Further to RLS has stopped

[jan_ET]

Hello further to my post re RLS stopped. Yesterday I caught up with my doctor. My full regime for treatment of RLS is as follows:

- Sleep hygiene- in my case as I have sleep apnoea - using my CPAP machine and having a yellow light on my IPhone which is timed to come on at 6pm and stops the bright light of my mobile telling my brain it is daytime) the yellow tinge actually makes me sleepy.

Mindfulness and Spirituality- practicing living in the present moment and changing my mindset to reduce anxiety and worry. This has been exceptionally helpful to me and made life more enjoyable- plus gives me a positive attitude and more energy.

- Centrally acting medications

- Management of PTSD (Prazosin)

- Iron infusion - when I had Ferritin levels checked I was down to 26 and with one infusion am now up to 86.

Also upon talking with my doc yesterday we tracked back to when my RLS went seriously bad and stayed that way for 17yrs was when I took a sleeping pill called Imovane and even though I stopped it (doctor at the time did not make the connection) the RLS continued. Four nights ago I took one as had stresses at work and just couldnt sleep- Stupid me!!! Legs tried hard to start but because of my Minipress they couldn’t quite get hold- So lesson learned - can never again take Imovane - and it is now on my patient chart. Other meds I cant touch are anything for heart burn or GOAD meds, anti- nausea meds - so am leaning towards natural alternatives with no chemicals in them.

My doctor is doing more research and so am I.

Hope this helps someone and I know we are all different so need to look at everything we take that has chemicals and or preservatives included.

Also I learned on this forum which I took to my doc was if on large dose as I was of a Dopamine med eg Sifrol(Pramipexole) x 3 x nightly - which I have to wean off!!!!!! When I staggered the dose and took instead of 3 together took 1.5mcgs in two doses three hours apart - this eased the RLS by about 80%

So all of the above has ceased the RLS for now but I don’t kid myself that I’m cured. I believe I have a reprieve for now but must remain ever vigalent about any chemical I put in my system, any change in routine, have to be careful of exercise and when I do it, keep anxiety to minimum, take meds at exactly same time and take time out to just be as peaceful as possible- and that has enabled the cease fire for now!!

I would like to send my utmost thanks and love to each and everyone one on this forum as you have saved my life and sanity by your honest sharing and support - God Bless you 🙏❤️

[involuntarydancer]

Well done, jan, for taking such positive steps and thanks for posting what is helping you.

Current recommendations for iron levels in rls is to get them to over 100 so you could consider getting another infusion. I have heard of people who get great relief when their levels go over 300. Also be aware that in most rls sufferers iron starts to reduce again almost as soon as it is raised (though there are exceptions - I think Madlegs and Elisse both problems with too high iron) so you will probably need a supplement even though they are now high.

In spite of all the improvements, you may need to go through the awful process of withdrawing from pramipexole at some stage but in any event be sure not to raise your dose further at present.

A really good natural remedy for nausea (proved in actual test as opposed to just anecdotally) is ginger. I use chrystalised ginger or you can get it dried in capsules. You can also make a delicious infusion with fresh ginger root chopped and steeped in hot water with some honey added.

[jan_ET in reply to involuntarydancer]

Thanks for the reply involuntary dancer - I will try the ginger and yes my doc has my second iron infusion ready to go and last night started reduction of Sifrol- plus Amitryptoline nearly gone - down to 20mgs from 750mgs per night- slow but sure!! What a job it has all been! Omg - I don’t know how any of us survive the torture do you? X Jan

[Graham3196 in reply to jan_ET]

I am interested in the success of iron infusions Do you and your doctor have a plan to reach a certain level? I am trying to get my s Ferriten level up to 200 in the very short term and if I still have symptoms then I will aim for as high as necessary with a bit of caution at about 500. (I have mentioned elsewhere that 500 is considered the top of the normal range by one of the big pathology labs in Australia)

[jan_ET in reply to Graham3196]

No Grahame she is happy with 86 for the moment I will have another one in a couple of months - Jan

[Parminter in reply to Graham3196]

Graham, I had iron infusions very recently, of iron sucrose which is the cheapest but takes the longest to get deep into the brain. The iron goes first to the bone marrow (95%) then to the liver (4%) then the remainder to the rest of the body, with a measly 0,1% to the brain. (THese figures may be slightly off, but you get the picture). Odd. Then, when the marrow has made lots of lovely red cells, and they get old and die, they go to the spleen. Then the spleen harvests the iron and the brain gets a bit more! Yay!

