for people with lower incomes? There's also begging the mum and dad...
I just don't understand how the words "for-profit" and "health care" can be put in the same sentence. They are mutually exclusive. If I want to maximize profits, I will NOT maximize what is best for those I treat/serve. It's not possible to have both.
End of rant.
I don't know how you're supposed to do it. But, it sure seems you may NEVER figure it out if you don't. Can you imagine staying like you are today for the rest of your life? With the chance that maybe someone might figure it out?
There are no guarantees in life, but I do know one thing...if you don't try, there are much fewer chances that you'll get what you want and need.
I also don't know how Australia's heathcare system works. Is anything paid for by the government? Are there programs you can participate in for people with lower incomes? There's also begging the mum and dad...
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
LOL ... Love the rant. Problem is ... it's TRUE!
I ain't been through three Neuro's, a Sleep Doc and three GK's for nothin! I want answers!
What smurfed me off about the Neruo's was their lack of compassion, empathy and ... response time. It seems logical to me that if one of your patients rings your office in dire need of help right then and there ... ringing them back three days later ain't gonna score ya any points! So that takes care of the bloody Neuro's!
The Sleep Doc ... well, so far, so good but I'm thinkin it's time she and I colluded with a) a neuro or b) a general specialist.
As for the Gate Keeper's ... The one i had to leave due to my moving out of town had the audacity to call me a drug addict (I set him right!); the next one's office manager had a stick shoved so far up her caboose it had totally removed her beside manner. My newest Gate Keeper has, so far in two visits, impressed me by actually listening to me lol, so i might keep him for a while.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
As an old friend of mine once told me "You only get one ticket on this ride called life, so make it the best ride you've ever had." Dont worry, I ain't gone thru all those Neuro's for nothin. If someone doesnt want to help me on my quest for a better Quality of Life, they get left by the wayside.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Now ... how does the Healthcare system here down under work? Well, i'm still trying to figure that out myself. We have a Public System which is funded by the Government and Medicare and a Private System funded by the Private Health Insurance Funds.
I've had Private Health Insurace for as long as I can remember. As soon as I moved in with Troy I changed my PHI from a "Single" to a "Family". It costs us just over AUD$200.00 a month.
Without PHI, if you are in need of surgery, be it critical or non-critical, you join the queue ... and that queue can be YEARS long!
With PHI, if you are in need of surgery, you can pick the Doc, pick the Hospital, pick the Date, etc, etc.
Without PHI, if you are in need of physiotherapy, major dental work, glasses, etc, the only thing that the Govt's Medicare system covers is the actual cost of the visit to the dentist or optometrist; and YOU have to pay for the rest, e.g. glasses frames, lenses, tinting (if you're getting a second pair) which, in the optometrist scenario, can quickly climb over the AUD$1000.00 mark.
Physio's are considered to be different, so you fork out as much as $65/visit for as long as you need.
With PHI, the cost you bear is considerably less as the Fund will pay for anywhere between 50% - 100% of the out of pocket costs. However, there are limits on how much you can claim e.g. a AUD$65.00 physio session only costs me AUD$32.00, and the PHI pays the balance, BUT, only up to a limit of say AUD$300.00 per calendar year. Then you have to fork out for the lot.
Put it this way, the operation I had to reattach the ligament in my thumb last year was "worth" over $2000.00. All I paid was the AUD$250.00 "excess" that i've agreed to pay with my PHI Provider and that was it.
MRI's, CT Scans, Specialist Appt's (i.e. my Sleep Doc) and the like can be a handful to digest. If you're an in-patient in hospital, the PHI Provider will usually cover the total of the out-of-pocket cost AFTER the Govt Medicare rebate has been taken out for all tests done. However, the CT Scans i had done on my brain and spine back in October weren't covered by my PHI as I was not in hospital and we had to scrap together the AUD$200.00 difference after we received the Medicare Cheque. Think the total for the two scans was up over AUD$600.00. I'm out of pocket at least $50.00 each time I see my Sleep Doc.
Righto, now that i've completely bamboozled you with all of that, you probably know just as much as I do about our Aussie Healthcare System ... It's blimmen complicated!!!
Low income/high income means nothing except when it comes to topping up the Govt's Medicare coffers. If you're NOT in a Private Health Insurance Fund and you earn over a certain amount in wages (before tax) per year, you get slugged what is really an extra "tax" to "pay your way" in the public health system.
