my RLS story...
- Thread starter misk
- Start date
well the GP was as excited to see me as always and about as enthusiastic as a house brick.
i explained my symptoms as i had previously and then told him about what i had researched about fibromyalgia and he thought it may be possible but highly unlikely.
he did at least pull some blood for some tests and then suggested i continue with the SSRI (which will give me insomnia lol) but i pleaded that it would take at least 1-2 weeks and would not actually solve the issue of panic attacks, spontaneous anxiety and the pain in my legs and he finally agreed to 'trial' some .5mg xanax.
i had a list of medication used to treat fibro, and he said that 3 of the 5 i suggested arent available in aus, but said Cyclobenzaprine and Clonidine are available.
he didnt want to give me Cyclobenzaprine because it 'sounded' like a benzodiazapine due to the 'aprine' at the end of the name lol, so i now have .1mg Clonidine to see if it will help and will await the results of the blood tests.
seem to be making some headway which has improved my outlook on life in a huge way, but dear god its been a mission!
i explained my symptoms as i had previously and then told him about what i had researched about fibromyalgia and he thought it may be possible but highly unlikely.
he did at least pull some blood for some tests and then suggested i continue with the SSRI (which will give me insomnia lol) but i pleaded that it would take at least 1-2 weeks and would not actually solve the issue of panic attacks, spontaneous anxiety and the pain in my legs and he finally agreed to 'trial' some .5mg xanax.
i had a list of medication used to treat fibro, and he said that 3 of the 5 i suggested arent available in aus, but said Cyclobenzaprine and Clonidine are available.
he didnt want to give me Cyclobenzaprine because it 'sounded' like a benzodiazapine due to the 'aprine' at the end of the name lol, so i now have .1mg Clonidine to see if it will help and will await the results of the blood tests.
seem to be making some headway which has improved my outlook on life in a huge way, but dear god its been a mission!
Mr Blonde
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^ That's great to hear brother!
Are you serious about the cyclobenzaprine bit, it 'sounds' like a benzo is what he said? He sounds like a jack ass doctor to me. I don't think cyclobenzaprine is available in Australia either... it's definitely not listed on the PBS, and as of about 5 years ago it wasn't available here.
It seems as though the only muscular relaxants available here on the PBS are baclofen and dantrolene. Baclofen can be freely prescribed, dantrolene is only authorized to be covered for extreme spasticity.
Let us know how the clonidine and alprazolam work out.
Are you serious about the cyclobenzaprine bit, it 'sounds' like a benzo is what he said? He sounds like a jack ass doctor to me. I don't think cyclobenzaprine is available in Australia either... it's definitely not listed on the PBS, and as of about 5 years ago it wasn't available here.
It seems as though the only muscular relaxants available here on the PBS are baclofen and dantrolene. Baclofen can be freely prescribed, dantrolene is only authorized to be covered for extreme spasticity.
Let us know how the clonidine and alprazolam work out.
Well clonidine def puts me to sleep but only for a short period and doesn't directly relive the pain.
but if I have .3mg clonidine, 1.5mg alprazolam, 50mg of tramadol and 25mg of seroquel I'm not out zombie spec all night and wake up with only some side effects from the clonidine which is low blood pressure resulting in fatigue and bit of dizziness only when I do heavy lifting.
I know its not an ideal combo of drugs and isn't treating the cause but it allowed me to face a lot of my gears yesterday and call a lot of people that didn't know I was going through a rough patch which was a huge weight off my shoulders.
I'm not really placing all my bets on having fibromyalgia but of I can rule it out then its a step in the right direction.
I wasn't aware there was a direct gaba2 agonist available nor did I think it would be easy to obtain.
as it works in a similar way to ghb without stimulating the ghb receptor then it may provide relief also.
but if I have .3mg clonidine, 1.5mg alprazolam, 50mg of tramadol and 25mg of seroquel I'm not out zombie spec all night and wake up with only some side effects from the clonidine which is low blood pressure resulting in fatigue and bit of dizziness only when I do heavy lifting.
I know its not an ideal combo of drugs and isn't treating the cause but it allowed me to face a lot of my gears yesterday and call a lot of people that didn't know I was going through a rough patch which was a huge weight off my shoulders.
I'm not really placing all my bets on having fibromyalgia but of I can rule it out then its a step in the right direction.
