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Restless Legs Syndrome

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amitriptyline

goodie profile image
19 Replies

Hi all I have not posted anything for a long time. I have been on pramapexol for some time but they have not been working like they did at the start, wen to the doctors today she has put me on Amitriptyline 10 mg has any one ever been on them as I have not heard of them before.

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goodie
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Doversoul profile image
Doversoul

Amitripyline is bad news for most RLS suffers - it actually worsens the condition.

It's prescribed as a treatment to treat nerve endings - its supposer to suppress the pain that damage nerves suffer and reduce RLS (how I have no idea).

A similar treatment is Gabapentin - I take that (3x300mg) daily alongside Ropinirole

4x 0.5mg per day. Very rare that I suffer Rls and able to sleep well at night.

Try the Ami but if it gives you problems stop and think about Gabapentin.

goodie profile image
goodie in reply to Doversoul

thanks for your answer, I only got the tabs today Ive got to ween off the pramapexol starting tonight so I will see how it goes if I dont get any sleep I will go back to the doctors and ask about the Gabapentin

Kaarina profile image
KaarinaAdministrator

Hi Goodie

The majority of RLS sufferers avoid amitryptyline like the plague as it generally makes RLS symptoms worse. It is one of the medications listed to avoid on the RLS-UK website if suffering from RLS.

rls-uk.org/#!treating-rls/c... scroll down to Medications to Avoid.

Kaarina

Been prescribed that for pain and it sent my legs mad. Personally speaking all anti-depressants seem to exacerbate the problem.

nightdancer profile image
nightdancer in reply to

There are FEW antidepressants that do not make RLS worse, but the 2 classes of anti-d's to avoid absolutely are the tricyclics (Amitriptyline) and also the SSRI's (for example Paxil and Prozac) These are bad news, an not only will not help you relax, for 99.9% of us Amitriptyline WILL make the RLS ramp to a who new level you never even realized exists. That I can almost promise you. For ME, it was supposed to be for prevention of migraines, and it gave me the worst RLS of my entire life. please see kaarina's post, with the link "medications to avoid".

mollymoomoo profile image
mollymoomoo

hi i am on pramapexol when i had been on them for a while they stopped working and my doctors up the dose nows alls well again he told me he can up the dose only one more time so fingers crossed i also have been taking amitriptyline 10mgs for 10years or more alls well so far

Pippins2 profile image
Pippins2

Woooooow goodie! Your post put the fear of god into me.Amitriptyline is top of the no no list for 99%of RLS sufferers, For most of us it will ramp symptoms up to unbearable levels and to take it to help you withdaw from Pramipexole is a recipe for disaster.When you come off the Pramipexole your RLS will be severe as your brain will be screaming out for the dopamine and this makes symptoms of RLS severe and to then add in 10mg of Ami into the mix .Please dont do this! Go back to your GP , tell him/her to go to RLS-UK website and read up on RLS and meds that make RLS worse.Ask for a pain medication to help you wean off the Pramipexole , let us know how you go...Pipps x

Amitriptyline is an anti=depressant and one of the worse ones to take for any reason, when your have RLS. There are exceptions of course. All anti-depressants can make RLS worse for most people who have RLS. If you need to get off a dopamine med then it takes a strong pain med to help with the withdrawals. That means either taking Tramadol or morphine to help you through.

Doversoul profile image
Doversoul

Hi having read everyones comments/replies I would just like to clarify a couple of points. The majority of RLS patients suffer due to a drop in dopamine levels and taking prescribed dopamine tabs/patches increases the amount of dopamine to the brain. When too much dopamine is in the body - combination of what has been naturally produced plus tabs, and the body/(brain)/ nervous system can't absorb/ cope with that amount of dopamine - augmentation occurs.

RLS can also be due to nerve ending damage and possibly dopamine deficiency as well. In the instance that the Doctor prescribes Amitriptyline the approach is to sooth the nerve endings/ calming them in the expectation that this will reduce the incidents of RLS preventing sleep at night. Unfortunately, if your problem is dopamine defficency Amitriptyline doesn't help and exacerbates RLS symptoms and advances Augmentation.

A better more tolerant treatment for RLS due to nerve ending damage is Gabapentin, which can be taken along side Ropinirole/ other similar Dopamine agents/drugs.

I have suffered many years of RLS and tried all the known drugs discussed on this site and I have tried alternative (for me) money burning ineffective remedies/foods.

I have a simple test that seems to detect whether RLS is due to nerve damage or Dopamine deficiency. When the RLS is being experienced take 1 to 2 Paracetamol

tabs - give them time to get into your system. If you get some relief - it may not be for very long 10/20mins is typical - then suspect that the cause of your RLS is due to nerve damage that has been suffered over your adult life.

