NOT MUCH BETTER BUT NOT GIVING IN YET

[nick-the-turk]

Hi all still bouncing off all walls 4 nights with little or no sleep on this new med tramadol with new med not doing much another appointment next tuesday doctor said yesterday that new med should be working well by then [ not holding my breathe ].Getting massive headaches put that down to no sleep been a few nights that i thought id be better off not here but got good support around me here and you folk on line my wife has been a rock at times when start kicking of in temper in the early hours she calms me down listens to my moaning so not going to give up yet,will post again soon thanks all

[Hidden]

Hi Nick. what new med..? Glad your wife is giving you loads of support and can calm you down. You cant give up you have come this far.

[Pippins2 in reply to Hidden]

By new med I think Nick is referring to Pregablin not Tramadol .He said before he was starting on Pregablin. Good luck Nick x

[Hidden in reply to Pippins2]

Of course it is, i forgot he had just started on the Pregablin. and needs for it to build up in his system. Thanks Pipps.

[involuntarydancer]

I think Nick posted previously that he gets some relief/distraction from the rls at work - that sounds like killing two birds with one stone to me.

You are fortunate to have a supportive spouse, Nick. It make a huge difference for me when I was going through the d/a withdrawal. Good luck with the next few days on the new meds. Would be interested to know what they are.

[nightdancer in reply to involuntarydancer]

NIck's new med ( he said on another post) is pregabalin/Lyrica. And, he has Tramadol to help with the withdrawal.

[mantel]

desperate times mean desperate measures, smoke a joint , I am sure it will help.

[Hidden]

Nick, as numerous people on here have found iron in the form of ferrous bisglycinate helps and some people such as myself get immediate relief with very first pill. Here's a public link for the ferrous bisglycinate and some reviews regarding its effectiveness in terms of RLS:

amazon.com/Foods-Iron-Ferro...

[Hidden]

amazon.com/Foods-Iron-Ferro...

[Hidden in reply to Hidden]

I wouldn't wait till you're done with the worst of the withdrawal, I would try it sooner rather than later. That's just me.

[Hidden in reply to Hidden]

And if you plan on taking the iron for awhile you should consult with your doctor or at least give him a heads up as to what you are doing.

[Joolsg]

Hi Nick,

I still remember that week last year when I was going through the worst withdrawal stage. I remember emailing Dr Buchfuhrer at the Southern California RLS group and he replied within 3 hours and was emphatic that during the really difficult stage ( first 10 days after taking the last dopamine pill) I should take more tramadol to get me through. He suggested 100mg every 4/6 hours. Try that.

I also found leg/back massages with warm oil really helped to distract me. My hubby, bless him, stayed up for hours with me massaging my legs and back until I was distracted enough to get some brief ( 20min) sleep.

I was so tempted to take another dopamine pill to get even half an hour's rest but I am so glad now that I didn't as I made it through and you will too Nick. You have been so strong and made it this far, you can do it and it will get better and you will get some better nights. I remember Elisse and Pipps saying those words to me and they were right.

I did try cannabis to help and it did allow me about 1 hour's sleep during withdrawal but think I got hold of stuff that was too strong- I ended up with a panic attack after a week.

I think suggestion of ferrous bisclycinate might be useful only when you are through the worst of withdrawal. It did ABSOLUTELY NOTHING for me and several others who have tried it.

You are strong Nick, you can do this.

Take care,

Jools

[nightdancer in reply to Joolsg]

Dr. Buchfuhrer is the best!! And, when he gets emphatic, it is time to listen. Good job, joolsg for emailing him. Don't know what I would done without him the last 21 years. many, many emails! Some day I hope to meet in person, but he and I are on opposite coasts. It almost happened, but then family things happened and I could not get to LA. he had cleared his schedule for the afternoon for me, too. so I was VERY disappointed not to be able to make it.

[mantel in reply to Joolsg]

How do you email Dr bruchfuhrer ? Not planning to do that at the mo but might want to one day.

[Hidden in reply to mantel]

How have your symptoms been lately and what are you taking?

[Joolsg in reply to mantel]

Go to his website

rlshelp.org

click on "patient letters"

Then there is a little box saying "email"

click on that and follow his instructions on spelling and grammar.

I emailed him in August 2016 at 2am in the morning UK time and he had replied to me within 4 hours.

