Long story but will do my best to sumarize I come to this forum out of desperation to get some decent sleep. Since becoming healthier and losing 3st (now 18.0st) I have found I have RLS, originally i was put on .088 1 tablet a night, which within 3 months increased to 3 tablets a night and 3 in the because it started up at work too. Now 6 months or so on i am on 3x.088 tablets per day that are 3 times bigger my previous ones so a (9x dose? - not sure on that). But i find that shortly after taking the tablets my legs start up, then about 3 hours later (after no/very little sleep for some reason) my legs start up again and i can often end up on another tablet overnight.
I also find that if I am tired when i get home and take a 5 minute nap, I get wierd palpitations and my legs immediately go crazy and i HAVE to wake up and move around. Something i feel should be measurable by a neurologist - but my doctor refuses to send me to one.
My doctor seems reluctant to give me anything different to Pramiprexole but from what i am reading Gabepentin seems like a possible option?
Am i doomed to no sleep and insane legs for the rest of my life? Any help greatly appreciated because frankly MY UK Doctors don't seem to care/know anything about this and refuse to send me to a neurologist. They simply don't seem to realise/care how debilitating this really is
Thanks in advance
- 15 years on Sertraline 50mg
- 10 years on Omeprazole (not sure)
- Needed CPAP for 1 year because of really bad APNEA
- Lost 3st got rid of CPAP/Omeprazole/Sertraline through slow decrease
- Started with Restless legs
- Put on .088mg 3 tablets at night 3 hours before bed.
- 3 months later increased to 3x.088 3 times a day (bigger tab)
- now syptoms seem worse and come on much more frequently, i feel it is due to the tablets not just the disease as its in sync with the increase.
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Read my post about ignorance, then think about your doctor. The label is well suited!
Firstly, pramipexole tablets with 0.088mg in them all have that, only 0.088mg, no more or less.
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The size of the tablet has nothing to do with the dose of the drug. They're just different manuafacturers. When I took pramipexole, it was geberic pramipexole, not Mirapexin or other branded version. They came in all shapes and sizes, it got quite confusing. However, I can assure that a bigger tablet doesn;t mean a larger dose.
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What you're experiencing appears to be a classic case of augmentation. Since your symptoms, which I can assure you are not unusual, begin shortly after taking the tablets, this appears to be a particurlarly severe case.
Your doctor is probably one of the many who haven't heard of augmentatiion. This I imagine is purely a lack of knowledge rather than a failure to care or negligience. Although, it would appear that your doctor is doing you more harm than good.
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I suggest you first go back to your doctor with some information about
- augmentation
- Gabapentin
- Guidelines for referral to a specialist.
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In my opinion of your doctor stills refuses gabapentin and/or refuses a neurology referral, then you have casue for a complaint.
Secondly, as you will read on this forum Sertraline, an SSRI antidpressant, like all SSRI and tricyclic antidepressants is known to trigger RLS or exacerbate it. Further evidecne of your doctiors ignorance. Furthermore, Omeprazole can cause RLS, so if I read it correctly that you have stopped these medications then you are apparently wiser than your doctor.
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However, having taken an SSRI for some time and becasue you are augmenting on pramipexole, it may take a considerbale time for the effects of the SSRI to wear off.
In addition, proton pump inhibitors, like omeprazole, casue RLS by interferring with the absoprtion of rion and vitamin B12 in the gut. Low iron can cause RLS in itself and vitamin B12 deficiency can excarebate it.
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If you took omeprazole for some time you may still be suffereing the consequencea of this.
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You could perhaps persuade your doctor that you need your "ferritin" and vitamin B12 levels checking. Ferritin is a measure of the amount of iron that's available to your brain, NOT your blood and low ferritin can indicate a problem with Brain Iron Deficiency which can occur in the absence of iron deficiency anaemia and is associated with RLS.
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If your doctor HAS tested your ferritin, as is routine with RLS, if it is less than 100mcg/L, you may benefit from raising it. If your doctor said it was "normal" and you didin;t need iron. This may be further evidecne of ignroance. "Normal" can be less than 50mcg/L. I had years of being told my ferritin was normal and once it was only 26mcg/L.
