Neurologist

[Gizmo1coco]

I’ve managed to get a cancellation for a neurologist on Tuesday. I’ve stated my withdrawal of pramipexole 2weeks ago which has been horrendous for 8 days but slowly getting better. I’m going to ask for opioid to help with withdrawal. Ask for an iron infusion. Is there anything else I should discuss. I’ve also considered medical cannabis. I have contacted a clinic about this but they need to access my medical records so I though I would wait till after my appointment on Tuesday. Does anyone take it and does it work for you?

[Joolsg]

Well done for getting this far. Every day will be better from now on.Medical cannabis was good for me during the 2 weeks after stopping dopamine agonists. However- it doesn't stop my RLS. It knocks me into a deep enough sleep for 40 minutes. A few people say it helps RLS. But I found it works better on sleep.

You are nearly through the worst. The first 2 to 3 weeks is hell. Every day it will get better.

Take ferrous bisglycinate every other night. Buy some co codamol ( paracetamol with codeine).

Did you start gabapentin or pregabalin yet?

A neurologist is likely to prescribe these. But take them at night only. Most GPs and neurologists prescribe them 2 or 3 times a day. The correct prescribing method is on RLS-UK website.

Ask the neurologist if he is aware of the Mayo Clinic Algorithm and the new American Academy of Sleep Medicine Guidance and the new NICE cks guidance.

He should now know that ALL dopamine agonists are relegated to last resort drugs.

Let us know who you see and whether he or she is up to date.

[Gizmo1coco in reply to Joolsg]

I started gabapentin 3 weeks before my withdrawal. I’m taking 3 x 300 mg. I do find my vision is blurry which seams to be a side effect of this drug.

I going to reduce by another 1/2 tablet tonight which I’m not looking forward to.

I will ask all these questions you have stated thank you.

I’m seeing a Dr Alok Tyagi at Rosshall and let’s hope he is up to date with all the new guidance.

[Joolsg in reply to Gizmo1coco]

Are you taking the gabapentin throughout the day? For RLS- you take at night only. So take 600mg 2 hours before normal bedtime and 300mg 4 hours before normal bedtime.

Ask for 60mg codeine or 50mg tramadol or 10mg oxycodone to take twice a night for 4 nights after each dose reduction

I don't recognise that name as one of the 'good' doctors.

If he's not familiar with the Mayo Clinic Algorithm or the AASM guidance or thd new updates to NICE cks guidance- then you will know quickly that he's not knowledgeable.

Whatever happens- do not let him talk you into another dopamine agonist.

Best of luck.

[Gizmo1coco in reply to Joolsg]

I take 300mg at 5pm and 600mg about 10pm with 2 co-codamol.

I so hope he is one of the 'good doctors' but I will soon find out when I ask if he is up to date with the guidance.

I will definitely not let him talk me into another dopamine agonist. I've started this journey and I'm not going back. I had an appointment this week with the doctors pharmacists and when I told her how horrendous the withdrawal is she asked if I wanted to go back up. Absolutely and no point have I even considered going back up.

Will keep you posted to how I get on.

I could not do it without all the help from this group. Thank you

[Joolsg in reply to Gizmo1coco]

I would take the 300mg at 8pm. Eventually- we will succeed in educating the doctors.

It's outrageous that many RLS patients know far more than any UK doctors.

[Gizmo1coco in reply to Joolsg]

Do you mean 300mg at 5 then 300mg at 8 and last 300mg at bed.

It is outrageous. When I told my doctor they say its harder to get off than heroin his response was WOW

[Joolsg in reply to Gizmo1coco]

No. 300mg at 8pm. 600mg at 10pm. Then bed. The nearer to bedtime you take the gabapentin- the better coverage you will have.

[Gizmo1coco in reply to Joolsg]

Thank you I will give that a try

[SueJohnson in reply to Gizmo1coco]

Looking him up he specializes in headaches so I don't have much hope so go there with printouts from the Nice Guidelines, the Mayo Updated Algorithm on RLS, the RLS-UK guidelines, the AASM report, the Massachusetts report on opioids. If you need to know how to find them, I can give you them. You will need to convince him to prescribe opioids.

I would recommend buprenorphine or methadone as they are long lasting. Most of the others last only 4 to 6 hours and need to be taken that often or you will have mini withdrawals. If you are prescribed one of the others be sure you are given enough to take them that often.

[SueJohnson]

If your vision problems with gabapentin do not improve in several weeks you might want to try switching to pregabalin. Although it is basically the same drug except you don't need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. Divide the gabapentin amount by 6 to get the correct dose.

Do let us know how it goes with Dr. Alok Tyagi .

[Gizmo1coco in reply to SueJohnson]

I will see how the vision goes and think about switching if it doesn’t improve.

I will keep you posted on my appointment

[donoughts]

I am also going through withdrawal of Pramipexole, now the 8 th day having been on dopamine agonists for 17 years and still never been free of RLS and insomnia. I am now a bit worried I am having a too easy time and suddenly there will be much worse to come.

Doctors in the UK have prescribed a different dopamine agonist but never told me to wean off the original drug gradually at the same time! So I had a terrible withdrawal reaction and went back to the original never giving it a chance.

Now I have been to see an Italian doctor while is Spain and she told me to specificalky wean off Pramoixole and prescribed me at the sane time Gapbapentin 600mg. I had to reduce Pramipexole by half for 14 days then reduce another half for the next 14, but keep taking Gabapentin, I hope this is why my withdrawal symptoms are not too bad, I had the first two terrible nights, then have slept with no RLS for all the other nights. It may be that when I reduce again, the reaction will be bad. I don’t know. I hope this helps this horrid condition.

[Gizmo1coco in reply to donoughts]

I’m so glad you are not too bad and long may this continue for you.

My first 8 days were horrendous and then got slowly better. I decreased again last night and now I’m back to horrendous symptoms. Spent most of last night in a bath. Today I think if I was told I won a million pounds I still would not have a smile on my face. I feel so low and flat.

My neourogist appointment has now been cancelled for tomorrow as he is sick. Got another appointment next Tuesday.

Good luck in your journey and hope we see light at the end of the tunnel soon.

[donoughts in reply to Gizmo1coco]

Hi I am so sorry sorry. It is such a beastly condition. When else has anybody been so ill they have had to spend the night in the bath. I have tried to stop it RLS by trying to sleep the other end of the bed with my feet up the wall. Still no god. I am feeling very good, but also very angry that this condition has never been taken seriously enough with doctors, never been in their training curriculum and they don't give the time. I am on the move to do something about it. I do hope you find improvements x

[Gizmo1coco in reply to donoughts]

I do this too and push myself off the headboard trying to keep my legs moving. It should never be called restless legs as that totally undermines the severity of the condition