You can also use the search engine on his site to read through all the patient letters he has received and his replies. Look up the later pages though for the most up to date advice on RLS as there are letters going back 10/15 years and RLS thinking/advice has changed a lot in that time, particularly with regard to dopamine agonists.

He is, as nightdancer says, the best.

Jools

[mantel in reply to Joolsg]

Thank you so much for that information Jools . Very helpful. It's a shame we don't have a UK version of Dr B'

[Joolsg in reply to mantel]

I absolutely agree Mantel.

I've been waiting since the beginning of Aug 2016 for an appointment with Prof Ray Choudhuri ( the nearest thing we've got to Dr B in the UK) but, according to people who've posted on here, I will probably see a junior member of his team and they won't be able to tell me anything that I haven't already found out from the very knowledgeable people on here.

The appointment came through last week and I'll see someone on 24 March. It will be interesting to see if they can add anything to what I've found out from this site and from Dr Buchfuhrer.

jools

[Hidden]

The best suggestions from Jools, who has been there and come through it all and knows just what you are going through Nick. Funny enough, while i was awake with my RLS in the night, i was thinking about leg massages that maybe your wife could do for you. VERY hot baths can really help as heat can be a relief for some. I have sat in a bath of hot water enough to cover my legs to get relief before. Some people have been known to fall asleep in the bath.

[nick-the-turk in reply to Hidden]

your right about hot baths and i do fall asleep in there for 5-10 minutes. and leg rubs tried but cant stay still long enough lol and i have taken the rest off the week off work getting massive headaches put that down to lack of sleep lets hope so thanks for advice i do take it all on board

[nightdancer in reply to nick-the-turk]

Good on you for taking the week off from work and if you have to live in the bath tub, do it. Good luck, and keep communicating!

[Hidden]

5-10mins nap is better than none. Keep getting in the hot bath. Soooo pleased to hear you have taken time off work you might need another week next week, take it if you feel you need more time. I would say yes that the headaches are probably down to lack of sleep. I wish your doctor could have given you a pain med thats a bit stronger than the Tramadol. Take Jools advise on what Dr. B told her about taking the Tramadol. Dr. B is the RLS expert across the pond and i have great respect for him and what he says, i would listen to him above any doctor.

[nick-the-turk in reply to Hidden]

have been taking the tramadol would you have any idea if any one is any nearer to finding a cure for RLS because this as knocked me for six and just want to get a normal life back like us all i suppose

[sparker3003 in reply to nick-the-turk]

RLS under control here with multi vits, 450mg of preagablin and 150mg tramadol. Foot/leg pain is not easy but i can sleep so thats a massive improvement. Good Luck every1

[Hidden]

No cure in sight Nick, RLS is a complicated condition and the experts are still scratching their heads on finding out the cause. Once you get the withdrawals out the way and start sleeping again with still taking tramadol and the pregablin, your life will be back to "normal" as having this condition we cant take any of the meds for granted, everyone still mostly has blibs with their meds nothing usually works 100% BUT, you will not have to go through augmentation again all the time you dont take another dopamine med.

[nightdancer]

As Elisse has said, there is NO cure on the horizon, so we have to find the treatments that work for us individually, the best. My meds do work 90% of the time, and for me that is a victory! Compared to what it was like going thru the trial and error phases, this is heaven for me. I had the leg pounding, "want to cut my legs off" RLS. Of course, the meds I take and my other things I do, are not for everyone, but a lot of people are helped by opiates when nothing else works. Hang in there , Nick. The biggest studies are being done at Johns Hopkins and they are to do with long term iron use, and the other is long term opiate use, (18 months, so proper studies). These studies came about basically because of the augmentation issue, Unfortunately, studies have to be driven by $$$$$ , and there is not much RLS $$$$ out there. The only time we got much action on studies is when the drug companies thought they could cash in back in the early 2,000's. So, I commend the doctors at Johns Hopkins for getting these studies done. For those who do not know, Johns Hopkins is in the USA.

[mantel]

I wonder if some kind of implant that blocks the the signals to/ from the brain ( like they use for phantom pain in a lost limb may be ) may be an option in the future. That would be preferable to all the drugs we have to take at the moment. But I suspect RLS has more than one cause so will always need more than one cure. No one size fits all. As others have said , until they find the cause/ causes we won't find cures.