If there is no relief at all - dopamine deficiency is the probable cause of your RLS.

Since the Paracetamol test reduced my Ropinirole daily intake to 1.5mg and supplement that with (2x 300mg) Gabapentin daily.

Over the years I had been taking upto 4mg of Ropinirole and 2mg of Clonezpam daily.

I suffered Augmentation every 10 days and rarely slept at night, and suicide was regularly on my mind. I attended sleep clinics, wore oxygen masks at night - monitored for sleep Acmeia (incorrect spelling I know), had bad attacks of limb movement when asleep, depression due to exhaustion, mood swings and irritable - all affecting the relationship with my wife.

I am hoping to get off the Ropinirole by the end of this year and just go with the Gabapentin. My mood is good, I sleep well at night and my limb movement problems are a thing of the past. No Augmentation encountered for a good 6 weeks and I am hoping that will also be a non recurring event.

When I finally stop taking the Ropinirole, and depend on the Gabapentin I can adjust the amount I take daily up to 1.8mg per day and as I only take 0.6mg daily now, there is some leeway for me to find a suitable level. Should it be that my RLS condition is due to both dopamine and nerve damage, then I will revert to the levels of medication that are currently working for me.

So my final comment is - try to determine whether your RLS is due to dopamine deficiency, nerve damage or possibly both. When you know the answer then you will be on the right track to finding a RLS treatment that is right for you and lasting.

Struggle (with RLS) never give up, keep seeking !

Netty62 profile image
Netty62

I am on 30mg daily for facial nerve pain (associated with my scleroderma). I started on 10mgs then progressed to 20mgs then 30mgs. They have always made me sleepy & drowsy and cause my mouth to dry, this has got worse the higher dose I have been on. It does warn you that if you feel tired or drowsy you MUST not drive.

They have helped with the facial nerve pain but have had side effects. I still get restless legs but they are not as bad as they used to be.

Not sure if this helps but make sure you read the leaflet with the tablets so you know what to look out for and maybe need to see GP or Consultant.

Best wishes

Jeanette

nightdancer profile image
nightdancer

All I know is I had the WORST RLS of my life when my doc put me on AMi for prevention of migraines. Did not help the migraines and I was ready to throw myself out a window, literally, the RLS was so bad, and that is not an uncommon reaction to this class of meds. There are always one or two exceptions, but hard to find with this class of meds. Dopamine is NOT my RLS issue, and Amitrityline still makes my RLS on a level of 1 -10 a 100. Be aware.

birdcage profile image
birdcage

used amitriptyline before pramapexol, they worked for a while

Madlegs1 profile image
Madlegs1

I'm on .19 of Piramex. Having augmentation now. Dr has given me amytryptolin- 10mg. Despite me having shown him the RSL UK note. Now I'm in dilemma of do I try it tonight and find out whether its ok or not. I have a supply of Gabin and also Oxycodone. I could go with one of them if the Amy goes bad. Do I titrate down the Mirapex if I go that route- or cold turkey it.???

goodie profile image
goodie in reply to Madlegs1

how did you get on madlegs

in reply to Madlegs1

Madlegs sorry you are having augmentation from the Mirapex, but dont go cold turkey, you will most likely have withdrawals. The Oxy should help with withdrawals. but please ask your doctor first. I can only advise not actually tell you what you should do. I see you found out that taking the Ami was not a good idea.

goodie profile image
goodie

Amitriptyline my doc gave me them to calm me down I took 1 tablet I was up the whole night walking about I went back next day she said don't take anymore. There not good if you have rls

DonT profile image
DonT

I'm on 3 x 0.25 mg of Pramapexol per day and is working good was on 2 per day for 20 years and just in last 6 months have increased to 3 per day

Madlegs1 profile image
Madlegs1

Thanks All for kind comments. I didn't take the Amy. Tried paracetamol which worked ok. Went to Dr to get serum ferritin checked-- mad panic when it came back at 1183 ! So thatknocks out low iron as cause of RLS? ?

I had major spinal reconstruction 3yrs ago so high ferritin may be due to blood transfusions. 😂 Going to blood consultant to get that checked.

So - Mirapex is working ok and I top up with either paracetamol or if severe then oxynorm 5. Thanks again for advice- I was in a bad way at the time. Such panic when it seems meds won't work. Cheers all and keep the faith.

alwayshopeful profile image
alwayshopeful

I have been taking this for a week now, and no real improvement yet.

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