Neurologist review

[nick-the-turk]

hi all any advise please on what questions I should the neurologist when I eventually get an appointment ?

[SueJohnson]

I gather from looking at your past posts that you were on pregabalin. Does this completely control your RLS?

[nick-the-turk in reply to SueJohnson]

No my wife has video evidence of how much my legs and arms move whilst I sleep more like catnap for me to take when I see neurologist she is also coming with me to try and make him understand that I'm not the only one suffering in this marriage and how much it effects the whole family ! The only thing pregabalin along with codeine phosphate for pain does is stop me going insane really and sane enough to keep working as a postman,

[nick-the-turk in reply to nick-the-turk]

think what I'm saying is it maybe just takes the edge of me going mad

[SueJohnson in reply to nick-the-turk]

How much pregabalin are you taking?

[Hoochybaby in reply to nick-the-turk]

Hi NickI’m in almost the same position as you taking the same meds but when I had an appointment with my neurologist the only thing I got was to keep taking the pregabalin and codeine

I will look forward to the response you get

[nick-the-turk in reply to Hoochybaby]

I've seen one before with that response this time I'm going armed with info I've received from here and not leaving until I get answers if not I think it might be the end of me because I can't go on living like this and putting my family through it they been great by standing by me so far its every impact on everyday life that effects everyone

[Whymelord in reply to nick-the-turk]

Hi Nick,I take same meds as you and feel very much the same as you at times,I really and truly hope and pray you get the proper help from the Neurolgist, trouble is I don't believe he has answers on how to help RLS sufferers.im really feeling hopeless at the minute and wonder how long I can stand suffering, I'm 77,have a wonderful family and good husband but most nights I can't even sleep in our bed.Good luck,God Bless.

[nick-the-turk in reply to Whymelord]

Fingers crossed I get answers im 60 with a good family and haven't shared the same bed as my wife for around 12 years now its not fair on her to stay awake all night and I to have had enough with RzlS

[Whymelord in reply to nick-the-turk]

At this present minute I'm feeling much happier than I did last night because of getting some sleep with the help of Co-codamol,I've been here sooo many times.Nick we must carry on for our families sake as well as our own,I cling to the belief that Life changes with every breath we take,like me I'm sure that when you get relief from RLS you do feel life is good,God Bless.

[SueJohnson in reply to Whymelord]

I remember you were taking pregabalin. What happened to that?

[Whymelord in reply to SueJohnson]

Hi Sue,yes I am still on Pregablin75mgs twice a day,I'm weaning off Pramipexole, now taking half of 0.18mgs.dont feel that Pregablin are settling me the way they did,I'm not sure if I should increase my dose.i don't get one RLS free night now,constipation is terrible hence me trying to stay off co-codamol.Im having my BP monitored at present so unsure of what to do.when exhaustion and desperation sets in at night co-codamol is my best hope of ease.

[SueJohnson in reply to Whymelord]

Movantil is used for treatment of opioid constipation. Pregabalin won't fully work until you are off pramipexole and the withdrawal symptoms have settled. Is there a reason you are taking it twice a day? You might want to try increasing it at night. 75 mg is a low dose so once you are off pramipexole you can definitely increase it. According to the Mayo Clinic Updated Algorithm on RLS, most patients require 200 to 300 mg.

[Whymelord in reply to SueJohnson]

Hi Sue,thankyou so much for replying, I'm not familiar with Movantil,I would take 75mgs of Pregablin at 8pm then 75mgs at 10pm,do you think I should stop the Pramipexole now and see what happens,also I did have my ferritin checked about 9 months,I was told it was satisfactory but did not get figures.