I wasn't aware there was a direct gaba2 agonist available nor did I think it would be easy to obtain.
as it works in a similar way to ghb without stimulating the ghb receptor then it may provide relief also.
After another quick read, a combo of clonidine, baclofen and a DRI (Bupropion) may be another possible treatment as it will focus on norepiniphrene and dopamine uptake inhibiting whilst being an agonist at the gaba2 receptor through all properties of the drugs combined, so could be interesting
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Mr Blonde
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Baclofen binds to the GABAb receptor but I think has a different mode of action there compared to GHB, and has no abuse potential that I know of.
Pretty much all of the drugs you are on right now can cause low blood pressure, with the exception of tramadol. So it is understandable you might have low blood pressure related side effects in the mornings. As long as it isn't too severe, you should be alright.
Would be interesting to see if that clonidine, baclofen and buproprion combination helps.
jebus christ lol
list of meds i took
xanax baclofen seroquel neurontin tramadol Clonidide
1.5mg 10mg 25mg 1500mg 100mg 10mg
my girlfriend kind of woke me as i was talking to her whilst asleep and was going on about how i'm attached to a huge metal machine like an MRI machine but more matrix style.
i managed to tell her that my legs were going numb and had pins and needles so she put pillows under my legs and was all good.
she tired to talk to me in this state but obviously i wasnt very coherent.
even now after being awake fiighting the sympons for an hour i am extreamly dopey and just not able to processs normal motor functions correctly, but other brain activirit is some normal
im unsure which drug is making me so epically drugged and slowed down as none of them on their own hace that effectl.
i have tried without neurontin and rhweffects are the same.
apologies for the poor grammar, i can barely see or understand what im talking aboot .lol
i will remove seroquel and neurtontin next time i dose, and se whar happed.
then i will try baclofen with clonidine, or baclofen with xanax.
basically i will try and find a combo that will work at night without mwking m3 feel like it just booted a McChicken in mh l4ft arm lol
again apologies for thie bing esuch a rough post, im being held up by the wall and the nbed, my buttler monkey seems to have vanished!
list of meds i took
xanax baclofen seroquel neurontin tramadol Clonidide
1.5mg 10mg 25mg 1500mg 100mg 10mg
my girlfriend kind of woke me as i was talking to her whilst asleep and was going on about how i'm attached to a huge metal machine like an MRI machine but more matrix style.
i managed to tell her that my legs were going numb and had pins and needles so she put pillows under my legs and was all good.
she tired to talk to me in this state but obviously i wasnt very coherent.
even now after being awake fiighting the sympons for an hour i am extreamly dopey and just not able to processs normal motor functions correctly, but other brain activirit is some normal
im unsure which drug is making me so epically drugged and slowed down as none of them on their own hace that effectl.
i have tried without neurontin and rhweffects are the same.
apologies for the poor grammar, i can barely see or understand what im talking aboot .lol
i will remove seroquel and neurtontin next time i dose, and se whar happed.
then i will try baclofen with clonidine, or baclofen with xanax.
basically i will try and find a combo that will work at night without mwking m3 feel like it just booted a McChicken in mh l4ft arm lol
again apologies for thie bing esuch a rough post, im being held up by the wall and the nbed, my buttler monkey seems to have vanished!
^^ lol
well that combo above didnt keep me asleep 100%, but when i woke i was able to fall back asleep very easily.
when i awoke after approx 6 hours sleep (gf wanted maccas lol) i was still very able to go back to sleep for a very good period.
i took that same combo without baclofen but with .30mg of clonidine at approx 10-11pm last night and awoke several times and found it a little difficult to fall back asleep. when i was at the chemist to get the baclofen, they noticed i was showing signs of low blood pressure, which i could feel myself. at work the morning after just wiping down some 10 foot tressel tables and moving them into a truck almost caused a whiteout in my head and i could feel my body struggling in such a way that i had low blood pressure.
so anyway at the chemist at around 2, they tested my blood pressure and it was 99/45 with heart rate 48bpm. so i would put that down to the high dose of clonidine combined with the few other drugs which obviously have CNS depressant effects.
i was never told of the correct dose or anything with any medication ive been given, so its been a bit touch and go, but the pharmacist i spoke to at wantirna was amazing and helped me more than any doctor i have seen lol.