If you ARE in a PHIF and you earn over that amount, you DONT get slugged that extra "tax".
As for begging mum and dad ... mum's gearing up to have two entire knee replacements over the next couple of months so i ain't goin there lol.
Righto ... as usual i've written a really "short" post, so i'll shuddup and go back to watchin the Cricket. With a bit of luck the Aussie's might've pulled their finger out and are back in batting ...
Love n hugs to all
I ain't been through three Neuro's, a Sleep Doc and three GK's for nothin! I want answers!
What smurfed me off about the Neruo's was their lack of compassion, empathy and ... response time. It seems logical to me that if one of your patients rings your office in dire need of help right then and there ... ringing them back three days later ain't gonna score ya any points! So that takes care of the bloody Neuro's!
The Sleep Doc ... well, so far, so good but I'm thinkin it's time she and I colluded with a) a neuro or b) a general specialist.
As for the Gate Keeper's ... The one i had to leave due to my moving out of town had the audacity to call me a drug addict (I set him right!); the next one's office manager had a stick shoved so far up her caboose it had totally removed her beside manner. My newest Gate Keeper has, so far in two visits, impressed me by actually listening to me lol, so i might keep him for a while.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
As an old friend of mine once told me "You only get one ticket on this ride called life, so make it the best ride you've ever had." Dont worry, I ain't gone thru all those Neuro's for nothin. If someone doesnt want to help me on my quest for a better Quality of Life, they get left by the wayside.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Now ... how does the Healthcare system here down under work? Well, i'm still trying to figure that out myself. We have a Public System which is funded by the Government and Medicare and a Private System funded by the Private Health Insurance Funds.
I've had Private Health Insurace for as long as I can remember. As soon as I moved in with Troy I changed my PHI from a "Single" to a "Family". It costs us just over AUD$200.00 a month.
Without PHI, if you are in need of surgery, be it critical or non-critical, you join the queue ... and that queue can be YEARS long!
With PHI, if you are in need of surgery, you can pick the Doc, pick the Hospital, pick the Date, etc, etc.
Without PHI, if you are in need of physiotherapy, major dental work, glasses, etc, the only thing that the Govt's Medicare system covers is the actual cost of the visit to the dentist or optometrist; and YOU have to pay for the rest, e.g. glasses frames, lenses, tinting (if you're getting a second pair) which, in the optometrist scenario, can quickly climb over the AUD$1000.00 mark.
Physio's are considered to be different, so you fork out as much as $65/visit for as long as you need.
With PHI, the cost you bear is considerably less as the Fund will pay for anywhere between 50% - 100% of the out of pocket costs. However, there are limits on how much you can claim e.g. a AUD$65.00 physio session only costs me AUD$32.00, and the PHI pays the balance, BUT, only up to a limit of say AUD$300.00 per calendar year. Then you have to fork out for the lot.
Put it this way, the operation I had to reattach the ligament in my thumb last year was "worth" over $2000.00. All I paid was the AUD$250.00 "excess" that i've agreed to pay with my PHI Provider and that was it.
MRI's, CT Scans, Specialist Appt's (i.e. my Sleep Doc) and the like can be a handful to digest. If you're an in-patient in hospital, the PHI Provider will usually cover the total of the out-of-pocket cost AFTER the Govt Medicare rebate has been taken out for all tests done. However, the CT Scans i had done on my brain and spine back in October weren't covered by my PHI as I was not in hospital and we had to scrap together the AUD$200.00 difference after we received the Medicare Cheque. Think the total for the two scans was up over AUD$600.00. I'm out of pocket at least $50.00 each time I see my Sleep Doc.
Righto, now that i've completely bamboozled you with all of that, you probably know just as much as I do about our Aussie Healthcare System ... It's blimmen complicated!!!
Low income/high income means nothing except when it comes to topping up the Govt's Medicare coffers. If you're NOT in a Private Health Insurance Fund and you earn over a certain amount in wages (before tax) per year, you get slugged what is really an extra "tax" to "pay your way" in the public health system.
If you ARE in a PHIF and you earn over that amount, you DONT get slugged that extra "tax".