[SueJohnson in reply to Whymelord]

You need to get the figure for your ferritin. It needs to be 100 or more. What is satisfactory for others is not satisfactory for RLS. If it is not over 100, post back here so I can give you some advice on how to increase it. If it has been 2 or more weeks on your current dose of pramipexole and the symptoms have leveled off, you could stop it. When you do, expect your symptoms to increase. You might ask for a prescription for Movantil since you might need to increase your co-codamol. Or you could try OTC Miralax for constipation. On the pregabalin, there is no need to take it in two doses like one does with gabapentin. Instead take150 mg 1 to 2 hours before bedtime. 150 mg is a low dose so after you have been off pramipexole for a few weeks, you could increase it by 25 m every couple of days until you find the dose that controls your symptoms. You may or may not need co-codamol then. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg of pregabalin daily."

[SueJohnson in reply to Whymelord]

Also have you had your ferritin tested?

[SueJohnson]

Have you had your ferritin checked?

[nick-the-turk in reply to SueJohnson]

had blood test about a month ago and asked doctor if they could check ferritin and is it trans ferritin level and all came bach satisfactory

[SueJohnson in reply to nick-the-turk]

Do you have the actual ferritin number. What is satisfactory for others is not satisfactory for people with RLS. It needs to be above 100.

[nick-the-turk in reply to SueJohnson]

When I rang for results all they said was all satisfactory should I ask for numbers ??

[SueJohnson in reply to nick-the-turk]

Yes

[nick-the-turk in reply to SueJohnson]

Just rang serum level 170 so sounds ok

[SueJohnson in reply to nick-the-turk]

Serum iron is not the same thing as serum ferritin. Did they say 170 was for ferritin?

[nick-the-turk in reply to SueJohnson]

Just said serum levels

[Joolsg]

Hi Nick,

Great to see you back after so long. How are you? Is the pregabalin still working for you? If you're seeing a neurologist ask him about your blood tests and whether he will consider iron infusions and whether he's familiar with the latest Mayo clinic algorithm on RLS. Who are you seeing?

[nick-the-turk in reply to Joolsg]

Still waiting for date but it will be at Musgrove Park hospital Taunton Somerset in the UK ive seen him before without much success but I'm older and hopefully wiser now and will go in armed with information lol

[nick-the-turk in reply to nick-the-turk]

was just wondering if there was advance anywhere worldwide i could go armed with

[Joolsg in reply to nick-the-turk]

The Mayo Clinic guidelines are the best resource. written last year by the top RLS experts. They recommend iron infusions as first line treatment then pregabalin and gabapentin. Serum ferritin needs to be above 300 for many RLS patients and I'll bet your levels are nowhere near that.However, it sounds like the pregabalin isn't giving you the best cover and you have PLMD which isn't giving you restful sleep. The Royal Cornwall Hospital are now aware of iron infusions for RLS and there is a useful case study you can show your neurologist. If I were you, I'd push for an iron infusion and see how that goes.

It can show dramatic improvement in 60% so odds are excellent.

If it doesn't work after a month, then you can consider low dose opioids.

Dr. Buchfuhrer, who co wrote the Mayo algorithm, believes that gabapentin and pregabalin don't work well for those who had severe augmentation and withdrawal on ropinirole and pramipexole. Like me, you had horrendous augmentation and withdrawal so I think you are someone who may not respond well to pregabalin.

ncbi.nlm.nih.gov/pmc/articl...

mayoclinicproceedings.org/a...

[nick-the-turk in reply to Joolsg]

Thanks i have some reading to do im sure . I a little confused because my doctor done blood test about a month ago and I asked if they would check ferritin levels and trans ferritin levels when I rang for results the receptionist said all was good no need for appointment to see doctor should I ring again and ask her for the figures

[Joolsg in reply to nick-the-turk]

Definitely. They'll tell you ferritin is fine at 15 but that's catastrophic for RLS. We need much higher levels in the blood to push some through to the brain. Doctors aren't taught anything about RLS in the UK and they have no idea of links to low brain iron.Ask for printed copy so you can show neurologist. Serum ferritin should ideally be above 200, serum.iron above 60.

[nick-the-turk in reply to Joolsg]

Hi its me again I've just rang my doctors and my serum level is 170 so sounds like there OK

[Joolsg in reply to nick-the-turk]

That does sound good to be honest & means you would likely be refused an infusion on the NHS. See if taking ferrous bisglycinate 50mg at night just before bed makes any difference. I suspect you may need to try low dose opioids next. I didn't respond to tramadol or Oxycontin but many do.

