Anxiety

[Whymelord]

Hi,I've just recently been diagnosed with having bad anxiety and probably need something to help.can anyone please tell me if any of the meds prescribed will make my RLS worse cause I don't think I could take it any more. My daughter said she had to take a tab.called Sertraline just wondered if it would aggravate my restlessness. Please forgive me if this sounds intrusive.

[Joolsg]

Are you still on Pramipexole ?Most ant depressants, including sertraline worsen RLS so should be avoided.

You are probably suffering anxiety because your severe RLS is not controlled.

The benzo diazepines are RLS safe and can help with anxiety, and pregabalin will also help anxiety.

Now might be the time to get off Pramipexole and replace it with pregabalin which would help both your RLS and your anxiety

[Whymelord in reply to Joolsg]

Thank you Joolsg,I most definitely am suffering anxiety because of long term Pramipexole, I have started to half my 0.18,I take 2 co codamol at bedtime,still have the RLS and lack of sleep.i live in N.Ireland so I'm hoping my gp will prescribe what you say.its sad when one has to brace oneself before talking to a doc.when it should feel like they will listen and help one feel better.

[Joolsg in reply to Whymelord]

There will be better times. You have to take control though.Nearly everyone on this site has suffered augmentation of symptoms and most have managed to slowly get off dopamine agonists.

It's really hard, but possible.

Once off Pramipexole, the RLS intensity reduces and your daytime will be much better.

Then, once you've been off Pramipexole for around a month, the pregabalin starts to cover the day and night and you should get more sleep.

Please read all you can about augmentation, print off the NICE, NHS guidelines and the Mayo algorithm and refer to them when you talk to your GP.

You should also insist on full panel blood tests and ensure serum ferritin is above 100, preferably 250.

Read every post that refers to Pramipexole and you'll see you're not the only one that is suffering augmentation.

Don't rely on this GP to help you. Consider changing GP surgeries.

I saw a post about a good Irish neurologist and I'll try to find the name.

You could then push to see him.

[Whymelord in reply to Joolsg]

Thank you so much,can you believe my anxiety levels are raised even thinking about phoning my gp,getting past the blooming receptionists is a hurdle in itself, they want to know your medical history before deciding who you can see but your right I need to take control of the situation.

[Joolsg in reply to Whymelord]

I see that you're on 0.18 pills and have reduced by half. As gree sea girl says, reinstate the full dose and go SLOWER. Ask your pharmacist for the smallest dose pills possible ( I think it's 88mcg ) and buy a pill cutter. Elffindoe was on Pramipexole and advises reducing by half a 88mcg pill every 2 or 3 weeks. The slower the better. Dr. Buchfuhrer and Dr. Winkelman advise a MINIMUM of 3 months to withdraw. With each dose reduction, wait until things settle before reducing again.

Most will need an opioid like tramadol to help with the symptoms of withdrawal. The replacement meds, pregabalin, should be started around a month before the last dose of Pramipexole. Average dose of pregabalin is 150mg to 200mg but some need 300mg.

Try writing it all down first. Then do bullet points to get past the receptionist. Or do a long, detailed letter to the practice manager with a copy to the Royal College Of GPs.Definitely refer to the NICE &NHS guidelines on RLS and there's a good GP training course which makes it clear Pramipexole and Ropinirole are now LAST resort. There has been a successful legal case against a neurologist in the UK for failing to warn his patients of the dangers of Pramipexole ( Impulse Control Disorder and Augmentation) so if your GP failed to warn you or do regular reviews of Pramipexole to check on ICD and augmentation you could consider legal action for negligence.

I know the NHS is under pressure but RLS is a very serious disease, the drugs have terrible complications and GPs SHOULD make themselves aware of all this.

nbmedical.com/kiss/kiss-res...

[Whymelord in reply to Joolsg]

I would really appreciate it if you can find the name of the neurolgist🙏

[Joolsg in reply to Whymelord]

Sadly, the doctor is in the Republic. There does seem to be a chronic shortage of neurologists in NI. However, most are now doing phone consultations or via Zoom so, if you could afford a private consultation, you could ask to see Professor Walker at Queen's Square in London.The doctor who came recommended recently was Professor Shaun o'Keefe at Merlin park in Galway. Clearly a different country and healthcare system.

Apologies for raising your hopes.

[Whymelord in reply to Joolsg]

Thankyou Joolsg,I do know of people in N.Ireland who do go South for treatment, I'm not positive but I do think if I'm willing to pay I could go South.i can recall asking my gp if he could refer me to a neurolgist,said it could take a long time to get an app.and that was the end of that conversation. I intend to be more assertive this time.

[Joolsg]

I've reread all your previous posts and now remember that you have the really negligent GP who refuses to believe in augmentation of symptoms and wouldn't prescribe pregabalin or gabapentin instead of Pramipexole.As a result of that negligence you're still suffering a year later and the GP has caused your anxiety.

You really, really should now make an official complaint.

The NICE guidelines, the NHS guidelines, the Mayo algorithm all talk about augmentation and the dangers of Pramipexole and Ropinirole.

You can start reducing the Pramipexole yourself by half a 0.088 pill every 2/3 weeks and tell your GP it is poison and no longer first line treatment.

Put it in writing and ask family to read it over before you send it.

I'm so sorry you are being repeatedly ignored but you have to stop this or you will keep suffering.

Doctors are not taught anything about RLS and that is why you're not getting the help you desperately need.

Good luck.

[Greenseagirl]

One of the withdrawal symptoms from pramiprexole is anxiety - if it started or got worse when you reduced your dose it will probably be withdrawal. The general info is to reinstate to the last stable state and then taper more slowly.

[Eryl]

Have a look on youtube for videos by Georgia Ede and Chris Palmer on how diet can affect mental performance.

[Joolsg in reply to Eryl]

Won't help when your dopamine receptors are over stimulated and screaming from augmentation on dopaminergic drugs.Maybe when withdrawal is over.

[Eryl in reply to Joolsg]

Good reason to give up on drugs then.

[Joolsg in reply to Eryl]

She's trying to get off Pramipexole. If you've never been on dopaminergic drugs, you're probably someone for whom iron, supplements and diet will work. Sadly, once you've been prescribed these drugs, it's likely that your dopamine receptors have been permanently damaged. Diets etc are then unlikely to help.

[Eryl in reply to Joolsg]

The most important thing about diets is to take out the things that are causing the damage, not taking supplements to make up for the damage being done.

[SueJohnson]

I would suggest gabapentin rather than pregabalin because you can increase it by smaller doses (100 mg). Once you find out what dose works you can switch to pregabalin if you want. I would start it at least 3 weeks before you are off pramiprexole since it takes at least 3 weeks to be effective, although it won't help much until you are off pramiprexole and your withdrawal symptoms have subsided.