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You could take iron and vitmain B12 supplements without consulting your doctor, but taken orally, if the omeprazole has affected your ability to absorb these, then it might not be much help.
I will add another post in a moment with some links to some useful information, you could try printing some of these out and taking them to your doctor.
Thanks manerva, I think your post got cut off? Missed the bit about prami. Seems we both live in Lancashire so I guess I'm going through the same issues with doctors you did :/ I'm lucky really it's just rls and not real pain but it doesn't feel lucky when your struggling every night to sleep. Do you reckon it's worth seeing a private neurologist and do you have any recommendations/way to find a good one?
Wow its funny how knowledge here trumps doctors lol. I did actually push to get ferritin levels checked as my mum suffered badly at the smallest dip in iron levels. But apparently its 99 so no need for any action. I suspected the omeprazole and sertraline were a factor, particularly coming off them! Thanks in still reading and absorbing
Regular iron lab tests my register normal but the brain barrier is of tilt from chemical and may be low. For instance Hypothyroid may affect accummulation of magnesium that will increase restless leg syndrom, even if the magnesium test is normal The same thing may be true of iron. See my post for impirical starting trial point.
I read your heart breaking story. Let me share mine. Be advised, I see my Movement Disorder Neurologist freshly off the press of training, next week. I have lots of neck, back and Nursing home time from Hypercalcimia (causes strange weakness) I m also a 90 yr old combat aidman in Korea 1951, 3 brothers and 3 sisters died before 90 yr old from cancer. I am a retired Physical Therapist of 40 yrs. I took SS at 70 yrs old. After a bowel blockage in 2016 I was placed in the hospital with both Hypercalcimia and Restless leg syndrome. I did no9t dream of motion, so I had lightening bolt cat like jerks. The hospital internest said mine fi the Periodic Leg movement awaken category )American Academy of Sleep Disorders still calls daytime jerking RLS. But, depending on researchers it is called RLMA or RLMW (Awakeness A 0r W). Now I was started on a Parkinsons: brand medicine they found helped restlessl ,leg syndrome called Ropiinirole n.5 mg This help immediately but I started day time episodes. Please NOTE. Any time I got my feet up in a recliner or lay in bed in the AM, jerking began. I started Gabapentin 300Mg 2 at night. I* now take 1 of each 2 hrs before meals (noon 5:00PM.) and 2 of each at 1 hr. before sleep. I do not take one for early morning. When they come softly at 5:00AM. I get up and walk them off and go back for an hour, Be advised, awakeness and on your feet diminishes the arousal state and inhibits symptoms. There is only 1 study on day time symptoms.(Effect of Rest-Duration-Time of day and their interaction on Periodic Leg Movement whole AWAKE in Restless Leg Syndrome. NO ONE GIVES MEDICATION LEVELS FOR AWAKENESS. The American and World Academy/Association. I am with out the jerks but there is something wrong. My smal computer my kick me off. I will stop and sign back on
#4 Lumped together, mo9t movement disorders should give this list a "look see"
1.Diabetes 2. Iron Deficiency 3. Spinal cord Injury/soft facet or spinal cyst growths 4.Sleep Apnea. Narcolepsy 5. Urema 6. Medicationh Sinenet, antidep0ressants, 7. Anema-Lo9w Hemaglobin,8. Medication 9. Brain Tumor. I will mention 10,11
10, Augmentation. So clent on ropinrole have improved from going off of hiigh doses. Normal maximum is about 4.0 mg. With ine at each meal and 2 at night, I am o9n 2.0 ( 1 pill=.5 mg) 111. The thyroid and thalamus do that chemical affects on the brain barier, particularly hypothrodism. This affects too much magnesium build up in brain from retention in the brain barrier. This is not from a quote but google brain barrier magnesium retention. This would seem to9 me that an Indrocronologist (sp) should be part of the study. See #5
You may have heard of the National Institute for Health and Care Excellence, (NICE).
Your doctor should have heard of these, if your doctor fails to take notice of what this organisation says he could be accused of bad practice. If he hasn't heard of NICE then he may in fact, not be a doctor at all!