See what the neurologist has to say.

[nick-the-turk in reply to Joolsg]

I take codeine phosphate along with the 300mg pregabalin at night

[Dotmowatee in reply to nick-the-turk]

Dr Robin Fackrell at The Circle hospital in Bath is very good but you have to pay unfortunately.

[nick-the-turk in reply to Joolsg]

still on pregabalin 1x150 first thing in morning 1x300 at night trying to mess around with times Ii take the night one

[nick-the-turk in reply to nick-the-turk]

Nice to talk to you again apart rls hope I find you well

[Joolsg in reply to nick-the-turk]

Nick I was in a pretty bad way for 5 years after Ropinirole withdrawal. Oxy and pregabalin helped a little but I still had very severe RLS every night and about 4 or 5 hours broken sleep.Someone posted that they were in the same position on the same meds and had been given Buprenorphine with miraculous results.

I pushed for it, started 0.4mg at night in July 2021 and have zero RLS. Sleep 8 hours every night.

It has been miraculous.

Mention it to your neurologist but see if iron infusions help first. I had an iron infusion but it didn't help.

[coldfeet7 in reply to Joolsg]

Have you heard of its use for PLMD? I have only slight RLS during the day (slight urge to move ankles). In the evenings it can become bothersome if I eat lots of carbs (urge to move right leg and ankle). I cut back in my caffeine (one cup of tea now) and eliminated coffee (even decaf - so sad). It seems a little better, but it hasn't been eliminated (shown in the PSG) and my sleep apnea is well controlled.

My Ferritin is 400, so no way to help there.

I augmented in a couple months on Parmipexole and Gabapentin itching was not tolerable and Pregabalin hasn't help. I am really drowsy in the morning with just 50mg so don't see the need to up it if I am basically to reduce drowsiness from lack of sleep if it makes me just as drowsy.

[Joolsg in reply to coldfeet7]

Most meds used for RLS are also used for PLMD as they target the same receptors in the brain. Have you had a sleep study to confirm PLMD? I only ask because most people don't know they have it unless their other half complains about being kicked all night.I think if gabapentin gave you itching & pregabalin leaves you drowsy the next day, you could discuss changing meds with your doctor.

Incidentally, coffee isn't a trigger for everyone. I never touched the stuff until I read that it helped many people on here. I started drinking coffee when RLS woke me in the night and it stopped my RLS. I now drink about 7 cups a day.

I hope you find a medication that helps.

[coldfeet7 in reply to Joolsg]

Oh yes. It was 80/hr in my first study and 15/hr in my second. But neither were long sleeping spells. I can't sleep much during a PSG.

As you may know, PLM varies a lot from night to night, even hour to hour. I wish there was a consumer level device for monitoring it.

My current Dr. got promoted so I guess it is time to see the replacement.

[SueJohnson in reply to nick-the-turk]

Take it 1 to 2 hours before bedtime.

[LotteM]

Nick, you asked for new information. Well, there is some. The most important is the updated guidelines for the treatment of RLS published last year:

mayoclinicproceedings.org/a...

In the last few years several people in the UK have successfully asked for and been given buprenorphine to deal with their rls. Joolsg is among them. In the US methadone is mor commonly prescribed, but in the EU and UK doctors seem less willing or unwilling to prescribe it. However, the have far fewer problems with buprenorphine, brand name Temgesic.

Please do consider changing to Prof Walker. Or: have your neurologist contact Prof Walker for advice. Make sure you have a good but short summary of tour problems and history. And make sure you bring the relevant info on current treatment, including opioids.

I hope you get a better treatment soon, you must be exhausted with such por quality sleep.

Finally, relatively recent work on adenosine, another neurotransmitter has brought attention to dipyridamole as a possible treatment. It has been tested but only in a small group. It works for some nit may mot last. And many report headaches on it.

Homework to do! And so sorry to see you back as it means your current treatment is not satisfactory.