so i did an experiment with my girlfriend who has similar issues to me, but no where near as bad and more mentally focused than my issues being neurological.
i gave her .10mg conidine and 10mg of baclofen and she was a bit retarded for a while then slept like a baby and woke when i forced her to wake up and she was not groggy, grumpy r anything.
at any time on the meds above and in the post above, i've woken feeling so fresh and revived except for the slightly low blood pressure symptoms.
so no i am going to have 3/4 tablet of conidine (7.5mg) and 10mg of baclofen.
im amazed that just these 2 meds can give me such a good night sleep with such a fresh feeling when i wake in the morning.
im yet to test daytime relief with say half or even 1/4 doses of either or a combo of some of the drugs i have, but im assuming i should get at least some slight relief.
for me, this is great news! i understand conidine and baclofen have side effects that can be severe, sleeping less than 3 hours a night can cause sever brain dis function and issues that effect everything in a persons life to an extreme degree.
im hoping through daytime testing i can also get some relief without drowsiness, so i will update again when i have done said testing.
so right now i am going to have .10 conidine (or maybe .5mg as i think my BP is a lil low) and 10mg of baclofen to see if it will provide sleep for me throughout the night.
this is great as i wont need xanax, neurontin or tramadal to sleep and can leave those meds to help with daytime symptoms when/if required.
again sorry for the rough post lol
well that combo above didnt keep me asleep 100%, but when i woke i was able to fall back asleep very easily.
when i awoke after approx 6 hours sleep (gf wanted maccas lol) i was still very able to go back to sleep for a very good period.
i took that same combo without baclofen but with .30mg of clonidine at approx 10-11pm last night and awoke several times and found it a little difficult to fall back asleep. when i was at the chemist to get the baclofen, they noticed i was showing signs of low blood pressure, which i could feel myself. at work the morning after just wiping down some 10 foot tressel tables and moving them into a truck almost caused a whiteout in my head and i could feel my body struggling in such a way that i had low blood pressure.
so anyway at the chemist at around 2, they tested my blood pressure and it was 99/45 with heart rate 48bpm. so i would put that down to the high dose of clonidine combined with the few other drugs which obviously have CNS depressant effects.
i was never told of the correct dose or anything with any medication ive been given, so its been a bit touch and go, but the pharmacist i spoke to at wantirna was amazing and helped me more than any doctor i have seen lol.
so i did an experiment with my girlfriend who has similar issues to me, but no where near as bad and more mentally focused than my issues being neurological.
i gave her .10mg conidine and 10mg of baclofen and she was a bit retarded for a while then slept like a baby and woke when i forced her to wake up and she was not groggy, grumpy r anything.
at any time on the meds above and in the post above, i've woken feeling so fresh and revived except for the slightly low blood pressure symptoms.
so no i am going to have 3/4 tablet of conidine (7.5mg) and 10mg of baclofen.
im amazed that just these 2 meds can give me such a good night sleep with such a fresh feeling when i wake in the morning.
im yet to test daytime relief with say half or even 1/4 doses of either or a combo of some of the drugs i have, but im assuming i should get at least some slight relief.
for me, this is great news! i understand conidine and baclofen have side effects that can be severe, sleeping less than 3 hours a night can cause sever brain dis function and issues that effect everything in a persons life to an extreme degree.
im hoping through daytime testing i can also get some relief without drowsiness, so i will update again when i have done said testing.
so right now i am going to have .10 conidine (or maybe .5mg as i think my BP is a lil low) and 10mg of baclofen to see if it will provide sleep for me throughout the night.
this is great as i wont need xanax, neurontin or tramadal to sleep and can leave those meds to help with daytime symptoms when/if required.
again sorry for the rough post lol
well, one 10mg baclofen and .25mg of clonidine each (me and my gf) made us fall asleep whilst cuddling, we really had not indication we were going to fall asleep so quicly, we were obviously feeling the effects of sleep creeping up but had no idea we'd fall asleep like that.
the only reason we woke up is because one of each of our arms were completely numb, and i also farted in my sleep lol.
i'd like to discuss dosage details with a doctor who isn't trying to rush me through the session like the one that gave me the script, and also discuss other drugs i can combine with it to treat my centreal apnea (non obstructive) and possibly a medication other than the RLS medication i have tried to treat my period limb movement disorder (moving arms and legs during all stages or sleep - ie. stage 1-3 and REM).