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NICE issues evidence based guidelines for UK doctors on how to deal with specific conditions.
The guidelines state that ferritin levels should be at least 50mcg/L.
The NICE gudielines identify treatments for RLS, the two main first line treatments it identifies as Dopamine Agonists and Alpha2 delta ligands. The latter being gabapentin or pregabalin.
The guidelines also state that people should be made aware of the consequences of taking dopamine agonists i.e. loss of efficacy, augmentation and Impulse Control Disroder. If your doctyor refuse to change your medication then he is simply ignoring the national guidelines which is unacceptable.
The guidelines also give criteria for referral to a specialist and you apear to fit these criteria and should therefore be referred.
Here is a link to the NICE guidelines on RLS, you can print it out.
Hoepfully your doctor wll discuss these guidelines with you, if they refuse and you're brave enough I suggest you say you will report them to the British Medical Council.
I'm very sorry, if you cannot access the web page for the NICE guidelines it will be because the site is only accessible in the UK and you do not live in the UK.
Although the information may be of some use to you, it is only applicable to doctors in the UK.
Additionally the information is not in a form that can be downloaded and also unfortunately it is not possible to attach files to posts in this forum.
However the information should be available in other sites, the advantage of the NICE guidelines is that UK doctors cannot simply ignore them, as they could in other countries.
I'm afraid I do not copy and paste whole web pages, but if you have specific questions I could post brief exverpts.
My mother is suffering from RLS from last 7 years. I wanted to know about performance of Pramipex ER 0.375 mg.Also side effect of Lyrica 75mg 2 times a day.
2nd part to my story. Regular Restless leg Syndrome is called Willis-Ekbom Disease (WED). Serum Ferren Concentrations lower than 45-50 mcg/l (ng/ml) has been associated with increased serverity of Restless Leg syndrome ( AQ Quote). Replacement (quote) suggests 75 mcg/L (5-7) iron therapy--Caution, may over load especially unsuspected hemochromatasis. Suggest: begin with 325 mg orally every other day and combine with Vitamin C 100-200 mg or small glass of orange juice.
Please note: I have rad that normal levels of iron tests MAY NOT reveal thyat the Brain barrier has prevented proper transmission across the cells and this may result in LOW IRON and, and, and, HIGH MAGNESIUM. Conversly, high brain content of magnesium behind the brain barrier may also show normal blood tests for magnesium out of the brain. I mention this because (quote)High brain content of magnesium will increase restless leg syndrome. Paradoxically, use of a high grade Magnesium Citrate gell on the legs at night has helped my leg jerks at night when I was on lower doses of ropinirole .5 q and gabipintine. 300 mg. For us in day time episodes, .someting is wrong. I will quit and go to #3
#3 I should inform you,there are two categories that may side tract most of you.The term (1) Myoclonic jerk like a cat is what I have. However I DO NOT HAVE MYOCLONIC SYNROME. This disease has a CONSTANT episode of movements initiated in the head and trunki and more upper extremities.(2) This term of DYSTONIAi8s similiar with CONSTANT movement histories. They aresometimes used together MYOCLONIC DYSFUNCtION DYSORDERS. .I have a poor computer, see #4 for testing.
Hi Bill, thanks for writing this. I see you have problems with your computer. Nonetheless, I think I have understood what you've written and it does appear well informed.
I hope you manage to further improve control over your movement symptoms and improve your quality of life.
If you haven't already considered it, I suggest you stop taking ropinirole and increase your gabapentin.
The ropinirole may be causing you problems and 300mg gabapentin, if that's all you take, is probably just not enough.