As for begging mum and dad ... mum's gearing up to have two entire knee replacements over the next couple of months so i ain't goin there lol.
Righto ... as usual i've written a really "short" post, so i'll shuddup and go back to watchin the Cricket. With a bit of luck the Aussie's might've pulled their finger out and are back in batting ...
Love n hugs to 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!!!
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!!!
I think i've already mentioned this numerous times somewhere in the past 36 pages ... I DETEST BEING A WALKING WEATHER STATION!!!
For smurfs sake. I'd been awake all of 20 minutes this morning and BANG ... off we go!
Haven't used Ropinirole (Repreve/Requip) for several weeks now thanks to good ol augmentation, so it shud be well and truly out of my system; so, along with my usual 30mg Panadeine Forte and 1mg Clonazepan, and after discussing it with Troy first (since I'd already asked him to beat the livin crap outta my calves and thighs) ... I decided to try 0.125mg Ropinirole.
It's been roughly six hours since then. It's niggling away at me but i've been head down bum up working on a rather intricate jigsaw and only noticed it when I heard the thunder outside. Came in to check the meteorology site and sure enough, we're surrounded by storms at the mo.
Oh well ... I think i've waited long enough to have another dose of everything ...
By all rights my legs shud be black and blue from hip to ankle from all the pummelling i've asked Troy to do for the past week. The cramps are the most debilitating. Do a gentle leg flex at the knee then a simple turn of my ankle and i end up screaming blue bloody murder!
Please let it rain!!!!!!
For smurfs sake. I'd been awake all of 20 minutes this morning and BANG ... off we go!
Haven't used Ropinirole (Repreve/Requip) for several weeks now thanks to good ol augmentation, so it shud be well and truly out of my system; so, along with my usual 30mg Panadeine Forte and 1mg Clonazepan, and after discussing it with Troy first (since I'd already asked him to beat the livin crap outta my calves and thighs) ... I decided to try 0.125mg Ropinirole.
It's been roughly six hours since then. It's niggling away at me but i've been head down bum up working on a rather intricate jigsaw and only noticed it when I heard the thunder outside. Came in to check the meteorology site and sure enough, we're surrounded by storms at the mo.
Oh well ... I think i've waited long enough to have another dose of everything ...
By all rights my legs shud be black and blue from hip to ankle from all the pummelling i've asked Troy to do for the past week. The cramps are the most debilitating. Do a gentle leg flex at the knee then a simple turn of my ankle and i end up screaming blue bloody murder!
Please let it rain!!!!!!
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!!!
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!!!
Happy New Year to one and all.
We have all fingers, toes, arms, legs and everything else crossed that 2009 will be at least a lil better than what we've been copping lately.
Anyhoo ... It's been a good couple of years since my RLS has woken me during the night. It was a complete surprise at 3:30 this morning when I sat bolt upright in bed and went "Oh Crap!"
Literally countin down the sleeps til I go down to see Sleep Doc on Feb 17th.
Goin to bed before head hits keyboard. Hate it when I have to take all my bedtime stuff earlier in the night as I literally become a walking zombie if i'm pottering around doing housework.
Niters
We have all fingers, toes, arms, legs and everything else crossed that 2009 will be at least a lil better than what we've been copping lately.
Anyhoo ... It's been a good couple of years since my RLS has woken me during the night. It was a complete surprise at 3:30 this morning when I sat bolt upright in bed and went "Oh Crap!"
Literally countin down the sleeps til I go down to see Sleep Doc on Feb 17th.
Goin to bed before head hits keyboard. Hate it when I have to take all my bedtime stuff earlier in the night as I literally become a walking zombie if i'm pottering around doing housework.
Niters
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!!!
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!!!
-
Polar Bear
- Moderator
- Posts: 8821
- Joined: Tue Dec 26, 2006 4:34 pm
- Location: United Kingdom
Sardsy, I think the hols and the change of routine doesn't help either. I was back to work today having been off for two weeks, so of course normal patterns had gone to pot. When I awoke this morning at 4.30 am it was too late to take a sleeping pill, (cos of work) and no point in taking my requip cos it wouldn't work in time to get any sleep..........
Enjoy your sleep tonight. Fingers and toes crossed you don't have another 3.30am awakening.
Enjoy your sleep tonight. Fingers and toes crossed you don't have another 3.30am awakening.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation