hi guys
im a 24 year old male of good health with an active job and have had mild RLS since being a teen but thought it was simply growing pains.
in the past 2 years my RLS became unbearable and i was going for 2-3 days on end with no sleep.
after 6-8 months of going to same GP describing my symptoms i finally got a sleep study to confirm my condition.
before i go any further i will attempt to describe my RLS.
i have a aching uneasy feeling in my lower legs that is only relieved when my muscles are stimulated through exercise, the symptoms return straight after say stretching my muscle.
the aching is an 8-9 on a pain scale and at times is a sharp pain and is through all lower leg muscles. i get the occasional twitch but it is more an aching, at times burning and throbbing feeling.
i have had blood tests done and tried all normal RLS vitamins and supplements before going to my sleep study with no change.
i was sent to a specialist when the sleep study was done and put on sifrol which i steadied on a .750mg dose before bed each day.
this helped for maybe a week, but after that i had more of a burning throbbing sensation than before.
i can almost describe the pain as having phantom leg pain whilst still having legs.
at times all i want is to cut my legs off at the knees to see if it will give some relief
the sleep study showed i had RLS/PLMD before sleep and during sleep with movement in legs happening on intervals of 5-10seconds for upto 30-50 seconds at a time combined with no obstructive sleep apnea to the degree that my body would stop breathing for upto a minute at a time on a frequent basis resulting in a sharp awakening with raised heart beat.
with the RLS and sleep apnea combined i find it hard to get to sleep, wake easily (say if my partner moves and touches me in her sleep) and find it hard to stay asleep.
i average 5 hours of sleep a night which is broken up as many as 3-4 times unless assisted by sleep aids.
i have now also tried nueronten (gabapentin) with no luck.
i have done alot of research in terms of how RLS can be caused and why and how certain drugs interact with the brain and the condition.
i have used GHB/GBL/1-4b heavily in the past (4.5-5ml charges) and also mild use of ice - usually at the same time, both for a perdiod of around 4 years, which can damage or change the way the gaba-b and GHB receptors in the brain work under normal circumstances, so after reading for hours on end i think it may be a link in my condition.
when i take GHB, i have no symptoms of RLS whilst i on the initial 'high', but towards the end of a dose or if i would stay up overnight taking GHB, i would get RLS symptoms heavily in my legs and also arms.
if i had some form of stimulant and did not top up on G but stayed up on the high from the stimulant, i would not get RLS until the stimulant wore off.
this to me suggests an issue with dopamine in some way in some part of my brain.
i have had the symptoms even after a period of a year where i was clean, so it is not a withdrawel symptom only, please no flaming for trying to fix this issue whilst i mention drug use, as i said i have had this condition since i was a teenager, and it happens when i have been clean and with correct diet and nutrients.
the next drug to treat the condition that i am going to try is sinemet, which as i recall is used to increase dopamine available in the brain due to the way ldopa combined with carbidoda will cross the blood brain barrier.
at this stage, the only drug that still helps me sleep is xanax, of which i require only 1mg to sleep, but i will wake during the night and feel drained during the day which is not what i want as im a labourer by trade.
but i have to resort to buying this from other people as doctors will not prescribe it to me, nor will they prescribe ANY other sleep aid.
i know there are others with symptoms that are different, but we are all here for the same thing.
i would appreciate hearing the thoughts of others with this condition as i am finding it increasing difficult to find anyone anywhere that will believe what im saying.
im a 24 year old male of good health with an active job and have had mild RLS since being a teen but thought it was simply growing pains.
in the past 2 years my RLS became unbearable and i was going for 2-3 days on end with no sleep.
after 6-8 months of going to same GP describing my symptoms i finally got a sleep study to confirm my condition.
before i go any further i will attempt to describe my RLS.
i have a aching uneasy feeling in my lower legs that is only relieved when my muscles are stimulated through exercise, the symptoms return straight after say stretching my muscle.
the aching is an 8-9 on a pain scale and at times is a sharp pain and is through all lower leg muscles. i get the occasional twitch but it is more an aching, at times burning and throbbing feeling.
i have had blood tests done and tried all normal RLS vitamins and supplements before going to my sleep study with no change.
i was sent to a specialist when the sleep study was done and put on sifrol which i steadied on a .750mg dose before bed each day.
this helped for maybe a week, but after that i had more of a burning throbbing sensation than before.
i can almost describe the pain as having phantom leg pain whilst still having legs.
at times all i want is to cut my legs off at the knees to see if it will give some relief
the sleep study showed i had RLS/PLMD before sleep and during sleep with movement in legs happening on intervals of 5-10seconds for upto 30-50 seconds at a time combined with no obstructive sleep apnea to the degree that my body would stop breathing for upto a minute at a time on a frequent basis resulting in a sharp awakening with raised heart beat.
with the RLS and sleep apnea combined i find it hard to get to sleep, wake easily (say if my partner moves and touches me in her sleep) and find it hard to stay asleep.
i average 5 hours of sleep a night which is broken up as many as 3-4 times unless assisted by sleep aids.
i have now also tried nueronten (gabapentin) with no luck.
i have done alot of research in terms of how RLS can be caused and why and how certain drugs interact with the brain and the condition.
i have used GHB/GBL/1-4b heavily in the past (4.5-5ml charges) and also mild use of ice - usually at the same time, both for a perdiod of around 4 years, which can damage or change the way the gaba-b and GHB receptors in the brain work under normal circumstances, so after reading for hours on end i think it may be a link in my condition.
when i take GHB, i have no symptoms of RLS whilst i on the initial 'high', but towards the end of a dose or if i would stay up overnight taking GHB, i would get RLS symptoms heavily in my legs and also arms.
if i had some form of stimulant and did not top up on G but stayed up on the high from the stimulant, i would not get RLS until the stimulant wore off.
this to me suggests an issue with dopamine in some way in some part of my brain.
i have had the symptoms even after a period of a year where i was clean, so it is not a withdrawel symptom only, please no flaming for trying to fix this issue whilst i mention drug use, as i said i have had this condition since i was a teenager, and it happens when i have been clean and with correct diet and nutrients.
the next drug to treat the condition that i am going to try is sinemet, which as i recall is used to increase dopamine available in the brain due to the way ldopa combined with carbidoda will cross the blood brain barrier.
at this stage, the only drug that still helps me sleep is xanax, of which i require only 1mg to sleep, but i will wake during the night and feel drained during the day which is not what i want as im a labourer by trade.
but i have to resort to buying this from other people as doctors will not prescribe it to me, nor will they prescribe ANY other sleep aid.
i know there are others with symptoms that are different, but we are all here for the same thing.
i would appreciate hearing the thoughts of others with this condition as i am finding it increasing difficult to find anyone anywhere that will believe what im saying.
I'm not actually trying to help you doc shop here, but i suggest going to your family/local GP, and suggesting that you did some internet reading on drugs of benefit for RLS, and Clonazepam was mentioned as a great treatment. Also i suggest that Lyrica could be of help (pregabalin)