Thank yo.u I know y6u are well informed. The Gabapentine is taken for my servere spinal Stenosis and post cervical and post lumbar surgeries. It is listed as a antiseizure and nerve healing medications. Thus, the brand is Neuontin that makes the 300 mg time release capsules, This brand level is for neuotrnsmitter(Hypothyroid ) neurotransmitter . You are talking about the Horizant. brand that makes the 600 mg slow release for RLS more specifically. It is not unusual to to progress at night to 1800. Graliseis is a third brand used for Herpes Zoster (Shingels) The only one authorized for RLS is Horizant. My use of Neuontin Gabapentine Es. is to compliment the ropinirole to make it more effective. Since it serves two purposes, I need to wait until the new Neurologist who specializes in Movement disorders joins the Santa Fe group. I specifically researched these brand names. Only Horizant is authorized for RLS. They are alol Gabapentine, but each o9ne has a different form of delivery. i,e, capsule mg or size and type of pills. In U.S augmentation of the ropinrole .5 mg taken above the 4 total is the norm. I am at 2 and at 1200 total for gabapintine. I take tramadole 50mg twice a day. I watch drug levels very closely. Tramadol allow me to cut pain from 8 to 4 when standing with a walkerand leaning 30 degrees
at the waist. I got off of heavy doses of opiates, I go to the gym 2 times a week.
Dopamine agonists e.g. ropinirole commonly cause augmentation which, if you have RLS symptoms any time of the day then you probably have augmentation.
The usual advice is to stop taking the dopamine agonist.
Here in the UK, gabapentin enacarbil, Horizant is not accessible, we don't have it.
We can either have generic gabapentin or generic pregabalin, not Neurontin, not Lyrica etc.
Gabapentin is licensed here for Seizures, peripheral neuropathy and mulitiple sclerosis.
It is used off label for RLS and PLMD and is tecommended by our National authority.
Hence, my suggestion that you stop. ropinirole and increase.your gabapentin.
It"s only a suggestion, I don't expect anyone to passively comply with me. It's a choice you have to make yourself.
I take gabapentin for RLS and neuropathy. It works for me. It does have side effects and consequences which for me are more acceptable than chronic insomnia and involuntary twitching.
Luckily, Ionly need a low dose i.e. 600mg, many people need at leasy 900mg.
I take immediate release capsules 300mg. Since I have no other conditions gabapentin affects nor that affect gabapentin I don't need the suoervision of a doctor.
Good doctors admit they don't know everything and are prepared to discuss any information you give them.
Ignorance is not a crime. My own GPs have admitted their ignorance about RLS to me and have been wiling to discuss traatment options and when necessary, refer to a neurologist.
If your doctor does NOT do this, then, even if you do not highlight their failure to the appropriate authorities, you should at least consider changing GP.
If you need any more information, this forum can help.
You please do listen to whatever Manerva just said. And please mention where you live perhaps someone could come up with a good experienced neurologist recommendation
I am waiting to see a neurologist/sleep clinic at the Hallamshire hospital in Sheffield which is not too far from Manchester I can let you know hw I get on after my visit which will hopefully be March/April time
Many of us here understand what you are enduring, as we have endured it too.
The horrors of augmentation caused by pramipexole have been known for many years, and it is difficult to forgive doctors who keep increasing the dose to the detriment of your brain.
Quite apart from the lack of sleep caused by the disease, pramipexole can cause chronic, severe insomia - it did with me.
Augmentation and insomnia are a sign that you need to change medications as soon as possible.
For some of us augmentation occurs rapidly, within a few months.
Folow up all the links that Manerva had given you, print out the best, and take them to your doctor. If he will not listen, fire him.
If you can afford $45, join the RLS Foundation. It is dedicated to research and the dissemination of knowledge. You need to empower yourself, and be your own best advocate. Sadly, we cannot trust the medical profession to advocate for us. You need to put yourself into a position of power, where you an enter a consulting room as an equal, not a victim of ignorance.