i feel im getting closer to at least treating my sleep condition to a point where i am able to function during the day time which will improve my day to day life/anxiety/depression etc so much that i would struggle to put it into words.
if i have good sleep that leaves me feeling normal and not fatigued, depressed, anxious or with a feeling of severe sleep deprivation (ie. cognitive or short and long term memory issues), then putting up with the pain during the day will be a walk in park!
the only reason we woke up is because one of each of our arms were completely numb, and i also farted in my sleep lol.
i'd like to discuss dosage details with a doctor who isn't trying to rush me through the session like the one that gave me the script, and also discuss other drugs i can combine with it to treat my centreal apnea (non obstructive) and possibly a medication other than the RLS medication i have tried to treat my period limb movement disorder (moving arms and legs during all stages or sleep - ie. stage 1-3 and REM).
i feel im getting closer to at least treating my sleep condition to a point where i am able to function during the day time which will improve my day to day life/anxiety/depression etc so much that i would struggle to put it into words.
if i have good sleep that leaves me feeling normal and not fatigued, depressed, anxious or with a feeling of severe sleep deprivation (ie. cognitive or short and long term memory issues), then putting up with the pain during the day will be a walk in park!
for those that are interested here is some info:
baclofen - http://en.wikipedia.org/wiki/Baclofen
conidine - http://en.wikipedia.org/wiki/Clonidine
baclofen - http://en.wikipedia.org/wiki/Baclofen
conidine - http://en.wikipedia.org/wiki/Clonidine
any reasons why?
im not disputing your understanding of the medication interaction, but i understand that the GPs im seeing may be mildy special (read retarded) in terms of ability to prescribe medications to fix my RLS but i would have hoped they would not be prescribing a pain medication that would have an adverse reaction with my existing medication, but its highly likely.
im not disputing your understanding of the medication interaction, but i understand that the GPs im seeing may be mildy special (read retarded) in terms of ability to prescribe medications to fix my RLS but i would have hoped they would not be prescribing a pain medication that would have an adverse reaction with my existing medication, but its highly likely.
i looked fucked because i spent most of sunday and some of monday morning in hospital after waking in the middle of the night with a temp of 38.7, a cold sweat and an uncontrollable shiver (borderline convulsion) which was combined with vomiting, low blood pressure and low heart rate of around 50bpm (test at the hospital around 45min-1 hour after waking) and coughing up blood.
so i had a very rough night and morning.
unfortunately there was no explanation as to what cause all of that as apparently the medication shouldn't have reacted in such a way and there was nothing else wrong with me.
cant remember if i told you that when i saw you leigh, but its worth noting in this thread anyway.
im feeling fine now, but my combination of current medication during the day (10mg baclofen 500mg neurontin) is causing me to have what i can only call partial blackouts.
it kind of causes me to close my eyes and sort of slowly lower my head asif im slowly falling asleep, but i can still think clearly and within 2-10 seconds im able to open my eyes and im back to normal.
its quite bizarre and will be discussing it with my other GP (dif practice) today as its causing me a bit of concern.
Any smart doctor I've talked to don't like to prescribe tramadol anyway because of its varying effects on people and on the serotonin system. They know people will tend to take more tablets than usual after a day or two (like 2 x the dose) and with panadeine forte they wouldnt like it but they know people with normal livers wont be affected by 2g of paracetamol (4 panadeine fortes), but if people go having 4 tramadols (400mg) they could run into trouble with or without mixing meds.
its just a bad shitty med and no one should be on it long term either.
these are just my opinions pieced together with what doctors have told me though before anyone gets up me
its just a bad shitty med and no one should be on it long term either.
these are just my opinions pieced together with what doctors have told me though before anyone gets up me
well guys, forget what you know about ALL pain medication...
the GP i just saw told me if paracetamol doesn't work for my condition, nothing will, no matter what...
so everyone, stop taking your endone, oxycodone, methadone, i hear even morphine has no effect on pain...
fkn over this.
no doctor is willing to discuss any medication, any treatment, any other conditions it could be or any other rate of conversation apparently...
it feels better when i bash my legs with a metal pole and i would feel happier if i had no legs.