So, I had infusions four weeks ago, 500mcg (mg?) over three sessions. You have to be slow and careful. After two weeks my serum levels had gone from 20 to 250. But that is the serum level, not the brain-iron level. That may take from six weeks to a couple of months to reach optimum.

Nevertheless, I have had five good nights of sleep since the infusions, which is five more than usual. Those nights are interspersed with horrible nights, but on the whole I feel a whole lot better and able to cope even after the heeby-jeeby nights.

I have hope.

[Graham3196 in reply to Parminter]

Thanks for that. The five good nights could be regarded as proof that the iron is a significant part of your problem so you are heading in the right direction. Good Luck Are you going to try for 300 next time? Are you taking any iron orally to try to maintain the level as long as possible?

Cheers

Graham

[Parminter in reply to Graham3196]

I am rather afraid to count my chickens before they hatch. We have gone down so many wrong roads!

But yes, I cannot think that it is anything else but the iron.

I am taking Floradix Iron Supplement at the moment, or Iron bis-glycinate daily. Both are very easy on the stomach and do not cause constipation. I could drink the former like a good lager on a Summer day, it is just too delicious!

I will have my iron levels checked again in a couple of months, or sooner if it all goes downhill.

[LoisTonya in reply to involuntarydancer]

I endorse the use of ginger for nausea, indigestion and any stomach problems. I was first given it by an old woman in Antigua 50 years ago. She went into the garden to take from the growing plant. It worked then for travel sickness and has worked for similar problems ever since. Crystallised ginger is easy to carry around and take at any time.

[jan_ET in reply to involuntarydancer]

Hello Involuntary dancer, you were spot on about withdrawal of Sifrol (Pramipexole) on last Saturday my doc started the withdrawal phase by dropping half a tab - next day my RLS tried to start- one strong jab to my foot and tingles in the hips but it couldnt quite get hold so I can see I have to drop the dose more carefully by only quarter of 250mcg so just dropped quarter last night and this morning all is well again- what a horrible med it is!! I am going to add another Minipress tonight as my doc suggested- thank you so much for your continued support- you are a life saver- also think I will add an iron supplement - is there one you can recommend? Think this would be wise after reading Grahame post. - thanks again 🙏😍

[kelirock]

Hello jan_ET. Could you be more specific about how the GOAD medicines affected your RSL and what do you take now as a substitute?

[jan_ET in reply to kelirock]

Within about half an hour of taking the med my legs and feet started to move with pins and needles in hips legs and feet. Only thing I can take is something I get from Iga grocery store Zantac - Jan

[LoisTonya]

Hi Jan,

What a challenge to sort out! You seem to be getting there. Well done for persevering.

[jan_ET in reply to LoisTonya]

Thanks but I have no choice but to keep trying - RLS is torture!!!

[Whippetmama]

Hi Jan and good for you! Zantac is ranitadine and should be available at pharmacies everywhere. It is an old acid reflux med. Zantac is the brand name. You could try a generic ranitadine to see if they work for you and save some money in the process. The only thing that would be different are the inert ingredients.

[jan_ET in reply to Whippetmama]

Thanks is Ranitidine available in pharmacies easily accessible?

[Whippetmama in reply to jan_ET]

Yes - everywhere. You will need to read labels but take your glasses. There is a different anti-reflux drug called Fanitadine. Do not confuse them, although the Fanitadine might work for you, too You could try it

[stulaine]

Hi Jan, have ordered minipress from the online Dr as it is not a use registered to NICE. what were you told about taking the first dose? do you take it with the other meds or do you have to be weaned off them?

[jan_ET in reply to stulaine]

Hi I just take it with the last meds about 8.30pm x Jan my doc is thing of upping it to 2 next visit

[jan_ET in reply to stulaine]

Oh by the way what is NICE- thanks Jan