Insomnia is insane right now. The dose I'm on right now IS stopping the legs but it's also killing my sleep! But I'm seeing my doctor again Tuesday with an eye to gabapentin and referral to a specialist. These links and notes will help I hope and I can't thank you all enough. I most certainly will be joining the rls foundation. I'll will post back with news. Thanks again
#5 It is suggested y6ou see 1. Neurologist and an Indrocronologist (Brain barrier-Magnesium)a nd (Brain level Iron)
2, MRI cranial and spinal 2. EEG 3. EMG. 4.Lab tests, 5. Medication review (augmentation) 6.Psychologist and full family history. In some cases going way back with a considerate understanding pchyiatrist (sp) may be suggested. (pallative measures such as warm baths, massage, electrical stimuation Physical Therapy equipement and programs, trial accupuncture and energy releasing manual therapy or magnessium gel at night have shown temporary relief 0rreduction in symptoms.) I forgot the most important, to me, See a Movement Disorder specialist who9 know more than Parkinso9ns, Ataxia, and childhood disorders Not all are qualified in your area, See #6 for my final comment
#6 First of ll, if you have not read all the posts from Manerva, you should. She mentions many more things than I have in my 5 personal presentation . But, still yet, NO ONE< NO ONE< NO ONE in rhe entire medical field has addressed Awakeness with Jerking Legs . The abreviations are PLMA or PLMW( This is recognized by researcherssuch as Ferri and Bruni or Manconi and Cosentino, Strmbi and Zucconi) as movement in awakeness in time-duration of tireness during the day. RLS takes place more in the morning. PLMA takes place more in the after noon, My experience is that any time after lunches when YOUR FEET ARE UP in a recliner or in bed and you hit that dosing mood before sleep,, my cat jerk lightening bolts start. They hurt. I control with Ropinirole and Gapaentine(see propr posts)
MY ADVICE: Keep looking for your self NO ONE< NO ONE has done studies on Awakeness movement medication. The World and American Academy of Sleep Disorders has assigned it a Restess Leg Disorder not a Periodic Leg disorder. So, try to google daytime or awakeness Leg movement Disorders. You can"t. My advice is to keep looking for obvious diagnosis with your inquiry and personal follow ups. It looks like our area has been allocated to the back burner. DROWSNESS CENTERS AND THEIR DYSFUNCTION NEED TO BE STUDIED . I DON'T WANT TO BE SHUTTLED TO SLEEP DISORDER SITES. If the Sleep people are listing RLSA/RLSW as a sleep disorder, they need to up-grade what medicine or the same and what amounts during the day .They have not .SHAME ON THEM!! Do they really care?
Bill I really hope you can get some positive action. My symptoms are mild compared with yours and manerva and I still find them unbearable! I feel for you guys because I know its 100x worse for you xx But at least I don't suffer pain or a chronic condition to go with. It makes me realise how lucky I am really. Although when I'm on the fourth 3am wake up and have to be up for work at 6 it doesnt really feel that way! Best wishes to you all
You need to see a neurolotgi8st or Movement dysorder clinic ror some guide lines.
RLS or awakeness leg movements that are mild may be helped with thyroid or iron testing. Make sure you see a specialist who know all the testing. Women and harmones effect neurotransmitters So, OB Gyn may be in order. The main thing for you, is don't listen to our advice, Seek an on site profession. Google your location for a Neurologist specializing in movement disorder. Do not, do not jump into medication first.
I may be wrong but you may be confusing PLMA and RLS. Contrary to what is commonly written, myself and many others in this forum have suffered involuntary movements whilst awake. You will see them described as "jerks" or "twitching".
The pattern of movements observed during such episodes are different to PLMD, more often observed during PLMS.. A neurologist agreed with me about this.
These involuntary RLS movements usually occur at night, but. ONLY when awake. If they occur during the day, as it once was in my case, then this is probably augmentation, as it was in.my case.
Since, stopping all dopamine agonists completely and taking sufficient gabapentin I now rarely get symptoms. .Any symptoms I do get now only happen at night.
In the event that you do have PLMA which I believe is quite rare, the treatment is accepted as being the same.
If you do get jerks, morning, noon and night, you could try taking the gabapentin morning, noon and night. Say 300mg each time.
I wish I knew the answer. I know this must sound silly but have you tried coffee about an hour before bedtime? A couple of times this worked for me. Warm to hot baths will temporarily stop it but most of the times it comes back. When it’s warmer out, I jump in the pool and either walk till it calms down. I know here in the US the arthritis foundation has inexpensive water aerobics classes which should do the same. I have experienced increase in RLS when I took large doses. Speak with your MD to see if decreasing it might help. I am also on Gabapentin as needed and have found no relief for my RLS. I am a RLS sufferer and can tell you what works for me. The docs here can’t figure it out either.