i understand GPs are apparently only for diagnosing colds, coughs and sore elbows, but what am i meant to do for 2 months until i can see the neurologist?
going to the ER doesn't even help...
fuck my life
the GP i just saw told me if paracetamol doesn't work for my condition, nothing will, no matter what...
so everyone, stop taking your endone, oxycodone, methadone, i hear even morphine has no effect on pain...
fkn over this.
no doctor is willing to discuss any medication, any treatment, any other conditions it could be or any other rate of conversation apparently...
it feels better when i bash my legs with a metal pole and i would feel happier if i had no legs.
i understand GPs are apparently only for diagnosing colds, coughs and sore elbows, but what am i meant to do for 2 months until i can see the neurologist?
going to the ER doesn't even help...
fuck my life
i understand your pain man.
Have you tried poppy seed tea. It can get addictive as it contains multiple alkaloids like codeine and morphine being the main two actives. But can last all day so a redose isnt needed.
You can goto a drug clinic then and see a Dr and say youve been abusing codeine and poppy and popy seecd tea for 6 months. You can then get on a Bupe program and if you have a job you will be trusted with 7 days of take away's. Some people stay on them for years. They do a good job for pain and you don't need much. You could save take aways and just use a tiny bit of the lemon tasting shit tablet when in need. It also has anti depressant properties.
I mean it sucks it has to be with way but I don't want to see you seeking styreet heroin and what not or paying stupid prices for pharm pills to control your pain
The last option would be to try obtain Methohexamine, that new K analogue, a lot of people say it is useful at very low doses (10mg or so) to numb pain and be an anti depressant. Any more than 10mg though and you may get hallucinations or delusions or side effects. I mean im sure people get bad side effects from it at very low doses anyway but its a very last option kind of thing. Fuck GP's. I can read a few books, have MIMs online and a script printing software and be able to do what 90% of GPs do.. if i had a prescriber number... theyre not that smart. Most of their work is writing old peoples scripts or anti biotics for sick people. Maybe once a week they get a challenge and they just say go elsewhere. They also do not like high maintenance people with multiple disorders. I know this from experience.
EDIT: i just realised this is for RLS. Goto a different doctor and straight out say your last doctor wan ted to put you on clonazepam again for your RLS but you dont like benzos. Say your dad/uncle/mum/neighbours dog/whatever uses Repreve. That stuff works good for me so far and doesnt seem to build a bad tolerance? I take 250mics a night with 1/2 avanza, then another 1/2 avanza when i wake up during psychotic dreams.
Have you tried poppy seed tea. It can get addictive as it contains multiple alkaloids like codeine and morphine being the main two actives. But can last all day so a redose isnt needed.
You can goto a drug clinic then and see a Dr and say youve been abusing codeine and poppy and popy seecd tea for 6 months. You can then get on a Bupe program and if you have a job you will be trusted with 7 days of take away's. Some people stay on them for years. They do a good job for pain and you don't need much. You could save take aways and just use a tiny bit of the lemon tasting shit tablet when in need. It also has anti depressant properties.
I mean it sucks it has to be with way but I don't want to see you seeking styreet heroin and what not or paying stupid prices for pharm pills to control your pain
The last option would be to try obtain Methohexamine, that new K analogue, a lot of people say it is useful at very low doses (10mg or so) to numb pain and be an anti depressant. Any more than 10mg though and you may get hallucinations or delusions or side effects. I mean im sure people get bad side effects from it at very low doses anyway but its a very last option kind of thing. Fuck GP's. I can read a few books, have MIMs online and a script printing software and be able to do what 90% of GPs do.. if i had a prescriber number... theyre not that smart. Most of their work is writing old peoples scripts or anti biotics for sick people. Maybe once a week they get a challenge and they just say go elsewhere. They also do not like high maintenance people with multiple disorders. I know this from experience.
EDIT: i just realised this is for RLS. Goto a different doctor and straight out say your last doctor wan ted to put you on clonazepam again for your RLS but you dont like benzos. Say your dad/uncle/mum/neighbours dog/whatever uses Repreve. That stuff works good for me so far and doesnt seem to build a bad tolerance? I take 250mics a night with 1/2 avanza, then another 1/2 avanza when i wake up during psychotic dreams.
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