See my update below Coffee before bed is exactly what I did but I also took changed my tabs to 2 before bed and skip the morning one. Instead of 3 through the day. I had a feeling my system was being flooded. Works for now
Just a quick update. Full night's sleep last night and no rls. Was it just I was so exhausted, was it the caffeine and sugar fix or was it because I decided to take two tablets before bed instead of 3 through the day (flooding my system). I really don't know but I will still be speaking to the doctor tomorrow I had forgotten what real restful sleep was!!
So here's a question @Manerva should I still take 2x prami if this continue to work for me ie do the dangers outweigh the benifits without a proper neurologists advice (rather than the doctors) ? Of course I will speak with doctor too
I would start taking supplements this second-it has made a huge difference for me. Your body is clearly lacking the necessary minerals and vitamins. Try these until you get the help listed above: approximately 600-800 mg each of Magnesium citrate and mag glycinate (evenings and you can experiment or research the doses), 600 mg calcium citrate, Life Extension folate and B12 combo, and...separately on empty stomach-vitamin C and iron (ferrous sulphate). Vitamin d3 always.
Be sure to google the Johns Hopkins research, too.
I have done a lot of research on various reputable sites. I would like to get off pramipexole myself and I'm working on it. I don't take more than 2 tabs a night-no matter what. when I do have augmentation, I switch to ropinirole and that works right away.
Hope this helps you and some other folks! The misery of it all is staggering. If your doctor doesn't know any of this-get rid of him or her immediately.
I certainly don't want to minimize your troubles and suggest mine are worse or equal to yours. I feel for you. I've been an RLS sufferer for 6 or more years. Initially I was taking gabapentin. Got up to 2700 mg a day treating neuropathy and RLS. It made me really loopy so I gradually got off of it. Started taking Pramiprexole for RLS and just dealt with the neuropathy. Started to have to increase the dosage and if I missed a pill it was terrible. Finally decided to get off everything and over two months I gradually reduced the dosage until I was off. It was not easy. A lot of sleepless nights. I've been off for a month and can go to sleep without medication. My wife says I still move around a lot on certain nights, but so far so good. Point is...the medication made my problem worse.
Thanks to all who replied. I went to see my doctor who has referrered me to a neurologist - or being as this is the NHS a telephone appt to arrange to see one in 40 days?! What the.. NHS?! Anyhoooo now having a dropper of CBD OIL and two prami 0.088/0.125mg before bed and things have improved. I'm under no illusions though! Symptoms are better at night but worsening at day thanks to meds.
This really is a debillating disease and not enough has been done to isolate its cause. Why on earth do 1 in 10 UK and I think US citizens have this disease?? Has it always been the case? Has our technology / food changed adversely?
TO all those suffering my heart goes out to you. Because my tiny taste of this horrible affliction has left me scared for the future. But I will plod on, make my donation to the rls foundation and pray that a cure is found for us all.
@Manerva and the other members of this group are incredible giving so much of their time, energy and wisdom.
Thanks for the update. Always good to hear how things develop. Please keep in touch.
One advice for you when you go see the neurologist: prepare yourself! Read all you can, know what you would like to get from this dr, and certainly know what you do NOT want, and bring crucial info/papers in print.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
I come to this forum out of desperation to get some decent sleep. Since becoming healthier and losing 3st (now 18.0st) I have found I have RLS, originally i was put on .088 1 tablet a night, which within 3 months increased to 3 tablets a night and 3 in the because it started up at work too. Now 6 months or so on i am on 3x.088 tablets per day that are 3 times bigger my previous ones so a (9x dose? - not sure on that). But i find that shortly after taking the tablets my legs start up, then about 3 hours later (after no/very little sleep for some reason) my legs start up again and i can often end up on another tablet overnight.
Easing my RLS symptoms
RLS in hospital - my experiences
My ways of coping, or not, with RLS
pramiprexole Withdrawal
